Podcasts about nhs england

This week Nick and Emma talk about list cleaning, after an analysis by Nick showed that 350,000 patients have been removed from GP practice lists, resulting in a loss of around £45m from practice funding. Nick explains why this happens and the impact it has on individual practices.They discuss GP contracts, looking at the first area in England that has agreed a local variation to PCN contracts, BMA fears about what neighbourhood and integrated health organisation contracts could mean for general practice and whether financial pressures on the current GP contract could make GPs back an alternative model.And they look at the impact successive governments' obsession with GP access has had, after a report from the House of Commons public accounts committee found that practices struggle to provide the care frail, older patients need because they are overwhelmed with targets linked to improving access.Our good news story this week is about an initiative in Greater Manchester that has helped cut hazardous prescribing.This episode was presented by GPonline editor Emma Bower and deputy editor Nick Bostock. It was produced by Czarina Deen.Useful links'Aggressive' list-cleaning drive strips 350,000 patients from GP practices'We're overwhelmed' - practices swamped by scale of patient removalsGPs agree first local PCN contract variation in £10m neighbourhood dealHospital-led general practice 'likely' outcome of government NHS plans, warns BMANHS England has overloaded GPs with access targets, MPs warn Hosted on Acast. See acast.com/privacy for more information.

The country feels stuck. But can Britain prosper again? On the Prospect podcast this week, Prospect editor Philip Collins is joined by Ravi Gurumurthy to discuss this question. Ravi is CEO of Nesta, which is a research foundation and “innovation agency”. He is a lead non-executive of the Department for Energy and Net Zero and sits on the board of NHS England. Writing in a personal capacity, he also penned the cover story in this month's magazine (which you can read in full here.)Phil and Ravi discuss what changes the current government could make to re-energise the country, and debate everything from housing to data. Can the UK get the energy for a transformation? Hosted on Acast. See acast.com/privacy for more information.

In this episode of Health on the Line, host Adam Brimelow looks ahead to NHS ConfedExpo 2026, featuring interviews with Sir Jim Mackey, Chief Executive of NHS England, and Sir Ciarán Devane, Chief Executive of The NHS Alliance. As the Ten Year Health Plan approaches its first anniversary, Adam explores with both leaders how much progress has been made over the past year and crucially, how much meaningful transformation is possible at a time of constrained funding and sustained operational pressure. Elsewhere in the episode, Adam is joined by Stuart Hoddinott from the Institute for Government and Anu Singh, Chair of the Integrated Care Boards spanning Leicester, Leicestershire and Rutland, to reflect on the government's plans to restructure the NHS and abolish NHS England. The episode also examines the implications of Alan Milburn's interim report on young people and work. Adam is joined by Rebecca Gray, Director of The NHS Alliance's Mental Health Network, and Dean Royles, Chief Executive of NHS Employers, to explore what the findings mean for the future of the NHS workforce. Health on the Line is an NHS Alliance podcast, produced by HealthCommsPlus. Hosted on Acast. See acast.com/privacy for more information.

The Labour government has embarked on a reorganisation of the NHS in England. And now the Health Bill (also known as the ‘NHS Modernisation Bill') has been introduced in parliament to effect the changes. Key provisions include merging NHS England into the Department of Health and Social Care, reforming data sharing to support creating a single patient record and shaking up patient voice functions by abolishing Healthwatch. But will any of this make a real difference to patients and the public? We take a closer look at what's in the bill and what it really means, and ask how Wes Streeting's departure as health secretary is likely to affect the government's reform agenda. Hugh Alderwick, Director of Policy and Research at the Health Foundation, is joined by: Clare Gerada, a GP and a crossbench peer in the House of Lords. Nicholas Timmins, an author and journalist who writes about the welfare state and the NHS and a senior fellow at the Institute for Government. Show notesUK parliament. Health Bill.  Department of Health and Social Care (2024). Independent investigation of the NHS in England: Lord Darzi's report on the state of the National Health Service in England.BMJ (2026). Health bill brings NHS management back into government.  NHS Assembly (2023). NHS in England at 75: Priorities for the future.  The King's Fund (2026). Before the next bill lands: what history tells us about NHS reorganisation. Health Foundation (2026). Health bill hands power to ministers, but misses the biggest health challenges. 

The prime minister has accused Elon Musk of 'interfering' in UK politics, after he posted repeatedly on X about the police's treatment of Henry Nowak.NHS England says it will ban staff from wearing political badges as part of measures aimed at tacking antisemitism and other forms of racism. Britain's only serving female commando Lieutenant Lily-Mae Fisher has been named as one of the three members of the Royal Navy who died in a helicopter crash yesterday. She was on board the Merlin 4 aircraft alongside 42-year-old Lieutenant Commander Chris Gayson and 24-year-old Petty Officer Owen Green.Scotland's First Minister John Swinney has said his party may have claimed back tax on items purchased by its former chief executive Peter Murrell, who last week admitted embezzling more than 400 thousand pounds from the SNP.01:56 Henry Nowak treatment 06:50 NHS antisemitism measures 10:06 Helicopter pilots named 12:05 Lebanon ceasefire 15:04 SNP on Murrell's tax 17:46 World Cup water bottles 20:02 Teacher shortages 21:54 Hampshire rape sentencing 24:30 Strikes in Crimea 27:59 Bob Harris tribute(Image: Reuters)

Emma and Nick talk about the ongoing dispute between the BMA and the government about this year's GP contract and what the BMA will be asking GP practices to do from 1 June as it steps up collective action. They discuss a vote at the UK LMCs conference earlier this month, which saw LMC representatives back exploring the radical step of moving towards a hybrid NHS/private model for general practice - and the BMA's confirmation that it plans to ballot the profession on this.They look at an update NHS England published on the GP contract at the end of last week as well as looking ahead to the government's new NHS workforce plan, which is expected to be published next month, and what that needs to do to ensure there are enough GPs to meet the demands of an ageing population. And they talk about the government's new Health Bill and what that means for general practice - in particular the plans for a single patient record. And we'll be talking at This episode is presented by GPonline editor Emma Bower and deputy editor Nick Bostock. It was produced by Czarina DeenUseful linksBMA sets out next steps as GPs ramp up collective actionBMA to ballot GPs on switch to 'Plan B' semi-private contractGP leaders vote to explore NHS/private 'dentist model' for general practiceWes Streeting's legacy as health and social care secretaryNHS clarifies locum rules on GP reimbursement in contract updateWhat does the new Health Bill mean for GPs?GPs should be fastest-growing part of NHS workforce, experts say Hosted on Acast. See acast.com/privacy for more information.

It has been a tumultuous time in UK health politics. UK Health Minister ,Wes Streeting, has freshly resigned. What does this mean for his newly introduced NHS Modernization Bill as it heads through Parliament? Together with Hugh Alderwick, Director of Policy and Research at the Health Foundation, we unpack the bill's sweeping centralization of power, the abolition of NHS England, and the contentious role for US tech firm Palantir in the new NHS. And, we explore a major milestone for women's healthcare. A condition affecting an estimated 170 million women globally has officially been renamed from Polycystic Ovary Syndrome (PCOS) to Polyendocrine Metabolic Ovarian Syndrome (PMOS). Rachel Morman, Chair of the PMOS charity Verity, joins us to explain why dropping "cysts" from the name is a vital step toward recognizing this as a complex, multi-system condition, and how this co-designed change will fundamentally reshape diagnosis, treatment, and future research. Further reading: Health Bill brings NHS management back into government PMOS: What's in a name? Everything PCOS name change to PMOS must be managed to avoid confusing patients, says expert

This week Talking General Practice is looking at the National Neighbourhood Health Implementation Programme - or NNHIP. This is the NHS England and government programme to support the development of neighbourhood health with 43 pioneer sites across England leading the way to test how integrated neighbourhood teams and neighbourhood approaches can better support patients.To find out what this looks like on the frontline, Emma speaks to leaders from two of those pioneer sites. Dr Zalan Alam, a GP in Rochdale, discusses his work in intermediate care and the importance of building trust across care boundaries to tackle frailty and reduce unnecessary hospital admissions.Meanwhile, Rachel Stead, strategic PCN manager for South Sefton PCN, shares the success of their innovative adverse childhood experiences programme and highlights the need for infrastructure and funding to ensure neighbourhood working is sustainable for general practice.Zalan and Rachel discuss the reality of integrated working, what the future could hold, and why general practice must remain the cornerstone of any successful neighbourhood model.This episode was presented by GPonline editor Emma Bower. It was produced by Czarina DeenUseful linksAs part of the MIMS Healthcare Network, GPonline has produced a new report for our subscribers on neighbourhood health - view the report here.National Neighbourhood Health Implementation Programme websiteSefton's adverse childhood experiences programmeCould new PCN rules make neighbourhood contracts redundant?MIMS Learning LiveMIMS Learning Live South is returning to London on Friday 12 June 2026, and tickets are free to book.This is your chance to boost your clinical know-how, connect with peers from across the UK, and gain fresh insights that can make a real difference in your patients' lives. This year's clinical programme covers issues including obesity management, paediatrics, women's health and cardiology.We're also running a GP Business hub stream aimed at GP partners, practice managers and PCN managers, which will cover practice finance, neighbourhood working, using AI in practice and how to meet the challenges of rising patient demand.Get your tickets here www.mimslearninglive.com/south Hosted on Acast. See acast.com/privacy for more information.

In this first episode of S5, Catherine Asta is joined by award winning advocate Tumi Sotire, a British-born Nigerian with dyspraxia and founder of The Black Dyspraxic, a platform dedicated to championing intersectionality within neurodiversity.Together they unpack common misconceptions about dyspraxia, why it is often misunderstood as ‘just clumsiness' and how it can affect everything from movement and coordination to organisation, memory, processing and confidence.Tumi shares his own experience of growing up as a Black dyspraxic child, reflecting on diagnosis, bullying, education and the importance of understanding neurodivergence through an intersectional lens. The conversation also explores the hidden emotional and financial costs of dyspraxia, along with the barriers many families face in accessing support.Catherine and Tumi discuss the overlap between dyspraxia and autism, including the reality that dyspraxia is a common co-occurring condition for autistic people. They also explore practical supports and adjustments, from occupational therapy and assistive technology to breaking tasks down into manageable steps and recognising individual strengths.This is a hopeful conversation about self-understanding, advocacy and creating environments where neurodivergent people feel supported to thrive. Tumi reflects on the importance of recognising strengths alongside struggles and why helping children believe in what is possible can make a lifelong difference.What's on at Autism Central?Subscribe to our FREE newsletter⁠⁠Explore our FREE support, funded by NHS England - 1:1 coaching, online events and resourcesConnect with Tumiwww.theblackdyspraxic.comInstagramConnect with Catherine WebsiteInstagram Books: Rediscovered and Still Living

We discuss Wes Streeting's tumultuous 22 months in charge – and analyse the Health Bill he has left in his wake, which was published on Thursday.The bill will give ministers sweeping new powers, as well as abolishing NHS England, and make important changes affecting foundation trusts, integrated care boards, and councils. The HSJ Health Check podcast welcomes Hugh Alderwick, Health Foundation director of policy and research, to help unpick the 200-page legislation and what it will mean for the service.

Tom Bartlett spent 22 years inside the NHS. For three and a half years, he led the 150-person engineering team at NHS England that built the £330M Federated Data Platform with Palantir.He a month ago and he's the only insider speaking publicly about what the platform actually does, what it costs, and whether the NHS has any credible alternative.We cover the architecture, the cost, the CLOUD Act, the BMJ exposé, the conflicts of interest at Chelsea & Westminster, and whether ministers should trigger the break clause.

In our regular news review, the GPonline team talks about advice and guidance after NHS England was forced to clarify that there was no national target for diverting GP referrals. They also look at some new guidance from the BMA on advice and guidance and whether GPs have been involved locally with the development of controversial single point of access systems that NHS England say will overhaul referrals.They discuss the state of the GP partnership after a private company, Operose Health, approached GP partners with the offer to ‘liberate them' from the pressure of running a practice. And there's a brief look ahead to the UK LMCs conference, which starts on 13 May.Our good news story this week is about a practice in North Yorkshire that has been saved from closure.This episode was presented by GPonline editor Emma Bower, deputy editor Nick Bostock and senior reporter Kimberley Hackett. It was produced by Czarina Deen.Useful linksCan NHS England bring GPs on board with advice and guidance reforms?NHS rules out 'national target' to cut GP referrals in advice and guidance updateBMA hails progress in talks with DHSC as GP collective action deadline nearsPrivate provider offers to 'liberate GP partners' from running NHS practicesGPs to debate quitting NHS amid warnings over 'Amazon-style' accessPractices rally round to stop village losing GP services Hosted on Acast. See acast.com/privacy for more information.

In this episode of Advanced Practice Weekly, we explore workforce planning through the lens of advanced practice. NHS England guests share practical approaches to workforce redesign, from defining the problem to implementing sustainable solutions. The discussion covers real-world examples, tools, and lessons learned to help advanced practitioners and leaders plan roles that meet demand, improve quality, and align with national priorities. A full transcript of this episode is available on our website - https://www.england.nhs.uk/long-read/work-force-planning-for-advanced-practice/ Please get in touch if you have any questions regarding this episode - england.acpenquirieslondon@nhs.net

In this episode, we celebrate 10 years of the Participant Panel and explore how genomic research is being guided by patient and participant voices.  Made up of people who have consented for their genome, or the genome of their loved one, to be included in the National Genomics Research Library, the Panel plays a vital role in shaping how research is designed, how data is used, and how genomics is communicated. From influencing policy discussions to to advising the Genomics England board, their work helps ensure lived experience is embedded from the very beginning.  Over the past decade, the Panel has driven meaningful change. From advocating for greater transparency and accessibility, to challenging how the genomics community talks about genetic conditions. But beyond the impact, this episode focuses on the people behind the work: their motivations, experiences, and the realities of representing a wider community.  Our host, Sharon Jones is joined by:  Kirsty Irvine – Chair of the Participant Panel and member of the NHS Genomic Medical Service People and Communities Forum  Lisa Beaton - member of the Participant Panel, panel member for the North East and Yorkshire GMSA and research and development for Harrogate Hospital Foundation Trust  Frances Allan – member of the Participant Panel and member of the following:  CRUK Women+s Cancers PPIE at Cambridge MHRA Yellowcard Biobank Northumberland NHS health forum Ovacome Healthforum IMPRESS cancer diagnostic tool study participant  You can find out more about the Participant Panel in our recent Genomics 101 episode which Lisa featured in, titled ‘What is the Participant Panel?', and you can read about their timeline of achievements over the last 10 years.   “One of the things as participants that we're always really keen to get across, particularly to the scientists, is that behind every piece of data is a face and a name”   You can download the transcript, or read it below. Sharon Jones: This time on Behind the Genes, we'll be celebrating the 10th anniversary of the Participant Panel, and we'll discuss how genomic research is being guided by patient and participant voices. The panel is made up of participants whose data is held in the National Genomic Research Library. They help us to put lived experience at the heart of our work. My name is Sharon Jones, and in this podcast we cover everything from cutting-edge research to real-life stories in genomic healthcare. Joining me this time are Kirsty Irvine, chair of the Participant Panel, and Frances Allan and Lisa Beaton, who are also both members. Collectively, they wear many hats for a range of organisations, which are listed in the episode description. As you'll hear, this one is all about people power. So back in 2016, the Participant Panel was in its infancy, with 12 founding members bringing lived experience of rare conditions. The idea was straightforward but radical: that the people whose genomes were being sequenced should have a real say in how the work was done. Over the decade since, the Panel has shaped some significant changes, from pushing for a service that let participants track their own samples, to publishing a language guide that changed how the genomics community talks about genetic conditions and disability. They've navigated the pandemic, welcomed new members and, in 2025, launched their first formal strategy. This year they mark their 10th anniversary, and today we're hearing from some of the people who've been part of that story. So welcome Kirsty, Frances and Lisa. So what was your reason for joining the Participant Panel? And I will ask Frances that. Frances Allan: Hi Sharon. I joined the Panel back in 2023 following a cancer diagnosis, and as part of that investigation I was fortunate enough to have a whole genome sequence performed. And they also asked would I be interested in taking part in a panel who look after this information, and I ticked the box and then thought no more of it. And then a month or so later I heard from the then Chair, Jillian, um, and had a chat about genomics and joined the Panel, and it was a very good decision that I made. Sharon Jones: Did you have any kind of expectations? What were your early thoughts when you kind of accepted? Frances Allan: Not many thoughts. So I was in the middle of my chemotherapy treatment, but one of the things that really stood out: when I signed the consent form, I said, well, of course I would do that. And the clinician consenting me, said, actually, not everybody does. And I thought, well, why would they not want to do that? So I was really interested in finding out about that. I had no idea how influential the Panel was, and that was great to discover as I became part of it. But seeing the breadth of the research and the knowledge already gained, compared to my rudimentary A-level Biology from many, many years ago, gave me incredible hope, um, and really helped me through a very difficult, difficult time. Sharon Jones: Yeah, that's, that's amazing. It's amazing that you could kind of think in that way whilst you were actually going through the treatment itself. I mean, how did you split yourself in that way? Frances Allan: I think it gave me a sense of, of purpose. So at the time, I'd, I'd stopped working to have my treatment and I was a, a vet previously, so I was used to thinking about medical things and problem solving, and it, it filled a, a void in my life. I had no idea I'd be able to contribute to it. I thought, well, I'd learn something from it. But, you know, the, the Panel is managed very well. Kirsty's a fantastic Chair. Everybody gets an opportunity to speak, and the attendance can be in person. And I've done most of them in person. When I was poorly I attended an online meeting, but even that is managed so well that you get a chance to speak up. If you're not feeling well enough, then you can, you can add it to the chat or email. So it's very, very inclusive and a very supportive environment, as well. Sharon Jones: Yeah, it sounds like a, a very safe space to be in. And Lisa, what was your reason for joining the Participant Panel? Lisa Beaton: I think it was sort of one of those, bit of a light bulb moment for me thinking, yeah, I could do that. I'm not quite sure why I felt I was qualified to do that, but my reasoning is slightly different than Frances. So I joined the 100,000 Genomes Project back in 2015 in respect of one of my children who has an undiagnosed, thought to be neuromuscular, syndrome. Um, so myself, my husband and our daughter recruited for genetic sampling, and over the years I've sort of taken a keen interest in all things genetic and genomic related, followed on kind of various social media platform. And I think if memory serves, I saw an announcement or an advert stating, do you want to be part of the Participant Panel, clicked on the link and thought, this is something that really resonates with me. I've served with different hats on different kind of participant groups and speaking events, and it's something I feel really, it's an overused phrase, but I do feel really passionate and strong about it because, you know, we are the people who are the front and centre of this, because it's our genetic information. So I applied, did a bit of a kind of resume of myself, um, then had huge imposter syndrome and thought, oh, that'll be the last I'll ever hear of that. And uh, actually had a really lovely interview with some of the then, uh, members of the Panel and must have said a few of the right things, 'cause here I am, three years down the line. Sharon Jones: That's amazing. Has it lived up to your expectation? How has it, how has it helped you get through what sounds like a really challenging time? Lisa Beaton: It's, it probably sounds wrong to say I, I didn't really have an expectation, but I joined it really just wanting to kind of know more and see if I could find out more details, more information, kind of more genomic discovery, and hope that I could give something back, if that doesn't sound too cringey. I think one of the things I'm always really keen to say is that you don't need to be a geneticist. You don't need to be a scientist. You don't need to kind of have lots of scientific information. And I will confess that the very first meeting I went to, I did come away thinking, I think I probably only understood about one word in three. But three years down line as I say, I'm still here, and it's been good to challenge myself and to explore kind of things that I don't know information about, but also I found that there are areas that I can definitely bring lived experience to and, and hopefully a voice for people like myself and my family. Sharon Jones: Yeah. That's so important. It sounds like you've become a bit of an expert by, uh, experience there. Has your vocabulary improved in the last three years? Do you know more words now? Lisa Beaton: Yes. Uh, I've, I have to remind myself not to use an acronym. It's one of my pet peeves. You know, when you're, you're in a, a meeting and terminology or, or vernacular, that is not necessarily something that people would use day-to-day, and I think lots of you know, you don't, don't have to be genomics or genetics to, um, using acronyms for things. It's something we all need to remind ourselves that just because you know that expression, somebody else doesn't. So it's really important to kind of keep that at a, a lay explanation so that everybody understands it. Um, I think particularly with quite heavy subject matter such as genomics and genetics, there can be a tendency otherwise for people to feel that it's not for them. And of course it is, because it's about our own personal data. Sharon Jones: Yeah, absolutely. And, um, and coming to you, Kirsty, what were your kind of motivations for, for joining the Participant Panel? Kirsty Irvine: Well, it's been quite a long journey for me to find myself on the Participant Panel, so I and my family, we were all consented into the a 100,000 Genomes Project back in 2015. But from that point, I then spent nearly 10 years chairing committees at NHS Digital and then NHS England, focusing on health data access. And I remember talking about the 100,000 Genomes Project at my interviews for those roles. I then went down a different path. And in those roles I was very much wearing my solicitor's hat. So I was thinking about governance and risk and were we complying with the precise wording of the legislation. And then when the chair role came available, I had a number of people sort of forward it to me saying, I think this would suit you. I think this would suit you. And at that stage, I was aware of the Panel because I'd met the fantastic former chair, Jillian. Um, so I'd seen Jillian at various conferences and meetings and things, so I was well aware of what the Panel did. I was well aware of the Panel's standing. It was probably the only participant panel that I was aware of in my work with NHS Digital, NHS England. And then I realised, you know, I wanted to be closer to the people behind the data and I wanted to do something more active. I wanted to bring a bit more of myself. Because when you're chairing a very formal committee, at NHS England, you, you can't talk about the time that you resuscitated your child at home, you know? And on the Panel, you know, my very first meeting, I, I met someone, someone whose child had, you know, been fed with an NG tube for a number of months. You know, I met someone else who had resuscitated their child, you know, and all of a sudden I could bring more of myself to my colleagues and, and find a real community. So for me, joining the participant panel was a way of shifting the perspective, but to also bring that experience with me because I, the roles at NHS England, you know, from a governance perspective, I couldn't continue chairing those, you know, board subcommittees forever. But I didn't want that knowledge to just sort of disappear. So for me, I'm really delighted that I've, what I hope, what I hope is a good fit. I feel it's a good fit. So that, that's been my journey to the Panel. Sharon Jones: Yeah, that's, that's so interesting. And I guess having that space to kind of be yourself, and having understanding because of your lived experience, brings a lot of value to the role that you're doing now in a way that kind of is different when you're in your previous roles of NHS Digital, because you had to be a bit more, kind of stand back from it and, yeah. That's so interesting. So, what has it been like being part of these groups? You know, the ones that you kind of, you're involved in a lot of things, and we'll list them in the, in the web description. And how has it kind of affected your life, essentially, because it's not the kind of average thing that people are involved in. Frances Allan: So it's been an incredible, I think as Lisa alluded to, incredible learning curve. We've learnt so much. But the team at Genomics England are endlessly patient and very skilful at passing that information on. And we have access to the leading researchers, the clinicians that are involved in genomics. And they're happy to take any question. And the questions, however silly, there's no silly question. They're happy to answer that. And so we learn every time we attend a meeting, we have quarterly meetings and that can be in person or online. Um, but we also have regular lunch-and-learns. So if there's somebody we want to speak to or find more about their specialist area, they'll come and have a, a chat with us. And then we have half of it, them chatting to us and half us, us. Us asking them questions and, and challenging them. Um, so it's very, very informative and then learning from each other. And as Kirsty was saying, you know, this is a, a group of people who've, who've dealt with an awful lot of unique situations and they're happy to, to share that and pass on the information. It's a, it's a great place of learning. Sharon Jones: Lisa, would you agree with that? How it been for you? Lisa Beaton: Yeah, I would definitely echo everything that Frances has actually said there, and I think it's a very humbling experience, as well. Ostensibly, we are a, a collection of individuals who have all been brought together, um, purely because of, uh, our genomic interests. And whether that's for our families, you know, as, as parents, as in my case, or in somebody like Frances' case, who's obviously a participant in her, in her own right. And although there are kind of many differences in our stories, there's also a lot of similarities. But I think what's really interesting, very precious, is that the staff at Genomics England, obviously they range from, you know, there, there's so many different kind of areas from the, the comms, the scientists, etc., but everybody is really interested. They want to know your story, who you are, why you are there. There's a real kind of inclusion focus on that. And one of the things as participants that we're always really keen to get across, particularly to the scientists, is that, you know, behind every piece of data is a face and a name. And I think they really make that felt when they're chatting to us. You know, we go in and, and there, there's people who are there from governance sides for how the data is accessed by other parties. There's people there who are the science technicians, etc. There's people who are dealing with the administrative side of things, but every single person that I've encountered wants to know more about you, what you are there for. And that is, is very, very precious. And as Kirsty also alluded to, a lot of us have been through some really quite traumatic experiences. It, it's not my place to speak of others' journeys, but you know, there, there are, uh, bereaved parents and family members among us. And so we are sharing very precious raw material, emotions, experiences, and that is very powerful, as well. And I, I think the Genomics England staff never forget that. They seem to bear that at the forefront of their, their communications with us, always. Um, and certainly Kirsty and Adam and previous chairs, uh, of the panel, that inclusivity was entirely throughout every dealing we had with them. Sharon Jones: It's very humanising and I think that it's humbling for us who work here that that's always at the forefront of our mind, that this is why we kind of get up and go to work every day, because of that human element. And it's not just a data point. There is a whole family, a story, a history, and that's, that's so important to us in the work that we do. Kirsty, did you want to add your point on this as well? Kirsty Irvine: I've probably got two points I wanted to raise. One was just to draw out what Lisa was saying, is that it can be complex being a Panel member, because the story you're bringing often isn't just your own. In my family, we've got a real, we've got a whole range of genetic differences and conditions that, you know, across the extended family. And so when I speak, I'm often drawing on experiences that aren't solely mine to share, and, you know. So I think that's something that for some on the Panel, we're sort of, we're, we're being quite careful to think about what we're saying, and if we're speaking in the public domain, we might be talking about it in more general terms. So that's, you know, but there's not a single right way, and there's room on the Panel, everyone, for the people who can and, and as Lisa talked about, you know, the, the most acute situation is where someone's bereaved, you know. And it's, so everyone's got different, you know, different experiences. But that, that, again, coming back to the positive side of things, one of the biggest things to me about being on the Panel, what it means to me, is being part of a wider community. I mean, one of the other things that, Sharon, I don't know if I can sort of segue onto this about, you know, the opportunities that have arisen? Sharon Jones: Yeah, absolutely. I'd love to hear more about that. Kirsty Irvine: So one thing that really stands out for me was the opportunity to speak directly with, um, Associate Health Minister Ahmed about, and his policy team. So we went to the department, Adam and I went to the Department of Health, and it was about the use of GP data in consented research cohorts. So getting the GP data into the National Genomic Research Library. So even though there's consent, up until now, that GP data, that tranche of really rich data, hasn't, hasn't gone into the NGRL. So I'll use that abbreviation now that I've used it in full. And so what was really unique for me was that I'd seen it from multiple angles because I'm participant in the 100,000 Genomes Project, so I'm a cohort member. I then worked on the consent review for NHS England. I then sat on a, the consent review assessment committee with, you know, a multiparty group. And then, because I was on the panel, I got to see things full circle. I was then invited to, to go and meet with, um, Minister Ahmed and, and advocate for the use of this GP data. And that really matters because something, you know, there's such important information sitting in that GP data and it wasn't a given, it was not a given that the government was going to the direction that allowed that data to go into the NGRL. And so we were able to talk about how we really wanted that data to be used. And now, going forward, you know, something as simple as BMI or for example, if a, if an individual's coded for a neuro, neurodevelopmental condition like autism, sometimes that data actually only sits in the GP health record. It's in primary care only, so it's not necessarily in the hospital records or other records. And so this is really, really valuable data for, for researchers. And so that was something that was a really special experience, just being able to see that come full circle. And I felt like it's a really tangible example of how the participant voices really helped strengthen that conversation, you know, with the DH policy team, you know, and the government ministers. Sharon Jones: Yeah, I mean that's, that's really powerful and it, it just sort of shows how these opportunities can arise from being involved in a participant panel in a way that you wouldn't have necessarily had that power if you hadn't been involved. And you know, obviously you are wearing lots of different hats in that, in that position, Kirsty. And um, it just sort of shows what can be done when you're, unfortunately, you know, you're in this group for a reason and it's not necessarily the, the most cheeriest reasons, but it, you still leverage that opportunity to create something positive, you know, with it. Frances Allan: So we've given all sorts of opportunities and we seek to get involved with as many things as we can to speak and have our voice heard. Um, and one of the things I did last year was, um, do a short presentation to open a stage at the Genomics England Research Summit, which was quite a challenge for me, but I felt very exhilarated having done it. And then a couple of people came up afterwards and just said, oh, thank you for sharing your story. And a researcher who was slightly older than I, so very experienced, been in his field a long, long time, and he said his clinical years were long behind him, and now he researches within a lab. And actually for someone to say, you know, thank you for, for looking, thank you for finding, had a very profound experience on him. And he knew there was a clinical benefit; his research was very clinically led. But he said he hadn't thought about the recipients of those findings. And I pointed out every time you have that chat with somebody, come to an event like that, have a network, spend a bit longer in the lab, look for something that you might not find, even if it's a negative finding, there will be somebody eventually that benefits from that. And I've been a direct recipient of other people putting forward their whole genome sequence, and then a common change was noted in people with the type of cancer that I have, and that then qualified me for a treatment that otherwise I wouldn't have been eligible for, and I wouldn't have been, I wouldn't have been here now. So it's a very, you know, profound thanks to all the people that are involved from everybody within Genomics England, all the researchers, all the other patients that speak up. We each have a contribution to make. Sharon Jones: Yeah, that's amazing. That must have been quite a poignant experience when you, you met him at the, um, Summit, of just kind of the other side of the, the world that you don't often see. And they obviously don't see our side of the world, and it's kind of interesting to join those dots and kind of come full circle. So moving on. In terms of like, collectively, there's a lot of impact that you have and there's a noticeable shift in organisations where people with lived experience are playing, you know, a much bigger role in decision making. Can you help our listeners understand how people are getting involved in governance and shaping research? Lisa Beaton: From my perspective, it comes back to that word "embedding". I think historically, perhaps there's been an, an almost about-face. Um, it's kind of come at it very backwards, that that embedding has almost happened as an afterthought, which is sort of a bit of a misnomer way of explaining it. When you're talking about embedding, obviously it should be the foundation. Historically, at least both from the parent, parental perspective, I've seen that with clinicians, for example, that historically I've been made perhaps to feel a bit of a thorn in someone's side, that even though we're there for an appointment about our young person, when I'm asking questions that they don't necessarily want to answer, you know, I'm almost the, the add-on rather than the reason that we're there. And I think there has been a paradigm shift in everybody's approach to that. So thinking much more about, you know, the, the what's, the wherefores, the whys. How do we ensure that right from the get go, that patient or participant voice is heard, and it shapes the question. And one of our other Panel members frequently uses the phrase, "nothing about us without us", because that is front and centre of why, you know, genomics exists in the first place, really. Without that data, the conversation ceased to exist. It, it's so vitally important, not just for us as an individual, not just for our family members, but for the greater good, if that doesn't sound too grandiose. Sharon Jones: No, not at all. And, and, and Frances? Frances Allan: I think having raised that value of patient advocacy: what we have to say. So it started off, people felt that they should have some, so they included it, but actually once they started to include it, they thought, this does contribute to our study. And starting at the very beginning of the research project, so what is reasonable to ask participants and patients to do? Is it something that there is benefit from? And trying to see that end goal right at the beginning. And we might help shape a research study that actually goes in a beneficial direction, rather than the researchers starting alone, and then actually getting into the study, and the procedure is, is too painful to endure, there's no clinical benefit, it's not something that can be translated into clinical practice, and it gets abandoned. So start us right at the very beginning, and our perspectives may not be what, what researchers or clinicians think. Uh, with that lived experience, however empathetic you are, the lived experience is a very unique lens and position to look from. Sharon Jones: Yeah, it absolutely is. So, given that you are part of a small group and you know, you're representing a much wider community, essentially, like, what are the considerations that you, you have to bear in mind? Lisa Beaton: I think we can only speak, obviously, to our own individual experience and we are very aware that, you know, diversity, ethnicity, inclusion is something that is a much bigger conversation and certainly something that we want to broaden in, in the panel itself. And I know there's kind of lots of work and thought going into how that can widen those perhaps more diverse communities that historically... It's not that, there's, there's been a terminology that, you know, they're difficult to access, but actually the question is wrong there. The statement is wrong. It's not that they're difficult to access, it's just that we've been asking that incorrectly. And we need to ensure that they are, uh, empowered to bring their stories forward and find ways to push forward for their inclusion. We need to ensure that everybody's voices are heard, otherwise the data set is wrong from the off. So I think that's something that we're all very minded when we speak about, and definitely want to, to diversify the pools of data that come in. That, that has huge resonance for, you know, shaping genomic and genetic policies moving forward, for sure. Sharon Jones: Yeah, definitely. Frances, sort of broadening out that question. Does it feel like a lot of pressure and a lot of responsibility, kind of representing, you know, in this kind of small group where you are almost speaking on behalf of, you know, a lot of people? Frances Allan: I think it mainly feels like a, a privilege, Sharon, to be in that position, to have a say. And back to my, one of my motivators for joining is why would people not choose to do this? And actually understanding why that is. And is it the, you know, the lack of knowledge of genomics? And there is a lot of, of fear about what can be discovered. But understanding the immense benefits from that so people don't miss out on those opportunities. Our genomes contain the, the blueprint to us, but also how we would respond in certain situations, and you want everybody to be using those leverage points. You know, cancer's a really difficult disease to manage, and anything you can do to make it slightly easier, slightly more comfortable, slightly more successful, we want to do that. So every time we speak out and we advocate for the benefits of genomics, we might gain one more person who's going to feel that a successful outcome. Sharon Jones: Yeah, and who knows what, what that can mean for their family and, and sort of further down the line. So have you got any advice for, or encouragement, or any tips for, you know, potential participants who are thinking of getting involved in, in groups? You know, it doesn't necessarily mean the Participant Panel, but just generally, sort of groups related to their conditions or their family's conditions. Frances Allan: Yeah, I think the value of the one's personal experience: don't underestimate that. Everybody has an individual journey and they can comment and reflect on that. And anybody interested in, in joining our panel, you can include in the, the copy or description, ways they're getting in touch with us and speak to us about what that, what that involves. And uh, Lisa said at the, the beginning, you come and it's a huge learning curve, but there are people to support you and guide you through that way. And the learning is, is just fascinating. And there's a position for everybody and everybody's point of view to be heard, and you will be heard. Sharon Jones: Thank you. Lisa? Lisa Beaton: Yeah, I think I might steal a phrase or two actually from some, uh, well-known brands. But, um, one would be "just do it" and the other would be "feel the fear and do it anyway" because, you know, you are amongst friends, first and foremost. We all, we do tailor our experiences, and clearly we self-censor at times because that's necessary to protect the privacy and dignity of not necessarily ourselves, but as we've already alluded to in our chats, but you know, our family members, the wider people that you are aware will be hearing this. And you don't necessarily want certain medical information about your family members out there, because it's not your information to share. But in terms of joining the panel and, you know, having a voice, giving more voices, giving more diverse data, we, we need as many people as possible to come. We need more voices. We need to get our genetic, genomic information out there, uh, in front of the researchers and, and all involved with Genomics England, um, and other patient advocacy groups, as well, because that will only benefit the greater public. Sharon Jones: Thank you. And Kirsty? Kirsty Irvine: I'm just thinking about sort of general tips building on what Lisa and Frances have said. You don't need to be a seasoned public speaker. I think that's something, absolutely not. We've got some fantastic speakers in the group. Um, but then we've got people in the group who've got, who have got different skills, so don't think that you need to be ready to give a TED Talk at the first meeting, be that the Participant Panel or whatever group you might be motivated to join. We, we just need good listeners. I've chaired meetings in the past where people, uh, wanted to contribute via the chat function, and that worked absolutely fine. They would put their incredibly insightful, erudite comments in the chat, and then I would relay them to the group, and that was how we got that person's input, because we realised that they weren't necessarily going to speak up in the forum. So whatever your communication style, we can accommodate it at the Participant Panel and we would be delighted to hear from you. Sharon Jones: That's great. Thank you. Um, final question. So what do you hope the next 10 years of participant involvement will look like? Kirsty Irvine: I think if I could use a little catchphrase, which I'm sure is not mine, but I would like to see us fully integrated as partners, not participants. I'll put that out there. I mean, Sharon, I wonder if I could sort of also open things up to how are things going to look in another 10 years, because there's been some statistics that have really struck me, uh, at presentations that, that we've heard. One of them being that in the next, you know, within 10 years, around about half the data in the National Genomics Research Library will be from, I don't know if this is the best name for it, the general population. So that's people who aren't necessarily seeking an answer, or have a diagnosis or a condition. These are people who have donated their genomic data through being part of, you know, research projects. And, as a panel, so Genomics England's evolving and the panel will be evolving. And in 10 years time, the panel will need to be, I believe, true to the original route. So, 100,000 Genomes Project. Uh, the people who've had their whole genome sequencing through cancer diagnoses. You know, there's a significant COVID cohort, but also people of the gen, general population. So how do we advocate for and look after everyone in that broad group of people. So I think that, that's both a challenge, that's a challenge for us, but it's also really exciting to think how we can meet that challenge. Sharon Jones: Yeah, definitely one, definitely an opportunity and a challenge, and one that will take a lot of thinking in the next few years. Frances? Frances Allan: Yeah, thanks Sharon. I think looking forward to that, that 10-year period is how genomics just becomes a normal part of everybody's healthcare, so we all fully understand the benefits of it. People are willing to participate in it and then using lots of different types of data to go into the National Genomics Research Library. So at the moment, it's mainly genomics material, but there's been a lot of work done with the cancer cohort, putting in diagnostic images, pathology slides, other clinical data, written notes, and this can then be accessed under the strict criteria of the access review committee. It can be accessed by clinicians, researchers across the world. And we want our research library to be the premium source of that information and to have collaboration with researchers, clinicians, participants, worldwide, to speed up the generation of that information and those positive outcomes. It's a, a very, very rich data source now, and it'll only get bigger as we include people from the general population. Sharon Jones: That'd be amazing and have some quite incredible global, um, outcomes. Lisa? Lisa Beaton: I just had a little image actually pop into my head that I, I almost look at it a little bit like we're doing one of those, I think they might be called an "impossipuzzle" where actually we don't have the picture on the box, but we have lots and lots of little pieces that are all going in together and they're making up a really creative, wonderful, fantastic, woven story, a tapestry as you were, of different information that's coming through. And how incredible, you know what, what a wonderful legacy we're building, you know, and this amazing picture that's going to evolve and change and develop over the years to come. Sharon Jones: That's a wonderful note to end on, so we're going to wrap it up there. Thank you for listening. A special thanks to our guests, Kirsty, Frances, and Lisa, for joining me today as we discussed how lived experience can shape health research. If you'd like to hear more like this, please subscribe to the Behind the Genes on your favourite podcast app. And if you want to know more about the Participant Panel, you can head to the Genomics England website and listen to our 10-minute explainer podcast, Genomics 101. Behind the Genes is produced by Deanna Barac, Florence Cornish, Sophie McLachlan and Dave Howard at Bespoken Media.

According to NHS England, every maternity service in England will need to meet new clinical standards set out by the NHS to significantly reduce the number of women who die each year during or after pregnancy. This comes after figures published earlier this year showed a 20% increase in maternal deaths between 2022 to 2024 compared to rates from 2009 to 2011. More than 500,000 babies are born in England every year and to discuss what these announcements mean in practise for pregnant women, Anita Rani is joined by Michael Buchanan, BBC Social Affairs correspondent.At the age of nearly 40, BBC broadcaster Sophie Raworth thought she was too old to start running. She'd done no exercise for decades. But after being invited to take part in The Great North Run and then seeing a friend do the London Marathon, Sophie decided to give it a go. Although it didn't quite initially go to plan, she kept going on a path that would take her around the world, from Sydney to New York and the Sahara Desert, completing 20 marathons and 10 ultra-marathons. She tells Anita about her new book, Running On Air, and reveals how in running, she has discovered an unexpected strength, new confidence and great friendships. The Suzy Lamplugh Trust has published a report spotlighting the link between stalking and homicide to mark National Stalking Awareness week. They say there are huge gaps in recording stalking as a contributing factor to homicide and want to see further research on this. Anita is joined by Saskia Garner, Head of Policy and Campaigns at the Suzy Lamplugh Trust, and Detective Inspector Karen Butler from the Metropolitan Police, who works in the Stalking Threat Assessment Centre.On Monday, Sarah Finch became the European recipient of the Goldman Environmental Prize, for her work against oil drilling in Surrey, with the Weald Action Group. Their long legal battle led to a landmark judgement on fossil fuel emissions. The Goldman Prize, often referred to as the ‘Green Nobel', honours grassroots environmental activists from around the world. For the first time since its inception, all six prizes were won by women. Sarah joins Anita from California where the awards took place.Presenter: Anita Rani Producer: Andrea Kidd

NHS England's Federated Data Platform contract with Palantir Technologies must be torn up before it's too late. Palantir's NHS patient data contract is not a tool for improving healthcare, but the reverse. It is a vehicle for the further privatisation and militarisation of the NHS, designed to enrich a corporation whose ethics are fundamentally incompatible with public service. Subscribe! Donate! Join us in building a bright future for humanity! www.thecommunists.org www.lalkar.org www.redyouth.org Telegram: t.me/thecommunists Twitter: twitter.com/cpgbml Soundcloud: @proletarianradio Rumble: rumble.com/c/theCommunists Odysee: odysee.com/@proletariantv:2 Facebook: www.facebook.com/cpgbml Online Shop: https://shop.thecommunists.org/ Education Program: https://thecommunists.org/education-programme/ Each one teach one! www.londonworker.org/education-programme/ Join the struggle www.thecommunists.org/join/ Donate: www.thecommunists.org/donate/

HSJ Health Check discusses the latest squeeze on GP resources, and controversy over reform of referral processes.Analysis of new figures show the share of NHS spend going to general practice fell to its lowest point in 2024-25 - a decade on from NHS England vowing to shift the balance the other way.The share of doctors in the English NHS who are GPs also fell.Meanwhile, GP groups are among those crying foul over the latest "advice and guidance" reforms.NHS England is asking systems to introduce universal A&G for 10  "high volume specialties" chosen locally, for which it has set an ambition of a "diversion rate of at least 25 per cent by March 2027".With HSJ deputy editor Dave West, bureau chief James Illman and correspondent Caitlin Tilley.

Today is primary school offer day in England and Wales, when parents will be finding out where their children might be starting school in September. A new government-backed campaign has been launched to help parents and carers as figures show that over a third of children are currently starting reception without the basic skills they need for the classroom. Datshiane Navanayagam is joined by BBC Education reporter Kate McGough and Felicity Gillespie from children's charity Kindred Squared, to talk about what parents and carers need to know.The singer-songwriter Jessie Ware's new album, Superbloom, was released this week. As well as being known for her music, Jessie's family's passion for food led to the weekly podcast Table Manners, that she co-hosts with her mother Lennie, featuring celebrity guests like Ed Sheeran and Kylie. Jessie joins Datshiane to talk about her new album inspired by disco and funk and how she became more confident in her 40s.Autism Central is an online support service for the parents and carers of autistic people. Set up by NHS England in 2021, it has now been expanded to offer help for everyone in the support network of autistic people, including grandparents, partners, friends, and adult siblings. It's paid for by NHS England and run by the mental health charity Anna Freud. With growing numbers being diagnosed with autism - and waiting for a diagnosis - what can this type of online help offer? Datshiane is joined by Victoria Jackson who has been using the service, and Dr Georgia Pavlopoulou, Director of Autism Central at Anna Freud.Katriona O'Sullivan's childhood was marked by extreme poverty, neglect, addiction and abuse. She became pregnant at 15 and experienced homelessness, but went on to become an award‑winning academic and bestselling author, with her memoir Poor adapted for the stage. Katriona's new book, Hungry, explores her lifelong struggles with her body and the unrelenting drive to feel, “enough”. Katriona talks to Datshiane about how trauma, class and gender shape how women see themselves. Presenter: Datshiane Navanayagam Producer: Rebecca Myatt

Emma talks to Dr Liz Dapré, an academic GP and co-chair of the group GPs Championing Perinatal Care (GPCPC) about the vital role of primary care in maternal and perinatal health.In this conversation Liz and Emma discuss the key problems in perinatal care across the NHS and what needs to happen to address some of these issues.Liz explains how GPCPC is working to ensure the voice of general practice is heard by national policymakers and what it does to support GPs.She also talks about health inequalities in maternal health, the role GPs can play in tackling these and provides practical advice on delivering high-quality 6-to-8-week postnatal checks – explaining why these should be seen as a holistic review of a woman's transition to parenthood rather than just a series of clinical boxes to tick.And they talk about how GPs can better identify and support women following birth trauma, as well as managing gestational diabetes and the ongoing risks for women affected by this.This episode was presented by GPonline editor Emma Bower. It was produced by Czarina Deen.Useful links●     Women with gestational diabetes should be referred to the Diabetes Prevention Programme●     GPs Championing Perinatal Care●     NHS England 6- to 8-week postnatal check guidance●     Improving maternal postnatal check uptake in general practice using an opt-out equitable model of access: results of a 12- month quality improvement project, by Dr Dhiviya Tharan●     City Birth Trauma Scale questionnaire Hosted on Acast. See acast.com/privacy for more information.

We discuss Sir Jim Mackey's first year as NHS England chief executive, and his interview with HSJ in which he sets out plans for 2026-27.This year has seen the NHS land more or less on plan for its biggest recovery targets – and with declared financial deficits falling quicker than expected.Sir Jim told us the next 12 months will leave more room for thinking ahead, including about commissioning and neighbourhood health. But money is still very tight and ever-bigger leaps in improvements will be needed to stay on track.Also, we cover the huge challenges facing the Humber Health Partnership, a group model that has seen its two member trusts placed into special measures and ask what lessons can be learned for trust groups elsewhere.

PM admits government can't help on it's own as amid warnings energy shock will be worse than the 1970s, millions of drivers in line for £830 compensation from car finance scandal, and Sir Jim Mackey, Chief Exec of NHS England comes in to take your calls.

Tech is one of the most important parts of the government's 10-Year Health Plan, but this week NHS England has warned a leadership void is hampering progress and investment. We talk in more depth about this particularly public criticism and also discuss other key areas of tech that trusts are investing in, from electronic patient records to AI scribes. We also cover research that has revealed the over-complication of EPR training is having an adverse effect on productivity. The team shares how the NHS App and AI are set to evolve over the next few years as well.

Episode 90 of THE health and politics podcast, comes LIVE from Digital Health Re:wired!This episode is sponsored by MASTEK; a company with a 25-year history of working with the NHS and has been trusted to deliver significant national IT infrastructure and data projects across the UK Public Sector.Former Health Ministers Steve Brine and Lord Bethell are at the NEC among four thousand digital health leaders with very special guests and all the usual insights into how decisions are made.They begin with the huge response to last week's episode - 'meningitis horror' - and discuss a new vaccine commission getting underway from the Royal Society for Public Health. And the pair consider the new Neighbourhood Health Framework, finally published last week which is the delivery mechanism for the entire ten-year health plan as told to by NHS boss Jim Mackey when he was on the podcast last month.And they're joined by Sonia Patel - Interim Government Chief Technology Officer (and former NHS England CTO) - as well as Helen Clifton, Executive Director of Products & Platforms at NHS England. Helen is responsible for how the NHS shows up in peoples' pockets and whether digital actually delivers prevention.The discussion covers:The £7.4 Billion NHS digital investment: Where is the money actually going?Martha's Rule: How one mother's campaign is saving hundreds of lives from sepsis.The Vaccination Gap: Why adult vaccine access is the next big public health challenge.Consumer Health: Will the NHS App ever be as good as your banking app or a Whoop band?The Neighborhood Health Framework: Is it a delivery mechanism or just a fantasy?Connect with the Podcast:

The UK was once a world leader in heart and lung transplantation. Pioneering surgeons attracted patients from all over the world. But the NHS has not kept pace with medical and technological developments and today the UK lags far behind most similar countries. It carries out fewer transplants and a lack of resources mean it doesn't routinely use modern technologies. Many of the health service's leading surgeons have left to work overseas in recent years, frustrated, they say, at the lack of attention transplant services have received from NHS England. Through speaking to patients, surgeons and experts, File on Four Investigates looks at what the UK needs to do to update and transform this life-changing service. Reporter Michael Buchanan Producers: Adam Eley & Paul Grant Technical Producer: Nicky Edwards Production Co-ordinator: Tim Fernley Editor: Tara McDermott

At the Royal College of Anaesthetists' Centre for Perioperative Care (CPOC) Perioperative Leads Day in London, host Andy Cumpstey speaks with James White, a perioperative medicine clinician (and qualified general practitioner) working within the NHS in Cheshire and Merseyside, serving as Clinical Lead for Perioperative Medicine and contributing to national improvement work with the Centre for Perioperative Care, Simon Rang, consultant anaesthetist at East Kent Hospitals University NHS Trust who also contributes to national healthcare improvement work including with the Centre for Perioperative Care, and Denny Levett, Director of the Centre for Perioperative Care, and a Professor of Perioperative Medicine and Critical Care and Consultant at University Hospital Southampton NHS Foundation Trust and the University of Southampton. The conversation covers how UK perioperative medicine policy is implemented through evolving NHS structures. They explain the relationship between national policy (Department of Health, NHS England) and delivery via regions, integrated care boards (ICBs), and local trusts, emphasizing integrated pathways spanning primary and secondary care, particularly post-COVID. James outlines five core requirements: early perioperative screening, proactive optimization/prehabilitation, maintaining health while waiting, listing patients only when medically fit, and shared decision-making. The guests discuss how regional and ICB networks share solutions, address variation and barriers (including finances and culture), and use CPOC guidance and resources alongside initiatives like GIRFT to support consistent implementation. -- Join us at Evidence Based Perioperative Medicine (EBPOM) World Congress 2026 in London. Be part of a global conversation as clinicians from around the world gather between 7-9th July at the British Library in London. Three days of evidence-based perioperative medicine, global insights, and expert debate—featuring speakers including Michael Marmot and Ken Rockwood. Register here - https://ebpom.org/product/ebpom-world-congress-2026/

In CI News this week: Work on NHS England's puberty blocker trial is paused due to safety concerns, a Christian fostering charity has opened a new adoption service in England, and MP Danny Kruger highlights the importance of marriage for a healthy society. You can download the video via this link. Featured stories Puberty blocker trial halted over safety concerns ‘Senedd's vote on Leadbeater Bill did not approve principle of assisted suicide' Christian charity opens new adoption service in ‘celebration of faith' MP: Marriage is good for society, while ‘cult of individualism' is ‘destructive'

Surgical quality is a term that is often thrown around in surgical practice. We have multiple quality improvement projects, metrics and benchmarks that motivate us to do better, and of course the ever expanding patient reviews to possibly “reflect” the type of surgical care provided. But what does quality actually mean? What metrics can we use to understand the type of care being provided by ourselves, our colleagues, and the health system at large. Today, we delve into these questions to understand how quality is currently understood within surgery and how we hope it to evolve in the future. Joining BTK fellow Agnes Premkumar and ASGBI hosts Jared Wohlgemut and Gita Lingam are two fantastic guests - Dr. Mark Cheetham, joining us from the UK, has deep experience in national audits and system-level quality improvement. Dr. Cheetham is a colorectal surgeon and the National Clinical Lead for General Surgery at the Getting it Right First Time Programme in NHS England, or GIRFT. Dr. Alexander Perez is representing the US; he is a board-certified general surgeon and minimally invasive surgeon at Baylor St. Luke's Medical Center. He has worked extensively with institutional quality programs and is the current assistant Dean for patient safety, simulation, and process improvement at the Baylor College of Medicine. Resources: Institute for Healthcare Improvement: https://www.ihi.org/library/tools/quality-improvement-essentials-toolkit NSQIP: https://www.facs.org/quality-programs/data-and-registries/acs-nsqip/ Getting it right first time (UK): https://gettingitrightfirsttime.co.uk/ ***Fellowship Application Link: https://forms.gle/QSUrR2GWHDZ1MmWC6Please visit https://behindtheknife.org to access other high-yield surgical education podcasts, videos and more.  If you liked this episode, check out our recent episodes here: https://behindtheknife.org/listenBehind the Knife Premium:General Surgery Oral Board Review Course: https://behindtheknife.org/premium/general-surgery-oral-board-reviewTrauma Surgery Video Atlas: https://behindtheknife.org/premium/trauma-surgery-video-atlasDominate Surgery: A High-Yield Guide to Your Surgery Clerkship: https://behindtheknife.org/premium/dominate-surgery-a-high-yield-guide-to-your-surgery-clerkshipDominate Surgery for APPs: A High-Yield Guide to Your Surgery Rotation: https://behindtheknife.org/premium/dominate-surgery-for-apps-a-high-yield-guide-to-your-surgery-rotationVascular Surgery Oral Board Review Course: https://behindtheknife.org/premium/vascular-surgery-oral-board-audio-reviewColorectal Surgery Oral Board Review Course: https://behindtheknife.org/premium/colorectal-surgery-oral-board-audio-reviewSurgical Oncology Oral Board Review Course: https://behindtheknife.org/premium/surgical-oncology-oral-board-audio-reviewCardiothoracic Oral Board Review Course: https://behindtheknife.org/premium/cardiothoracic-surgery-oral-board-audio-reviewDownload our App:Apple App Store: https://apps.apple.com/us/app/behind-the-knife/id1672420049Android/Google Play: https://play.google.com/store/apps/details?id=com.btk.app&hl=en_US

AI is transforming the world—but is it transforming privacy for better or for risk? We trust our GP with our deepest secrets, but can we extend that same trust to AI-powered systems and cloud-based suppliers? And if AI can re-identify people even in anonymized research data, is “anonymous” still real anymore? In this episode, Punit Bhatia and Tania Palmariellodiviney reveals how AI tools reshape confidentiality, integrity, availability, cloud sprawl, supplier risk, clinical transcription accuracy, re-identification, and even personal fears like voice-based deepfakes. The voice of experience rings clear: digital trust isn't a checkbox…it's engineered early with transparency, responsible data use, privacy by design, and safety by design. 

Blood cancers are the fifth most common group of cancers in the UK. But for a small number of people, the condition may have an inherited genetic cause.  In this episode of Behind the Genes, we explore the role of genetics in blood cancer, and what an inherited risk means for patients and their families. Our guests explain what blood cancer is, how inherited factors can increase risk, and why multidisciplinary teamwork is key to supporting families. They also look ahead to future advances, from whole genome sequencing to prevention trials.  Our host Amanda Pichini, Clinical Director at Genomics England, is joined by:  Dr Katie Snape, Principal Clinician at Genomics England and Consultant Cancer Geneticist  Bev Speight, Principal Genetic Counsellor Dr Sarah Westbury, Consultant Haematologist “By doing whole genome sequencing we get all of the information about all of the changes that might have happened, we know whether any are inherited, but importantly, we're certain of the ones that have just occurred in the cancer cells and can help guide us with their treatment.”  You can download the transcript or read it below. Amanda: Hello, and welcome to Behind the Genes.  Sarah: When we think about blood cancers, it's a whole range of different conditions and when you talk to patients who are affected with blood cancers or are living with them, their experiences are often really different from one another, depending in part on what kind of blood cancer they have.  We also know that blood cancers affect not just the cell numbers but also the way that those cells function, and so the range of symptoms that people can get is really variable.  Amanda: I am your host, Amanda Pichini, clinical director at Genomics England and genetic counsellor.  Today I'll be joined by Dr Katie Snape, principal clinician at Genomics England and a consultant cancer geneticist in London, Bev Speight, a principal genetic counsellor in Cambridge, and Dr Sarah Westbury, and haematologist from Bristol.  They'll be talking about blood cancers and the inherited factors that increase blood cancer risk.  If you enjoy this episode, we'd love your support, so please subscribe, rate and share on your favourite podcast app.  Let's get started.  Thanks to everyone for joining us today on this podcast, we're delighted to have so many experts in the room to talk to us about blood cancer.  I'd love to start with each of you introducing yourself and telling us and the listeners a little bit about your role, so, Sarah, could we start with you?  Sarah: Sure.  It's great to be here.  My name's Sarah Westbury, and I'm a consultant haematologist who works down in Bristol.  And my interest in this area is I'm a diagnostic haematologist so I work in the laboratories here in the hospitals, helping to make a diagnosis of blood cancer for people who are affected with these conditions.  And I also look after patients in clinic who have different forms of blood cancer, but particularly looking after families who have an inherited predisposition to developing blood cancer.  And in the other half of my job, I work as a researcher at the University of Bristol.  And in that part of my job, I'm interested in understanding the genetic basis of how blood counts are controlled and some of the factors that lead to loss of control of those normal blood counts and how the bone marrow functions and works.  Amanda: Thank you.  That's really interesting, we'll be looking forward to hearing more about your experience.  Bev, we'll come to you next.  Bev: Thank you.  Hello everyone, I'm Bev Speight, I'm a genetic counsellor, and I work at Addenbrooke's Hospital in Cambridge.  I work with families with hereditary cancers in the clinical genetic service, and for the last six years or so have been focused on hereditary blood cancers.  So we've been helping our haematologists across the region to do genetic tests and interpret the results, and then in my clinic seeing some of the onward referrals that come to clinical genetics after a hereditary cause for blood cancer is found.  I'm also part of the Council for the UK Cancer Genetics Group.  Amanda: Thank you, Bev.  And Katie, over to you.  Katie: Hello, I'm Katie Snape.  I'm a genetics doctor and I am a specialist in inherited cancer.  So we look after anyone who might have an increased chance of developing cancer in their lifetime due to genetic factors.  I am the chair of the UK Cancer Genetics Group, so that's a national organisation to try and improve the quality of care and care pathways for people with inherited cancer risk in the UK.  And I have a special interest in inherited blood cancers through my work at King's College Hospital, I work in the haematology medicine service there seeing individuals who might have or have been diagnosed as having an inherited component to their blood cancers.  So it's great to be here.  Amanda: Excellent, thank you for those introductions.  I'd like to then dive right in and understand a little bit more about blood cancers.  So, Sarah, could you tell us a little bit more about what blood cancer is?  Sarah: Yes, sure.  The term blood cancer is used to describe a whole range of different kinds of cancer, all of which affect some part of the blood or sometimes parts of the immune system that kind of gets represented as part of the blood.  So it's really describing a big group of conditions rather than one single kind of condition or entity itself.  But like any form of cancer, we understand blood cancers as being conditions where because cells as part of the blood system are rapidly dividing and normally doing so under really well controlled circumstances to produce just the right balance of blood cells and just the right number of those cells.  In a cancer affecting those cells, we see that that loss of control results in either too many of one type of blood cell being produced or too few, or that balance being lost.  And like any form of cancer, this is because of genetic changes that happen in individual cells that then go on to grow in a way that is not controlled and well regulated.    And because when we talk about blood cancer we're talking about such a wide range of different kinds of cancer affecting different cells within that blood system, there's a really wide range of different conditions.  From conditions that we might think of as being like a form of acute leukaemia, so something that produces often symptoms and signs in patients very quickly and they can often feel quite unwell quite soon and then get picked up with having this condition because they present feeling unwell.  All the way to chronic and slow growing cancers that can be found completely by chance and serendipity when blood tests are done for other reasons.  So when we think about blood cancers, it's a whole range of different conditions.  And when you talk to patients who are affected with blood cancers or are living with them, their experiences are often really different from one another, depending in part on what kind of blood cancer they have.  We also know that blood cancers affect not just the cell numbers, but also the way that those cells function.  And so the range of symptoms that people can get is really variable, again depending on which of the blood cells are really affected by that.  And it may be that during the course of some of the conversations we have today in this podcast, we'll perhaps focus on particular kinds of blood cancer.  But like any cancer, it's that disruption of the normal growth and development of cells that means that the number and function of those blood cells has been disrupted in some way.  Amanda: Thank you so much for explaining that, Sarah, that's really helpful.  In terms of across the range of blood cancers, is that something that people can get at any age, and how common is it?  Sarah: It does depend, as we were sort of talking about that really wide range of different disorders that make up that group of blood cancers.  And individually each of those blood cancers is reasonably uncommon compared to cancers that we might typically think of, like breast cancer or colon cancer.  But actually, if you group blood cancers together, they make up quite a sizeable proportion, and they're actually as a group the fifth most common form of cancer that's diagnosed in people in the UK.  In adults in particular we think that perhaps people diagnosed with leukaemia would make up about 3% of the new diagnosis of cancer made in any year.  Amanda: So coming to you, Bev, when we talk about inherited blood cancers, what are the differences between those and blood cancers more generally?    Bev: So at point of diagnosis, it may not be obvious that somebody with a new blood cancer diagnosis is one of the minority of people in that big group as Sarah has described, who has an inherited cause.  So it may not be immediately obvious.  However, in the last few years certainly, it's become more and more routine to do quite broad genetic testing.  Often on a bone marrow sample or blood, because that is done looking for genetic changes, which are part of all cancer and we find within cancer cells, that can help with treatment planning.  It can also find that there is an inherited cause to that new blood cancer diagnosis.  Sometimes that might not be clear cut, sometimes that might be inferred from the genetic tests that are done on the blood or the bone marrow. And the proportion of blood cancers in that huge group which do have an inherited cause is fairly small, the actual proportion will depend a bit on the age of the patient and the specific subtype of blood cancer.  Amanda: Okay, and could you talk us through how some of those inherited genetic factors can increase the chance of a person developing blood cancer, how does that work?  Bev: Yes, so if we know that there is an inherited cause for blood cancer, then what we mean by that most of the time is that a change in a single gene has been found.  And that there is enough research evidence and enough known about that specific change in that gene to say to the person who's been diagnosed, there is at least in part or perhaps a full explanation for why that blood cancer has developed and this could be shared in the family.  So at that point it's information that not only has implications for the person in treatment, but also their relatives.  Depending on what sort of gene alteration it is and which gene it's found in, there are different inheritance patterns, and that changes the sorts of information that we give about risks for relatives.  So for lots of the genetic tests that detect an inherited cause in adults when they're diagnosed, that's most often what we would call an autosomal dominant inheritance pattern.  Essentially that means you only need to have one gene alteration which is in that person's normal non-cancerous DNA inherited from a parent and can be passed onto a child.  And for people in the family who have inherited this one genetic change, then they are likely to be at increased risk of developing blood cancer.  Sometimes with particularly the children's blood cancers, if an inherited cause is found, it can be a different pattern, which we call autosomal recessive.  And that's where two gene changes are found and one has been inherited from each parent.  So parents might be what we call carriers and have one each just by chance, both have been passed onto a child who has developed blood cancer either in childhood or possibly later on, and that's the pattern we call autosomal recessive.  There are other inheritance patterns too.  The third one that we come across being X-linked, and so that has a gender component.  That's where there's a change on the X chromosome, women have two X's, and men have one X and one Y.  So sometimes with the X-linked conditions we're more likely to see the clinical signs of a condition in boys and men because they've only got that one X chromosome.  But those are less common in the context of talking about hereditary blood cancers.  Amanda: Thank you.  That's really helpful to understand.  So it sounds like you're saying that these forms of blood cancers that are caused by a single gene are relatively rare.  And also by having one of these changes, it's not a given that that person will develop a blood cancer, but it makes them more likely, and how likely that is might depend on the inheritance pattern or the type of condition.  Bev: That's right.  So what we're saying is it can give either part of full explanation for the blood cancer diagnosis, and it could confer a risk to family members, but that doesn't mean they definitely will develop it.  We're talking about an increased risk compared to the population risk.  Amanda: Right.  I can imagine for those families to some extent it might be helpful to know the underlying reason why they had that blood cancer, but again, that's just a small proportion.  So, Katie, could I come to you next?  What about the rest of all the blood cancers, how do they occur?  Katie: Yes, thanks, Amanda.  So most blood cancers will occur just by chance.  We also know that there are some environmental factors that can increase the risk of blood cancers, so, for example, serious radiation exposure, something like that.  What Bev has described is where there is this sort of quite rare condition where there is a kind of single gene that's really important for the blood cells in terms of keeping those control mechanisms that Sarah described.  And that's not working properly, which has increased the risk of a blood cancer.  But we also sometimes see some families where there is more blood cancer, or the same type of blood cancer in that family than we might expect by chance.  We think that's probably not due to a single high risk genetic factor, but might be due to kind of multiple lower risk genetic factors that are sort of shared by close family members and can add up together to increase the risk a little bit.  And we call that familial risk or polygenic risk.  We don't have a test for that at the moment.  We wouldn't offer usually any extra screening or testing to those families, but we would just suggest obviously family members are aware of any signs of symptoms of blood cancers and seek any advice if they're concerned.  But, you know, the majority of blood cancers are not due to genetic factors, and it's sort of environmental or chance or bad luck. Amanda: Okay, so it's clear that obviously blood cancer is almost an oversimplification, within that category there's so many different types, so many ways that it could happen in a person.  So, Bev, if we're dealing with that type of blood cancer that is inherited or has some heritability, can you tell us more about what that means for the family?  What kind of impacts do you see that having for them?  Bev: Yes, of course.  So clearly this is another layer of information that's often coming at a family during a time where somebody is often recently diagnosed with blood cancer of one sort or another and is having to take in a lot of information about treatment and all of the uncertainty and anxiety that goes with that.  So for this minority of patients and families where there is new information about an inherited cause, that needs conveying in a timely but sensitive way, bearing in mind what else is happening.  And for some people it can come as a major shock and really an additional burden at that time.  I think the reaction to that will of course depend on lots of factors.  And what we also see is that this question about a new cancer diagnosis of any sort, including blood cancers, can generate the question in people's mind, particularly if they've got children, about does this change the risk for relatives?  So sometimes this new information that, actually, there is an inherited cause is an answer to a question that families have already got.  And that might be because of what Katie's described as familial clustering, there might already have been this known history in the family. So sometimes this information can feed into that and actually be quite a helpful answer.  But it's quite normal for families to feel quite mixed about this and for different family members to have a different approach to it.  When there's the offer of what we would call predictive testing, if we found a change in a single gene in somebody with blood cancer which we're saying is a hereditary cause for that, that might open the door for relatives to access predictive testing.  I.e., the opportunity to discuss and possibly take up a genetic test for themselves when they haven't had cancer themselves, but there's an opportunity to try and quantify whether or not they're at increased risk.  We know in families the uptake of those kinds of tests is different, and a lot of it is to do with timing and the way people respond to this in families might depend on their response to the cancer diagnosis in their relative, and of course what else is going on in their life at the time.  This aspect for the family is where clinical genetic services come in, because these initial tests in the person with blood cancer are done in their haematology/oncology setting, and normally the results about an inherited cause has been found are conveyed through that service.  That's when a referral to clinical genetics happens.  And in our specialist service we're addressing those additional concerns for the family which arise because of this diagnosis. Amanda: Thanks, Bev, for explaining that.  Sarah, coming back to you.  Could you tell me then if someone has an inherited blood cancer does it also change the way that the patient is treated? Sarah: Well, it certainly can do, and again, it does depend a little bit on the specific circumstances of that particular person and the form of inherited blood cancer predisposition that they have.  But certainly if we think about treatment as a whole, then for a lot of people it does affect the way that we might recommend treatments or look after them and their families.  So, for example, for some patients who have a diagnosis of an inherited form of blood cancer, we know that some treatments might be more or less effective for their particular set of circumstances.  And so that can sometimes influence the specific treatment recommendations that we would make, particularly thinking about, for example, the risks that the cancer might come back again after it's been treated.  Or thinking about whether or not some of the typical drug regimes that might be used might be perhaps more likely to cause them side effects or problems with tolerating that treatment.  So it can certainly make some changes in that respect. For some people, to be fair a minority of people with blood cancers, they may need a stem cell transplant as part of their treatment to hopefully cure them of their blood cancer.  And this as I say is a treatment that's required for a minority of patients as a whole who have a diagnosis of a blood cancer.  But for those people who have got an inherited predisposition and who might be recommended a stem cell transplant as part of their treatment, then knowing about a familial risk for this condition can also be really important.  For making sure that if a family member is being considered as a donor for example that we're being really careful to make sure that we're not choosing a donor that might also be affected by the same underlying blood cancer predisposition.  Because this can obviously cause problems for the person that's receiving the stem cells if it turns out that the person they're receiving them from actually has the same inherited condition as them.  So in that respect knowing about the underlying predisposition and genetic cause for their cancer can be helpful.  But in a more sort of general sense, yes, the other thing that it can have a big difference for is that some of these inherited cancer predispositions and syndromes also have other health conditions associated with them.  So it might be that that genetic diagnosis predisposes somebody not only to a form of blood cancer but to other health conditions as well.  And so actually knowing about that diagnosis can help their haematologist then make sure that they're linked in with the right other medical teams to make sure that those other health conditions are identified if they're present and taken care of.  And then I think really coming back to what Bev has already touched on, there's the sort of bigger picture of just how people are looked after in their own right but also as part of their family unit.  And making sure that they're given the right information and advice about their health, but also thinking about other family members.  And particularly for younger patients who perhaps either are just starting their own families or for whom that's not yet a consideration, making sure that they've got the information to understand what might be relevant for future family members, if that makes sense.  So it's not necessarily true to say that for every individual patient knowing that there's an inherited blood cancer present will necessarily directly affect the way that the treatment is offered.  But you can see that as a part of a bigger picture for a lot of patients, it will make a difference to their care as a whole.  Amanda: And you can really see how the impact is very sort of multigenerational and is going to affect people at all ages and stages of their life, so that's really interesting.  Katie, Bev spoke a little earlier about the fact that there are genetic tests that can help tell us if blood cancer is inherited.  Could you tell us more about what the tests involve, and some of your experience taking families through this?  Katie: There's sort of two main different ways that we might identify somebody has an inherited cause for their blood cancer through testing.  So traditionally what has happened, as Bev and Sarah sort of discussed before, is that when a person is diagnosed with a blood cancer, we either take a sample of their blood or bone marrow.  To try and look at what are the changes within those cells that have driven that cell to become a cancer cell and have driven this blood cancer to develop.  And a lot of the time, as we've said, it's not inherited, it's not genetic, so they're what we call acquired changes, they're changes that have just happened in the bone marrow or to the blood cells that have caused that kind of particular cell to become a cancer cell.  And it's really important that we look at those because that can help both diagnose the blood cancer, it can give us information about how serious that blood cancer might be, and it can also help us guide our treatments and therapies.  And so if we do those testings, they're primarily done within haematology for those sort of diagnostic or prognostic or treatment purposes.  We do sometimes see then a change that looks a bit suspicious that it might be inherited for various reason.  And if we see something that is in the cancer and it looks like there's a potential it could be inherited, we would go on and do a second test.  So usually because we can't do a blood test because the cancer's in the blood, we would take a skin biopsy.  And then we would look and see, well, is this change also present in the skin?  And if it is, then that indicates that that change is in all of the cells of the body, because it's in both the blood cancer and it's in the skin, and therefore it's likely to be inherited.  So that's one thing that we do.  And I think that that can be quite challenging for patients.  Because they go in to have a test for their blood cancer and then suddenly were being told, “Well, actually, we've also found something that might be inherited,” and it is something then that other members of the family might have.  And as Sarah said, potentially that means that even if your relative was offering to be a bone marrow donor for you, they might not be able to if they also carry the same thing.  And so that can be quite tricky just in terms of making sure that we're guiding the patient and their family members through that process.  And then thinking about the work that Genomics England does, particularly with whole genome sequencing, and this is particularly offered for children and young adults in the paediatric setting.  But I think we're also increasingly, as we progress we'll perhaps talk about this a bit, moving towards whole genome sequencing for adult blood cancers more routinely as well, that that is offered as a sort of standard of care.  And what whole genome sequencing is, is it is looking at the entire genetic instruction manual in both the blood cancer cells and in the cells that we're born with, to look at the inherited or germline genome as well.  And the reason that we look at both the cancer cells and the inherited or germline genome is because what we're trying to understand is firstly, are there any inherited changes that have led to the blood cancer developing?  But also, what are the changes that have just occurred in the cancer cells that are going to help us to diagnose and treat that blood cancer?  So by doing whole genome sequencing we get all of the information about all of the changes that might have happened, we know whether any are inherited, but importantly, we're certain of the ones that have just occurred in the cancer cells and can help guide us with their treatment.  And so, again, when we're talking to patients, we have to explain to them that we're going to be looking at their entire genetic information.  And what's interesting about that is it might find things that are not only relevant to blood cancer, but very rarely other findings, incidental findings as well, or we might find things that we don't know about.  But I think certainly that's something that patients often feel very comfortable with having because it gives them the maximum amount of information.  Amanda: Thanks, Katie.  So it really sounds like there's a lot of advancements that are being made in genetic technology which potentially brings a lot of new things for you and Bev as genetic specialists, but also for you, Sarah, as a haematology specialist.  What does that kind of change for you, and I assume it's really important then for you all to be working together as a multidisciplinary team?  Katie: Yes, I mean, I think for clinical genetics, we were not involved in sort of haematology pathways for a really long time, and the haematologists are absolute experts in the genomic factors that drive blood cancers.  And certainly in my practice, it's really only been as the technology advanced that we really started finding more and more of these inherited factors, particularly in the adult setting.  Because I think in the paediatric and childhood setting, the haematologists again have been managing those conditions very well for years.  And I think there's places that we really interface and we really need to work together as a multidisciplinary team, understanding the genetic information, really understanding when something that we've seen in the blood cancer or the bone marrow could be inherited.  Do we need to check that?  What should that pathway look like?  But I think as you've said, a lot of these are actually really quite new conditions, particularly in the adult setting.  And we don't yet 100% know why do some people get blood cancer and some people don't when they have the same inherited factor.  What's the actual risk?  Are there any other factors modifying it?  What makes some people progress to develop a blood cancer and some people not?  And for that we really need to work together to try and gather the data and sort of capture people that have these inherited changes.  And hopefully develop a system and an infrastructure that we can follow it long-term and get a lot of information about long-term outcomes, both for individuals with cancer but also their families.  And also from looking at doing population studies.  Because I think we know that lots of people in the general population might carry some of these inherited changes and never develop a blood cancer as a result of this, certainly ones that seem a bit lower risk.  So we really need to work together to understand all of that.  But I'd be really interested in Sarah's views on that as well.  Sarah: Yes, sure.  So I think, as you say, Katie, haematologists have got a long history of understanding and interpreting genetic findings in the sort of acquired or somatic changes that we know are what occurs in some blood cells to drive the cancer forming in the first place. But this kind of newer integration of that with the germline testing is something that is becoming much more mainstream in haematology now, and I think something that people have had to sort of acquire new skills in this area to interpret that alongside.  I think as you say, that multidisciplinary working, where we're able to benefit from both sides of our expertise and knowledge and put that together is so valuable, particularly in those circumstances where there is some uncertainty.  And I think as a haematologist, one of the things that I really find a benefit both personally and professionally to help me navigate these tricky questions but that I also think patients benefit from is your expertise and ability to have those really quite tricky conversations with people who are not haematology patients, if that makes sense.  So they may be the relatives of patients who have a haematological diagnosis for example.  Who at the moment are entirely well and were just going about their daily business, and they're now told that they may or may not potentially have this inherited predisposition.  And I think that as haematologists, we're very used to dealing with potentially quite poorly patients, potentially quite scared patients who find themselves, you know, the recipient of all this quite difficult information.  But we're not necessarily so skilled and experienced at holding conversations with people who don't yet have that diagnosis.  And I think that that's a really rich area of mutual aid to one another as haematologists and genetic doctors, if that makes sense.  And I think your points about understanding actually the real risks and the nature history, as we would call it, of what happens to people who carry these variants that predispose them to blood cancers is something that we can probably only work out by working together.  And of course, working with the patients and families that are affected by these conditions so that hopefully for both sides in the future we'll be able to give much better advice to patients and their families.  Amanda: So, Bev, from your experience and as a genetic counsellor, what do you feel are the important things that patients and their families should know as they're going through this testing and diagnosis process?  Bev: The things I think families where there is a hereditary cause found should know is that with this new information comes a whole new referral to a dedicated service.  Who want to help patients and their family members at risk to navigate this, to adjust the information, and to make decisions that fit with them, about whether to have testing and the timing of that.  As we already said, where there is a hereditary blood cancer risk, that risk in family members is rarely 100%.  Depending on what the hereditary predisposition is in the family, we may be able to quantify that risk, sometimes we can't always.  And the other thing to know which links to that is that there is growing interest in research in this area.  That will really help us to improve care in terms of, for example, being able to quantify the risk of developing a blood cancer in relatives who are perfectly well that may have inherited these predisposition gene changes.  Or, for example, the other obvious place where we want to make improvements in terms of some sort of evidence-based surveillance for those people who want to find out that they have inherited the genetic change and are at increased risk.  Amanda: Thank you.  And overall there's been a lot I think we've been covering today that's probably going to be very new to many people.  Why do you think it's important to raise public awareness of inherited blood cancers?  Bev: There have been lots of public awareness campaigns about other cancers, as listeners probably can think about, in terms of for women checking their breasts and breast cancer awareness.  And perhaps there's been a bit less of that in general for blood cancers.  As we've already talked about, clinical genetics were not so involved in all of the genetic testing happening in blood cancers.  Because it wasn't so long ago in the history of how we think about inherited cancers in general that our suspicion of inherited causes in leukaemia was much lower than it is now.  So I think that awareness in the public probably will take a bit more effort to bring up.  But clearly public awareness about blood cancers in general, symptom awareness, and the fact that occasionally it can be something that is running in the family, clearly better public awareness of that means that people are empowered to ask the right questions.  And the questions that might already be in some way going through their minds of their haematology doctors or perhaps of their GP, if they've got a family history but are not affected themselves.  Amanda: Wonderful.  So, looking now to the future, Katie, what genomic advancements are we seeing or are we likely to see that could impact on the care of people with an increased genetic risk of blood cancer?  Katie: We touched a little bit, I think that whole genome sequencing is expanding.  And as we can turn that test around and get it back more quickly that might become more commonplace.  And I know Genomics England and the UK Haemato-oncology Network of Excellence have been doing a lot of work in that area.  We are very lucky now we have a national inherited cancer predisposition register that NHS England have set up with the National Disease Registration Service.  So that will enable us to capture individuals that have these sort of rarer but single gene disorders or conditions that increase the chance of developing blood cancers.  And that will enable us to do that sort of longer-term follow-up and get really more information.  We've touched on this already but I think there's really amazing research happening, why do some people develop blood cancers and some people don't, even though everyone carries the same underlying change that increases the risk?  And then I think really importantly, we're seeing now in some conditions, clinical trials of certain medications to see if that can actually prevent people who carry these inherited changes from progressing to developing blood cancers.  So I think all of those things are really exciting and will give us lots more information that we can then help patients and their families, particularly the sort of treatment and trials aspects.  Amanda: And, Sarah, on treatment and trials, how do think genomics might improve the treatment, but also the diagnosis of people with inherited blood cancers in the future?  Sarah: I think, you know, hopefully when we are able to accrue more information about these underlying genetic predispositions and how they actually then affect people's likelihood of developing blood cancer, we'll be able to build on what we have so far to make that just feel much more robust and evidence based.  And it feels like at the moment there are many of us struggling to bring together small threads of evidence that have been accrued in the UK but in other centres around the world that are also interested in understanding this inherited blood cancer risk.  In such a way that we can actually give patients and their families more clear information and advice about what that means to them.  And I think that in terms of the diagnosis of blood cancer, I think this is something that Bev alluded to.  If we could better understand who might benefit for example from having regular screening or monitoring blood tests performed to see whether we can detect an emerging blood cancer.  Versus identifying those people who actually, the chances of them developing a blood cancer are so small that doing those tests is likely to do them more harm than good.  Perhaps by just causing them to be anxious or have other sort of unintended consequences of that kind of testing.  So understanding something more about that natural history, as we've already alluded to, will hopefully improve our ability to go from the diagnosis of the predisposition condition to working out how to then diagnose the blood cancer on the back of that.  And with time, I think as Katie has alluded to, thinking about more specific treatments and more tailored treatments to the individual predisposition condition and the blood cancer.  So whether it's that you're intervening before the blood cancer has developed to try and reduce that happening, or whether it's that you're then treating the blood cancer after it's developed.  Understanding the genetic basis and what it is that causes that transition would be really helpful and I think that is something that will come but will take time.  And I think on a sort of national level what I would really hope to see over time is that we're able to use that improvement in evidence base to then be able to bring together perhaps more defined patient pathways.  So that if you're diagnosed with a particular condition, one of these leukaemia predisposition syndromes or another form of blood cancer predisposition, there's a recognised strategy and set of steps that should be taken for all of those patients.  To make sure that they're getting equity of care and make sure that everything is being done in a way that feels safe, sensible and appropriate across the country.  While still then enabling us to give really personalised treatment to that individual person and what that diagnosis means for them.  But I think until we've gathered more information and more evidence we are just in the process of trying to do that to then bring about those changes.   Amanda: If you enjoyed today's episode, we'd love your support.  So please subscribe, share and rate us on wherever you listen to your podcasts.  I've been your host, Amanda Pichini.  This podcast was produced by Deanna Barac and edited by Bill Griffin at Ventoux Digital.  Thank you for listening. 

The four-year Cass Review, carried out for NHS England recommends limiting the use of puberty blockers to research settings. 

In CI News this week: Northern Ireland pauses its participation in NHS England's controversial puberty blocker trial, Holyrood legislates to weaken parental opt-out protections in schools, and the CI launches its brand new Faith in Action podcast. You can download the video via this link. Featured stories NI puts puberty-blocker trial participation on hold Holyrood passes controversial Bill to weaken parental opt-out in schools Tribunal told to reconsider case of Christian social worker denied job Faith in Action: a new CI podcast

AI is transforming the world—but is it transforming privacy for better or for risk? We trust our GP with our deepest secrets, but can we extend that same trust to AI-powered systems and cloud-based suppliers? And if AI can re-identify people even in anonymized research data, is “anonymous” still real anymore? In this episode, Punit Bhatia and Tania Palmariellodiviney reveals how AI tools reshape confidentiality, integrity, availability, cloud sprawl, supplier risk, clinical transcription accuracy, re-identification, and even personal fears like voice-based deepfakes. The voice of experience rings clear: digital trust isn't a checkbox…it's engineered early with transparency, responsible data use, privacy by design, and safety by design. 

On 13 March 2025, Keir Starmer announced the abolition of NHS England, the arm's-length body responsible for overseeing, planning, funding and delivering the health service – with its functions to be merged back into the Department of Health and Social Care. Work on the transition is underway but key decisions are still to be made. What are the risks and opportunities associated with abolishing NHS England? How much progress has been made to date? What can be learnt from previous structural changes to the NHS and other parts of government? How can the government get the reform process right? To answer these questions and more, this webinar from the IfG and the Nuffield Trust brought together an expert panel featuring: Mark Dayan, Policy Analyst and Head of Public Affairs at the Nuffield Trust Stuart Hoddinott, Associate Director at the Institute for Government Sarah Reed, Senior Fellow at the Nuffield Trust The webinar was chaired by Nick Davies, Programme Director at the Institute for Government. This webinar was kindly supported by the Nuffield Trust.

On 13 March 2025, Keir Starmer announced the abolition of NHS England, the arm's-length body responsible for overseeing, planning, funding and delivering the health service – with its functions to be merged back into the Department of Health and Social Care. Work on the transition is underway but key decisions are still to be made. What are the risks and opportunities associated with abolishing NHS England? How much progress has been made to date? What can be learnt from previous structural changes to the NHS and other parts of government? How can the government get the reform process right? To answer these questions and more, this webinar from the IfG and the Nuffield Trust brought together an expert panel featuring: Mark Dayan, Policy Analyst and Head of Public Affairs at the Nuffield Trust Stuart Hoddinott, Associate Director at the Institute for Government Sarah Reed, Senior Fellow at the Nuffield Trust The webinar was chaired by Nick Davies, Programme Director at the Institute for Government. This webinar was kindly supported by the Nuffield Trust. Learn more about your ad choices. Visit podcastchoices.com/adchoices

In this special episode, recorded live at the 2025 Genomics England Research Summit, host Adam Clatworthy is joined by parents, clinicians and researchers to explore the long, uncertain and often emotional journey to a genetic diagnosis. Together, they go behind the science to share what it means to live with uncertainty, how results like variants of uncertain significance (VUS) are experienced by families, and why communication and support matter just as much as genomic testing and research. The panel discuss the challenges families face when a diagnosis remains out of reach, the role of research in refining and revisiting results over time, and how collaboration between researchers, clinicians and participants could help shorten diagnostic journeys in the future. Joining Adam Clatworthy, Vice-Chair for the Participant Panel, on this episode are: Emma Baple – Clinical geneticist and Medical Director, South West Genomic Laboratory Hub  Jamie Ellingford – Lead genomic data scientist, Genomics England  Jo Wright – Member of the Participant Panel and Parent Representative for SWAN UK  Lisa Beaton - Member of the Participant Panel and Parent Representative for SWAN UK  Linked below are the episodes mentioned in the episode:  What is the diagnostic odyssey?  What is a Variant of Uncertain Significance?  Visit the Genomics England Research Summit website, to get your ticket to this years event. You can download the transcript, or read it below. Sharon: Hello, and welcome to Behind the Genes. My name is Sharon Jones and today we're bringing you a special episode recorded live from our Research Summit held in June this year. The episode features a panel conversation hosted by Adam Clatworthy, Vice-Chair of the Participant Panel. Our guests explore navigating the diagnostic odyssey, the often-complex journey to reaching a genetic diagnosis. If you'd like to know more about what the diagnostic odyssey is, check our bitesize explainer episode, ‘What is the Diagnostic Odyssey?' linked in the episode description. In today's episode you may hear our guests refer to ‘VUS' which stands for a variant of uncertain significance. This is when a genetic variant is identified, but its precise impact is not yet known. You can learn more about these in another one of our explainer episodes, “What is a Variant of Uncertain Significance?” And now over to Adam. -- Adam: Welcome, everyone, thanks for joining this session. I'm always really humbled by the lived experiences and the journeys behind the stories that we talk about at these conferences, so I'm really delighted to be hosting this panel session. It's taking us behind the science, it's really focusing on the people behind the data and the lived experiences of all the individuals and the families who are really navigating this system, trying to find answers and really aiming to get a diagnosis – that has to be the end goal. We know it's not the silver bullet, but it has to be the goal so that everyone can get that diagnosis and get that clarity and what this means for their medical care moving forwards.    So, today we're really going to aim to demystify what this diagnostic odyssey is, challenging the way researchers and clinicians often discuss long diagnostic journeys, and we'll really talk about the vital importance of research in improving diagnoses, discussing the challenges that limit the impact of emerging research for families on this odyssey and the opportunities for progress. So, we've got an amazing panel here. Rather than me trying to introduce you, I think it's great if you could just introduce yourselves, and Lisa, I'll start with you. Lisa: Hi, I'm Lisa Beaton and I am the parent of a child with an unknown, thought to be neuromuscular, disease. I joined the patient Participant Panel 2 years ago now and I'm also a Parent Representative for SWAN UK, which stands of Syndromes Without A Name. I have 4 children who have all come with unique and wonderful bits and pieces, but it's our daughter who's the most complicated. Adam:  Thank you. Over to you, Jo. Jo:  Hi, I'm Jo Wright, I am the parent of a child with an undiagnosed genetic condition.  So I've got an 11-year-old daughter. 100,000 Genomes gave us a VUS, which we're still trying to find the research for and sort of what I'll talk about in a bit.  And I've also got a younger daughter. I joined the Participant Panel just back in December. I'm also a Parent Rep for SWAN UK, so Lisa and I have known each other for quite a while through that. Adam:  Thank you, Jo.  And, Jamie, you're going to be covering both the research and the clinician side and you kind of wear 2 hats, so, yeah, over to you. Jamie:  Hi, everyone, so I'm Jamie Ellingford and, as Adam alluded to, I'm fortunate and I get to wear 2 hats. So, one of those hats is that I'm Lead Genomic Data Scientist for Rare Disease at Genomics England and so work as part of a really talented team of scientists and engineers to help develop our bioinformatic pipelines, so computational processes. I work as part of a team of scientists and software engineers to develop the computation pipelines that we apply at Genomics England as part of the National Health Service, so the Genomic Medicine Service that families get referred to and recruited to, and we try to develop and improve those. So that's one of my hats. And the second of those is I am a researcher, I'm an academic at the University of Manchester, and there I work really closely with some of the clinical teams in the North West to try and understand a little bit more about the functional impact of genomic variants on kind of how things happen in a cell. So, we can explore a little bit more about that but essentially, it's to provide a little bit more colour as to the impact that that genomic variant is having. Adam: Great, thank you, Jamie. Over to you, Emma. Emma: My name's Emma Baple, I'm an academic clinical geneticist in Exeter but I'm also the Medical Director of the South West genomic laboratory hub, so that's the Exeter and Bristol Genomics Laboratory. And I wear several other hats, including helping NHS England as the National Specialty Advisor for Genomics. Adam: Thank you all for being here. I think it's really important before we get into the questions just to ground ourselves in like those lived experiences that yourself and Jo and going through. So, Lisa, I'm going to start with you. The term ‘diagnostic odyssey' gets bandied around a lot, we hear about it so many times, but how does that reflect your experience that you've been through and what would you like researchers and clinicians to understand about this journey that you're on, essentially? Lisa: So I think ours is less an odyssey and more of a roller-coaster, and I say that because we sort of first started on a genetic journey, as it were, when my daughter was 9 weeks of age and she's now 16½ – the half's very important – and we still have no answers. And we've sort of come a bit backwards to this because when she was 6 months old Great Ormond Street Hospital felt very strongly that they knew exactly what was wrong with her and it was just a case of kind of confirmation by genetics. And then they sent off for a lot of different myasthenia panel genes, all of which came back negative, and so having been told, “Yes, it's definitely a myasthenia, we just need to know which one it is,” at 4 years of age that was removed and it was all of a sudden like, “Yeah, thanks, sorry.” And that was really hard actually because we felt we'd had somewhere to hang our hat and a cohort of people with very similar issues with their children, and then all of a sudden we were told, “No, no, that's not where you belong” and that was a really isolating experience. I can remember sort of saying to the neuromuscular team, “Well is it still neuromuscular in that case?” and there was a lot of shrugging of shoulders, and it just…  We felt like not only had we only just got on board the life raft, then we'd been chucked out, and we didn't even have a floaty. And in many ways I think I have made peace with the fact that we don't have a genetic diagnosis for our daughter but it doesn't get easier in that she has her own questions and my older children – one getting married in August who's already sort of said to me, you know, “Does this have implications for when we have children?”  And those are all questions I can't answer so that's really hard. Adam:  Thank you, Lisa. Yourself, Jo, how would you describe the odyssey that you're currently experiencing? Jo: So my daughter was about one when I started really noticing that she was having regressions. They were kind of there beforehand but, I really noticed them when she was one, and that's when I went to the GP and then got referred to the paediatrician. So initially we had genetic tests for things like Rett syndrome and Angelman syndrome, which they were all negative, and then we got referred on to the tertiary hospital and then went into 100,000 Genomes. So we enrolled in 100,000 Genomes at the beginning of 2017, and we got our results in April of 2020, so obviously that was quite a fraught time. Getting our results was probably not as you would want to do it because it was kind of over the phone and then a random letter. So, what I was told in that letter was that a variant of uncertain significance had been identified and they wanted to do further research to see if it might be more significant. So we were to be enrolled into another research project called Splicing and Disease, which wasn't active at the time because everything had been put on hold for COVID, but eventually we went into that. So, I didn't know what the gene was at that point, when I eventually got the form for going to get her bloods done…  So that went off and then that came back and the geneticist said, “That gives us some indication that it is significant.” So, since that point it's been trying to find more information and research to be able to make it a diagnosis. There have been 2 sort of key things that have happened towards that but we're still not there. So one of the things is that a research paper came out earlier this year so that's kind of a little bit more evidence, it's not going to give us a diagnosis but it kind of, you know, sits there. And the other thing is that my geneticist said, “Actually, yeah, it looks like it's an important change.”  That's as far as we've got. So we've still got work to do to make it a diagnosis or not.  Obviously if it is a diagnosis, it is still a one-of-a-kind diagnosis, so it doesn't give me a group to join or that kind of thing. But now I've got that research paper that I've read and read, and asked ChatGPT to verify that I've understood it right in some places, you know, with the faith that we put into ChatGPT (laughs), I've got a better understanding and I've got something now that I can look back on, the things that happened when my daughter was one, 2, 3, 4 and her development was all over the place and people thought that I was slightly crazy for the things I was saying, that “Actually, no, I can see what's happening.” So, it's like the picture's starting to come into focus but there's work to do. I haven't got a timeframe on that, I don't know when it's going to come together. And I always say that I'm a prolific stalker of the postman; ever since our first genetic tests you're just constantly waiting for the letters to drop through the door. So a diagnostic odyssey to me is just waiting for random events. Adam: I think what you've both kind of really clearly elaborated on is how you're the ones that are having to navigate this journey, you're the ones that are trying to piece this puzzle together, and the amount of time you're investing, all whilst navigating and looking after your child and trying to cope with the daily lived experience as well. And something you've both touched on that I'd love to draw out more is about how exactly was the information shared with you about the lack of diagnosis or the VUS or what's going on, because in our case you get this bit of paper through the post that has all these numbers and it's written in clinical speak and we had no conversation with the geneticist or the doctors. You see this bit of paper and you're reading it, scared for what the future will hold for your child, but I'd love to know like how were you communicated whilst all this is going on, how did you actually find out the next steps or any kind of future guidance. Lisa: So I think in our case we kept sort of going onto neuromuscular appointments, and I think for probably the first 5 years of my daughter's life I kind of had this very naïve thought that every time we turned up to an appointment it would be ‘the one' and then…   I think it would've been really helpful actually in those initial stages if they had said to us, “Actually, we don't know when this is going to happen, if it's even going to happen, you need to kind of prepare yourself for that.” It sounds fairly obvious to say but you don't know what you don't know. And in some ways we were getting genetic test results back for some really quite horrible things and they would tell us, “Oh it's good news, this mitochondrial disorder hasn't come up,” and so part of you is like, “Yay!” but then another part of you is thinking, “Well if it's not that what is it?” And we've very much kind of danced around and still don't really have an answer to whether it's life-limiting. We know it's potentially life-threatening and we have certain protocols, but even that is tricky. We live in North Yorkshire, and our local hospital are amazing. Every time we go in, if it's anything gastro-related, they say to me, “What's the protocol from Great Ormond Street?” and I say, “We don't have one” (laughs) and that always causes some fun. We try to stay out of hospitals as much as we absolutely can and do what we can at home but, equally, there's a point where, you know, we have to be guided by where we're going with her, with the path, and lots of phone calls backwards and forwards, and then is it going to be a transfer down to Great Ormond Street to manage it. And actually the way I found out that nothing had been found from 100,000 Genomes was in a passing conversation when we had been transferred down to Great Ormond Street and we'd been an inpatient for about 6 weeks and the geneticist said to me, “So obviously with you not having a diagnosis from the 100,000 Genomes…” and I said, “Sorry?  Sorry, what was that?  You've had the information back?”  And she said, “Well, yes, did nobody write to you?” and I said, “No, and clearly by my shock and surprise.” And she was a bit taken aback by that, but it happened yet again 2 years later (laughs) when she said, “Well you know everything's been reanalysed” and I said, “No.”  (Laughs)  And, so that's very much, it still feels an awful lot like I'm doing the heavy lifting because we're under lots of different teams and even when they're working at the same hospital they don't talk to each other. And I do understand that they're specialists within their own right, but nobody is really looking at my daughter holistically, and there are things that kind of interrelate across.    And at one of the talks I attended this morning they were talking about the importance of quality of life, and I think that is something that has to be so much more focused on because it's hard enough living without a diagnosis, but when you're living with a bunch of symptoms that, I think the best way I can describe it is at the moment we've got the spokes of the umbrella but we don't have the wrapper, and we don't know where we're going with it. We can't answer her questions, we can't even necessarily know that we're using the most effective treatments and therapies for her, and she's frustrated by that now, being 16, in her own right, as well as we are. And I'm panicking about the navigation towards Adult Services as well because at the minute at least we have a clinical lead in our amazing local paediatrician but of course once we hit and move into that we won't even have him and that's a really scary place to be, I think. Adam: Jo, is there anything you wanted to add on that in terms of how you've been communicated to whilst all this is going on? Jo: Yeah, so I think part of what makes it difficult is if you're across different hospitals because they're not necessarily going to see the same information. So obviously it was a bit of a different time when I got our results, but I got our results on a virtual appointment with a neurologist in one hospital, in the tertiary hospital, and because he could see the screen because it was the same hospital as genetics, and he said, “Oh you've got this” and then the letter came through later. When I had my next appointment with the neurologist in our primary hospital, or secondary care, whatever it's called, in that hospital, he hadn't seen that, so I'm telling him the results, which isn't ideal, but it happens quite a lot. What I think is quite significant to me is the reaction to that VUS.  I have to give it, the doctors that look after my daughter are brilliant, and I'm not criticising them in any way but their reaction to a VUS is “I'm so grateful for the persistence to get to a diagnosis.” Neurologists are a bit more like “Oh it's a VUS so it might be significant, it might be nothing.” Actually, as a patient, as in a parent, you actually want to know is it significant or not, “Do I look at it or not?” And, I mean, like I said, there were no research papers to look at before anyway until a few months ago so I didn't have anything to look at, but I didn't want to look at it either because you don't want to send yourself off down a path. But I think that collective sort of idea that once someone gets a VUS we need a pathway for it, “What do we do with it, what expectation do we set the patients up with and what is the pathway for actually researching further?” because this is where we really need the research. Adam:  Thank you, Jo. So, Emma, over to you in terms of how best do you think clinicians can actually support patients at navigating this odyssey and what's the difference between an initial diagnosis and a final diagnosis and how do you then communicate that effectively to the patients and their family?   Emma: So I think a key thing for me, and it's come up just now again, is that you need to remember as a doctor that the things you say at critical times in a patient's or parent's journeys they will remember – they'll remember it word for word even though you won't – and thinking about how to do that in the most sensitive, empathetic, calm, not rushed way is absolutely key.   And there are some difficulties with that when you're in a very high-pressure environment but it is absolutely crucial, that when you are communicating information about test results, when you're talking about doing the test in the first place, you're consenting the family, you're explaining what you're trying to do and those conditions, you balance how much information you give people.    So, you were talking earlier about “So you haven't got this diagnosis, you haven't got that diagnosis,” I often think it's…  We're often testing for numerous different conditions at the same time, I couldn't even list them all to the parents of the children or the patient that I'm testing. It's key to try and provide enough information without overwhelming people with so much information and information on specific conditions you are just thinking about as a potential.  Sometimes very low down your list actually but you can test for them.    Because people go home and they use the internet and they look things up and they get very, very worried about things. So, for me it's trying to provide bite-sized amounts of information, give it the time it deserves, and support people through that journey, tell them honestly what you think the chance of finding a diagnosis is. If you think it's unlikely or you think you know, sharing that information with family is helpful.   Around uncertainty, I find that a particular challenge. So, I think we've moved from a time when we used to, in this country, declare every variant we identified with an uncertain significance. Now, if we remember that we've all got 5 million variants in our genome, we've all got hundreds and hundreds… thousands and thousands, in fact, of variants of uncertain significance in our genetic code. And actually, unless you think a variant of uncertain significance genuinely does have a probability of being the cause of a child's or a patient's condition, sharing that information can be quite harmful to people.    We did a really interesting survey once when we were writing the guidelines for reporting variants of uncertain significance a few years ago. We asked the laboratories about their view of variants of uncertain significance and we asked the clinicians, and the scientists said, “We report variants of uncertain significance because the clinicians want them” and the clinicians said, “If the labs put the variant of uncertain significance on the report it must be important.” And of course, if you're a parent, if the doctor's told you the variant is a variant of uncertain significance of course you think it's important.    So, we should only be sharing that information, in my opinion, if it genuinely does have a high likelihood of being important and there are things that we can do. And taking people through that journey with you, with the degree of likelihood, the additional tests you need to do and explaining to them whether or not you think you will ever clarify that, is really, really key because it's very often that they become the diagnosis for the family.  Did I cover everything you think's important, both of you?  Lisa: I think the one thing I would say is that when you are patient- or parent-facing, the first time that you deliver that news to the parent… you may have delivered that piece of news multiple times and none of us sit there expecting you to kind of be overcome with emotion or anything like that but, in the same way that perhaps you would've had some nerves when, particularly if it was a diagnosis of something that was unpleasant, you know, to hold onto that kind of humanity and humility. Because for those patients and parents hearing that news, that is the only time they're ever hearing that, and the impact of that, and also, they're going on about with their day, you don't know what else they're doing, what they're juggling.    We're not asking you all to be responsible for kind of, you know, parcelling us up and whatnot but the way information is imparted to us is literally that thing we are all hanging our hats on, and when we're in this kind of uncertainty, from my personal experience I'm uncomfortable, I like to be able to plan, I'm a planner, I'm a researcher, I like to sort of look it up to the nth degree and that, and sitting in a place without any of that is, it's quite a difficult place to be. And it's not necessarily good news for those parents when a test comes back negative, because if it's not that then what is it, and that also leaves you feeling floundering and very isolated at times.  Adam: Yeah, and you touched upon the danger of like giving too much information or pushing families down a particular route, and then you have to pull them out of it when it's not that.   You talked about the experience you had, you felt like you'd found your home and then it's like, “Well, no, no, sorry, actually we don't think it's that.” And you've invested all of your time and your emotion into being part of that group and then you're kind of taken away again. So it's to the point where you have to be really sure before you then communicate to the families, and obviously in the meantime the families are like, “We just need to know something, we need to know,” and it's that real fine line, isn't it?    But, Jamie, over to you. Just thinking about the evolving nature of genomic diagnosis, what role does research play in refining or confirming a diagnosis over time?  Jamie: So it's really, really difficult actually to be able to kind of pinpoint one or 2 things that we could do as a community of researchers to help that journey, but perhaps I could reflect on a couple of things that I've seen happen over time which we think will improve things. And one of that's going back to the discussion that we've just had about how we classify genetic variants. And so, behind that kind of variant of uncertain significance there is a huge amount of effort and emotion from a scientist's side as well because I think many of the scientists, if not all, realise what impact that's going to have on the families.   And what we've tried to do as a community is to make sure that we are reproducible, and if you were to have your data analysed in the North West of England versus the South West that actually you'd come out with the same answer. And in order to do that we need guidance, we need recommendations, we need things that assist the scientists to actually classify those variants.  And so, what we have at the moment is a 5 point scale which ranges from benign to likely benign, variant of uncertain significance, unlikely pathogenic variant and pathogenic variant. It's objective as to how we classify a variant into one of those groups and so it's not just a gut feeling from a scientist, it's kind of recordable measurable evidence that they can provide to assist that classification.   So in many instances what that does is provide some uncertainty, as we've just heard, because it falls into that zone of variant of uncertain significance but what that also does is provide a framework in which we can generate more evidence to be able to classify it in one direction or another to become likely pathogenic or to become likely benign. And as a research community we're equipped with that understanding –– and not always with the tools but that's a developing area – to be able to do more about it.   What that doesn't mean is that if we generate that evidence that it can translate back into the clinic, and actually that's perhaps an area that we should discuss more. But kind of just generating that evidence isn't always enough and being able to have those routes to be able to translate back that into the hands of the clinicians, the clinical scientists, etc, is another challenge. Adam:  And how do you think we can drive progress in research to deliver these answers faster, to really try and shorten those diagnostic journeys, like what are the recommendations that you would say there? Jamie:  So being able to use the Genomics England data that's in the National Genomic Reference Library, as well as kind of other resources, has really transformed what we can do as researchers because it enables teams across the UK, across the world to work with data that otherwise they wouldn't be able to work with.   Behind that there's an infrastructure where if researchers find something which they think is of interest that can be reported back, it can be curated and analysed by teams at Genomics England and, where appropriate, kind of transferred to the clinical teams that have referred that family. And so having that pathway is great but there's still more that we can do about this. You know, it's reliant on things going through a very kind of fixed system and making sure that clinicians don't lose contact with families – you know, people move, they move locations, etc. And so, I think a lot of it is logistical and making sure that the right information can get to the right people, but it all falls under this kind of umbrella of being able to translate those research findings, where appropriate, into clinical reporting.   Adam:  Thank you. And, Emma, is there anything you would add in terms of like any key challenges that you think need to be overcome just to try and shorten the journeys as much as possible and find the answers to get a diagnosis?  Emma: I think trying to bridge that gap between some of the new technologies and new approaches that we've got that we can access in a research context and bringing those into diagnostics is a key area to try to reduce that diagnostic odyssey, so I really want to see the NHS continuing to support those sorts of initiatives.   We're very lucky, as Jamie said, the National Genomic Research Library has been fundamental for being able to reduce the diagnostic odyssey for large numbers of patients, not just in this country but around the world, and so trying to kind of look at how we might add additional data into the NGRL, use other research opportunities that we have in a more synergistic way with diagnostics I think is probably key to being able to do that.    We are very lucky in this country with the infrastructure that we've got and the fact that everything is so joined up. We're able to provide different opportunities in genomics for patients with rare conditions that aren't so available elsewhere in the world.  Adam: Great, thank you. I think we're it for time, so thank you very much to the panel. And I'd just say that if you do have any further questions for ourselves as participants then we're only too happy to pick those up. Thank you for lasting with us ‘til the end of the day and hope to see you soon.  -- Sharon: A huge thank you to our panel, Adam Clatworthy, Emma Baple, Jo Wright, Lisa Beaton and Jamie Ellingford, for sharing their insights and experiences. Each year at the summit, the Behind the Genes stage hosts podcast style conversations, bringing together researchers, clinicians and participants to discuss key topics in genomics.  If you're interested in attending a future Genomics England Research Summit, keep an eye out on our socials. If you'd like to hear more conversations like this, please like and subscribe to Behind the Genes on your favourite podcast app. Thank you for listening.    I've been your host, Sharon Jones. The podcast was edited by Bill Griffin at Ventoux Digital and produced by Deanna Barac.

This is the first of a series of four podcasts (and associated blogs) about how we can integrate more physical activity across the NHS and what key actions health and care professionals can do to support the strategic shift from ‘Sickness to Prevention' and from ‘Hospital to Community'. The first podcast kicks off with an introductory episode, by Sarah Price, Director of Public Health for NHS England and Sasha Karikusevic, Director, NHS Horizons, who outline how we can harness the true potential of physical activity across the NHS to help to prevent ill-health and help people to live healthier, longer, and more independent lives, with best-practice examples across England to illustrate the benefits. A full transcript of this episode is available on our website - https://www.england.nhs.uk/long-read/four-ways-forward-podcast/ Please get in touch if you have any questions regarding this episode - england.medicalcomms@nhs.net

The government is making major changes to the structure of the NHS. NHS England is being abolished, with its functions merged into the Department of Health and Social Care (DHSC). At the same time, the number of Integrated Care Boards (ICBs) is set to be reduced, with many expected to merge. Changes proposed by the 10 Year Health Plan, including contracts for single and multi-neighbourhood providers, will also create changes in local delivery structures. How can the government ensure that the new national structure works effectively? Should any current NHSE functions remain independent of DHSC? How should the reformed DHSC work regionally, and with ICBs, strategic authorities and trusts? How can the government make a success of the emerging ICB structure? How should local delivery structures be reformed? To discuss these questions and more, we were joined by an expert panel including: Dr Penelope Dash, Chair of NHS England Dame Patricia Hewitt, former Secretary of State for Health and author of the Hewitt Review of ICSs Samantha Jones, Permanent Secretary at the Department of Health and Social Care Johan Kahlström, President and Managing Director, UK and Ireland at Novartis Pharmaceuticals UK This event was chaired by Nick Davies, Programme Director at the Institute for Government. We would like to thank Novartis Pharmaceuticals UK for kindly supporting this event.

The government is making major changes to the structure of the NHS. NHS England is being abolished, with its functions merged into the Department of Health and Social Care (DHSC). At the same time, the number of Integrated Care Boards (ICBs) is set to be reduced, with many expected to merge. Changes proposed by the 10 Year Health Plan, including contracts for single and multi-neighbourhood providers, will also create changes in local delivery structures. How can the government ensure that the new national structure works effectively? Should any current NHSE functions remain independent of DHSC? How should the reformed DHSC work regionally, and with ICBs, strategic authorities and trusts? How can the government make a success of the emerging ICB structure? How should local delivery structures be reformed? To discuss these questions and more, we were joined by an expert panel including: Dr Penelope Dash, Chair of NHS England Dame Patricia Hewitt, former Secretary of State for Health and author of the Hewitt Review of ICSs Samantha Jones, Permanent Secretary at the Department of Health and Social Care Johan Kahlström, President and Managing Director, UK and Ireland at Novartis Pharmaceuticals UK This event was chaired by Nick Davies, Programme Director at the Institute for Government. We would like to thank Novartis Pharmaceuticals UK for kindly supporting this event. Learn more about your ad choices. Visit podcastchoices.com/adchoices

In this episode, we explore something a little different, but deeply connected to everything we do in medicine, leadership, and human connection: the power of storytelling. Whether it's patient handover, clinician-to-clinician stories, or the messroom chat, stories fill our everyday lives. My guest today is Clare Murphy, a world-renowned storyteller who has been bringing the ancient art of story firmly into the modern world since 2006. Clare has performed across the globe, sharing stories with audiences as diverse as the All-Blacks coaches, Mission Critical Teams, scientists, schoolchildren, and even Irish President Mary Robinson. Her work also transcends entertainment. Clare teaches storytelling as a tool for connection, communication, and meaning-making, working with diverse communities that include asylum seekers, climate scientists, social entrepreneurs, firefighters, and veterans who have lost limbs.Her client list speaks volumes: NASA, the All-Blacks, the Mission Critical Team Institute, The Drive Project, Social Entrepreneurs Ireland, Routes Collective, and NHS England. Together, we'll unpack how story shapes the way we understand the world, how it can help us connect with our teams, our patients, and ourselves in the moments that matter most. You can find Clare's work here: https://claremurphy.org/Empirical research suggests that Paramedics routinely recount emergency calls during downtime to make sense of their work. This storytelling functions as a form of tactical resilience to managers, other services, patients, bystanders, and each other, and often involves strong language. The paper can be found here:https://www.researchgate.net/publication/251772924_Heroes_and_Lies_Storytelling_Tactics_among_ParamedicsThis Podcast is sponsored by World Extreme Medicine.World Extreme Medicine provides internationally recognised education for clinicians and operators working in pre-hospital, remote, expedition, humanitarian, and high-risk environments. Their programmes focus on practical, experience-led learning, equipping professionals with the skills to make sound clinical and operational decisions when resources are limited, evacuation is delayed, and conditions are extreme.With courses covering expedition and wilderness medicine, hostile environments, dive medicine, human performance, leadership, and austere care, World Extreme Medicine brings together a global faculty with real-world experience from some of the most challenging settings on earth. To explore courses, free educational resources, and upcoming webinars, visit:www.worldextrememedicine.com

Risky Business returns for 2026! Patrick Gray and Adam Boileau talk through the week's cybersecurity news, including: Santa brings hackers MongoDB memory leaks for Christmas Vercel pays out a million bucks to improve its React2Shell WAF defences 39C3 delivers; the pink Power Ranger deletes nazis, while a catgirl ruins GnuPG Cambodian scam compound kingpin gets extradited to China, and we don't think it'll go well for him Krebs picks apart the Kimwolf botnet and residential proxy networks So many healthcare data leaks that we have a roundup section This week's episode is sponsored by Airlock Digital. The founders of the application allow-listing vendor, David Cottingham and Daniel Schell, discuss Microsoft's ClickOnce .NET app packaging, and how attackers have been abusing it to load code. Airlock hates it when you load code! This episode is also available on Youtube. Show notes US, Australia say ‘MongoBleed' bug being exploited | The Record from Recorded Future News Merry Christmas Day! Have a MongoDB security incident. | by Kevin Beaumont | Dec, 2025 | DoublePulsar Inside Vercel's sleep-deprived race to contain React2Shell | CyberScoop gpg.fail Hacktivist deletes white supremacist websites live onstage during hacker conference | TechCrunch Chinese attackers exploiting zero-day to target Cisco email security products | The Record from Recorded Future News Ni8mare  -  Unauthenticated Remote Code Execution in n8n (CVE-2026-21858) | Cyera Research Labs ServiceNow patches critical AI platform flaw that could allow user impersonation | CyberScoop Alleged cyber scam kingpin arrested, extradited to China | The Record from Recorded Future News FCC IoT labeling program loses lead company after China probe | Cybersecurity Dive Trump picks Lt. Gen. Joshua Rudd to lead NSA spy agency - The Washington Post NSA cyber directorate gets new acting leadership | The Record from Recorded Future News Dutch court sentences hacker who used port systems to smuggle cocaine to 7 years | The Record from Recorded Future News ECLI:NL:GHAMS:2026:22, Amsterdam Court of Appeal, 23-003218-22 The Kimwolf Botnet is Stalking Your Local Network – Krebs on Security Who Benefited from the Aisuru and Kimwolf Botnets? – Krebs on Security Coupang recovers smashed laptop that alleged data leaker threw into river | The Record from Recorded Future News Ransomware responders plead guilty to using ALPHV in attacks on US organizations | The Record from Recorded Future News Nearly 480,000 impacted by Covenant Health data breach | The Record from Recorded Future News Illinois health department exposed over 700,000 residents' personal data for years | TechCrunch Tech provider for NHS England confirms data breach | TechCrunch Hacker claiming to be behind ManageMyHealth breach: ‘I do it for the money and I'm in negotiations to get it' - NZ Herald

The government has announced a new NHS online hospital service is being launched in England next year. It will focus on nine health conditions, including glaucoma, age-related macular degeneration and cataracts.Amelia spoke to RNIB Head of Policy, Mike Wordingham, to learn about what this means for blind and partially sighted people in England.Image shows the RNIB Connect Radio logo. On a white background ‘RNIB' written in bold black capital letters and underline with a bold pink line. Underneath the line: ‘Connect Radio' is written in black in a smaller font. Learn more on the NHS England website - NHS England » Menopause and prostate conditions prioritised for NHS's new online hospital

In today's Tech and Science Daily from The Standard, NHS England sets out priority conditions for its upcoming NHS Online hospital, and CES 2026 kicks off with Intel's new Panther Lake-era laptop chips and fresh Acer ultrabooks. Plus, Arc Raiders confirms “aggression-based matchmaking” that groups PvP-heavy players together. Hosted on Acast. See acast.com/privacy for more information.

In the latest episode of the Transforming Primary Care podcast, Dr Sarah Zaidi, GP and NHS England regional lead for frailty in the East of England and a panel of North-East and Yorkshire based GPs, geriatricians and other health and care professionals discuss how to help the most vulnerable people in our communities. They explore how the identification and successful management of frailty is key to the aims of the 10 Year Plan and the medium-term planning framework, as well as its role within neighbourhood working. For more information on neighbourhood health visit: https://www.england.nhs.uk/long-read/neighbourhood-health-guidelines-2025-26/ A full transcript of this episode is available on our website - https://www.england.nhs.uk/long-read/transforming-primary-care-podcast-2/ Please get in touch if you have any questions regarding this episode - england.ney.pctransformation@nhs.net

The Cybercrime Wire, hosted by Scott Schober, provides boardroom and C-suite executives, CIOs, CSOs, CISOs, IT executives and cybersecurity professionals with a breaking news story we're following. If there's a cyberattack, hack, or data breach you should know about, then we're on it. Listen to the podcast daily and hear it every hour on WCYB. The Cybercrime Wire is brought to you Cybercrime Magazine, Page ONE for Cybersecurity at https://cybercrimemagazine.com. • For more breaking news, visit https://cybercrimewire.com

Professor Tony Avery,  National Clinical Director for Prescribing for NHS England, discusses safer prescribing of medicines. He highlights the changes he would like to see to enable patients to make genuinely informed decisions, which may also sometimes mean that they decide not to go ahead with a treatment. Tony describes how he believes doctors and patients can work together on initial prescribing decisions,  so that patients can be confident that the benefits of the selected approach outweigh the risks. You can find out more about this podcast on its website and if you would like to support it you can do so via Patreon at or via PayPal. The host of the podcast, Liz Tucker is an award winning medical journalist and former BBC producer and director.  You can follow Liz on X and read further information about the podcast on her Substack newsletter. Medical Evidence Matters with Liz Tucker has been selected by Feedspot as one of the top 15 UK Medical Podcasts https://blog.feedspot.com/uk_medical_podcasts/

Last week, there was an average of 2660 people a day with flu in England's hospital beds, a 55% increase on the week before. A more virulent, mutated strain is being blamed for the spike in cases. Also: President Zelensky insists Ukraine must have a vote before ceding any territory to Russia. And: ticket prices for next year's football World Cup are revealed.

 Merry Christmas! This month for the December 2025 episode of the RCEM Learning Podcast Andy and Dave are talking about higher MAP targets in sepsis and the routine use of antibiotics for max-fax fractures. Rob attempts a festive round up of the most impactful guidelines of the year. We'll then end with New Online. If you'd like to email us, please feel free to do so here. After listening, complete a short quiz to have your time accredited for CPD at the RCEMLearning website! (03:19) New in EM - Higher MAP targets in Sepsis Efficacy of targeting high mean arterial pressure for older patients with septic shock (OPTPRESS): a multicentre, pragmatic, open-label, randomised controlled trial (Endo et al., 2025) (15:19) Most Impactful Guidelines of the Year European Resucitation Guidelines - Guidelines on Cardiopulmonary Resuscitation (ERC, 2025) NHS England - Urgent and emergency care plan 2025/26 (NHS England, 2025) NHS England - Guidance to support the commissioning and delivery of ambulance services in 2025/26(NHS England, 2025) NICE - NG246 Overweight and obesity management (NICE, 2025) NICE - NG253 - Suspected sepsis in people aged 16 or over: recognition, assessment and early management (NICE, 2025) NICE - NG254 - Suspected sepsis in under 16s: recognition, diagnosis and early management (NICE, 2025) NICE - NG255 - Suspected sepsis in pregnant or recently pregnant people: recognition, diagnosis and early management (NICE, 2025) RCPCH - Facing the Future - standards for children and young people in emergency care settings (RCPCH, 2025) RCEM - GPEMS(RCEM, 2025) (38:07) New in EM - Routine use of antibiotics in facial fractures Prophylactic antibiotic use in trauma patients with non-operative facial fractures: A prospective AAST multicenter trial (Mian et al., 2025) (47:10) New Online – new articles on RCEMLearning for your CPD Is Normalisation of Deviance the "Standard" in Medicine? - Neel Bhandani Mental Illness in Children by Jidhin Davis Rest, sleep, and our breaks - the conversation we cant tire of - Amar Mashru

In this week's episode of the Full of Beans podcast, Han is joined by Dr Tomos Williams. Tom has worked in the CWP Eating Disorder Service since May 2022. He works across community and specialist inpatient settings. He is the Psychiatric lead in the regional Type 1 Diabetes and Disordered Eating Clinic, the local MEED lead, and also works with patients with complex presentations, acting as a link person for local acute trusts. He is a member of the Royal College of Psychiatry Eating Disorder Faculty Executive Committee.This week, we discuss:What T1DE is, and why “diabulimia” is an outdated termThe life-threatening risks of insulin omissionHow eating disorders and diabetes treatment often conflictWhy T1DE clinics are essential, but underfundedThe role of eating disorder and diabetes professionalsWhat joined-up, trauma-informed care looks likeThe outcomes and success of T1DE pilotsThe urgent need for political support to save these servicesTimestamps:01:30 – What is Type 1 Diabetes and Disordered Eating (T1DE)04:00 – Medical risks associated with insulin omission08:50 – Building the T1DE clinic & lack of national funding13:10 – The power of a multi-disciplinary team18:40 – Early signs of T1DE and what clinicians should look for22:10 – Impact of trauma & perfectionism in diabetes25:00 – Outcomes & HbA1c improvements29:00 – Barriers to insulin pump access33:20 – Can you recover from EDs while managing diabetes?Resources & Links:The Compassion Project (Wessex & London T1DE Pilot)Parliamentary Inquiry into T1DE (2023)Diabetes UK on T1DEWant to help save T1DE services?Write to your local MP and demand continued funding. Mention the NHS England pilot outcomes and the need for integrated care for patients with type 1 diabetes and eating disorders.Connect with Us:Subscribe to the Full of Beans Podcast hereFollow Full of Beans on Instagram hereCheck out our website here⚠️ Trigger Warning: This episode discusses lived experiences of eating disorders, restrictive behaviours, and mentions of specific foods. Please take care when listening.If you enjoyed this episode, don't forget to subscribe, rate, and share the podcast to help us spread awareness.Sending positive beans your way, Han

Contact us and share your opinionJoin eGPlearning as we take a look at the NHS Medium Term Planning Framework. This document was published by NHS England on 24 October 25 and provides more detail on how DoH and NHSE will deliver on the aspirations outlined in the NHS 10 year plan.This summary will help you understand where your ICB, Place, PCN and Practice are being asked to focus over the next 4 years.The document covers how responsibilities for delivery will be distributed across different levels of within the system from the centre down to neighbourhoods and the layers in between, how aspirations will align with the three darzi shifts, and describes specific targets in the areas of; elective care, cancer and diagnostics, urgent and emergency care, primary care, community health services, mental health, learning disabilities and workforce.Boost your triage skills with our dynamic 5-session live webinar course, tailored for primary care clinicians. Led by Dr. Gandalf and Dr. Ed Pooley, this comprehensive training covers all facets of remote patient triage—digital, on-call, and more. Gain practical knowledge, exclusive tips, and direct access to our experts through open Q&A sessions. Elevate your ability to manage primary care challenges effec Subscribe and hear the latest EPIC episode. Join Dr Mike as he shares how to get started and fly using EMIS to make your life easier with this clinical systembit.ly/EMIScourse

Doctors Sara and Lisa speak to Dr Chris Nortcliff who is a GP and Chief Clinical Information Officer for Greater Manchester Primary Care Provider Board. The discussion is focussed around all things digital in primary care. We start with an overview of how the digital environment is set up within Greater Manchester. We then spend some time talking about digital inclusion - covering how to find people, how to help upskill them to be more digitally literate, and how to support better access to digital services. We also explore what is available in the digital space to help in primary care, and touch on AI and large language models. You can use these podcasts as part of your CPD - we don't do certificates but they still count :) Resources: Greater Manchester Care Record: https://gmwearebettertogether.com/ Health Innovation Manchester: https://healthinnovationmanchester.com/ Greater Manchester Digital First Primary Care: https://healthinnovationmanchester.com/our-work/gm-digital-first-primary-care/ Digital Skills Map: https://greatermanchester-ca.gov.uk/what-we-do/digital/get-online-greater-manchester/greater-manchester-wide-support/get-online-greater-manchester-digital-skills-map/ National Databank: https://www.goodthingsfoundation.org/our-services/national-databank The Good Things Foundation: https://www.goodthingsfoundation.org/ NHS App: https://www.nhs.uk/nhs-app/ Digital Facilitator Team: https://gmpcb.org.uk/general-practice/digital-transformation/dfpc-programme-explained/meet-the-team/ Greater Manchester Primary Care Provider Board Website: https://gmpcb.org.uk/general-practice/digital-transformation/ Clinical safety standards - DCB 0129: https://digital.nhs.uk/data-and-information/information-standards/governance/latest-activity/standards-and-collections/dcb0129-clinical-risk-management-its-application-in-the-manufacture-of-health-it-systems/ Clinical safety standards - DCB0160: https://digital.nhs.uk/data-and-information/information-standards/governance/latest-activity/standards-and-collections/dcb0160-clinical-risk-management-its-application-in-the-deployment-and-use-of-health-it-systems/ Digital Inclusion Framework by NHS England: https://www.england.nhs.uk/long-read/inclusive-digital-healthcare-a-framework-for-nhs-action-on-digital-inclusion/ Digital Inclusion Heat Map: https://www.thrivebydesign.org.uk/digital-exclusion-heatmap ___ We really want to make these episodes relevant and helpful: if you have any questions or want any particular areas covered then contact us on Twitter @PCKBpodcast, or leave a comment on our quick anonymous survey here: https://pckb.org/feedback Email us at: primarycarepodcasts@gmail.com ___ This podcast has been made with the support of GP Excellence and Greater Manchester Integrated Care Board. Given that it is recorded with Greater Manchester clinicians, the information discussed may not be applicable elsewhere and it is important to consult local guidelines before making any treatment decisions.  The information presented is the personal opinion of the healthcare professional interviewed and might not be representative to all clinicians. It is based on their interpretation of current best practice and guidelines when the episode was recorded. Guidelines can change; To the best of our knowledge the information in this episode is up to date as of it's release but it is the listeners responsibility to review the information and make sure it is still up to date when they listen. Dr Lisa Adams, Dr Sara MacDermott and their interviewees are not liable for any advice, investigations, course of treatment, diagnosis or any other information, services or products listeners might pursue as a result of listening to this podcast - it is the clinicians responsibility to appraise the information given and review local and national guidelines before making treatment decisions. Reliance on information provided in this podcast is solely at the listeners risk. The podcast is designed to be used by trained healthcare professionals for education only. We do not recommend these for patients or the general public and they are not to be used as a method of diagnosis, opinion, treatment or medical advice for the general public. Do not delay seeking medical advice based on the information contained in this podcast. If you have questions regarding your health or feel you may have a medical condition then promptly seek the opinion of a trained healthcare professional.