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The Progress Educational Trust podcast

  • Welfare of the Fertility Patient: Spotting Signs and Treatment after Trauma

    25 MAR 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses how best to understand and address welfare issues in the context of fertility treatment. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Professor Abha Maheshwari (Lead Clinician at Fertility Scotland) ⚫ Ruth Phillips (Fertility Counsellor at the Edinburgh Fertility Centre) ⚫ Dr Susheel Vani (Lead Clinician at the Glasgow Royal Infirmary) ⚫ Nicole McKeith (Fertility Nurse and Nurse Sedationist at Ninewells Hospital) PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 29m 42s
  • IVF Add-Ons: How Should We Score the HFEA's New Ratings System?

    26 FEB 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses recent changes to the way the UK's fertility regulator – the Human Fertilisation and Embryology Authority (HFEA) – assesses and explains https://www.hfea.gov.uk/treatments/treatment-add-ons/. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Dr Tim Child (Chair of the HFEA's Scientific and Clinical Advances Advisory Committee) ⚫ Professor Joyce Harper (Professor of Reproductive Science at University College London) ⚫ Dr Ippokratis Sarris (Director of King's Fertility) ⚫ Tracey Sainsbury (Fertility Counsellor) ⚫ Dr Tasha Alden (patient and researcher) Add-ons are optional treatments, technologies or procedures offered alongside IVF – often at considerable expense to patients – which may not be supported by reliable evidence. The HFEA regulates all UK fertility clinics, including those that offer add-ons, but tends to regulate the add-ons themselves only indirectly. This is because the HFEA's https://www.legislation.gov.uk/ukpga/1990/37/contents concern what can be done to or with gametes or embryos outside the human body, and many add-ons fall outside this scope. The HFEA's other main role in relation to add-ons is providing information for patients and the wider public, explaining what particular add-ons entail and whether there is evidence to support their use. In 2019, the HFEA https://www.hfea.gov.uk/about-us/news-and-press-releases/2019/fertility-regulator-calls-for-clinics-to-be-more-open-about-treatment-add-ons/ a 'traffic light' ratings system, placing add-ons in one of three categories depending on the quality of evidence. In recent months, the HFEA has https://www.hfea.gov.uk/about-us/news-and-press-releases/2023/uk-fertility-regulator-launches-improved-ratings-for-fertility-treatment-add-ons/ its ratings system, replacing its three previous categories for add-ons with https://www.hfea.gov.uk/treatments/treatment-add-ons/#what-do-the-ratings-mean. These new categories involve criteria including the quality of evidence, the impact on treatment outcome, and concerns about safety. Anyone who thinks the regulator's list of add-ons is incomplete can https://portal.hfea.gov.uk/knowledge-base/other-guidance/apply-to-propose-a-treatment-for-inclusion-in-the-hfea-s-traffic-light-rated-list-of-add-ons/. PET is grateful to the British Fertility Society for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 35m 1s
  • Fertility Treatment for Single People: Who Should Pay?

    25 JAN 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses whether – and in what circumstances – single people should be able to access publicly funded fertility treatment. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Dr Sarah Martins da Silva (Clinical Lead for Fertility Services at NHS Tayside) ⚫ Dr Alan Brown (Senior Lecturer in Private Law at the University of Glasgow) ⚫ Dr Catherine Jones (Lecturer at King's College London) ⚫ Professor Guido Pennings (Director, Bioethics Institute Ghent) PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 12m 35s
  • Innovation from the Pandemic: From Video Appointments to Electronic Consent

    30 OCT 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses technologies and approaches that helped fertility patients and practitioners during the COVID-19 pandemic, and that are still proving useful now. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Dr Ashleigh Holt-Kentwell (Clinical Research Fellow at Aberdeen Fertility Centre) ⚫ Ciara Heatherwick (Specialist Nurse at Glasgow Royal Infirmary) ⚫ Lesley Benzie (Fertility Counsellor at Glasgow Royal Infirmary) ⚫ Alison Elliot (Fertility Counsellor at Glasgow Royal Infirmary) ⚫ George Hughes (Lead Clinical Embryologist at Ninewells Hospital's Assisted Conception Unit) ⚫ Dave Wales (Quality Manager at the Edinburgh Fertility Centre) Fertility treatment was – like many other areas of healthcare – drastically disrupted by the COVID-19 pandemic, causing difficulties for patients and professionals alike. However, the pandemic also prompted creative solutions and novel approaches, some of which are still proving useful now. In this discussion, a cross-section of fertility professionals – a Clinical Research Fellow, a Specialist Nurse, two Fertility Counsellors, a Clinical Embryologist and a Quality Manager – discuss what has been learned from the pandemic, and the scope for further innovation. PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 30m 18s
  • Opening the Register: How to Handle Disclosure of Gamete Donor Information

    9 OCT 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses an imminent change that will have consequences for people involved in – and affected by – donor conception. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Rachel Cutting (Director of Compliance and Information at the Human Fertilisation and Embryology Authority) ⚫ Laura Bridgens (donor-conceived person, and Director of Donor Conceived UK) ⚫ Rebekah Dundas (mother of three donor-conceived children) ⚫ Nina Barnsley (Director of the Donor Conception Network) In October 2023, some people who were conceived from donor gametes in the UK – where the relevant sperm or eggs were donated after the https://www.legislation.gov.uk/uksi/2004/1511/contents/made came into force – will reach the age of 18. From this point forward, a growing number of donor-conceived people will be officially entitled to https://www.hfea.gov.uk/donation/donor-conceived-people-and-their-parents/finding-out-about-your-donor-and-genetic-siblings/ – the Human Fertilisation and Embryology Authority (HFEA) – for their donor's full name, date of birth, and last known address. The HFEA has https://www.hfea.gov.uk/about-us/news-and-press-releases/2023-news-and-press-releases/fresh-plea-from-uk-fertility-regulator-as-monumental-changes-to-donor-anonymity-law-finally-come-to-fruition/ to raise awareness of the changing situation, and to encourage relevant donors to ensure that they are contactable. This entails the donor providing up-to-date contact details to the clinic where they donated 18 or more years ago (if that clinic still exists), and/or providing these details to the HFEA. In this discussion a donor-conceived person, a parent of donor-conceived children, and representatives of the HFEA and the Donor Conception Network discuss practical, personal and ethical aspects of disclosing donor information. PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 34m 7s
  • Small Change: Is It Time to Reconsider Compensation for Gamete Donors?

    2 OCT 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses levels of compensation for donors of sperm or eggs. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Nayla Tohme (Patient Engagement Officer at the London Egg Bank) ⚫ Hayley King (donor-conceived person, also herself a mother of twins conceived with donor sperm) ⚫ Saghar Kasiri (Director of European Operations at Cryos International) ⚫ Dr Ben Hurlbut (Associate Professor of Bioscience Ethics at Arizona State University) What levels of compensation – financial or otherwise – should be standard, and permissible, for gamete donors? The UK's fertility regulator, the Human Fertilisation and Embryology Authority (HFEA), last addressed this question in 2011. Following a public consultation, the HFEA decided that donors could receive fixed sums of money (this had not been permitted previously), with a maximum of £35 per clinic visit for sperm donors and a maximum of £750 per cycle of donation for egg donors. The HFEA arrived at these figures after reviewing policies in 15 other European countries, taking particular inspiration from Danish policy (for sperm donor compensation) and Spanish policy (for egg donor compensation). The maximum payments set in 2011 remain in place in the https://portal.hfea.gov.uk/media/it1n3vpo/2022-07-01-code-of-practice-2021.pdf of the HFEA's Code of Practice (CoP). The CoP also permits https://www.hfea.gov.uk/donation/donors/egg-sharing/ and sperm sharing arrangements, stating that clinics 'may offer benefits in kind, in the form of reduced-price or free licensed services (for example, fertility treatment or storage) or quicker access to those services, in return for providing eggs or sperm for the treatment of others'. 12 years on, should compensation for gamete donors be reconsidered, to take account of inflation and the cost-of-living crisis? Importantly, those who donate gametes in the UK are only officially permitted to receive 'compensation' for their donation, as distinct from 'payment'. This distinction was originally a requirement of the https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex:32004L0023 of 2004, which stipulates that 'member states shall endeavour to ensure voluntary and unpaid donations of tissues and cells' and that 'donors may receive compensation, which is strictly limited to making good the expenses and inconveniences related to the donation'. Now that the UK has left the European Union, it might be asked whether the UK is still bound by this particular requirement – and if it is, whether it should be. PET is grateful to the Association of Reproductive and Clinical Scientists and the British Fertility Society for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 32m 40s
  • The Women's Health Strategy

    28 JUL 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses the progress that the UK Government has made to date with its Women's Health Strategy for England. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Professor Geeta Nargund (Co-Founder and Medical Adviser at Ginsburg Women's Health Board) ⚫ Nickie Aiken (Member of Parliament for the Cities of London and Westminster) ⚫ Isaac Barnswell (Research and Policy Officer at Stonewall) ⚫ Laura-Rose Thorogood (Founder of LGBT Mummies) ⚫ Dr Raj Mathur (Lead for Reproductive Medicine at St Mary's Hospital) In July 2022, the UK Government published the first ever https://www.gov.uk/government/publications/womens-health-strategy-for-england. The section of the Strategy that deals with fertility and pregnancy includes Government commitments to: ⚫ 'Work with NHS England to review and address the current geographical variation in access to NHS-funded fertility services across England to ensure all NHS fertility services are commissioned in a clinically justifiable way.' ⚫ 'Explore mechanisms to publish data nationally on provision and availability of IVF' and 'improve information provision regarding fertility over the next two years'. ⚫ 'Remove non-clinical access criteria to fertility treatment, such as one partner having a child from a previous relationship, to create more equality in access to fertility services.' ⚫ Ensure that when it comes to same-sex couples, 'there is no requirement for self-funding and the NHS treatment pathway for female same-sex couples will start with six cycles of artificial insemination, prior to accessing IVF services if necessary'. The Government Minister responsible for the Women's Health Strategy, Maria Caulfield, https://hansard.parliament.uk/commons/2023-01-24/debates/1282DF98-F596-4EE2-BD69-F694378D6700/Women%E2%80%99SHealthStrategyForEngland#contribution-62C072A2-021B-42E1-B4D1-A406D76CE523 in January 2023 that the Government's 'eight priorities for this year' in relation to the Strategy include 'improving and standardising access to in vitro fertilisation for same-sex couples around the country'. In July 2023, the same Minister https://questions-statements.parliament.uk/written-questions/detail/2023-06-26/191157/, saying: 'We will improve access to IVF by removing the additional financial burden on female same-sex couples accessing treatment. We will be working with NHS England to assess fertility provision across ICBs, with a view to removing non-clinical access criteria. We will also work with stakeholders to improve information provision on fertility and fertility treatments, including on the NHS website, and introduce greater transparency of the local provision of IVF.' This discussion asks what progress has been made with the Strategy, and what can be done to ensure that the Government honours its commitments. PET is grateful to the British Fertility Society and Merck for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 37m 33s
  • Counselling and Assisted Reproduction: When, Why and by Whom Should It Be Offered?

    26 JUN 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses different types of counselling that are sought, offered, recommended or required in relation to fertility treatment, gamete donation, and assisted conception more broadly. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Alison McTavish (Member of the Human Fertilisation and Embryology Authority) ⚫ Angela Park (Fertility Counsellor at Aberdeen Fertility Centre) ⚫ Lee Noquet (Egg Donor Coordinator at the Edinburgh Fertility Centre) ⚫ Professor Jacky Boivin (Professor of Health Psychology at Cardiff University) Different types of counselling may be sought, offered, recommended or required in relation to assisted conception. The language around such counselling can sometimes be confusing, leading to mismatched expectations of what counselling entails and who is best placed to deliver or facilitate it. Of particular importance are distinctions between: ⚫ Information counselling – This involves the provision of medical information. Under UK regulation, such counselling must be provided in order for a fertility patient's consent to be valid. This sort of counselling would usually be provided by a member of the medical team. ⚫ Therapeutic counselling – This involves helping a person deal with (current, future or potential) challenges, decisions, difficulties, distress or emotions. Under UK regulation, such counselling is not required in order for consent to be valid (indeed, it is an important principle that such counselling is voluntary). The content and outcome of such counselling is usually confidential. ⚫ Implications counselling – This involves the provision or clarification of information about the implications of treatment or donation, and also involves exploring these implications. This has fallen into a grey area. Who is qualified to deliver such counselling? Is such counselling necessary, in order for consent to be valid? Does it, or can it, include a therapeutic element? PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 36m 50s
  • NHS Fertility Treatment: Wouldn't It Be NICE to Have a Workable Guideline?

    19 JUN 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses proposed changes to the law governing fertility treatment and embryo research. The discussion is chaired by Dr Helen O'Neill, with contributions from: ⚫ Professor Dame Clare Gerada (President of the Royal College of General Practitioners) ⚫ Steve McCabe MP (Member of Parliament for Birmingham Selly Oak) ⚫ Penny Mitchell (Director for Population Health Commissioning at NHS North Central London's Integrated Care Board) ⚫ Professor Melanie Davies (Professor of Reproductive Medicine at University College London) ⚫ Dr Chris Skedgel (Director of the Office of Health Economics) ⚫ Dr Catherine Hill (Interim Chief Executive of Fertility Network UK) ⚫ Sarah Norcross (Director of PET) For 20 years, the UK's National Institute for Health and Care Excellence (NICE) has recommended that the NHS should provide up to three full cycles of IVF to a woman (under 40 years of age) undergoing fertility treatment. This recommendation has never been met consistently by NHS commissioning bodies in England. Consequently, fertility patients in England have spent the past two decades at the mercy of a 'postcode lottery'. This situation did not improve when the NICE Fertility Guideline received its https://www.nice.org.uk/guidance/cg156 in 2013. It remains to be seen whether the situation will change when a newly updated Guideline, currently https://www.nice.org.uk/guidance/gid-ng10263/documents/final-scope, is published by NICE in 2024. Meanwhile, in July 2022 the UK Government made a commitment – in its https://www.gov.uk/government/publications/womens-health-strategy-for-england – 'to greater transparency of the provision of IVF services across the country', and 'to publish data nationally on provision and availability of IVF'. As yet, these things have not happened. Then in May 2023, PET published its report https://www.progress.org.uk/engagement/resource/the-power-of-three-ivf-cycles/, which distils interviews with 194 GPs and six NHS Commissioners across 40 out of 42 English commissioning areas. This research shows that GPs have a poor understanding of the NICE Fertility Guideline, with only half of GPs able to identify the recommendation (now 20 years old) that https://www.progress.org.uk/wp-content/uploads/2023/05/pet_ivfpower3-1.pdf should be provided. Furthermore, around half of GPs believe that their area meets or exceeds the NICE Guideline (even though it https://fertilitynetworkuk.org/a-complete-postcode-lottery/ that only around one-tenth of areas in England meet this standard), and https://www.theguardian.com/society/2023/may/19/nhs-male-gps-in-england-gatekeeping-ivf-treatment-report-finds to refer eligible patients for IVF. The PET research also found widespread confusion, among GPs, about the definition of a single 'full' IVF cycle. https://www.nice.org.uk/Guidance/CG156/IFP/chapter/in-vitro-fertilisation#what-is-a-full-cycle-of-ivf, a full cycle incorporates all transfers to the patient's womb of viable embryos that have been created earlier in that cycle. PET is grateful to Ferring Pharmaceuticals for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 36m 42s
  • Surrogacy Law: What Is Intended... For Parents? For Surrogates? For Children?

    25 APR 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses proposed changes to the law governing fertility treatment and embryo research. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Professor Gillian Black (Law Commissioner responsible for Surrogacy at the Scottish Law Commission) ⚫ Beverley Addison (Senior Solicitor at BTO Family Law) ⚫ Dr Alan Brown (Senior Lecturer in Private Law at the University of Glasgow) ⚫ Alan Inglis (Barrister and Advocate at Arnot Manderson Advocates) Since 2017, the Scottish Law Commission and the Law Commission of England and Wales have been reviewing UK surrogacy law, developing proposals for reform and holding a public consultation on how the law might be changed. Now, the Law Commissions have drafted a new https://s3-eu-west-2.amazonaws.com/lawcom-prod-storage-11jsxou24uy7q/uploads/2023/03/3.-Surrogacy-draft-bill.pdf and presented it to Government, together with the wide-ranging report https://www.lawcom.gov.uk/project/surrogacy/. The proposals from the Law Commissions include: ⚫ A new pathway to parenthood which, if followed, would enable the intended parents of a child via surrogacy to acquire legal parenthood upon birth of the child (rather than having to wait for months to obtain a parental order). ⚫ Maintaining the current requirement that at least one of the intended parents must have a genetic link to the prospective child (this would preclude so-called 'double donation'). ⚫ Enabling a court to make a parental order where the surrogate withdraws her consent. ⚫ Establishing a system whereby surrogacy agreements are overseen and supported by nonprofit organisations, which would themselves be regulated by the UK's Human Fertilisation and Embryology Authority (HFEA). ⚫ Establishing a new Surrogacy Register, to enable surrogate-born people to access information about their origins. ⚫ Continuing the current prohibition on commercial surrogacy, while clarifying rules on payments that intended parents are – and are not – permitted to make to surrogates. ⚫ Discouraging international surrogacy arrangements in favour of domestic arrangements, while seeking to add safeguards if international arrangements are made. This discussion begins with an overview of the Law Commissions' work, presented by the Scottish Law Commissioner responsible for surrogacy. Other legal experts then offer their perspectives on the Law Commissions' proposals. PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.
    1h 35m 22s

PET (the Progress Educational Trust) is an independent charity that improves choices for people affected by infertility and genetic conditions. On this podcast, you can hear the latest PET discussions...

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PET (the Progress Educational Trust) is an independent charity that improves choices for people affected by infertility and genetic conditions.

On this podcast, you can hear the latest PET discussions of scientific, ethical, legal and policy issues in fertility, genetics, genomics and embryo/stem cell research.

These discussions feature experts and advocates from around the world, as well as contributions from patients and the broader public.
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