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The Impact of Withdrawing Funding for Ivf

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The Impact of Withdrawing Funding for Ivf THE IMPACT OF WITHDRAWING FUNDING FOR IVF Feedback to the Cambridgeshire and Peterborough CCG regarding the impact of withdrawing NHS funding for IVF and a proposal from Bourn Hall to improve fertility service provision in the region. APRIL 2019 CONTENTS Executive summary ............................................................................................ 2 Results of the survey .......................................................................................... 3 FOI data/Bourn Hall data ................................................................................... 5 Recommendations ............................................................................................. 7 Appendix A: The Bourn Hall integrated fertility pathway ................................... 8 Appendix B: Survey results analysis .................................................................... 9 Appendix C: Impact of infertility on mental health ........................................... 11 Appendix D: Survey participants’ detailed feedback How has infertility affected you, your relationships and your health (or those of someone you care about)?............................................... 13 Appendix E: Survey participants’ advice What advice would you give your younger self regarding fertility treatment? .................. 26 1 EXECUTIVE SUMMARY Background In August 2017 Cambridgeshire and Peterborough Clinical Commissioning Group (C&PCCG) made the decision to remove funding for its Specialist Fertility Services, which includes IVF, Intra Uterine Insemination (IUI) and donor insemination. It agreed to review the decision in April 2019 and to consider feedback on the impact this decision has made. This document uses data from a recent survey about the impact of the removal of NHS funding for IVF, Freedom of Information requests (FOIs) to C&PCCG and Cambridge University Hospital Trust (CUH) and from Bourn Hall’s experience based on four years of delivering integrated NHS fertility provision in Norfolk. Key findings Survey The survey shows that the biggest impacts of withdrawing funding were: . Severe impact on mental health and/or that of partner – resulting in medication, depression, hospital admissions, lost days of work . Stress on relationships – isolating, withdrawal from friends and family, destroyed marriages . Strong sense of unfairness . Devastating impact on lives – loss of meaning, dominated their lives, financial worries We have also been able to analyse the outcomes for the C&PCCG patients who completed the survey. A summary of the survey results is shown in Appendices B and C, and detailed comments made by participants (including impact on mental health) are listed in appendices D and E. FOIs (C&PCCG and CUH) We have been able to clarify numbers of patient referrals and waiting times and use this to predict future demand for fertility treatments (including IVF) – see page 5. Bourn Hall Data We report on the IVF success rates based on the significant amounts of data we have from providing NHS funded IVF from 2009 to date. We demonstrate the effectiveness of the model currently used in Norfolk which integrates secondary and tertiary fertility services and the outcomes of this on pages 5 and 6. Recommendation We strongly support the reinstatement of NHS funding for IVF in the C&PCCG region and have shown in the section FOI data/Bourn Hall data how the costs of this can be mitigated by integrating an efficient and effective infertility pathway from GP referral to resolution. 2 RESULTS OF THE SURVEY Bourn Hall conducted a survey during February and March 2019 to assess the impact of withdrawal of funding for Specialist Fertility Services. The survey was promoted through the media, social media and sent to the 4,000 people that had responded to the petition organised during the consultation process which resulted in the withdrawal of funding. Of the 300 responses approximately one third had some type of fertility treatment, one third needed treatment and the remaining third did not require treatment themselves but had seen the impact on a close friend or relative. Without the option of a referral for NHS funded treatment the entire fertility journey has suffered. Time to referral, waiting times and number of appointments . 15% of patients are still waiting for their first NHS appointment or have self-funded testing to speed up referral . 25% waited 18 weeks or more between referral and their first appointment . 43% had four or more appointments for testing and diagnosis; 20% had nine or more This is supported by CUH data from the FOI which shows that over half the people on its current waiting list have been waiting for more than 3 months (91 days) from GP referral to their first assessment. Impact of withdrawal of funding In June 2016 the CCG reduced the entitlement to one cycle of treatment. This entitlement was then removed completely in August 2017. The Survey revealed that two thirds of the respondents referred to Level 2 after June 2016 received no treatment for their infertility. Patient experience of the fertility pathway A number of participants reported that the fertility service felt disjointed, with tests performed sequentially by different departments with delays between each. Frustration with the lack of information and time delay is illustrated by this response to the question “What advice would you give to your younger self?” “Ask more questions. Specifically: ask about the whole process of referral and your options at each stage. We were living from appointment to appointment and not understanding what the outcomes of each test would mean and what our options were at each stage. “Insist on having a named contact at each place you're dealing with, with a direct dial phone number - we were passed from pillar to post all the time, I spent far too long phoning down a list of numbers trying to find the right person to speak to get questions answered or to chase up appointments that we were waiting for.” 3 Cambridgeshire patients The strong feelings from all participants are included in the appendices. Deeper analysis has been made of responses from patients living within the C&PCCG area that sought help for infertility from 2015 – 2019. Over half of those that responded to the survey need IVF, but 70% of those that need IVF say they are unable to afford it . Some patients who are not able to afford IVF in the UK are considering going abroad for treatment The survey of Cambridgeshire patients investigated the patient outcomes and reveals that over 50% of patients diagnosed with some form of infertility at Level 2 between 2015 and 2019 were left without resolution. Impact on health and wellbeing The survey gives a snapshot of the impact that cutting IVF funding has had on the lives of people living in the Cambridgeshire and Peterborough CCG area. The most often cited impact is on mental health and wellbeing, loss of self-esteem and negative impact on relationships with partners, friends and family. The emotional and financial stress feeds into feelings of isolation, worthlessness and serious mental health issues. Patients that require IVF treatment and are unable to afford it describe infertility as having a “devastating” impact on their lives. 4 FOI DATA/BOURN HALL DATA Referrals from GP to hospital for fertility testing and treatment (Level 2) (CUH data) From April 2017 – March 2018 471 patients were referred by their GP to Level 2. Waiting times (CUH data) 72 patients are currently waiting for infertility investigation. Over half have been waiting for more than 13 weeks and six have been waiting for more than four months. It was unknown how many patients have their fertility issues resolved at Level 2, how many appointments these patients have had or how long they remain at Level 2 before discharge. Therefore it is unknown how many of these patients would have been eligible for NHS funded treatment. Live Birth Rates (Bourn Hall Data) C&PCCG is a member of the East of England Fertility Services Consortium, which is responsible for the commissioning of fertility services. In 2009 the Consortium agreed its policy: that couples meeting the stringent eligibility criteria would be entitled to up to three fresh cycles of IVF and up to three frozen embryo transfers. This policy continued until 2016. This treatment is considered best practice by NICE (The National Institute for Health and Care Excellence). 90% of NHS Cambridgeshire and Peterborough patients treated at Bourn Hall Clinic had a baby when the NICE protocol was applied. For thousands of NHS funded IVF patients treated by Bourn Hall it has consistently achieved over 40% live birth rate per cycle of treatment, which exceeds national average figures by a significant margin. The Bourn Hall integrated fertility pathway in Norfolk (Bourn Hall Data) In 2014 Bourn Hall was subcontracted by the Queen Elizabeth Hospital at Kings Lynn to provide Level 2 fertility treatment to patients in Norfolk. Bourn Hall implemented an integrated Level 2 and Level 3 pathway, while maintaining patient choice of providers, that has improved patient outcomes and created cost savings for the CCG. This service has been so well received that the Norfolk CCG consortium is considering direct commissioning with Bourn Hall which is likely to enable further savings. The service is delivered by a team of dedicated and experienced clinicians, fertility nurses and administrative staff at two clinics in the region – see flow diagram of the Bourn Hall integrated pathway in Appendix
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