Results of the Consultation on IVF Funding

Transcription

1 JOINT MEETING OF NHS MANSFIELD AND ASHFIELD CCG AND NHS NEWARK AND SHERWOOD CCG GOVERNING BODIES TITLE: Results of the Consultation on IVF Funding DATE OF MEETING: PAPER REF: JGB/17/31 AUTHOR: Sally Dore PRESENTER: Dr Amanda Sullivan PURPOSE OF REPORT: This report sets out details of the recent IVF consultation. It describes the approach to consultation that was undertaken and the responses that were received. The Governing Bodies are now asked to consider the findings of the consultation and to determine the optimal approach to funding eligibility, having due regard for the opinions of those who responded to the consultation. The Governing Bodies are also asked to consider how potential revisions to the current funding policy could be applied, taking into account principles of equity and clinical and cost effectiveness. EXECUTIVE SUMMARY: During September 2016 the CCGs asked the public to help prioritise services for funding. IVF was one of the services that had received a low priority rating from the public. The CCGs have asked the people of Mansfield, Ashfield, Newark and Sherwood to consider the proposals about eligibility for IVF on the NHS. The consultation ran for eight weeks from the 14 November 2016 to the 13 January Number of questionnaires returned was 424 Number of paper consultation questionnaires completed was 167 Number of online questionnaires completed was 216 Number of paper void returns was 4 Number of incomplete online returns was 37 Average age of respondents was yrs. old Gender of respondents was 75% female RESULTS Reduce the female age from 42 to 40 years old. 47% agree 53% disagree Develop an age limit for men. 56% agree 44% disagree Stop offering IVF on the NHS. 25% agree 74% disagree Continue to fund 1 cycle of IVF for a very limited number of exceptional situations 43% agree 56% disagree RECOMMENDATION: The Governing Bodies are asked to: CONSIDER the consultation responses DISCUSS the relative advantages / disadvantages of different options and potential approaches DETERMINE future eligibility for NHS IVF funding, based on the consultation issues raised and application of any proposed policy changes

2 REPORT: Option Results Top comments (mentioned 10 times or more) Reduce the female age from 42 to 40 years old. Develop an age limit for men Stop offering IVF on the NHS Continue to fund 1 cycle of IVF for a very limited number of exceptional situations 47% (181) agree 53% (202) disagree Percentage difference 6% 56% (213) agree 44%(168) disagree Percentage difference 12% 25% (97) agree 74% (285) disagree Percentage difference 49% 43% (166) agree 56% (215) disagree Percentage difference 13% Do not restrict give to a healthy aged or younger People may not know they need treatment until they are older less likely to work if older/risk of complications Same as Women Age 50 No Limit Age 40 Do not stop IVF Peoples last hope/chance Stop funding and use money for health care People can t afford to pay Give at least 1 cycle Stopping IVF may lead to more costs for mental health issues Continue to fund for everyone Everyone is exceptional Fund for medical problems/disease/genetic condition Financial consideratio n This would save an average of 15,000 a year Unable to calculate as we do not currently have an age limit or collect men s ages This would save an average of 300,000 per year This would save an average of 240,000 per year KEY IMPLICATIONS: FINANCIAL VALUE FOR MONEY RISK LEGAL WORKFORCE PATIENT AND PUBLIC INVOLVEMENT CLINICAL ENGAGEMENT COMMITTEES CONSULTED PRIOR TO GOVERNING BODY See table above Potential for negative reputational damage depending on decision Full public consultation Yes throughout Clinical Cost Effectiveness Committee HOW DOES THIS CONTRIBUTE TO THE OUTCOMES AND OBJECTIVES OF THE CCG: Quality Health Financial Clinical Performance (tick as appropriate)

3 CONFLICTS OF INTEREST: This is a recommended action to be agreed by the Chair at the beginning of the item. No conflict identified Conflict noted, conflicted party can participate in discussion but not decision (see below) Conflict noted, conflicted party can remain but not participate (see below) Conflicted party is excluded from discussion (see below) Parties may be conflicted if they have utilised or are utilising IVF services. CONFIDENTIALITY: Is the information in this paper confidential? No Yes ANNEXES: IVF Consultation Results

4 IVF (In-vitro fertilisation) Fertility Treatment CONSULTATION RESULTS February 2017

5 Contents Introduction 4 Purpose 4 Background 4 Consultation process 5 Scope of the consultation 5 People consulted 6 Forms of communication 7 Key findings 8 Question 1 Reduce the female age from 42 to 40 years old 11 Question 2 Develop an age limit for men 12 Question 3 Stop offering IVF on the NHS 14 Question 4 Continue to fund 1 cycle of IVF for a very limited number of exceptional situations 15 Question 5 How satisfied are you with the way the consultation has been run? 17 Options as described in the consultation and results 21 Appendix 1 23 Letter from Overview and Scrutiny Committee 23 Appendix 2 24 Questions for consideration 24 Appendix 3 28 All comments received 28 2

6 EXECUTIVE SUMMARY The local NHS has been very successful in treating more conditions and in helping people to live longer. Additional funding has been made available to the NHS, but new treatments, growing levels of long-term conditions and increasing expectations mean that we now have to re-prioritise how our precious NHS resources are deployed. As the health needs of our population change, we need to review how best to allocate the considerable resources available to us, so that maximum health benefits can be achieved overall. As commissioners, NHS Mansfield and Ashfield Clinical Commissioning Group (CCG) and Newark and Sherwood CCG, we plan and buy health care services for our local population. We have a legal duty to live within our means and we need to save around 38 million this year in order to be able to meet increased population requirements for health care as people live longer with more illnesses and new treatments come on line. This is likely to increase over the next few years. We need to ensure that there is enough money to maintain high quality and safe services. The overall annual budget for the CCGs is 470m. During September 2016 we asked the public to help us prioritise services for funding. IVF was one of the services that had a low priority from the public. We have asked the people of Mansfield, Ashfield, Newark and Sherwood (known as mid Nottinghamshire) to consider our proposals about eligibility for IVF on the NHS. The consultation ran for eight weeks from 14th November 2016 to 13th January The population of mid Nottinghamshire is approximately 320,000 people. 204 NHS funded IVF procedures were carried out in the last two years at an average cost of 600,000 over the two year period. The response rate to the consultation is equivalent to 0.1% of a population of 320,000 people Number of questionnaires returned was 424 Number of paper consultation questionnaires completed was 167 Number of online questionnaires completed was 216 Number of paper void returns was 4 Number of incomplete online returns was 37 Average age of respondents was yrs. old Gender of respondents was 75% female RESULTS Reduce the female age from 42 to 40 years old. 47% agree 53% disagree Develop an age limit for men. 56% agree 44% disagree Stop offering IVF on the NHS. 25% agree 74% disagree Continue to fund 1 cycle of IVF for a very limited number of exceptional situations 43% agree 56% disagree We would like to thank the public for their participation in this consultation. Dr Amanda Sullivan Dr Gavin Lunn Dr Thilan Bartholomuez Chief Officer Clinical Chair Clinical Chair Mansfield and Ashfield CCG Mansfield and Ashfield CCG Newark and Sherwood CCG Newark and Sherwood CCG 3

7 Introduction The local NHS has been very successful in treating more conditions and in helping people to live longer. Additional funding has been made available to the NHS, but new treatments, growing levels of long-term conditions and increasing expectations mean that we now have to re-prioritise how our precious NHS resources are deployed. As the health needs of our population change, we need to review how best to allocate the considerable resources available to us, so that maximum health benefits can be achieved overall. As commissioners, Clinical Commissioning Groups (CCGs) NHS Mansfield and Ashfield CCG and Newark and Sherwood CCG, we plan and buy health care services for our local population. We have a legal duty to live within our means and we need to save around 38 million this year in order to be able to meet increased population requirements for health care as people live longer with more illnesses and new treatments come on line. This is likely to increase over the next few years. We need to ensure that there is enough money to maintain high quality and safe services. The overall combined annual budget for the CCGs is 470m. We have recently consulted on IVF services. The consultation ran for eight weeks between 14 November 2016 and 13 January The service under review is across Mansfield, Ashfield, Newark and Sherwood (known as mid Nottinghamshire) therefore we have asked people from these areas to consider our proposals about eligibility for IVF on the NHS (orange section below). Purpose This report contains information about the formal public consultation, the communications and engagement activity used to facilitate dialogue with the public and stakeholders, analysis of the feedback and final consultation results. The purpose of this document is to share the consultation questions and results as well as the consultation process. Background The overall combined annual budget for the CCGs is 470m. Below is a breakdown of how this money is allocated. 4

8 The CCGs have been part of an East Midlands wide IVF policy for years and since April 2014 have only funded one cycle of IVF in line with this policy. Consultation process The consultation process has been conducted in line with (NHS England s guidance for commissioners on involving the public in commissioning in line with the legal duty under section 13Q of the NHS act 2016, as amended) The consultation has included all mid-nottinghamshire GP practices and Patient Participation Groups (PPGs). We have also communicated directly with the public, health forums, HealthWatch, maternity services, parent / carer forums, voluntary sector partners, fertility service providers, the media, councils and lay members of the CCGs. A full list can be found further in the report. The consultation options were designed in conjunction with clinical staff and patient representatives. The decision to consult followed a clear governance structure. Nottinghamshire Overview and Scrutiny Committee received a presentation at the start and end of the consultation period. Their comments are; Dear Dr Sullivan RE IN-VITRO FERTILISATION-CHANGES TO SERVICES Further to your attendance at Nottinghamshire s Health Scrutiny Committee on 28 November 2016 and 23 January 2017, I would like to thank the better Together Engagement Lead, Sally Dore, and yourself for describing how potential changes for eligibility for IVF treatment would be consulted on. As you are aware, the Health Scrutiny Committee has determined that it is content with the arrangements for the consultation that you have set out. (Full letter in appendix) Scope of the consultation The consultation ran for 8 weeks from 14 November 2016 to 13 January It was open to all people to complete with a focus on residents of Mansfield, Ashfield, Newark and Sherwood. People were able to attend public sessions, complete the survey via a paper 5

9 document or complete the survey online. An easy read version was available. There were well established groups that were visited and encouraged to complete the survey. There were also opportunities for the general public to drop in at road shows. none of the surveys were received after the closing date of 13 January People consulted There were numerous stakeholders who were invited to complete the consultation questionnaire and to share the document with any of their own networks. The list of people consulted with is below; Stakeholder General public through media including print, TV, radio, road shows, Facebook,Twitter and CCG website Patient through fertility providers/ campaign group/ maternity provider Parent and toddler groups Surrounding Clinical Commissioning Groups, STP (Sustainable Transformation Plan), NHS England, Alliance communication leads and social care. Councillors, parish council, local MP s and representatives Method of advertising consultation Press release sent to all local print media, three live radio interviews, live TV appearance, recorded TV coverage, road shows in shopping centres, GP surgeries, markets and hospitals. Regular releases on social media to both IVF private providers and local NHS hospital to groups and face to face visits and some attendance at consultation events and presentations to all districts year olds Mother and toddler groups, health and care students at a local college and 6 th forms in schools NHS organisations including GP surgeries, Posters sent to every premise Pharmacies, opticians, dentists and hospitals Better Together Champions (700). Acute Hospital members (5,000) and Academic Health Science Network group (800) 3 main voluntary sector organisations for onward circulation Clinical commissioning Group staff and committees Libraries, churches, parish councils Newark factory (80% polish workers) Lesbian, Gay, Bisexual, transgender group Community groups including disability, dementia, seldom heard, slimming groups, carers via the voluntary sector Learning disabilities group (Nottinghamshire) 6 Either ed or posted information sent ed and hard copies of invitation and consultation document sent Internal s and attendance at meetings Hard copies posted to each organisation sent to human resource department sent to main group in Nottinghamshire Variety of groups visited for 1-1 conversations. Main disability group attended with easy read copies

10 Shops/ cafes/takeaways/local business meeting 2020 group Gypsy travellers Healthwatch Public events Patient Participation Groups CCG reference groups Posters delivered to local businesses Visited for 1-1 conversation Information ed and HealthWatch attended most consultation sessions Four main public events held one in each district Shared with these through the GP surgeries and CVS Shared via Forms of communication The aims and objectives of the consultation were to; ensure there is strong public and patient engagement ensure there is consistency in message provide clear explanations and a variety of communication methods maintain the reputation of Newark and Sherwood CCG and Mansfield and Ashfield CCG as a high quality commissioner of health services for the population explain to the public that the options are in a formative stage and ensure their opinions are sought gain the confidence and support of opinion formers and stakeholders Different forms of communication were used including , face to face, one to one, group talks, print and distribution of consultation documents. No individual or group requested information in a different language. An easy read version was produced and one deaf lady attended an event who found it useful. People were invited to 4 public consultation events and 5,000 posters were ordered and distributed amongst the stakeholders. 7

11 A 12 page consultation document was produced and 2,000 copies ordered. These were distributed to all the stakeholders and some held in reserve to share with people at road shows and public events. An online survey was developed and shared via the CCG website s Key findings 424 responses were received in total. 383 have been analysed as 4 were void and 37 were incomplete. 216 completed online responses received 167 completed postal responses received 4 void responses 37 incomplete online responses Demographics of all respondents The information below is based on the responses where the data was completed by the respondents. 196 (47%) respondents were from Mansfield and Ashfield, 187 (45%) were from Newark and Sherwood and 37 (8%) were from the other category. 8

12 Chart 1- Age and gender in numbers Most people receiving IVF are from the younger age group. The consultation team worked hard to ensure this age group had the opportunity to complete the consultation. 20% of the respondents were aged followed by 17% in the age brackets. It was difficult to get men to complete the consultation. If men and women were spoken to together they almost always chose to take one form and it was completed by the women. Only 25% of the responses came from males. Chart 2- percentage of people who have received IVF The consultation was shared with the two main fertility providers and they were encouraged to share with their patients. The CCGs wanted to ensure this group of people had a chance to complete the consultation. 39 people said they had received either private or NHS funding for IVF. (11 had received both NHS and privately funded IVF treatment). 9

13 Chart 3- number of people disabled and their disability (18% of respondents) A number of disability groups were visited and people with disabilities attended the road shows and public events. 14% of respondents identified themselves as having a disability. 56% of respondents identified a physical disability. Chart 4-religious beliefs The consultation was also shared with churches across mid Nottinghamshire and religious beliefs were captured. 164 people identified themselves as Christian and 147 as having no religion. 10

14 Chart 5-Ethnicity of respondents The ethnicity of the respondents matches closely to the registered population of mid Nottinghamshire. The available census data from 2011 shows at that time 94% of mid Nottinghamshire residents recognised themselves as white British. Question 1 Reduce the female age from 42 to 40 years old or under Reduce the female age from 42 to 40 by age Disagree Agree or over 9 11 No response/ Prefer not to Chart 6-Reduce the female age from 42 to 40 years old by age Chart 7-Reduce the female age from 42 to 40 years old by gender 47% of respondents agreed to reducing the female age range from 42 to 40 years old. The age group that agreed most was 66 years and older. The age group that disagreed most was year olds. More men disagreed than agreed and slightly more women disagreed than agreed. The comments below are an amalgamation of all the comments received relating to 11

15 this question. They have been themed for ease of reading. The individual comments can be found in the appendix. Comment Number of times mentioned Do not restrict give to a healthy women aged or younger 13 People may not know they need treatment until they are 12 older less likely to work if older/risk of complications 10 Keep at 42 9 Reduce age to increase success rate 8 Taking hope away from older people/unfair 7 Reducing age limit would save money 7 Women aged 40 to 42 should have equal rights 5 42 is a late stage to be having children/physiologically/energy 5 Give IVF to any age 4 Going against NICE guidance if restricting age to 40 3 Add a lower limit 18 too low 3 Women should be given every opportunity 2 Reducing the age will not save much money 2 There should be an age limit 1 Depends if lifestyle choice or medical condition 1 We are not an endangered species 1 lifestyle choice if you wait until older 1 Question 2 Develop an age limit for men 12

16 Chart 8- Develop an age limit for men by age Chart 9- Develop an age limit for men by gender 56% of respondents agreed to developing an age limit for men. The age group that agreed most was 66 and over. The age group that disagreed most was year olds. More men disagreed than agreed and more women agreed than disagreed. 2 people did not respond to this question. The comments below are an amalgamation of all the comments received relating to this question. They have been themed for ease of reading. The individual comments can be found in the appendix. Comment Number of times mentioned Same as Women 33 Age No Limit 24 Age Age 42 8 yes to make it fair 8 Age 45 6 No treatment should be offered at any age 5 Age 55 4 If there is an age limit for women there should be one for men 4 Need a limit if research shows a decrease in IVF working 3 Age

17 Question 3 Stop offering IVF on the NHS or under Stop offering IVF on the NHS by age or over Agree Disagree No response 12 8 No response/ Prefer not to Stop offering IVF on the NHS by gender 74% 25% Agree Disagree 0.3% 1 No response Male Female No response/ Prefer not to say Chart 10- Stop offering IVF on the NHS by age Chart 11- Stop offering IVF on the NHS by gender 74% of people disagree to stopping IVF treatment. The age group that disagreed most was year olds. The age group that agreed most with stopping treatment was the 66 and over age group. More men disagreed than agreed with stopping IVF and more women disagreed than agreed. Chart 12- Stop offering IVF on the NHS with and without previous IVF Out of the people that had received IVF either private or NHS 8% agreed with stopping funding with 90% disagreeing. Out of the people who have not received IVF 28% agreed with stopping funding with 72% disagreeing. The comments below are an amalgamation of all the comments received relating to this question. They have been themed for ease of reading. The individual comments can be found in the appendix. 14

18 Comment Number of times mentioned Do not stop IVF 35 Peoples last hope/chance 26 Stop funding and use money for health care 20 People can t afford to pay 19 Give at least 1 cycle 10 Stopping IVF may lead to more costs for mental health issues 10 Adopt/foster 5 Fund more than 1 cycle 4 Against NICE guidelines 3 Infertility is a disease 2 Stop funding IVF 2 Stop benefits 1 Stopping funding won t save much money 1 Question 4 Continue to fund 1 cycle of IVF for a very limited number of exceptional situations or under or over Agree Disagree No response No response/ % 56% % Agree Male Female Disagree No response Chart 13- Continue to fund 1 cycle of IVF for a very limited number of exceptional situations per age Chart 14- Continue to fund 1 cycle of IVF for a very limited number of exceptional situations per gender 43% (166) of respondents agree to continuing to fund for a limited number of exeptional situations and 56% (215) disagree. The two age groups that agreed the most were and 66 and over. The age groups that disagreed the most were and More men and women disagreed than agreed. 15

19 Chart 15- Continue to fund 1 cycle of IVF for a very limited number of exceptional situations with and without previous IVF 36% (14) of people who have receive either private or NHS funded IVF agree with limiting it to a number of exeptional situations, 64% (25) of them disagree. 44% (144) of people who have not received IVF agree and 55% (179) disagree. The comments below are an amalgamation of all the comments received relating to this question. They have been themed for ease of reading. The individual comments can be found in the appendix. Comment Number of times mentioned Continue to fund for everyone 54 Everyone is exceptional 15 Fund for medical problems/disease/genetic condition 11 Stop funding IVF 8 Only if you have no children 7 Only for people who can t afford it 6 Give 3 cycles 6 Cancer patients 5 Leave interpretation of exceptional to clinicians 4 People whose children have died 3 Means tested 2 Joint funding NHS and Patient 2 Only for heterosexual couples 2 Need to try and conceive naturally for 2 years 2 Polycystic ovary 1 16

20 Question 5 How satisfied are you with the way the consultation has been run? Chart 16- Satisfaction in the consultation process 58% (221) of people were either satisfied or very satisfied with the way the consultation has been run. 10% (37) of people were dissatisfied. Some of the reasons for dissatisfaction are listed below. Comment Number of times mentioned Consultation should have been advertised better 15 Asking community for views is good 7 Feel the decision has already been made 4 Survey not well written 3 Attendance at the meetings was poor 2 There should have been more face to face events 1 It seems more bias towards females 1 Too many irrelevant questions 1 Too many closed questions 1 Tone of survey leads to stopping funding 1 Good presentation easy to understand 1 Easy format online 1 Only saw it advertised on Facebook 1 Should have put a flyer through every door 1 The link on one of the websites is small 1 No evening session in Newark 1 Visit young people for their views 1 17

21 Well-advertised 1 Assumptions 14 paper questionnaires were received where it was unclear if the participants disagreed with the options. The paper copy results were transferred onto the online survey. Where an answer box was left blank on the paper survey with no comments left disagree was chosen when in actual fact they may have not had an opinion at all. This was because the online survey forces an agree or disagree response but the paper copy does not. Comments received via The comments below were received either via or through the post but were not on the consultation document. They were received within the timeline of the consultation. Comment 1 We avoid filling in questionnaires or surveys as we have found that many of the questions are often irrelevant also that conclusions can be very easily slanted and we therefore prefer to make the following simple comment: Our view is, bearing in mind the current NHS funding situation, that any conventionally married couple who have no children and cannot conceive should have up to two NHS funded IVF procedures. In order to assist NHS funding both in regard to IVF and generally all salaries in the NHS should be examined and rationalised on the basis that no-one should be paid as much as the Prime Minister. Comment 2 I am aware that with consultations that sadly often the decision has already been made, however I just wanted to send in some comments about the IVF consultation. This really does matter to people and will have a massive impact on people s lives. Infertility is something which is a highly emotional and stressful situation and often through no fault of their own, couples are having an extremely difficult time. Yes I am speaking from personal experience and this is by far the worst thing I have had to experience in my life so far. The only thing keeping me and others going is the hope that IVF will be able to give us what we really want, a family. There is obviously no guarantee that IVF will work but at least everyone at the moment gets to have that chance to try. If you take that away people will find that very difficult to deal with. I strongly suspect the decision will be to cut funding altogether which I think is a very sad situation. What you will be doing is taking away a couples last bit of hope. You will also be putting people who are already stressed under intense stress and pressure to think about how they will find thousands of pounds. For some this just won t be an option and they will have to give up on their dream of becoming parents. I appreciate the NHS is in a very poor financial position but as infertility is such an emotional draining and stressful experience I image a lot of people who want a family but are unable to could end up with mental health issues of some description and use NHS resources in another way. Yes fertility treatment is not something which is lifesaving, but it is something which is life changing. If you desperately want a family and you re not able to it will have a huge impact on your entire life. Please do not take away some couples last hope of a family. Comment 3 IVF should never be available on the NHS while there are children in care there are many youngsters available for adoption, they should be considered as the first option. Unable to adopt... Start saving! I really do not approve of private treatment, but it is your right to spend your cash as you see 18

22 fit. There is also many fraudulent applications, a couple I know in Nottingham had only been together for three months when they first applied for IVF, she fell pregnant at the first attempt and they had split up before the child was born. I would fully support the cut you are considering. Comment from fertility fairness This comment was received using the online consultation survey. We are writing to you on behalf of the Fertility Fairness campaign, to respond to Mansfield & Ashfield CCG and Newark & Sherwood CCG s consultation on to entirely decommission IVF services. Fertility Fairness is an umbrella body, which holds the support of a number of organisations working in the field of infertility, from professional bodies to patient support groups. Mansfield & Ashfield CCG and Newark & Sherwood CCG have proposed introducing severe service restrictions on access to IVF treatment for all but a very small group of patients, which amount to an essential decommissioning of specialist fertility services. Fertility Fairness strongly opposes these proposals, and we recommend that you do not continue with the proposed reduction in fertility services. Infertility is a disease as recognised by the World Health Organisation and, as with any other medical condition, it is deserving of treatment. Simon Stevens, Chief Executive of NHS England, has recently in effect publically argued against the rationing of NHS treatment, stating that ultimately the basis on which people get care on the NHS should be their ability to benefit from treatment. The NHS has had 12 years to implement the original NICE guideline on fertility which has been updated and re-validated; it is unequivocally clear that three full cycles of IVF or ICSI should be provided to those in need. If Mansfield & Ashfield CCG and Newark & Sherwood CCG approve this policy change it will become one of only five groups in the entire country not to offer any IVF treatment. We would like to raise the following concerns: Restricting access to IVF treatment completely would mark a drastic departure from the NICE guidelines, and exacerbates the postcode lottery of fertility services The NICE guideline, issued in 2004 and updated in 2013, recommends that all eligible couples should receive up to three full cycles of IVF or ICSI where the women is aged under 40. This figure was arrived at on the basis of what was deemed to be a reasonable cost and clinical effective use of NHS resources. Mansfield & Ashfield CCG and Newark & Sherwood CCG should not be moving further away from NICE s recommendations in reducing the number of cycles available. It was not a figure plucked out of thin air. As far as patient and national policymaker expectations are concerned, this change would be entirely inappropriate. The outgoing Health Minister Jane Ellison has said that blanket restrictions on procedures that do not take account of the individual healthcare needs of patients are unacceptable. Fertility Fairness is aware from other public consultations within the region that there is a high degree of local support for the commissioning of specialist fertility services, and we would expect that the population within the Mansfield & Ashfield CCG and Newark & Sherwood CCG would share these views. Furthermore, the decommissioning of fertility services raises serious questions of equality as the majority of other CCGs continue to offer wider access to specialist fertility services. If the policy change is approved, Mansfield & Ashfield CCG and Newark & Sherwood CCG will be 19

23 one of the four worst performing CCGs on fertility care in the country. This would also exacerbate the postcode lottery for IVF treatment in a region that, until relatively recently, offered some of the best provision for fertility care in the UK. Finally, the new Health Minister, Nicola Blackwood, responding to proposals to cut services by another CCG stated in a letter to a patient that Although the provision of local services is a matter for CCGs, we expect them to commission services, including fertility services, in line with NICE guidelines. Evidence for consultation Fertility Fairness strongly questions why Mansfield & Ashfield CCG and Newark & Sherwood CCG have classified fertility treatment as less deserving of funding compared to any other non-life threatening condition. Infertility is often caused by disease, is classified as a disease and results in disease. Its patient group warrants NHS treatment. People struggling with its consequences, through depression anxiety and other associated conditions, are more likely to present to their GPs many more times a year than other patients and thus are more expensive to the system. Patients often struggle to hold down jobs whilst dealing with infertility, and face an increased rate of marriage breakdown. No treatment at all is not an acceptable interpretation of making right decisions in the light of local need. NICE has assessed IVF to be a cost-effective procedure for the clinical success rate and Fertility Fairness believes it is not Mansfield & Ashfield CCG and Newark & Sherwood CCG s place to challenge this assessment. Women typically see a success rate of 25-35% per transfer. Fertility Fairness does not consider this to be an often-unsuccessful treatment, especially when compared to nature. Furthermore, patients in receipt of NHS-funded IVF treatment are the cohort that are most likely to conceive as they will have been narrowed down by clinical selection criteria. Earlier this month, a large cohort study reported success rates of 71% within five years of the first treatment (57% due to treatment, 14% spontaneously), i.e. three in four women starting fertility treatment will have a baby within five years. Long term costs associated with decommissioning fertility services In recent years, fertility treatment abroad has become an increasingly affordable option for UK patients unable to access IVF on the NHS, and evidence suggests that the demand is increasing exponentially. WhatClinic, a private healthcare search engine, has reported a 191% increase in enquiries from UK patients to clinics abroad for IVF treatment in the last year alone. However, whilst this treatment might represent a more affordable option for patients, it carries hidden costs to the NHS. The Human Fertilisation & Embryology Authority (HFEA) has always strictly regulated the number of embryo that can be transferred during IVF treatment to reduce the chance of multiple pregnancies. Since 2009 the HFEA, strongly supported by the professional bodies and patient organisations, requires UK fertility clinics to aim for a target of a maximum 10% multiple birth rates. The main way to achieve this is through elective single embryo transfer. UK guidelines indicate that women under the age of 37 should, in most cases, receive only a single embryo transfer during their first cycle of IVF. By contrast, research from the European Society of Human Reproduction and Embryology (ESHRE) shows that in some other European countries, and outside of the EU, there is often no statutory limit to the number of embryos transferred. One ESHRE study examining 225,507 IVF cycles across Europe found that the majority of clinics questioned were not only conducting two embryo transfers, but that 22% were using three embryo transfers, and a further 3% were using four embryo transfers. 20

24 The UK has pursued strict strategies to restrict multiple embryo transfers because of the complications for mothers and babies and high costs that arise out of multiple pregnancies. At least half of twins are born before 37 weeks (making them pre-term) with low birth weights, which puts them at a high risk of serious health problems. Over 90% of triplets are born before 37 weeks, and many are born sufficiently prematurely that they are at high risk of long-lasting serious health problems and death. The NHS operates strict clinical criteria on patients eligible for IVF funding, meaning that those patients that are eligible for NHS funded treatment are the most likely to conceive. By cutting funding, Mansfield & Ashfield CCG and Newark & Sherwood CCG will increase the risk that this patient cohort will receive treatment abroad which is highly likely to drive up the number of multiple births the CCG sees (not least because these patients are those most likely to respond to treatment successfully). The consultation notes that the Individual Funding Request (IFR) process is still available for patients who believe that they have exceptional circumstances. If decommissioning occurs, IFR requests will be the only option for your patients, which is administratively burdensome for clinicians and will increase following the policy change. In any case, IFRs do not amount to a service. Fertility Fairness urges the CCG to consider how much more difficult it will be for the CCG to return to any level of IVF funding if they entirely decommission the service and infrastructure is removed. We believe that Mansfield & Ashfield CCG and Newark & Sherwood CCG should consider what other commissioning options exist that may allow them to make financial savings. Both NICE and the former All Party Parliamentary Group on Infertility have highlighted common inefficiencies and opportunities for savings within fertility pathways. Options as described in the consultation and results Option Results Top comments (mentioned 10 times or more) 1. Reduce the 47% (181) agree female age from 42 to 40 53% (202) disagree years old. 2. Develop an age limit for men 3. Stop offering IVF on the NHS Percentage difference 6% 56% (213) agree 44%(168) disagree Percentage difference 12% 25% (97) agree 74% (285) disagree Percentage difference 49% Do not restrict the age for women, give it to a healthy women aged or younger People may not know they need treatment until they are older less likely to work if older/risk of complications Same as Women Age 50 No Limit Age 40 Do not stop IVF Peoples last hope/chance Stop funding and use money for health care People can t afford to pay Give at least 1 cycle 21 Financial consideration This would save an average of 15,000 a year Unable to calculate as we do not currently have an age limit or collect men s ages This would save an average of 300,000 per year

25 4. Continue to fund 1 cycle of IVF for a very limited number of exceptional situations 43% (166) agree 56% (215) disagree Percentage difference 13% Stopping IVF may lead to more costs for mental health issues Continue to fund for everyone Everyone is exceptional Fund for medical problems/disease/genetic condition This would save an average of 240,000 per year 22

26 Appendix 1 Letter from Overview and Scrutiny Committee 23

27 Appendix 2 Questions for consideration Question 1: Please tell us whether you are: (please tick one box): Member of the general public living in Mansfield or Ashfield Member of the general public living in Newark or Sherwood An NHS provider A social care provider A private provider A representative from the voluntary sector Other (please specify) Question 2: Having read the information provided above please indicate your preference below. You may choose more than one option. Reduce the female age from 42 to 40 years old. Comments Develop an age limit for men Comments What do you think the age limit should be? Stop offering IVF on the NHS Comments Continue to fund 1 cycle of IVF for a very limited number of exceptional situations 24

28 Comments and any ideas to what exceptional situations should be? Any other comments: Please add extra sheets for comments if required. We are committed to providing equal access to healthcare services to all members of the community. To achieve this, gathering the following information is essential and will help us ensure that we deliver the most effective and appropriate healthcare. There are some guidance notes on the next page. Responding to these questions is entirely voluntary and any information provided will remain anonymous. 25

29 What is your age? please write in the box below Prefer not to state 18 or under or over What is your gender? Prefer not to state Male Female Do you/have you ever identified yourself as trans or transgender? Prefer not to state Yes No What is your status? Prefer not to state Single Married/Civil partnership Widow(er) With partner Separated Divorced/Dissolved Have you received NHS funded IVF? Prefer not to state Yes No Have you received privately funded IVF? Prefer not to state Yes No Are you pregnant or have you had a baby in the last six months? Prefer not to state Yes No Not applicable Have you any other children over 6 months old? Prefer not to state Yes No Not applicable Which of the following best describes how you think of yourself? Prefer not to state Heterosexual (attracted to the opposite sex) Bisexual (attracted to both sexes) Lesbian/Gay (attracted to the same sex) Other Do you consider that you have a disability? Prefer not to state Yes No I don t know If yes, how would you describe your disability? Prefer not to state Sensory Learning Mental Health Physical Other Do you have a religion or belief? Prefer not to state Buddhism Islam No Religion Christianity Judaism Other Religion/Belief Hinduism Sikhism What is your first language? please write in the box below Prefer not to state Please tell us your ethnic group Prefer not to state African Indian Arab Irish Bangladeshi Pakistani Caribbean Polish Chinese Russian Gypsy/ Traveler White British Other Please state.. How satisfied are you with the way this consultation is being run? Prefer not to state Very satisfied Satisfied Neither satisfied or dissatisfied Comments: Very dissatisfied Guidance notes to help you complete the form If there is any information that you do not want to provide just tick the box Prefer not to state 26

30 Do you/have you ever identified yourself as trans or transgender? The process of transitioning from one gender to another. A person who is transgender is someone who expresses themselves in a different gender to the gender they were assigned at birth. Although legislation covers gender reassignment, for the purposes of analysis we adopt the term trans to encompass the wider community. What is your status? Marriage is defined as a legally or formally recognised union between a man and a woman or two people of the same sex. Same-sex couples can also have their relationship legally recognised as a civil partnership. Civil partners must be treated the same as married couples on a wide range of legal matters. Which of the following best describes how you think of yourself? Whether a person s sexual attraction is towards their own sex, the opposite sex or to both sexes. Do you consider that you have a disability? The Equality Act 2010 states that a person has a disability if they have a physical or mental impairment which has a long term and substantial adverse effect on their ability to carry out normal day to day activities. Physical or mental impairment includes sensory impairments such as those affecting sight or hearing. Do you have a religion or belief? Religion has the meaning usually given to it but belief includes religious and philosophical beliefs including lack of believe (such as atheism). Generally, a belief should affect your life choices or the way you live for it to be included in the definition. Please tell us your ethnic group Refers to the protected characteristic of race. It refers to a group of people defined by their race, colour and nationality (including citizenship), ethnic or national origins. If you are hard of hearing, have sight impairment, English is not your first language or you require this in an easy read format please contact the Engagement and Communications Team via at NHSCCG@bettertogether@nhs.net or telephone Once completed please send pages to; Consultation FREEPOST RTGE-CRAT-BABH NHS Mansfield & Ashfield CCG Hawthorn House Mansfield Notts NG21 0HJ Thank you for your time completing this questionnaire 27

31 Appendix 3 All comments received All comments received in relation to reduce the female age from 42 to 40 years old Do not reduce age from 42 to 40 years old. How can we morally take the hope away from a women of this age This is wrong. The older the women is the greater need. We are often dealing with professional people, who have taken years to qualify/train If a woman has not sought IVF before they are 40 they should fund the treatment as there is a lower chance of success and that is a choice they have made. I don't agree with IVF full stop. I am not surprised the resources in the UK are diminishing because of over population. IVF has a habit of producing twins or triplets or even up to quintuplets. This was never meant to be. People have got to accept that if they cannot conceive, they can either foster or adopt. Cost is also a major factor, think of the millions that could be saved. Only if the only way to keep IVF on NHS! Restricting access to IVF treatment completely for women aged would mark a significant departure from the NICE guidelines, and exacerbates the postcode lottery of fertility services The NICE guideline, issued in 2004 and updated in 2013, recommends that women aged years should be offered 1 full cycle. This figure was arrived at on the basis of what was deemed to be a reasonable cost and clinical effective use of NHS resources. Mansfield & Ashield CCG and Newark & Sherwood CCG should not be moving further away from NICE s recommendations for access criteria. The criteria were not a figure plucked out of thin air. Strongly disagree. Some women do not have a choice before they are 42 But I think more importantly should be looking at people how smoke, drink or are obese should not be considered, not a healthy women at age 42 Current national policy recommends 42 years of age as the age that females who have the right criteria should still be able to access three cycles of IVF treatment. SFHT females should have this made available to them Will be making more savings No reason to limit to 40 The 40 age limit is already enforced by the CCG whose policy is below NICE standard recommendations. I don t agree with this the age limit should be 42 with 3 cycles Women at the age of 40 or 42 should have equal rights to have the IVF treatments Because people may feel like their body isn't going to be good enough at 42 After a thorough health check My friend is 43 and has been trying IVF for almost 7 years and I feel that now she is pregnant and wonder if she has the energy for a child Women should be given every opportunity when having difficulty in conceiving Must be awful to want children and be childless This depends on the health of the female I feel there should be an age limit everyone can choose when they are ready to have children others aren t that fortunate Should be left at 42 The percentage of patients who are older, the treatment is less likely to work 40 Reduce the age to 40 or younger 28

32 If treatment is commenced at 42 then the potential age of a mother would be greater than 42 by the time a successful pregnancy may result. Reducing it to 40 helps in a potential new mother being able to cope with a young child as well as that child hopefully having their parent around for longer. I also understand that the lower age limit is 18 and surely this should be a minimum of either 25 or 30? Even 25 can be too young for some people to cope with children. Or event 38 Not much difference 42 does seem like a late stage to be having children, and with this age comes illness or problems that the developing foetus could have and that the child could have in life. Two years isn't too big a drop in age so seems like something that could work, especially as the chances of the IVF working decrease majorly at this age But lower to 35 I think it should be younger than 40 No I think is should be kept the same 2 years seems such a small gap for a chance of a life time having a baby I believe childbirth should be for people under 40 years old to reduce the chance of complications and stillbirths Risk of more complications Yes has there may be more complications I think aged 40 should be the limit No comment Unfair to reduce age This is not equality Depending upon if waiting for a family is lifestyle choice or medical condition There really is not enough information around to make people aware that the chances of IVF working for women aged 40 plus is significantly lower than in the 30 s. If you decide to go ahead and reduce the female age to 40, it would be hugely irresponsible to do so without first giving 2 years notice of the change of policy. To improve overall percentage of successful pregnancies therefore better use of resources Disagree as this does not go far enough Minimal impact and would still be available for a large number of women No 40 is young for a female Possible reduce the age further down to 37. Concerns about the dangers of possible pregnancy related issues in older women I think they should reduce the age to 40 because it will save money I think it should stay at 42 based on the fact that a sudden life experience could happen at 40 meaning they want a baby a short while later. I think it should stay at 42 because we are giving more women an opportunity to be a mother but they should be informed of any risks to the baby as the age of the mother affects them a lot As a professional, I feel I need to work for several years to be able to afford to have a child. This is how many female professionals feel and as a result women are starting to try for a baby later in life. Having a baby later means that the parents are more likely to be able to provide for a baby (both financially and emotionally) saving the NHS & society money in the long run. By lowering the age you are discriminating against professionals, the very people who pay the taxes to support all the unemployed teenage mums! I agree with this statement as it will save money and the baby is more likely to develop issues Because as the women gets older, it could put the baby at risk Many women do not know they need treatment until they are older and have been trying for a long time Only a small group of people who have it, but it saves money Reduce age to increase success rate 29