Medway CCG Fertility Treatment Engagement Report June 2018

Transcription

1 Medway CCG Fertility Treatment Engagement Report June 2018 Produced by 1

2 1. Executive Summary Introduction Like most health economies in the UK, there is a growing gap between the money available in Kent and Medway, to pay for NHS care and associated costs. Medway CCG has looked at several ways to reduce costs and improve efficiency and one of the areas under consideration is funding for fertility treatment. The CCG was keen to carry out early engagement with public and staff to gather views, prior to a possible formal consultation. The Public Engagement Agency (PEA ) was commissioned to design, manage, analyse and report the findings from the survey; contribute to face-toface session and document feedback. This report provides an overview of the early engagement process and key findings from the feedback. Context There are three main types of treatment, one of which is assisted conception including in vitro fertilisation (IVF). NHS Medway CCG spent approximately 226,000 on in vitro fertilisation (IVF) and intra-cytoplasmic sperm injection (ICSI) in the last financial year. This funding provided around 60 eligible couples with treatment. Each cycle costs about 3,750. Approximately 171,000 of the total expenditure is on the first cycle of treatment, and 55,000 funds second cycles of treatment. For those people who meet the criteria for in vitro fertilisation (IVF) on the NHS, Medway CCG is considering reducing the number of cycles offered from two to one 1. Engagement methodology The CCG wished to engage widely with local people and staff to gain their views on this proposal. To do this, they: held an early discussion with the community and voluntary sector strategic health group to test and develop potential survey questions created an online survey for patients, public and staff conducted face to face interviews with people attending leisure centres and libraries across Medway (5 sessions of up to 3 hours per session, held at different times of the day/ days of the week to reach a range of people). Feedback was uploaded to the online survey 1 For those people who meet the criteria for in vitro fertilisation (IVF) with or without intracytoplasmic sperm injection (ICSI) on the NHS, Medway CCG currently offers a maximum of four embryo transfers including no more than two transfers from fresh cycles. They are proposing reducing this to a maximum of two embryo transfers; one using a fresh embryo and one using a frozen embryo collected as part of the same cycle 2

3 through Involving Medway, conducted 12 engagement sessions with members of the public in a range of community group settings. Feedback was uploaded to the online survey created an IVF post on Facebook actively targeting younger working age people who live in Medway held a public meeting presented and discussed at the GP Practices Protected Learning Time The above engagement was actively promoted through: the CCG s bulletin to GPs & staff Involving Medway, Medway Healthwatch and Medway Voluntary Action cascading the information through community groups and the voluntary sector three sets of s sent to approximately 350 local stakeholders local councillors, PPG chairs, interested patients & local residents, community and voluntary sector groups a press release and articles in Kent online and in the Medway Messenger Key feedback themes overall There was strong agreement with the proposal that the NHS should review services in general and fairly strong agreement that fertility services should be part of the review. However, there was strong/fairly strong disagreement when asked about the proposal to reduce the number of cycles of fertility treatment from two to one. The main reasons given for not reducing treatment included: The financial cost consideration should be given to other, better ways of saving money: the CCG needs to look at/rationalise NHS non-clinical costs (such as contractors, management costs) and review funding of self-inflicted health problems (such as smoking, obesity) many people cannot afford to pay for the treatment and will therefore be deprived of the opportunity to become parents The emotional and psychological cost the distress experienced by people trying unsuccessfully to conceive and the cost of resultant mental health problems would be greater than the savings Current and potential inequalities discrimination and inequality already exists - for example, exclusion of same sex parents and couples where one partner already has a child from a previous relationship cuts will potentially lead to further health inequality Potential reduction in success rates the success rates for the first cycle are already low Reasons given by those who agreed with reducing treatment included: 3

4 The money needs to be spent on other health care areas, such as emergency care, life threatening conditions (cancer, heart disease), public health NHS resources are limited and people are now more used to paying for certain health services It s a personal choice rather than a health problem Other suggestions and comments included: Conclusion Review the eligibility criteria to ensure greater equity of access and taking into account changes in social values Consider each situation individually, against the eligibility criteria Review the effectiveness of current treatment rather than accessibility Review the cost with fertility providers to make more affordable Increase, rather than decrease the number of cycles to 3, in line with NICE recommendations Promote adoption as an alternative Review the tariff for IVF funding and increase taxes to increase NHS funding Ensure treatment is consistent across Kent and Medway and across the UK (currently postcode lottery ) Reinvest the money in other services Whilst a large proportion of people engaged in this early engagement activity agreed with the need to review local health services generally and to include IVF treatment in the review, a large proportion also disagreed with the proposal to reduce the number of cycles from two to one, particularly because of the financial, emotional and psychological impact on people trying to conceive. It is recommended that the key feedback themes above are taken into consideration in the next stage of reviewing IVF treatment and further development of proposals. Some participants commented that the CCG needed to be clearer about why the change was being proposed and the rationale for the reduction in IVF services needed to be stronger. It is suggested that future engagement and/or consultation should: provide more information on all services under review provide more detailed information on costings and rationale for reducing the number of cycles look at whether there are other options such as changing eligibility criteria for IVF describe whether the review is entirely based on cost savings or also on quality and best patient outcomes demonstrate how the service is being reviewed/developed to show effectiveness and make best use of, for example, new technology 2. Detailed feedback, by engagement activity 4

5 2.1. Survey Overview of results In total, 948 people completed the survey, conducted between May 17 th and June 22 nd, responses came from patients and the public and a further 80 responses were from staff. There is overwhelming support from both staff and patients/public that the NHS should review services in general (96% and 89% agree to some extent respectively). There is further support for the review of fertility services, 81% of staff and 70% of patients/public to some extent agree. However, when presented with potential changes to the number of cycles of fertility treatment, most staff (64%) and patients/public (73%) disagree to some extent. Amongst staff the main rationale for not reducing treatment is that there are other/better ways to save money. The main reasons against reducing treatment given by patients/public are: The resulting mental health problems and associated costs The potential reduction in success rates for first cycle which are already low Other better areas to consider cost savings The need for treatment to be consistent across the UK Survey Methodology The survey was based on a version created by the Clinical Commissioning Groups (CCGs) in Kent and Medway, adapted for use in the Medway CCG area. The questions were also tested with the community and voluntary sector strategic health group. A word version of the survey can be found at Appendix A. The survey was promoted online, through the CCG website, other contacts/websites, through a specific Facebook post, and face to face at 5 venues and a public event. Overall there were 745 responses where people independently completed online, 131 paper responses that were uploaded onto the online survey by staff and 101 completed face-toface which were either recorded online in the moment by interviewing staff or uploaded later. Survey Feedback, by group Staff Of those respondents identifying themselves as staff (80), 51% are clinical staff and 49% are non-clinical staff. The staff work at the following organisations in a range of departments. Organisations % of Staff Medway Foundation Trust 55% Medway CCG 16% 5

6 Other 29% All responding 73 Over half of staff responding strongly agree with the need for the NHS to review every service to ensure value for the whole population (59%) and over a third agree (37%). In terms of the NHS reviewing fertility services, 38% strongly agree and 43% agree. STAFF: Q4. To what extent do you agree or disagree with the following statements? All responding: 79 59% 38% 37% 8% 3% 11% 1% Q4a The NHS has to review every service it is buying Q4b. It is right for the NHS to review fertility services to make sure it is getting the best value for the whole of the population 43% Strongly disagree Disagree Agree Strongly agree 6

7 Given the level of agreement with the need for the NHS to review services including fertility treatment, it is interesting to note that cost is deemed the least important factor in terms of decisions on spending amongst the responding staff. Patient safety and improving people s health are deemed equally important ranking first and second in terms of decisions on spending. STAFF: Q5. Please rank each of the following factors in order of importance for taking decisions on spending where 1 is most important All responding: 80 Patient safety 294 Improving people s health 293 How well it works (clinical effectiveness of treatment) 253 Meeting the needs of the whole population 228 How much it costs This is a weighted calculation. Items ranked first are valued higher than the following ranks, the score is a sum of all weighted rank counts. 7

8 Over two fifths of staff strongly disagree (42%) with reducing the number of cycles from two to one and a further fifth (22%) disagree. Over a third agree to some extent (36%). STAFF: Q6. For those people who meet the criteria for in vitro fertilisation (IVF) on the NHS, we are considering reducing the number of cycles we offer from two to one*. To what extent do you agree or disagree that this would be a good way for the NHS to save money locally? All responding: 79 Strongly agree, 16% Strongly disagree, 42% Agree, 20% Disagree, 22% *For those people who meet the criteria for in vitro fertilisation (IVF) with or without intra-cytoplasmic sperm injection (ICSI) on the NHS, we currently offer a maximum of four embryo transfers including no more than two transfers from fresh cycles. We are proposing reducing this to a maximum of two embryo transfers; one using a fresh embryo and one using a frozen embryo collected as part of the same cycle. Other areas to take into consideration Overwhelmingly the comments and feedback from staff are against any cuts to fertility treatment. Most mentions by staff are that there are better ways and areas in which to save money citing bank staff, contractors and other services which treat self-inflicted health problems (9 mentions). Everyone has the right to be a parent and the NHS should be helping if they can. The money spent on contractors and bank staff compared to perm staff is mind blowing! If you want to save money you should start there. There are many ways trusts could save money without cutting funding to services like these. [Clinical staff] I think it shouldn t even be looked at and things like giving people free weight loss surgery is the thing that should be looked at. It s mainly there fault they got 8

9 that way through eating then they go and get free surgery to lose weight which I think is totally wrong. [Medway Foundation Trust, Clinical staff] Further mentions are also made about the resulting mental health problems for couples if funding is removed and the cost of this to the NHS (5 mentions). It s not about money it s about people who are suffering fertility problems and their mental wellbeing. [Medway NHS, Clinical staff] Inability to have a child has massive mental implications and this is not being taken into consideration at all. Cost of treating depression, possible suicide... [Medway Foundation Trust, Non-clinical staff] The feedback also highlights the NICE recommendations that 3 cycles should be provided and that any cost savings should not override this (3 mentions). Cost savings should not be a factor in the on going provision of IVF treatment to the level that it currently is. Costs savings should not override NICE recommendations for couples to be offered three cycles. The more times couples attempt IVF the higher their chance of conceiving (according to the Nobel Prize winner Dr Robert Edwards speaking on BBC Radio Kent 06/06/2018). Reducing IVF cycles will deliver fertility treatment on the cheap with the success rates from NHS funded cycles decreasing over time. [Medway CCG, Non-clinical staff] Comments also highlight the need for national criteria rather than creating a postcode lottery (2 mentions). The fact that people who are wanting fertility treatment are often forced to consider moving in order to live in a CCG where more IVF treatment is funded. [Guys and St Thomas Foundation Trust, Clinical staff] There are a number of comments relating to the eligibility criteria, including the need to review the criteria/be less restrictive (3 mentions), consider couples ability to pay themselves (akin to means testing) (2 mentions), the need for couples to be healthy (nonsmokers, normal BMI etc.) (2 mentions), ensuring eligibility criteria is adhered to (1 mention) and the need to include criteria of a stay in the UK of 3 plus years (1 mention). How many people require the second cycle? What is the success rate of that compared to the first? You have already stated the cost is significantly decreased the second time. Is it different for IVF and ICSI? Would a review of the eligibility criteria also be a money saving option? [Medway Foundation Trust, Clinical staff] The couples ability to pay themselves should be considered. [Medway Foundation Trust, Clinical staff] Ensuring the eligibility criteria are robustly adhered to, to ensure fairness. Also, taking into account other areas and the policies (number of cycles permitted) in 9

10 each area so it becomes less 'postcode lottery' and more 'based on the needs of the local population of that area'. [Medway Foundation Trust, Non-clinical staff] Other feedback includes: Cuts will lead to health inequality Lack of rationale for the review Need to review effectiveness of treatment rather than accessibility Better negotiations with fertility providers to improve affordability Look at individual circumstances Patients/Members of Public Of those respondents identifying themselves as either patients or members of the public, the following provides a profile: Postcode Area % Age % Chatham 28% years 6% Gillingham 28% years 43% Rochester 23% years 28% Maidstone 9% years 9% Other Kent 7% years 6% Sittingbourne 3% years 6% Other Out of Area* 2% 75 years or more 2% Sheerness 1% Prefer not to answer 1% All Responding 868 All Responding 853 Gender % Ethnicity % Male 12% White 89% Female 86% Non-white 8% Prefer not to answer 1% Prefer not to answer 3% All Responding 852 All Responding 852 *The out of area respondents account for 15 individuals which have been removed from the overall analysis. 10

11 Over half of the patients/public responding agree with the need for the NHS to review every service to ensure value for the whole population (53%) and over a third strongly agree (36%). In terms of the NHS reviewing fertility services, 21% agree and 49% strongly agree. PATIENTS/PUBLIC: Q4. To what extent do you agree or disagree with the following statements? All responding: Q4a: 850, Q4b: % 21% 49% 53% 5% 7% Q4a. The NHS has to review every service it is buyingq4b. It is right for the NHS to review fertility services to make sure it is getting the best value for the whole of the population 14% 15% Strongly disagree Disagree Agree Strongly agree 11

12 In terms of the relative importance of factors for taking decisions on spending, improving people s health is deemed most important as shown below. Patient safety emerges as second most important whilst cost is deemed least important overall. PATIENTS/PUBLIC: Q5. Please rank each of the following factors in order of importance for taking decisions on spending where 1 is most important All responding: 850 Improving people s health 3287 Patient safety 2940 Meeting the needs of the whole population 2672 How well it works (clinical effectiveness of treatment) 2560 How much it costs This is a weighted calculation. Items ranked first are valued higher than the following ranks, the score is a sum of all weighted rank counts. 12

13 Over half of patients/public strongly disagree (51%) with reducing the number of cycles from two to one and a further fifth (22%) disagree. Over a quarter agree to some extent (27%). PATIENTS/PUBLIC: Q6. For those people who meet the criteria for in vitro fertilisation (IVF) on the NHS, we are considering reducing the number of cycles we offer from two to one*. To what extent do you agree or disagree that this would be a good way for the NHS to save money. All responding: 849 Strongly agree, 11% Agree, 16% Strongly disagree, 51% Disagree, 22% *For those people who meet the criteria for in vitro fertilisation (IVF) with or without intra-cytoplasmic sperm injection (ICSI) on the NHS, we currently offer a maximum of four embryo transfers including no more than two transfers from fresh cycles. We are proposing reducing this to a maximum of two embryo transfers; one using a fresh embryo and one using a frozen embryo collected as part of the same cycle. Other areas to take into consideration In line with the results above, the comments and feedback from patients and public are mostly against any cuts to fertility treatment. Most frequently mentioned is the potential for increased mental health issues if these cuts are made, which many believe will be costlier in the long term (80 mentions) Reducing the number of cycles I do not think is a fair decision. I think the mental wellbeing and toll this can take on people who want to be parents need to be considered and the cost to look after these people in this capacity could well out weigh the cost of the extra cycle you offer. [Rochester, years, Female] You also need to consider the costs of couples who have 1 failed cycle and cannot afford a second. My mental health suffered greatly as a result of our infertility. If we had only been allowed 1 cycle which failed and did not provide extra embryos for a later cycle I would have been accessing the NHS for emotional issues - depression, anxiety, potentially suicidal thoughts or perhaps even actions. For others this could extend to alcoholism, drug addiction - 13

14 anything to ease the pain and heartache. How does the cost of dealing with those match against a second round of IVF? [Gillingham, years, Female] Should take into account impact on mental health of not having the second cycle. [Rochester, years, Female] There are many mentions of the low success rate for fertility treatment in the first cycle with patients/public highlighting the fact that it is seen as a fact-finding cycle by the clinicians and that there will be added stress if that is the only cycle offered and therefore success rates will drop further (68 mentions). Stats of IVF success - more cycles more success. First cycle unclear how patient will react so unfair to restrict to one fresh cycle and may alter treatment. If none frozen on first cycle then no second go. [Maidstone, years, Female] I do not believe that couples should be restricted to one cycle if they as a couple are deemed to be within a healthy range. As any fertility expert will tell you the first cycle is generally a test to see which/how much medication is needed during the cycle. [Chatham, years, Male] You need to consider that the first cycle is as much "fact finding" as anything else (those were the words of my consultant) to see how the drugs work, how the patient reacts etc. A second cycle can take that into account. [Gillingham, years, Female] A further 68 mentions are general comments against the reduction of cycles offered, with most citing other areas for savings. After nearly 4 years of trying to family plan i am now being referred for fertility treatment. I cannot afford private treatment so to cut the right to treatment is unfair. I have worked hard all my life paying national insurance and barely use the NHS. Yet now I need to use it, services are being cut. It s unfair. To cut the service by half you will be halving the chances of parenthood for so many. And that's life-changing. [Chatham, years, Female] IVF should be offered to all more than once, funding should be made available for such a vital service and this service should not be reduced. [Gillingham, years, Female] There is also feedback that supports equality of fertility treatment across the country rather than it being a postcode lottery whereby different areas offer varying levels of treatment. This is mentioned by 30 patients/public who highlight the NICE guidelines of 3 cycles. 1 cycle of fresh IVF is not enough for the majority of women. NICE recommends 3 fresh cycles of IVF so we already fall short of that figure I strongly disagree with the proposal to reduce the number of cycles. This would be a very poor choice. The NHS is there to help everyone. I pay my taxes and this is a treatment 14

15 that should be available on the NHS. I think the service should be increased in line with NICE, NOT reduced!! [Chatham, years, Female] The entire Medway NHS fertility services need to align with the services elsewhere in the country and with NICE guidelines. The existing services are already not adequate and not equitable. Further reduction to the treatment available is not acceptable and forces people to pay for services elsewhere, follow unsafe practices outside of a clinical setting or sadly not have the opportunity to attempt any form of treatment. Medway CCG should ideally offer the full treatment. [Chatham, years, Female] This should also be a nationwide decision so that couples from any area/county receive the same chances... currently it's a postcode lottery. [Gillingham, years, Female] Many people highlight specific areas of health services that should be cut instead of fertility treatment. Most frequently mentioned are those deemed as self-inflicted illnesses (28 mentions). I think that the NHS spends a lot of money on giving people gastric bands, tattooing removal, plastic surgery, these are things people can live without, these are sometimes things people have done to themselves. Fertility problems are not something people can control. [Rochester, years, Female] Smokers. The obese. Those who deliberately put themselves in unhealthy situations... maybe cuts there could be a starting point. [Gillingham, years, Male] People need IVF treatment through no fault of their own. Whereas people who "need" "weight loss" treatment is generally through their own lifestyle decision - i.e. eating too much and not moving enough Therefore, I think this is the area that the NHS should be looking at to make savings, not IVF. [Gillingham, years, Female] Other areas highlighted for possible savings include management costs (16 mentions). Money should be saved by cutting middle management jobs or reducing the extortionate salaries earned by chief execs etc. so that it can be better spent funding vital programmes like the IVF programme. [Rochester, years, Female] The NHS should be looking at cutting costs elsewhere I.e. the higher paid grades in your senior management departments. [Chatham, years, Female] Further mentions are made about the need to consider each individual case rather than setting a new policy for all (20 mentions). 15

16 Personal circumstance. Everyone is individual and has gone through their own fertility issues including loss. Yes there should be a guideline, but options to step outside of those guidelines depending on individual circumstances and issues. [Sheerness, years, Female] Decisions on the number of attempts should be based on an individual patient s circumstances and medical conditions rather than a blanket decision. [Gillingham, years, Female] There is also some feedback that focuses on the treatment offered to same sex couples and that it should be equal to that offered to others (12 mentions). I strongly think the NHS should be offering same sex couples the same rights as heterosexuals couples to have fertility treatment offered. Same sex couples pay their taxes just the same as anyone else Everyone should have the support of the NHS and right to start a family. [Gillingham, years, Female] Any couples (same sex, trans, etc.) should have same rights for treatment. [Gillingham, Male] How will this affect same sex couples who previously had little to no support. [Chatham, years, Female] In addition, there are a similar number of mentions for the need to change the rules relating to treatment being refused if one partner has a child from a previous relationship (13 mentions). I think IVF should be looked at as I have no children and are having fertility issues for a few years now. My husband has a child from a previous marriage and now I'm not entitled to any IVF treatment on the NHS. This is no way fair for me as an individual have not and now will not experience parenthood. This needs looking at as an individual case not everyone is the same. [Rochester, years, Female] Offering IVF to couples who already have one child should be considered. Many couples have a parent with a child from a previous marriage and a parent with no biological children of their own and are refused any help on that basis. [Gillingham, years, Female] Other feedback against the proposed changes includes: Using means testing to determine eligibility (9 mentions) To consider patient nationality (only offer to those living in UK for 3+ years) and previous contributions (9 mentions) To offer subsequent cycles at a reduced rate/part funding (highlighting cost of private treatment as being higher than via the NHS) (8 mentions) Create stricter criteria for eligibility before making changes (6 mentions) 16

17 Only small savings (5 mentions) Should be available to all or none but must not discriminate (5 mentions) Look at new technologies to improve effectiveness (5 mentions) A potential increase in health inequality (4 mentions) More thorough testing prior to treatment to ensure maximum effectiveness (4 mentions) Charge others for using services due to self-inflicted health problems (4 mentions) Patients receiving fertility should be healthy, non-smokers and non-drinkers etc. (4 mentions) In terms of those that support the proposed changes, most frequently mentioned is the need to spend more on emergency care, life threatening health issues and public health (23 mentions). Life saving treatments for people already in the world are surely more important than adding to a booming population which is stretching the NHS. I'm not against people having IVF and children, but one free round is enough in my opinion, and I think applicants should be screened. [Gravesend, years, Female] IVF should not be funded by the NHS. Being a parent does not end your life - not funding cancer treatment does. I'm a woman who struggling to conceive a second child completely agree that the NHS won't be funding my treatment. Why should they? It s my want, not theirs. [Gillingham, years, Female] There are other things -life threatening situations must take priority. [Chatham, years, Female] Others suggest adoption as an alternative (12 mentions). I totally understand that there are a significant number of couples that struggle to conceive, as someone who has recently experienced an ectopic pregnancy, I know that I could struggle in the future. However I do think that reducing from 2 to 1 is the right move, there just isn t an endless supply of resources and there are numerous children and young people needing foster and adoption places- I am also a foster carer. [Rochester, years, Female] We should improve the adoption process to find homes for children already living in this world without living parents rather than putting money into funding off which as a whole isn't particularly successful and costly. [Sittingbourne, years, Female] I have not experienced this service and do not know what is involved in the early stages but is there an opportunity to link up with the local authority to cover adoption as part of the discussions with prospective parents? [Chatham, years, Male] Other feedback in favour of the proposed changes includes: 17

18 IVF should not be funded by the NHS (8 mentions) It is not a right to have a baby (6 mentions) IVF should not be offered to those on benefits (6 mentions) IVF is expensive with low success rates (4 mentions) IVF should only be available to those infertile due to illness (4 mentions) If you cannot afford IVF then you cannot afford to have a child (4 mentions) All verbatim comments can be found at Appendix B (staff) and Appendix C (patients and public) Facebook campaign An IVF post was created and paid for on Facebook, to target as many areas of Medway as possible over a period of 15 days. As of 25 th June, the post had reached 40,434 people. The post invited people to complete the online survey and also generated 160 online comments. Key issues from the comments included: The financial cost of paying for the treatment and how many would be unable to afford it xxx was born on our second and last attempt at IVF as we couldn t afford to go private. If I had only been offered one round he wouldn t be here and I wouldn t be a mother. Please we must ensure couples are entitled to the two round that NICE guidelines recommends and mustn t allow people s chance to become parents after years of trying to be reduced just to save money. It s fact that you are more likely to fall pregnant on subsequent rounds of IVF The cost of IVF privately would mean that many couples who want to have children will never be able to as the costs are far too high The emotional and psychological cost of reducing the treatment That is a lot for something which is still not guaranteed. But the possible cost of counselling for me to come to terms with this could cost the NHS far more Infertility is a horrible thing with monthly, weekly and daily disappointment. It affects the whole family, not just the couple. Without 2 fresh IVF attempts we would not have this amazing little girl Had we not had these attempts I m sure it would have cost a lot more in mental health care for us It will only increase your costs in other sectors e.g. mental health, the facts and percentages are there. It's a struggle and a pain that is indescribable. To remove, or even lower it to one, would be one of the worst decisions you could make 18

19 Being able to have IVF gives us hope. It allows us to not give up because we know that there's still a chance The cost of self-imposed health needs They have stated how much IVF cost last year, I would like to know for instance how much they spent on people such as drug addicts (who brought their issue upon themselves, unlike people with fertility issues) Inequalities in current practice same sex parents are not allowed free rounds of IVF in Kent it should either be included for all or excluded for all. Currently it is not fair It is also not included if one of the couple has had a child with another before! Because another woman became pregnant I couldn t! I think it s extremely unfair for any couple, regardless of age, nationality or sexual orientation to have to be piling on that amount of pressure for it to be right the first time Postcode lottery It is defo postcode lottery as I was not in Kent when I went through IVF and I only got what they propose to reduce to Need to increase, not decrease cycles I strongly believe should receive 3 on NHS at minimum across world IVF should be increased to at least 3 rounds Suggestions were made for either increasing or moving funding: We are all living longer than we used to. And cancer treatments are expensive. Are people prepared to pay an extra 1 or 2% in income tax to fund the NHS to get closer to meeting the needs of the population? Tbh if the money can be used to save a life then I would think that s better. I know a kiddy who had to go to America for treatment, just to stay alive So if you take funding away from this, will you move it over to all the poor cancer patients who can t get medication because its too expensive in this country? More detailed breakdown can be found at Appendix D Public event 19

20 A public meeting advertised through stakeholders, on the CCG website and through social media - was held in Gillingham on 13 th June. Nine people attended, together with members of the CCG commissioning and engagement teams and an independent facilitator. Review of IVF services, alongside other health services in Medway There was general agreement that IVF services should be reviewed alongside other services. However, participants wanted more clarity around the process for selecting IVF: Ultimately you come back to are we offering the best thing, I don t think a review in itself is bad. Everything should be subject to a review in an organisation that spends public money, but it is not necessarily about taking away Just so long as everything gets its fair turn to be reviewed Participants reiterated that the CCG needed to be clearer about why this change was being proposed the need to save money was understood but the exact rationale for selecting a reduction in IVF services was not entirely evident. Any consultation in the future would have to provide more information on: Which other services had been reviewed Whether this change is entirely around saving money or around emphasising quality of care and good outcomes for patients What was being done to develop the service for example, making more use of technology Is there anything else the NHS can do with IVF to save money, other than taking away an IVF cycle? Participants suggested the CCG consider possible financial savings and improvements to fertility services, including: Revisiting the criteria for receiving funded IVF for example, age Looking at whether the CCG is getting the best value for money from the service Looking at whether there should be a single nationally set tariff for IVF funding Seeing IVF in terms of changing social values what was acceptable in previous years may no longer be acceptable Costs and parity There was a discussion around access to fertility services for same sex couples. It was also noted that same sex couples would only find out that they might have a fertility problem once they were trying for IVF creating a further inequality. The issue of costs of using donated genetic materials was also raised would this not cause so many additional costs that the savings from an IVF cycle reduction would be wiped out? Participants questioned the exact figures around predictions on savings. 20

21 We re talking about sixty couples. So 100K is roughly 1k per person the total saving is a lot yes but cost per person is not a lot. Participants also questioned whether costs would reduce in the future, as IVF becomes more effective. People had different views about whether the cost of 3,700 per cycle was a lot it was also pointed out that this would be higher for those having to go to private provision. The CCGs in Kent and Medway needed to be clear about the cost implications for couples having to find the money for a second cycle. the cost of raising a child is more than 4,000 but the cost of IVF is a lump sum which you might not plan on that s on top of raising a child For many people the additional costs would be too much and they would not be able to have children as a result. For some this is devastating One participant reminded us of the emotional and physical pressures of going through IVF the process can itself cause many problems. Postcode Lottery It was questioned whether ultimately each of the eight CCGs may make different decisions, as a result of what they hear from local people, when there should be consistency across Kent and Medway. Do we have evidence of people moving to Medway because there are more cycles [available on the NHS]? Reducing the number of funded IVF Cycles People had mixed views on whether their family and friends would be for or against this proposal. It was pointed out that this was affecting those not yet born if the alternative is to take funding away from those in hospital, or those needing hip replacements people might think this would be a better area of saving. There was also an agreement that expectations about payments and funding were changing people were generally getting used to having to pay for more health services themselves. Ten years ago, couples considering IVF would expect to have this on the NHS, whereas now there would be a degree of resignation that they would have to start saving for this. There was general agreement that adoption should be considered as more of an option one elected official spoke about sitting on an adoption panel in Medway and how much joy adoption brought to families and to children. 21

22 However, when asked, the members of the public and elected officials present did not think that funding for IVF should be reduced. it s about the emotional effects for couples it s not fair Is fertility treatment a bit of an easy target? If this was about reducing chemo, the doors would be bursting at the seams People asked the CCG to think about those living on lower incomes whose chances of having children would be significantly reduced by this measure GP Practices Protected Learning Time Over 60 GPs and practice managers attended the Protected Learning Time meeting on 21 st June. They were shown a presentation on IVF and there was then a general discussion and questions session. The key views and suggestions expressed by participants included: The decision should be made across the whole of Kent - Medway CCG should not go for a separate decision. Should we consider 0 cycles? How would the savings be used? What public engagement has the CCG done on this? Is this the right time to make decisions (in line with more government funding being promised)? Why choose fertility service to review (for savings)? Could we save money by reviewing the drugs used? This service is an add-on to core health This service is addressing infertility - that is a disease and we shouldn t ration treatment, as we don t for other diseases Participants were then asked to raise their hand if they agreed with the following questions: Should we review every service to see if we can save money? The majority of participants raised their hands Should we review IVF service? Roughly half of the participants raised their hands Should we reduce from 2 to 1 IVF cycles? Only 2 participants raised their hands Should we reduce from 2 to 0 IVF cycles? Only 1 hand was raised PEA: June