A range of issues were explored during these evidence sessions including: The equity of access to fertility treatment across NHS boards.

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1 Health and Sport Committee T3.60 The Scottish Parliament Edinburgh EH99 1SP Tel: April 2015 Dear Fertility Treatment The Health and Sport Committee has been scrutinising the provision of fertility treatment by NHS boards. The Committee would like to provide all NHS boards with an opportunity to provide written views on this issue if it wishes. The Committee held two oral evidence sessions on 24 March 2015 and 31 March At these sessions the Committee took evidence from representatives from: Infertility Network Scotland, Fertility Fairness, NHS Tayside, NHS Grampian, NHS Lothian and NHS Greater Glasgow and Clyde. A range of issues were explored during these evidence sessions including: The equity of access to fertility treatment across NHS boards. The capacity to move to the provision of three cycles of IVF on the NHS. The impact on service capacity if changes were made to the current criteria for fertility treatment, including the criteria which exclude couples where one of the partners has a child living with them in the home. Waiting times for counselling services. The use of positive terminology such as fertility services or assisted conception by NHS services. Attached are links to the Official Reports of the evidence sessions:

2 The Committee would like to invite you to provide any written comments on these evidence sessions if you feel there are relevant issues that have not been covered or points you wish to add. If you do wish to make a written submission it would be much appreciated if this could be provided to the Committee by Thursday 30 April, to the addresses listed above. If you require any further information regarding this request please do not hesitate to contact me. Yours sincerely, Rebecca Macfie Senior Assistant Clerk Health and Sport Committee

3 Dear Ms Macfie NHS Ayrshire and Arran Thank you for your letter of 9 th April 2015 with regard to the provision of fertility treatment and the opportunity to provide comments. Following consultation with Dr David Rae, Consultant Obstetrician and Gynaecologist / Clinical Director, and Dr Santanu Acharya, Consultant Obstetrician and Gynaecologist who is the clinical lead for fertility services within NHS Ayrshire and Arran, I am able to provide the following comments from NHS Ayrshire and Arran. Currently the criteria adopted in Scotland are uniform in all Health Boards, and NHS Ayrshire and Arran complies with the current recommendations. With regard to the issues explored during the oral sessions held on the 24 th and 31 st March 2015: The equity of access to fertility treatment across NHS boards. Currently NHS Ayrshire and Arran meets all the criteria set out by the National Infertility Group (NIG) Scotland. The capacity to move to the provision of three cycles of IVF on the NHS Currently the number of cycles is agreed nationally and also by the tertiary centre, in our case GRI ACS Unit. The general opinion is that couples should be offered three cycles instead of two as at present. If there was an increase to 3 cycles, additional capacity would be required and this would need to be explored with the tertiary centre. However this would come at a cost, possibly 20% additional and would also have effect on current ability to meet the 12 month standard. An increase in offering three cycles may not however impact significantly in relation to funding, as the numbers would be small. Prior to implementation of the recommendations of NIG, NHS Ayrshire and Arran funded 3 cycles. The impact on service capacity if changes were made to the current criteria for fertility treatment, including the criteria which exclude couples where one of the partners has a child living with them in the home There is general agreement in NHS Ayrshire & Arran that the current rule is unfair and discriminates against parents who have custody of a child post relative break up. There would however be an impact on service capacity if changes were made to the current criteria for fertility treatment, including the criteria that exclude couples where one of the partners has a child living with them in the home. In response to demand from same sex couples NHS Ayrshire and Arran purchases sperm from the European bank (through NHS Greater Glasgow & Clyde). This is currently used for both same sex couples and

4 male infertility. It was paid from UNPACS initially and absorbed into the maternity budget. However, demand is high and there are pressures on the budget. A Human Fertilisation and Embriology Authority (HFEA) meeting is arranged for the 1 st May 2015 and as part of the agenda it will be discussed whether to continue / allow only for same sex or withdraw the service. Waiting times for counselling services Within NHS Ayrshire and Arran the Ayrshire Fertility Unit (AFU) only performs partner intra uterine insemination (IUI) and I am advised that we are not required to provide mandatory counselling services. However, Dr Young, Specialty Doctor, and Staff Nurse Arnott, Assisted Conception Nurse, are the named contacts and develop a personal relationship with couples to ensure that they are supported. The AFU conducts an annual satisfaction survey which reports high levels of satisfaction. In addition the unit also provides a monthly evening drop-in session where Gwenda Burns, Infertility Network (UK), is present to provide and offer further support. While these are helpful counselling options, we do not have a professional counsellor for this service. NHS Ayrshire and Arran patients attending GRI ACS for services do have access to their counselling service. The use of positive terminology such as fertility services or assisted conception by NHS services Within NHS Ayrshire and Arran, the name of the unit has been changed from IUI centre to Ayrshire Fertility Unit. This is approved by (HFEA) and the unit is also recognised now as a training centre by British Fertility Society. I can also advise that any correspondence which is sent to the General Practitioner is also sent to couples. This involved the use of the terminology sub-fertility instead of infertility, as recognised best practice. Kind regards Liz Liz Moore Director of Acute Services NHS Ayrshire and Arran University Hospital Ayr

5 Fife NHS Board Hayfield House Hayfield Road Kirkcaldy Fife KY2 5AH Rebecca Macfie Date 21 April 2015 Senior Assistant Clerk Your Ref Health and Sport Committee Our Ref BM/LW/VM/letters/0421macfie The Scottish Parliament Edinburgh EH99 1SP Dear Ms Macfie Fertility Treatment Thank you for your letter of 9 April NHS Fife welcomes the National Infertility Group Report and the introduction of uniform criteria across Scotland, as well as additional Scottish Government investment. A critical point is definition of a cycle of treatment. Previously this was applied to each embryo transfer, and this is no longer the case. However, commonly quoted research evidence does use this definition. The ongoing data collection work as part of the National Infertility Group will give up to date evidence on cycles and embryo transfers. Changing the no child in the home criteria to one partner has no biological child would reduce the current inequity in relation to existing children. Any decisions on changes to criteria need to be made with knowledge of the likely funding impact on fertility and other services. Preventive recommendations also need to be stronger to reduce the need for fertility services in the longer term. This includes lifestyle factors such as smoking, obesity, and alcohol. I hope the above comments are helpful. Yours sincerely Dr Brian Montgomery Interim Chief Executive Chair Allan Burns Interim Chief Executive Dr Brian Montgomery Fife NHS Board is the common name of Fife Health Board

6 NHS Lothian submission on Fertility Services April 2015 Topic The equity of access to fertility treatment across NHS boards. The capacity to move to the provision of three cycles of IVF on the NHS. The impact on service capacity if changes were made to the current criteria for fertility treatment, including the criteria which exclude couples where one of the partners has a child living with them in the home. Waiting times for counselling services. The use of positive terminology such as fertility services or assisted conception by NHS services. response In common with other NHS funded units across Scotland, and in line with the 2013 national guidance and Chief Executive Letter, we currently provide couples with two full cycles of IVF (where a full cycle is ovarian stimulation, fresh embryo and subsequent frozen embryos). We also comply with the requirements for couples accessing IVF for the first time where the female partner is between 40 and 42 years old. As regards wider criteria, we share Dr Simpson's concern about the 'child in the home' criterion. This is being considered by the National Infertility Group. Please also see full written briefing submitted in advance of the Sport and Health Committee on 31 March. We are currently meeting the requirements of the national guidance (2 full cycles) within a waiting time of 1 year. While it is predicted that only a minority of couples would be eligible for, and request, a third cycle, this would have an impact on capacity. The extent is being studied through the National Infertility Group. Even if 5-10% of couples were eligible for a 3 rd full cycle we would relatively quickly accumulate a longer waiting list with current resources, and this would delay treatment for other couples and have a negative impact on outcomes for these couples. We do not have information to estimate the impact on the service. That is being looked at by the National Infertility Group. It is clear, however, that a change in the child at home criterion would have a very considerable impact on capacity, would require very careful planning and additional resource. We offer counselling to all couples on accessing the service, and throughout their treatment. Waiting time for this service is currently 3-4 weeks. Our centre is called the Edinburgh Fertility and Reproductive Endocrine Centre, encompassing this positive terminology. This name was adopted 10 years ago, with the move to Little France.

7 Headquarters Executive Office Gyle Square 1 South Gyle Crescent EDINBURGH EH12 9EB Duncan McNeil MSP Convener Health and Sport Committee The Scottish Parliament Edinburgh EH99 1SP Date 26 th March 2015 Your Ref Our Ref IFC//lm/ healthandsport@scottish.parliament.uk Dear Mr McNeil National Infertility Group I understand the Health and Sport Committee is considering Fertility Treatment, and has held one evidence session on the topic, with evidence from Infertility Network and Fertility Fairness, with a further evidence session to be held on Tuesday 31 March, with evidence from the four tertiary centres providing NHS IVF in Scotland. The reconvened expert National Infertility Group met on Tuesday 24 March and agreed to write to the Health and Sport Committee, to set out the current work of the Group. I have arranged for copies of the National Infertility Group s report to be sent to you, for information and further context. The final access criteria recommendations are set out at 9.4 of the report, on page 38, and include the recommendation that eligible patients may be offered up to two cycles of IVF/ICSI where there is a reasonable expectation of a live birth. Phasing in of further criteria is discussed at 9.5 and this sets out that the Group recommended a review in 2015 to reflect on the implementation of the access criteria changes, emerging clinical evidence in light of new treatment pathways, and also to consider the recurring service cost, before any further criteria, including a third cycle of treatment are implemented. In short, although the Group did aspire to 3 full cycles, it did not agree that Boards should start to offer a third cycle once waiting times reduced to 12 months; instead, the Group recommended that a review should first look at the cost, capacity and effect on the service. The Group has now met twice to start the review. Whilst the Group s 2013 report did state that an earlier review should be considered if waiting times reduced to 12 months across Scotland, the biggest health board in Scotland has only very recently announced that waiting times are now at 12 months. The National Infertility Group report states at paragraph 197: Chair Chief Executive Professor Elizabeth Ireland Ian Crichton

8 The Group is keen to introduce the following criteria, when affordable and suggests the 2015 review proposes a timescale for further reassessment. The recommended next step would be adoption by all NHS Boards of: Eligible patients may be offered up to three cycles of IVF/ICSI where there is a reasonable expectation of a live birth One partner has no genetic child as long as all further criteria are met by both partners. Currently the criterion that there should be no child in the home, as outlined in EAGISS, stands. The Group clearly recognises the importance of taking decisions on any further criteria introductions at national level to ensure that equity is retained across Scotland as services are expanded. You may already know that the Scottish Government has invested 12 million, over the past 3 years, to ensure equity of access to IVF treatment. The Group is, of course, interested in patient outcomes, including ensuring that this fits with safe, person centred, and effective treatment. Specific areas of interest to the Group include: 1. Confirmation that the Group s recommendations are fully implemented, 2. Understanding of improvement in the live pregnancy rate, 3. Understanding the health impact on mothers and any children born as a result of IVF, 4. Recurring cost of the current service and therefore the sustainability of the position; and 5. Work is also being carried out on proposals for a national strategy for gamete donation and fertility preservation. We expect to see a trend of improvement. As you know, these procedures are invasive, the process highly emotional for the patients, and our recommendations, especially the inclusion of frozen embryos, as well as fresh in a cycle (which gives many patients far more than 2 attempts at pregnancy), should mean that outcomes have materially improved. The numbers, cost and effect of frozen transfers are something the group needs to understand better. The data set out in the National Infertility Group s 2013 report is from 2010, and is now out of date. Further information gathering is underway to understand the financial and therefore capacity issues on which a change of criteria will impact. The Group is working with Information Services Division to collect data from each tertiary Centre, to best capture the impact of changes made to date, in relation to the efficiency and efficacy of the treatment provided. At this time data is also being collected to assess the impact of changing the number of cycles to 3, to provide approximate numbers to enable forecasting to be undertaken for each Board. The Group needs to understand exactly what the demand for a third cycle would be, and take into account other clinical issues which influence the overall picture, such as extended embryo culture, single embryo transfer and embryo freezing. The data collection regarding changing the criteria to provide access to couples where one partner has no genetic child, is proving to be very challenging as this data is not collected through any national means. It may be that the group will have to undertake a bigger piece of work on this area or put in place mechanisms to collect the data.

9 The National Infertility Group expects to report to Scottish Government Ministers by the end of I hope this is helpful in setting the scene of past and continuing work of the National Infertility Group. Please let me know if you would like any further information. Yours sincerely IAN CRICHTON Chair of the National Infertility Group Chief Executive NHS National Services Scotland

10 Rebecca Macfie Senior Assistant Clerk Health & Sport Committee The Scottish Parliament Edinburgh EH99 1SP Date 26 May 2015 Your Ref Our Ref LMcL/CG/jp 1304 Macfie Dear Rebecca Fertility Treatment Thank you for your letter of 5 April We are aware of the evidence submitted at the recent meetings of the Health and Sports Committee. NHS Tayside had a representative at the session on 31 st March and also has representation on the National Infertility Group. Equity of access - as a result of implementing the eligibility criteria recommended by the National Infertility Group and increased funding from the Scottish Government, we are pleased that equity of access to fertility treatment across Scotland has now been achieved. In addition, all health boards now meet the HEAT target of commencing treatment within 12 months of referral for assisted conception treatment. Changes to criteria - the National Infertility Group recommended that a review be carried out after March 2015 to reflect on the implementation of the access criteria changes since 2013 and to consider the recurring cost, capacity and effect on the service before further criteria, including a third cycle and couples where one partner has no genetic child, are implemented. That review has now started; each provider centre will be liaising with ISD to gather data which will assess the impact of changing to three cycles. As stated in the National Infertility Group report Response to treatment must be clinically assessed at the end of each cycle. Where indications are that treatment is unlikely to be clinically effective, no further treatment will be given. A third cycle would not be offered to every couple, but only where there is a reasonable expectation of a live birth. We are aware that there have been significant changes in practice since the last review was carried out, including day five transfers and an increase in the incidence of single embryo transfers and all of this information will be taken into account. It is difficult to assess the impact of including couples where one partner has no genetic child as these couples are often not referred to the service; work is being carried out to collect data from secondary fertility centres to assist with this. If this criterion is included, this will potentially have long term consequences on staffing resources and waiting times if no additional funding is provided. Counselling services NHS Tayside provides a counselling service to couples before, during and following treatment. All patients considering treatment using donated gametes or embryos, and potential donors, are expected to attend for implications counselling. The number of counselling hours provided was increased in 2013 to cope with demand and waiting times are closely monitored. Everyone has the best care experience possible Headquarters: Ninewells Hospital & Medical School, Dundee, DD1 9SY (for mail) DD2 1UB (for Sat Nav) Chairman, Mr Sandy Watson OBE DL Chief Executive, Ms Lesley McLay

11 Current waiting times are at the maximum appropriate level therefore any increase in demand would have an impact on the service. Timescale due to previous experience of the complex nature of implementing criteria change and gathering appropriate data, it is predicted that any changes would not come into effect before April Positive terminology - NHS Tayside s service is referred to as assisted conception. However, we are aware that appointments to the level II service refer to the infertility clinic and steps are being taken to change this to fertility clinic. Yours sincerely Lesley McLay Chief Executive