Submission to Bedfordshire Consultation on IVF Services September We are supported by the following organisations:

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Submission to Bedfordshire Consultation on IVF Services September 2014 We are supported by the following organisations:

Question 1: Please tell us whether you are (please tick one box): * past Member of the public currently accessing fertility services Member of the public who has accessed fertility services in the A relative of someone who is/has received fertility services in the past Member of the public who thinks they may need fertility services in the future An interested member of the public A Bedfordshire GP/Clinician An NHS provider A representative from the voluntary sector Other If other please state Question 2: Are you a Bedfordshire resident? * Question 3: Having read the information provided do you believe that BCCG should be commissioning specialist fertility services (including IVF) for the residents of Bedfordshire? * Fertility Fairness is an umbrella body representing a number of organisations working in the field of infertility from professional bodies to patient support groups. Yes No No Yes No Don't know Question 3a: Please explain your answer to question 3 The decision has been taken on a national level that fertility services and IVF should be funded on the NHS. BCCG should now seek to use the advice of NICE, contained in their Quality Standards and Guidelines, as the base of their fertility commissioning policy. Infertility is a disease as recognised by the World Health Organisation, and as with any other medical condition it is deserving of treatment. The importance of funding fertility treatment is highlighted by the well- recognised and devastating psychological impact the disease can have. Question 4: Which of the three IVF options do you think BCCG should commission in the future? * Option 1 - Access to IVF after three years of unexplained infertility, available to women aged 23-42 years, two full cycles of IVF treatment for women aged 23-39/one full cycle of IVF treatment for women aged 40-42 - 650,000 Option 2 - Access to IVF after three years of unexplained infertility, available to women aged 23-40, two full cycles of IVF treatment - 547,000 Option 3 - Access to IVF after 3 years of unexplained infertility, available to women aged 23-40 years, one full cycle of IVF -

397,000 Question 5: What do you feel is the most important consideration for BCCG when making decisions about the IVF eligibility criteria for the future? Using each number only once, please rank the following in order of importance from 1 (high) to 5 (low). 1 2 3 4 5 Age range Number of cycles Budget Access to the service Other If you chose 'other' as a consideration, please specify what else we should take into consideration: The NICE Guidelines should be the main consideration in all decisions relating to provision and access to the service. BCCG should not substitute their own judgements for those of NICE. NICE is an expert body tasked with balancing clinical effectiveness and cost effectiveness in all areas. NICE has recommended three full cycles of IVF and as such Fertility Fairness strongly urges BCCG not to drop their provision. NICE has been unusually prescriptive in its recommendation on the number of cycles to be provided and there are good evidence- based reasons for this. Three has been demonstrated to be the optimal number of cycles for maximising the chances of a successful pregnancy. Some couples may be placed at an immediate disadvantage if the number of viable embryos produced is low. Some may only yield one viable embryo for transfer. This is just one reason why it is essential that up to three cycles of treatment be provided. Each full cycle should include the subsequent transfer of any stored, frozen embryos, in accordance with the NICE guideline. NICE is also responsible for deciding, from the best evidence, the most appropriate age for access to IVF. NICE has recommended that women up to 40 receive three full cycles of IVF, and that women between 40 and 42 should receive one full cycle. BCCG should follow these recommendations. BCCG should also aim to use the access criteria specified in the NICE guidelines, namely assisted conception after two years of unexplained infertility. As opposed to the three years currently used by the BCCG. Question 6: Please feel free to Fertility Fairness is concerned that BCCG appears to be using the

provide us with any other relevant comments regarding this consultation: Specialist Fertility Services. A discussion paper for the East of England, Clinical Commissioning Groups (2013) to justify cuts to IVF. This paper recommends the provision of only 2 cycles of IVF, and claims significant decreases in success rates after 2 cycles. Fertility Fairness has already been in touch with the chief author of the report to make the following points The NICE Guideline Development Group undertook a review of 492 academic studies on fertility, investigating 38 of these in detail. Four studies were included in the review of factors that predict the outcome of IVF (Leushuis et al., 2009; van Loendersloot et al., 2010; Nelson & Lawlor, 2011; Roberts et al, 2010a). Two of these were systematic reviews (Leushuis et al., 2009; van Loendersloot et al., 2010) and two were recent models (Nelson & Lawlor, 2011; Roberts et al, 2010a). The Group found that the chance of a live birth did decrease with the number of unsuccessful cycles increases, but the most significant drop in success rates was after 4 previous unsuccessful cycles. Direct quote from full NICE guideline (2013): The base case model suggests that 3 cycles of IVF is considered cost effective in women age 39 years and younger with at least 2 years of infertility, who had no chance of conceiving spontaneously. Furthermore, sensitivity analysis suggested that funding 3 full cycles of IVF was cost effective in women age 39 years and younger in circumstances where there was a chance of conceiving spontaneously. The analysis does not provide strong evidence that current recommendations for treatment in women aged 39 years and younger should be changed on cost effectiveness grounds. It supports the existing recommendation of 3 full cycles of IVF for all women eligible for IVF age 39 years and younger and thus the GDG did not feel there was any need to change the recommendation from the 2004 guideline for women in this age category. The academic studies used in the Specialist Fertility Services. A discussion paper for the East of England, Clinical Commissioning Groups (2013) appear to be selective and chosen to support the argument that 2 cycles would be most cost effective than 3. The lead procurer for the region, East and North Hertfordshire CCG has acknowledged the above points and has made the decision to stick with 3 full cycles. Their Board decision can be found here. Fertility Fairness strongly advises Bedfordshire CCG to contact East and North Herts to ask them for their reasoning About you Are you: Male Female What is your age group? Under 18 19-25

26-30 31-39 40-49 50-59 60-69 70+ Do you consider yourself to have a disability? Yes No If yes, please specify the nature of your disability Learning disability Long term mental health condition Physical impairment (mobility) Sensory impairment (sight/hearing) Other long term health condition (e.g diabetes, heart condition) What is your ethnic group? (A) White English/Welsh/Scottish/Northern Irish/British Irish Gypsy or Irish Traveller Any other white background please describe: (B) Mixed/Multiple ethnic group White and Black Caribbean White and Black African White and Asian Any other Mixed/Multiple backgound please specify:

(C) Asian, Asian British Indian Pakistani Bangladeshi Chinese Any other Asian background, please specify: (D) Black/African/Carribean/Black British Caribbean African Any other Black/African/Caribbean background, please specify: (E) Other ethnic group Arab I would prefer not to say Other, please specify What is your religion/belief? No religion Buddhism Christianity Hinduism Islam Judaism Sikhism Other, please specify: What is your sexual orientation? Bisexual Gay Woman Gay Man Heterosexual

If you would like to be informed about the decisions taken, please leave your name and a contact email address and we will be in touch. A final report following the consultation will be published on our website. Name; E- mail address; Fertility Fairness Vicky.whitehead@decideum.com Telephone number (optional); 0207 368 1611 Thank you for taking the time to complete this questionnaire. We will use the information you have provided to help us make decisions on any changes to services. Your responses and comments will be kept anonymous and any personal details, such as names and addresses, will be protected in accordance with the Data Protection Act.