On Thursday 1st November 2017, I was delighted to be invited to speak at the Fertility Network UK event Politics in Fertility hosted by Paula Sheriff MP at the House of Commons. You can read what I said here.
It was most valuable for me as an opportunity to hear the myths around fertility and IVF treatments debunked. It won’t surprise you to learn of course that a lot of the problems associated with lack of access to treatments would be markedly improved with a prescription of “common sense”, better communication and a societal shift in attitude to infertility – understanding it as a disease and not a lifestyle choice.
Here’s some of what I learned (and said):
- Infertility or subfertility is very common – Geeta Nargund – Director of Create Fertility Clinics shared that infertility is the second most common reason for women to visit their GP. The second most common reason. Infertility is no respecter of class, ethnicity, financial background, disability, sexuality or gender. 1 in 6 heterosexual couples will report a problem with conception. Same sex couples and single people increasingly want to take on the responsibility and joys of parenthood. The provision of IVF in the UK is going backwards, and it’s significantly behind other EU states. (Yes Brexit kicks in here too).
- An understanding of Quality & Intelligent Commissioning is required – Peter Thomson the Chair of HFEA kicked off proceedings by stating that there is no agreed pricing or understanding of good value in IVF procurement. Clinical Commissioning Groups are often not getting the best value deals, the best quality treatments (due to lack of consistent advice) from top providers and are paying over the odds. There is a group think that this treatment is expensive and elective.
- Inconsistency in understanding of what a full cycle is: Sarah Norcross, Director of Progress Educational Trust and Trustee of Fertility Fairness reminded us that CCGs apply different understanding of what a cycle is. 58% of CCGs are not correctly defining a cycle. 61% are offering just one and not 3 cycles as recommended – some are offering none at all. Because of the perceived costs (see point 1) they baulk at offering up to 3 cycles on the NHS when in fact the likelihood for most people is that they won’t need 3 full cycles. Currently for women under 40, a successful pregnancy is achieved for 27% of patients at the first attempt, rising to 40% after the first transfer from frozen embryos…. Few people need to go through to 3 cycles.
- Unnecessary Treatments – Tarek El-Toukley an IVF consultant at Guy’s and St Thomas’ Hospital spoke from the floor about how GPs and consultants in fertility treatment are sending mostly women for unnecessary and expensive interventions which can equate to as much cost as an IVF cycle, to no benefit to the patients.
Alongside these financial costs which are coming from the CCG budget, let me say that I – and several other women present – who’ve been through these tests and procedures, can tell you the physical and psychological costs are also enormous and long-lasting.
5. Community Consulting is being ignored and there is little public accountability – an activist from Fair Fertility shared how one CCG – let’s call it Croydon because that’s its name, consulted their community: who voted to keep IVF available on the NHS – but the CCG ignored that feedback and have cut all cycles on the NHS. To find out if your CCG is considering making a cut as many of them up and down the country are (but not in Scotland where the NHS is offering the Gold Standard) put in a FOI – this makes them react.
6. There is no consistent male patient pathway – I remember this well. Fertility and Infertility is viewed through a gendered lens. Whole consultations would take place and my husband’s existence was not acknowledged. TOP TIP– we used this rudeness to our advantage. He took great notes and asked the best questions. We worked as a team where I took the emotional punches and indignities and he worked on team logistics. For much of our fertility journey, we were on a “miscarriage pathway” so he was checked in that regard but for many patients this is not the case as a first thought. A lot of unnecessary treatment, time wasting and distress can be avoided if there is a consistent and compassionate treatment path for all genders in fertility treatment.
Same sex couples are facing double discriminations and inconsistencies.
7. Language matters – two young women diagnosed with PCOS were told it as if they’d just been told they’d caught a cold – “ go and google it” (I’ll write another blog about the callous language male doctors used around my miscarriages)
8. The unfair ability of CCGs to ignore NICE guidelines is not illegal because they are only guidelines not law. Whilst the room agreed that the situation could be fixed with a directive to make the Gold Standard a national policy, as it is in Scotland, the direction of travel is to make all priorities local and in the hands of unelected CCGs consisting of people who aren’t all clinical experts.
9.The mental health costs associated with infertility are left out of the equation, yet again.
10.Writing a personal heartfelt letter to your MP can help.
11. When there’s a Women’s Equality Party representative in the room everyone says “Equality” a lot more often – let’s make them put their action where their mouth is.
12.The taboo around infertility and miscarriage needs to rooted out of the system to get public opinion, the media and politicians on side.
13.Cutting IVF cycles is a false economy and is dangerous for women: The cutting of IVF on the NHS and the private costs in the UK are sending couples abroad where controls are fewer, and riskier multiple pregnancies result more often. Multiple pregnancies are riskier to the woman and cost the NHS more than an IVF cycle would have done.
14. There are societal barriers preventing people accessing treatment in time and we need to educate children and employers about how fertility fits in reproductive life and make space for it in HR policies.
15. The cost benefit analysis of IVF is flawed and the breadth of experience in the room illustrated that there is a potential for a joined up Fertility Pathway embracing all genders and all the intersections which might contribute to infertility and subfertility.
16. Pressure on parliament is important but will take time that many people don’t have. Lobbying your CCG can have an impact.
Actions you can take:
- Join WEP Lewisham and help us lobby Lewisham’s CCG to increase their provision from 1 to 3 full cycles as defined by NICE
- Support the work of Fertility Fairness and write to your MP and your local Councillors (templates here but personalised is better)
- Find out more from the Fertility Network UK (they also have great resources if you need support) and sign their pledge to support The Gold Standard IVF.
- Eliminate the taboo – talk to your children about how families are made and how and why some people do not have children whether that’s by choice or accident. If you’re not confident about the sensitivities around infertility, miscarriage and childlessness, read up, find out.
- This blog by Jessica Hepburn is a good place to start
- as is the resource at Verity
- It’s not a women’s issue – Scantily Dad a blog about infertility from the male perspective
- Put in an FOI about what your CCG has decided and why, how many cycles they have had to pay for, and how much.