I awoke early on Saturday morning and checked the news, eager to find out what progress had been made with the Women's Health Strategy for England. On Friday afternoon, I had seen the UK Government's press release – embargoed until the following day – which promised 'Greater IVF transparency through an accessible new tool on GOV.UK to allow people to look up information about NHS-funded IVF treatment in their area'.
This seemed promising, one year after the Government had said in its Strategy that it was 'committed to greater transparency of the provision of IVF services across the country and will therefore explore mechanisms to publish data nationally on provision and availability of IVF'. I was keen to see how this 'accessible new tool' worked, and to compare the Government's data with the data that the Progress Educational Trust (PET) had gathered about IVF provision earlier in July.
England expects that every ICB will do its duty...
When I found the relevant webpage and started reading, my heart started to sink. The webpage says that 'we' – presumably meaning the Government, but who knows? – expect Integrated Care Boards (ICBs) 'to commission fertility services in line with National Institute for Health and Care Excellence (NICE) guidelines for assessment and treatment of fertility problems, ensuring equal access to fertility treatment across England'.
The NICE Fertility Guideline (someone should point out to the Government that there is only one) will be 20 years old next year, and – as discussed extensively here – has never, in all that time, been fully implemented in England. There have been numerous ministerial statements over the years urging commissioners to do better, all to no avail. So why should change be expected this time?
What about the data?
The data presented on the Government webpage is incomplete. Ten out of 42 ICBs – almost a quarter – are completely omitted from the data, as their policies are 'under review'. As ICBs are under no obligation to carry out reviews by a particular deadline, this data could be missing for years, as the review process grinds on.
Furthermore, the Government has failed to gather vital information from the remaining 32 ICBs. Where these ICBs do not provide full cycles of IVF as defined by NICE – that is, one episode of ovarian stimulation and the transfer of any resultant fresh and frozen embryos – the Government has failed to indicate how many embryo transfers these ICBs do provide.
This is vital information for patients, and is an area where we see wide variation. In the data that PET gathered this month, from the 40 ICBs that have published policies, only 15 out of these 40 ICBs have policies that comply with the NICE definition of a 'full' cycle of IVF. Our data shows that instead of complying with this definition, the majority of ICBs have instead chosen to redefine what constitutes a cycle of IVF. One ICB, for example, offers just one fresh embryo transfer.
The Government webpage states: 'Not all access criteria has been included, so you should refer to the individual ICB policy for the most accurate information.' This is easier said than done. ICB policy documents can be hard to find, do not follow a standardised format, and can be complex and difficult to interpret. Here at PET, we often struggle to make sense of them.
Doctors have similar trouble. At last week's PET event 'The Women's Health Strategy, One Year On' (see BioNews 1199), the chair of the British Fertility Society – Dr Raj Mathur – said that he and other fertility doctors found some ICB policy documents incomprehensible. This may be one of the reasons why – as we found in our recent report The Power of Three IVF Cycles – so many GPs in England have a poor understanding of the IVF provision in their area.
Is it a tool? Will it be updated?
Even if the Government's data was complete, we at PET were still looking forward to being able to explore this data with a new online 'tool'. We thought that perhaps the tool might enable patients to submit their postcode, and then be given information – if any was available – about the policy in their area.
No such luck. What the Government has actually presented on its webpage – and has failed to format in a way that can easily be read online – is not a tool, but a simple and static spreadsheet. If you do not know which ICB you fall under, then you are signposted to another Government webpage, which simply lists England's ICBs and links to each one. Then it's up to you to trawl through them.
Having been involved in collecting and examining fertility commissioning data for more than a decade, PET knows that such data needs to be updated regularly, if it is to be useful and remain in any way accurate. But there is no commitment on the Government webpage to update the information, nor is any review date for the data provided. The webpage simply contains a rather forlorn request for ICBs to please get in touch by email, if there has been a change to their policy.
This is hardly adequate. If the Government wishes to gather this data and present it in a useful way, it should impose an actual obligation on ICBs to submit policy updates, and it should also require ICBs to present their policies in a standardised and comprehensible format.
What use is this to women?
This tool, such as it is, represents the only Government commitment to helping fertility patients that has supposedly been 'completed' by the end of the first year of the Women's Health Strategy. But what does this actually do for women? At best, this data may provide some women – those fortunate enough to live under ICBs whose policies are comprehensible and not 'under review' – with a clearer picture of what is (or is not) available in their area. But this does nothing to help women access fertility treatment, or to increase the provision of fertility treatment in their area.
The Telegraph newspaper has taken a more optimistic view, reporting that with this tool, 'Women will be able to find out about available IVF slots across England in a bid to cut waiting times'. Apparently, this will 'empower women to demand that their doctor commissions quicker treatment from a different part of the country, thereby cutting out unnecessary waits'. PET has no idea how this could possibly work in practice.
In any case, it is not exactly 'empowering' to have to demand a treatment that has been recommended by NICE for two decades. What would be more empowering, would be to ensure that women – and indeed men – could access the treatment that NICE recommends as a matter of course.
What next?
The Government deserves criticism for this situation, but it is also worth asking what NHS England – a non-departmental public body – has done to implement the fertility-related parts of the Women's Health Strategy. Nothing is likely to change unless and until concerted efforts are made by NHS England.
Meanwhile, PET's 'Power of Three' campaign is needed more than ever. Find out here how you can get involved, and bring the current situation to the attention of your MP.
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