Can you help to stop fertility services being cut in Beds?

ivf_science-300x168The group who commission health services in Bedfordshire are consulting on whether to cut NHS fertility services entirely. It’s really important that patients should complete the consultation questionnaire if you want to help to try to stop this happening. The questionnaire needs to be filled in before July 24 and you can find the consultation here https://www.bedfordshireccg.nhs.uk/page/?id=4958

If you live in the area, do write to your local MP too and ask them to help prevent fertility care being cut altogether in the area. There is more information on the Fertility Fairness website and relevant contact details are
Richard Fuller MP (Bedford) richard.fuller.mp@parliament.uk
Rt Hon Alistair Burt MP (North East Bedfordshire) alistair.burt.mp@parliament.uk / nebca@northeastbedsconservatives.com
Nadine Dorries MP (Mid Bedfordshire) dorriesn@parliament.uk
Andrew Selous MP (South West Bedfordshire) andrew.selous.mp@parliament.uk

Tower Hamlets Health Fair

I spent a lovely morning at a health fair in London’s Tower Hamlets this morning, organised by the team at City Gateway Women’s Project. I had a stand for Infertility Network UK, and there were a range of other charities and organisations from the local police force and fire brigade, local support networks and even an environmental group running a seed exchange. There was healthy food on offer, Bollywood and Brazilian dance sessions and you could use an exercise bike to power a blender to make yourself a smoothie!

It’s such a great idea to bring together women from the local community to learn more about healthy living, and it made me realise how unsupported some of these groups of women are when it comes to fertility. Many of the women I spoke to hadn’t received the level of care that most of us would expect from the NHS even at the early stages of fertiilty investigations – and it wasn’t something they found very easy to talk about.

It made me realise how much difference it can make if you understand how to navigate the system, know when to complain or make a fuss and who to – it’s easy to underestimate how important this is, and how unfair our system can be to those who most need help and support.

What was impressive though was the work going on at the project, the warm and friendly atmosphere and the range of activities and support systems in place – I left feeling quite inspired!

Is fertility funding set to get even more confusing?

Whether or not you might qualify for NHS funding for fertility treatment is one of the most confusing aspects of the entire process for many people.  I’m forever seeing posts on fertility forums asking whether people might be eligible for NHS treatment in certain circumstances – if their partner already has a child, if they need ICSI, if they are overweight, if they are 39…  There is no one answer to these questions, as it depends entirely on where you live – and that situation could be about to get far more complicated.

Until now, decisions about funding for fertility treatment were made by primary care trusts – so although the situation might not be the same throughout the country, at least people living in fairly wide areas would find that their options were the same.  Now, under the government’s changes to the NHS, funding decisions about fertility treatment are being made at a more local level, by clinical commissioning groups.  This means that there is room for far more divergence in what is offered within regions and across the country as a whole.

The NICE guideline makes it very clear what ought to be offered, but we have yet to see what the consequences of these changes to the NHS structure will mean for fertility patients – at the moment, it certainly doesn’t look as if things are likely to get easier…

 

IVF for prisoners?

What do you think about people in prisons having access to fertility treatment?  It seems that the Justice Secretary Chris Grayling is determined to stop prisoners getting IVF in future. The European Court of Human Rights had ruled that stopping people who were in prison having IVF treatment was a breach of their right to a private and family life, but Grayling says he’s going to review UK policy with the intention of banning IVF for prison inmates.  Of course, the story caused a lot of excitement in the Daily Mail, but reading the story carefully it appears that only 13 prisoners have applied to have IVF since 2007 anyway with just one application being approved.

I can’t help feeling that stories like this often detract from the realities of the situation in the UK – whipping those who “don’t agree” with fertility treatment up into a fury of self-righteousness; you can already hear the arguments about money that ought to be spent on cancer drugs going to pay for criminals in prisons to have test tube babies, which is then used as a reason not to fund any IVF treatment for anyone at all anywhere in the UK…

I think it’s vital to keep reminding people that infertility is an illness not some kind of lifestyle choice – and that offering medical treatment for an illness is not a luxury that we can’t afford, but just part of a rounded national health system.

My day explaining what the new NICE guideline really says…

I had a busy day yesterday doing interviews about the new NICE fertility guideline as I’d been a lay members on the group that helped to develop it. One of the most fascinating things about doing so many interviews (I think it was 21 by the end of the day!) was seeing how differently journalists covered the story.  There were some who had made the effort to read the press release and relevant parts of the guideline, some who had even done a little additional research – but others who were clearly relying more on other journalist’s headlines than anything else…

One of the main misunderstandings was around the raising of the age limit to include some women aged 40-42.  There was a general assumption that this meant that women aged 40-42 would qualify for exactly the same treatment as younger women, and that it applied to all women in this age group.  What the guideline actually says is that women of this age should be offered one full cycle of IVF (rather than the three full cycles offered to younger women) if they have been trying to conceive for two years or more, if they have not had any previous treatment and if they have a good ovarian reserve – so in reality, this is a fairly small group of women.

The other main topic of fascination to many journalists was the idea that same sex couples should be offered IVF.  This was heralded not only as some totally new idea, but was often covered as if treatment was going to be offered to same sex couples who couldn’t get pregnant purely because they had a partner of the same sex.  Again this is not the case.  Women who have been unsuccessful after twelve cycles of artificial insemination (of which at least six must be IUI) will now qualify. So, this is infertile women who happen to be in same sex relationships – not women who can’t get pregnant because they are lesbians.  The idea that this is totally new is not true either as infertile women who are in same sex relationships are already getting NHS treatment in some areas.

The most bizarre thing I came across yesterday was a local radio presenter who started talking about “gay men with HIV” being offered IVF under the new guideline – clearly one of those who hadn’t found time for any reading…  IVF is not going to do much to help two men to have a child – they need a surrogate, and surrogacy was not within the scope of this guideline.

When it comes to HIV, the guideline does not suggest that IVF would be the most appropriate treatment for a couple where the man is HIV positive.  What it says is that couples where the male partner is HIV positive should be informed that the risk of HIV transmission to the female partner through unprotected intercourse is negligible where certain stringent criteria around antiretroviral therapy and plasma viral load are met (see the guideline for full details on this). In such cases, it is suggested that unprotected intercourse limited to the time of ovulation would be most effective – so, where the male partner is HIV positive, it’s more a matter of suggesting that fertility treatment may not be necessary at all…

Much was made of the additional costs to the NHS of following the guideline, and little of the fact that there are a number of areas where less money will be spent – particularly on IUI for for people with unexplained infertility, mild endometriosis or mild male factor infertility.  New research has shown that IUI not a clinically effective treatment for these people, so now they will move forward more quickly to IVF instead – allowing them access to a more effective treatment.

Of course, there were the inevitable questions about whether the stretched NHS can afford to treat infertile couples at all – but one of the most important things to me about this guideline is that it recognises throughout that infertility is a hugely distressing and difficult medical condition – and sets out the most appropriate treatment for that condition.  Infertility is so often described as a “lifestyle choice” – I’ve never understood why it suddenly becomes a matter of “lifestyle” when it’s your ovaries or sperm which aren’t working rather than any other part of your body…

I believe the guideline helps all of us who know how horrible it is to live with infertility, how distressing it can be and how much access to treatment can help – and now it is a matter of persuading commissioners to follow it to ensure that people with fertility problems receive the most effective treatment at the right time.

For more detail about the new NICE fertility guideline, go to www.nice.org.uk