The latest from Bedfordshire

4cell_embryo.tifWhat a sorry state of affairs in Bedfordshire where the CCG was recommended to continue funding one cycle of IVF treatment, but instead delayed making a decision until November. Anyone needing IVF in the region was only ever getting one of the three full cycles recommended as being clinically effective and cost effective by NICE, and their consultation on cutting all IVF had led to the recommendation to continue instead.

A spokeswoman for the Bedfordshire Clinical Commissioning Group told Bedfordshire on Sunday that the evidence base and associated research was “complex”.  It is really not cost effective for the Clinical Commissioning Group to spend time trying to make sense of this when NICE has already looked into this in very great depth making use of the knowledge of some of the country’s leading experts in the field and also using skilled health economists to work out what would be most cost effective. Let’s hope that Bedfordshire CCG use this evidence when they make their decision in November, and rather than considering cutting the one cycle they currently offer, instead start funding what NICE recommends.

The only way is NOT Essex says fertility campaign group

ivf_science-300x168The campaign group Fertility Fairness has warned that the only way is certainly NOT Essex as North East Essex Clinical Commissioning Group (CCG) announced today that they would stop funding fertility treatment.

Essex has become a fertility blackspot, with both North East Essex and Mid Essex deciding to ignore the guidance from NICE which is based on what is clinically and cost effective. They have instead cut all IVF to couples with fertility problems.

North East Essex, making their announcement today, very generously added that couples who can’t conceive will still be able to see their GP for advice about their fertility problems – so you’ll be able to go and see your doctor who will be able to tell you about the treatment you need, but unless you can pay yourself, you won’t be able to access it.

We all know that the NHS doesn’t have limitless funds, what would make sense is for CCGs to find out how much IVF actually costs. A survey from Fertility Fairness last year found that there were huge variations in the prices paid for NHS treatment by different CCGs.  Cutting access to treatment is an easy way to try to reduce budgets, but is often not a wise or thoughtful solution.

Fertility Fairness say North East Essex decision is ‘shameful’

Responding to the decision today, Sarah Norcross, co-chair of Fertility Fairness, said: ‘It is shameful that only the well-off in North East Essex and Mid Essex will be able to access fertility treatment. Fertility services should be available for everyone eligible for treatment; not just the rich. This is a clear example of health inequality in practice. If you have the misfortune to have a fertility problem then the only way is not Essex.’

Fertility Fairness co-chair and chief executive of Infertility Network UK Susan Seenan added: ‘Funding fertility treatment is an investment in the future. Essex’s decision is short-sighted in the extreme. Fertility treatment is proven to be both clinically and cost effective, as recommended by the National Institute for Care and Clinical Excellence.’

Are you affected by this?

If you live in North East or Mid Essex and are no longer able to access the treatment you need, or if you have had a baby after NHS-funded IVF in one of these two areas, the BBC would like to hear from you – contact Claire by email at claire.brennan@bbc.co.uk

North East Essex – tell them what you think…

So, North East Essex are the latest commissioning group to announce their plans to stop funding fertility treatment. The commissioners claim that in North East Essex there are “substantial numbers of people whose health, including their fertility, is affected by their lifestyle (for instance smoking, excessive drinking, and lack of exercise)”. Are there really huge numbers of smokers who drink to excess trying to access NHS-funded fertility treatment in the Colchester area?  Most people I talk to who have fertility problems lead extraordinarily healthy lifestyles, so I’d be interested know what you think…

They are suggesting that fertility treatment should only be available for people who have had cancer and for couples where the male partner has Hepatitis C or HIV (in these they are proposing to offer ICSI despite the fact that NICE doesn’t recommend this at all).

You can read more about their proposals here. They are arranging a series of consultation “events”, so if you are able to get along to any of these, please do speak up for fertility patients.  You can email neeccg.enquiries@nhs.net to say you’ll be there.

The first is on Tuesday 7 July in Colchester at 6pm at Room 12a, Primary Care Centre, Turner Road, Colchester CO4 5JR.

The next is on Friday 10 July at 2pm in Clacton at Princes Theatre, Town Hall, Station Road, Clacton CO15 1SE

Then on Thursday 16 July at 6.30pm at Clacton at the Princes Theatre, Town Hall, Station Road, Clacton CO15 1SE

And finally on Tuesday 21 July at 10am at Walton on the Naze at Columbine Centre, Prince’s Esplanade, Walton on the Naze CO14 8PZ

 

One cycle of IVF for York

So Vale of York CCG has decided today that it will be offering one cycle of IVF – the BBC describes it as a “U-turn” but it’s actually more of an S bend; they didn’t fund, then they said they would fund a single cycle, then they decided they couldn’t afford it and now it seems they can. Let’s just hope that this time patients can benefit from the decision and that some of those who have been waiting will finally be able to access NHS-funded fertility treatment.

It’s important not to forget in all the excitement about York finally starting funding that this still falls very short of what NICE recommends – which is three full cycles for women of 39 and under. The BBC tells us that one cycle of IVF “costs the NHS £3,600” – one of the real problems with NHS funding is that no one knows how much a cycle of IVF should cost the NHS, and that some CCGs pay twice as much for this as others. York had calculated the cost of just over 100 cycle at an astonishing £2 million, and then seems to have had a bit of a rethink on this. Perhaps if it was clear exactly how much IVF should cost the NHS, we would see far more fertility funding

Update on fertility funding

A decision to cut IVF funding just a fortnight after the deputy Chief Executive of NICE made it clear that fertility guidelines were there to be followed shows just how badly the current system is failing fertility patients.  The guidelines for funding, set by NICE, are based on lengthy in-depth research and analysis of what is both clinically and cost effective for the NHS looking at all the available evidence, yet some local commissioners have decided to completely ignore this carefully researched guideline, instead coming up with their own ideas about what’s effective and what isn’t.

In East Anglia, clinical commissioning groups in West, North and South Norfolk, Norwich and Cambridgeshire and Peterborough have reduced the number of cycles of IVF they fund without any formal consultation – or any formal announcement.  Last night, I went to talk to Susie Fowler-Watt about this on BBC Look East as they wanted to understand what the decision would mean to patients – and it’s clear it will be devastating, adding pressure and anxiety to those who are already living with the impact of fertility problems.

Let’s be clear – infertility is a medical condition, and IVF is an appropriate treatment for that medical condition. Not being able to conceive affects every area of your life, and can lead to isolation and depression, damaging relationships and friendships. Fertility funding is easy to cut because fertility patients are not going to be out there with placards shouting about it – many are unable to even talk about the corrosive effect it has on their lives, they may not even tell their closest friends and family. There’s still a stigma attached to infertility, and these kind of decisions add to that stigma.

We are meant to have a NATIONAL health service, but when it comes to fertility we have a postcode lottery where your access to the treatment you need for a medical condition depends entirely on where you live.

Susan Seenan, Chief Executive of Infertility Network UK and Co-Chair of the National Infertility Awareness Campaign, said last night: “NICE originally recommended 3 full cycles back in 2004; it is clear that 3 cycles is what is expected nationally and it has been proven to be the most clinically and cost effective number for commissioners to offer on the NHS. Indeed Gilian Leng, deputy chief executive of NICE, has recently confirmed that CCGs which don’t follow the guidance are exacerbating the problem of variation in care, which contradicts the fundamental aims of the NHS. Infertility doesn’t discriminate, and neither should the CCGs. We would urge them all to take heed of the guidance issued by NICE and reverse these decisions to ensure that access to fertility treatment is fair and equitable right across the country.”

 

NHS funding for fertility

It is good news that NICE is working to reinforce last year’s fertility guideline, and is pushing to end the postcode lottery which has blighted so many people’s access to fertility treatment. NICE released draft standards today about this – a finalised version will be published after consultation in October. You can see the press release from NICE here.

For too long, fertility treatment has been seen as some kind of optional extra by some commissioners, despite very clear guidance from NICE on what they should be offering. The NICE guidelines are based on what is both clinically and cost effective, and are all about ensuring best practice. Despite this, many commissioners have set their own rules on how many cycles to offer, and have invented criteria to limit access to treatment. I was shocked when I was in touch with one clinical commissioning group recently to discover that their justification for denying treatment to a woman whose partner had a grown up child from a previous relationship appeared to be based on the fact that this was mentioned as a reason for rationing treatment on the NHS Choices website.

The release of the draft standards follows a court ruling that Clinical Commissioning Groups cannot just decide not to follow NICE guidance without good reason after a woman who was due to have chemotherapy was denied NHS funding for egg freezing.

For too long our national health service has been far from national when it comes to funding for fertility – let’s hope it’s finally time for a change.

When super-fit doesn’t mean super-fertile…

Performance-enhancing steroids have been in the news this week with news that NICE is recommending that users should be encouraged to use needle exchanges to avoid infections from contaminated needles.  This may not seem relevant to fertility but the fact that an estimated 60,000 people have used anabolic steroids in the last year, and that an increasing number of teenagers are injecting them, is deeply worrying for their future chances of being able to have children.

Young men are often using steroids in an attempt to make themselves look super fit, but may not realise that they are having a serious impact on their fertility. Anabolic steroids can actually shrink your testicles and cause sperm production to stop altogether. Some men will never regain their fertility, and although others may do eventually, this can take years.

It’s an important message that needs to get out there – super-sized musclemen may not be as virile as they look…

 

NICE try… but is anyone listening

I’ve just spent a really interesting evening at a debate organised by Progress Educational Trust where the new NICE fertility guideline was up for discussion.  Titled ‘NICE try… but is anyone listening”, the debate was chaired by Dr Allan Pacey of the British Fertility Society which had sponsored the evening.  The debate focused on the fact that the 2004 guideline has still not been fully implemented in many areas, and questioned whether commissioners were really going to take any notice of the new guidance.   The evening started with brief presenatations from the panel of speakers.

First up was Dr Yacoub Khalaf, Director of the Assisted Conception Unit at Guy’s and St Thomas’ who explained how linking fertility funding to single embryo transfer had already successfully saved money overseas, and questioned why NICE was not able to use this kind of joined-up thinking. The second speaker was commissioner Peter Taylor, a fellow member of the NICE guideline development group.  Peter explained the commissioning process following on from the previous fertility guideline in 2004, and discussed how fertility commissioning decisions had often been down to arbitrary measures outside the guidance itself.  The final speaker was Dr James Kingsland, President of the National Association of Primary Care, who talked about the new clinical commissioning groups and how it will be up to the public to challenge them if they are making decisions about fertility treatment based on rationing rather than clinical care.

The debate which followed covered a range of topics, although there was some focus on the health economic models used by the NICE team and questions as to how reliable members of the audience felt these to be.  There was also discussion about the decision not to offer IUI to those with minor fertility problems, which one member of the audience felt was a mistake.  The decision to only offer one cycle of IVF to women between 40 and 42 was felt by many to be unfair.

For me, the quote of the evening came from Professor Peter Braude who questioned the fairness of the current system and noted that when it comes to fertility our health service is far from National: he made the point that we don’t make decisions about who should be immunised on the basis of their postcode, and questioned why we should do this when it came to fertility.

I think I’d agree with Peter Taylor’s concluding thought – that the new guideline may not be perfect, but it certainly isn’t that bad.  As a former patient, I’m really delighted that there is more up-to-date guidance to be followed, and that this advice will make it possible for people to access more cost-effective treatment more quickly if the guideline is followed.

 

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