Does your MP support Fertility Fairness?

Y3qgabAY_400x400The campaign group Fertility Fairness is encouraging fertility patients to ask their MPs to attend a Parliamentary Reception in March to help them to become more aware of the realities of the postcode lottery when it comes to fertility treatment.

The reception is titled “Fertility Services: The Picture Doesn’t Have to Look Like This”,  and will take place on March 25. It has been sponsored by Ian Austin MP.

The event will examine the progress that has been made in the last year towards commissioning the three full cycles of IVF recommended by NICE, and will present a picture of the current situation. There will be examples of best practice to show how the system could work successfully.

Fertility Fairness would appreciate as many patients as possible writing to MPs to ask them to attend – you can find details here 

Increases in NHS funding for fertility

Y3qgabAY_400x400Great news from campaign group Fertility Fairness which reports that seven CCGs in Cheshire and Merseyside have increased their provision of IVF from two cycles to three.  The CCGs in question are Warrington, Eastern Cheshire, Wirral, Knowsley, Liverpool, South Cheshire and Vale Royal. It is hoped that four more in the area may follow their example.

Meanwhile, eight CCGs in Portsmouth , Southampton, Hampshire and the Isle of Wight region will decide whether to increase their provision next month.  You can find out more by visiting the Fertility Fairness website. Let’s hope that this excellent example is followed by others who are still not offering the full three cycles NICE recommends.

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

Calling all fertility patients in North West London

If you’re a fertility patient in North West London, and would be able to spare a few minutes to send an email or to talk to someone about your experiences of fertility problems and accessing NHS care, you could help to change the future for yourself and other fertility patients.

In Hillingdon, the local HealtWatch (which represents people’s views & experiences of care) has been reviewing local referral policies and noted that many of these do not follow the national NICE Clinical Guidelines, including the one for IVF.  The Clinical Commissioning Group (CCG) there is part of a group which covers all 7 CCGs in NorthWest London and they all have the same policy for IVF. The areas covered are the London Boroughs of Brent, Ealing, Hammersmith & Fulham, Harrow, Hillingdon, Hounslow, Kensington & Chelsea, and Westminster.

The guidelines from NICE recommend 3 full cycles of IVF treatment for eligible women aged 39 and under, and one full cycle for eligible 40 – 42 year olds. In North West London, women under 40 get just one cycle, and those of 40 – 42 don’t get anything. This doesn’t follow NICE guidance.

HealthWatch Hillingdon have been attempting to influence the Hillingdon CCG to follow NICE Guidelines, but they need more evidence of the impact of this inequitable referral policy on women in North West London who need IVF, but are not getting the treatment NICE advises. So, all the help you can give them will be welcomed.

You can either email a summary of your experiences/views and impact of this IVF policy has had on you to Healthwatch Hillingdon (raj.grewal@healthwatchhillingdon.org.uk) or if you prefer, you are welcome to call Healthwatch Hillingdon (01895 272997) and they can record your views/experiences/comments for you,

All the information that you provide to Healthwatch Hillingdon will be kept completely confidential and they will not share any personally identifiable information with any NHS organisation or other body without your written permission.

 

Live in Dorset? Your chance to have a say

If you live in Dorset, you have a unique opportunity to make a difference to the future for people with fertility problems in your community.

Dorset CCG has launched a consultation on reducing the number of cycles of IVF for fertility patients from two cycles of NHS-funded treatment to one.  The current provision already falls short of what is recommended, so it’s absolutely vital that as many people as possible living n Dorset respond to the consultation and let their voices be heard.

Don’t forget that the guidance from NICE recommends three full cycles of NHS-funded IVF for eligible women of 39 and under and one cycle for women of 40-42 who meet certain criteria. This is based on what is clinically and cost effective.

So, if you live in Dorset or your GP is based in Dorset, please do take a few moments to complete the consultation – you can find it on the CCG website here http://www.dorsetccg.nhs.uk/

 

Refused NHS funding in NW London?

Do you live in North-West London? Have you been refused NHS-funded fertility treatment? The NICE guidelines say that if you’re 39 or under and need IVF, you should be entitled to three full cycles, but at present that’s not happening in many areas of the country, including the London boroughs of Brent, Ealing, Hammersmith & Fulham, Harrow, Hillingdon, Hounslow, Kensington & Chelsea, and Westminster.

If you’re fed up about what you’re being offered and live in one of these areas, could you contact katebrian@infertilitynetworkuk.com – this isn’t for media purposes, so you can remain anonymous.  Many thanks in advance!

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.

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