A doctor’s view of IVF funding cuts

When we hear about cuts to funding for fertility treatment, it’s often presented as yet another Clinical Commissioning Group deciding to reduce what they offer to couples with fertility problems. We hear about the statistics for the tiny number of areas in England where IVF is offered in the way that NICE considers both clinically and cost effective. We hear that in certain parts of the country, commissioners are rationing IVF by making random decisions about who is eligible which have nothing to do with how likely the treatment is to work. We hear about the postcode lottery and how unfair this is within a health service that is meant to be national.

What we don’t hear so much about is what any of this actually means to the real people who have to live with the consequences of these cuts to funding – and that’s why this article from Adam Kay in The Times is so important. For anyone who doesn’t know, Adam Kay is the author of This Is Going to Hurt: Secret Diaries of a Junior Doctor’ and worked for a number of years as an obstetrician and gynaecologist.

Adam Kay’s article lays bear the reality of fertility funding cuts as experienced by the patients he saw – the woman who attempted suicide after learning she wasn’t eligible for IVF when she would have been if she lived just five miles away, the grief couples experience when they learn that they won’t be able to access any treatment for their medical condition.  Adam Kay talks about this from the perspective of a professional delivering the news, and that makes this so compelling. It’s such an important point of view and really helps to explain why those who dismiss fertility treatment as a “lifestyle choice” have got it so very wrong.

Thanks to Adam Kay for speaking out to support fertility patients across the UK – and let’s hope for more professionals talking honestly about the impact of funding cuts in their clinics, and what it means to them and to their patients. This really can make so much difference. It’s easy to dismiss statistics about cuts to fertility funding and to ignore concerns about a postcode lottery. It’s not so easy to dismiss the way this affects the lives of real people.

New restrictions on IVF funding

It’s National Fertility Awareness Week and today the campaign group Fertility Fairness has released an audit which has found new restrictions on IVF funding. The survey covered all the Clinical Commissioning Groups (CCGs) in England and found that 80% are failing to follow the NICE guidance which says that all eligible couples under the age of 39 should be offered 3 full cycles of IVF treatment.

Many are also setting new criteria to limit eligibility for treatment. Despite the fact that neither male age nor weight affect the success rate of IVF, more than a quarter of CCGs have decided to use the male partner’s body mass index (BMI) to decide whether a couple can access NHS treatment, and 8% no longer offer NHS funding if the male partner is 55 or over. Around one in four CCGs also use AMH or antral-follicle count to check a women’s ovarian reserve (an estimate of the number of eggs in the ovaries) to decide whether she is eligible for IVF. The NICE guidance gives some guidance on levels at which these may be helpful to assess how a woman may respond to the drugs used in IVF to stimulate the ovaries, but there is no suggestion at all that this might be used to decide who should be eligible for treatment.

Consultant gynaecologist and Fertility Fairness committee member Raj Mathur, said: ‘ Male age and BMI are not in the NICE guidance as criteria for IVF and there is no strong evidence of impact on clinical outcomes of IVF. AMH and antral follicle count are in the NICE guideline as predictors of ovarian response, but NOT as predictors of the chance of having a baby through IVF. Commissioners are making unjustified extrapolation in using them for rationing.’

The audit found that

  • 3.6% of CCGs have removed NHS IVF entirely
  • 40% do not offer a full IVF cycle, limiting the number of frozen embryo transfers
  • 20% offer one full IVF cycle, transferring all fresh and frozen embryos
  • 23% offer two IVF cycles.
  • 13% offer three IVF cycles.

In the last two years, 30 CCGs have reduced NHS fertility services, and one in ten CCGs is currently consulting on cutting or removing NHS fertility treatment.

Sarah Norcross, co-chair of Fertility Fairness, said: ‘It is shocking to see CCGs introducing their own ‘access to IVF’ criteria, as well as reducing the number of IVF cycles they offer. It is not the CCG’s job to decide the criteria for accessing NHS fertility services. NICE has accessed the evidence in its guideline and developed access criteria for NHS patients and they do not include male BMI, male age, a woman’s AMH level or whether or not a couple has a child from a previous relationship. What criteria will CCGs introduce next; star signs and shoe size? CCGs need to remove their extra ‘access to IVF’ criteria now.’

Aileen Feeney, co-chair of Fertility Fairness and chief executive of leading national charity Fertility Network UK said: ‘ Fertility Network is extremely concerned about the effect that reducing access to NHS IVF has on already distressed patients. Infertility is a devastating disease causing depression, suicidal feelings, relationship breakdown and social isolation; removing the recommended clinical help or making it harder to access is cruel and economically short-sighted. Access to NHS treatment should be according to medical need and not your postcode. We urge anyone affected to join Fertility Network’s #Scream4IVF campaign calling for fair access to NHS IVF in the UK; with your help we can reach 100,000 signatures and hold a debate on the issue at Westminster. Sign the petition at www.scream4IVF.org and share your #Scream4IVF during Fertility Week.’

IVF funding situation is “shocking”

The latest figures released by Fertility Fairness earlier this week about funding for IVF treatment have been described as “shocking” by the President of the Royal College of Obstetricians and Gynaecologists, Professor Lesley Regan.

Commenting on the fact that so few clinical commissioning groups (CCGs) are currently following national guidance and that the number which have completely removed NHS IVF has almost doubled in the last year, Professor Regan said “These figures are shocking and it’s very disappointing to see even fewer CCGs following NICE guidance and providing full access to NHS fertility treatment. Current access to treatment is a postcode lottery and these health inequalities people face are unacceptable. Infertility can have a devastating effect on people’s lives, causing distress, depression, and the breakdown of relationships. IVF treatment is cost-effective and should be available on the NHS. The RCOG is committed to working with UK commissioners and healthcare providers to support them in following NICE Fertility Guidelines.”

Thanks to Steve McCabe

We should all thank Steve McCabe, the Member of Parliament for Birmingham Selly Oak for raising the issue of NHS funding for fertility treatment in a Backbench Business Debate at Westminster supported by Tom Brake, the MP for Carshalton and Wallington, and Ed Vaizey, the MP for Didcot and Wantage. He’d been contacted by a number of constituents about the problems of the postcode lottery for fertility treatment, and called on the Health Secretary to investigate the cost disparities and the variations of IVF provision across England to find out why NICE guidance isn’t being followed universally.

The Health Minister Nicola Blackwood said that she would be writing to NHS England to ask that it communicates clearly with CCGs the expectation that NICE fertility guidelines should be followed by all.

It is a difficult time for the NHS which we know faces financial challenges, but stopping funding IVF would make little difference to the monetary woes – and indeed may actually end up costing far more if you factor in the long-term distress and depression caused by not being able to access treatment and the risk of patients having multiple embryo transfers overseas and returning with multiple pregnancies which can lead to health risks for both mother and baby.

The debate at Westminster was not well-attended, despite a big campaign by the charity Fertility Network and the campaign group Fertility Fairness. If you haven’t written to your MP about the problems of the postcode lottery yet, it is not too late. You can find details of how to find your MP and what to write on the Fertility Network website and if you are interested in watching the Westminster debate, you can find it here 

Choosing a fertility clinic

800px-Woman-typing-on-laptopThose of you who came to my talk at the Fertility Show will know that I promised to put up some notes from my talk on the blog this week – here they are at last!

The HFEA website

We begin with the HFEA website which is the best place to start. You can search for your local clinic using the Choose a Clinic tool – just type in your postcode or local region and you will get a shortlist of local clinics.

You can see more about the treatments they are licensed to carry out, services, facilities and staff. It will tell you whether they take NHS patients, the opening hours, whether there is a female doctor and links to a map.

Of course, the one thing you really want to know is how likely am I to get pregnant there? Which is the one thing no one can honestly tell you. The HFEA publishes success rates for all licensed clinics, but they may not be as clear cut as you imagine. Most clinics have broadly similar success rates and the majority of clinics in UK have success rates which are consistent with national average. Don’t forget, the patients treated affect the success rates.

You may want to look at the success rate for someone of your age, and make sure you are comparing like with like. The HFEA also gives the multiple birth rate, but a high rate doesn’t suggest a good clinic which has your best interests at heart. Naturally multiple births occur in 1 in 80 of all pregnancies, it’s around one in six after IVF. That may sound positive, but in fact multiple birth is the single biggest risk after fertility treatment. 1 in 12 multiple pregnancies ends in death or disability for one or more babies, and it is also more risky for mothers. Good clinics should not have very high twin rates. A really good clinic will have good success rates and low multiple rates.

When it comes to success rates, don’t get bogged down in fairly small percentage differences – in general they’re probably not that meaningful.

NHS Funding 

You will also want to know if you qualify for NHS funding. The guideline from NICE recommends 3 full cycles (fresh and transfer of any frozen embryos) for women of 39 and under and one full cycle for women of 40-42 who have had no previous treatment, who have a good ovarian reserve and who have spent 2 years trying)

In England funding comes from your local CCG (Clinical Commissioning Group) not your clinic so you need to find out their rules – and unfortunately they all make their own up as the NICE guideline is only a guideline. You can find out what your CCG is offering by visiting the Fertility Fairness website. The CCG will also set eligibility criteria – and each will have their own

Location 

Think about how close the clinic is to your home or workplace. Be realistic as a long journey is fine as a one-off, but think about doing it three or four times a week. Ask the clinic how often you will have to visit as some will want you in every day of the cycle, but others just a few times a week.

Think about how you will get there and how long the journey will take? Are you going to use public transport or drive? Will you be travelling in the rush hour? Can the clinic offer early morning appointments or will you need to take time off work? Will it fit around your job?

Cost 

Fertility treatment prices are not regulated and can vary hugely. Clinics that charge more are not necessarily better so do look into prices. The headline figure on clinic websites is rarely the total cost of treatment  – ask instead what the average person actually pays

The HFEA does require clinics to offer you a personalised costed treatment plan, but check what is included – drugs, counselling, scans and bloods, freezing and storing spare embryos, follow-up consultations etc.

Unproven treatments 

Many clinics offer unproven additional treatments. Many are not scientifically proven. The HFEA has advice on some of these . Additional treatments can be very expensive, and you may risk paying a lot for something that may not make a difference – and may even bring additional risks.

Support

Will there be someone you can call with any problems/concerns? You should be given a contact to call if you are concerned about anything at any time. And is counselling included in the cost of treatment? You may think you don’t want or need it, you may may find it helpful once you have started treatment. So check if you are going to have to pay for counselling, and if it is included, ask how many sessions.

Is there a counsellor based at the clinic? Some counsellors also offer telephone counselling and you can find a list of fertility counsellors on the British Infertility Counselling Association website. Is there a patient support group?

Waiting 

How soon could you get an appointment and when could you start treatment if it is recommended ? How long are waiting times for donor eggs or sperm? At some clinics,
there are still waiting lists for donor eggs and sperm but others have plenty of donors, so do check.k

Do you like the clinic?

I think this is far more important than you might initially think.

Talk to anyone else you know who has been there, look online for views – but remember that everyone is different. Go to any open days or meetings for prospective patients and think if the clinic feels right for you. It may sound ridiculous, but it matters.

Trust your instincts, and don’t hink they don’t matter. Make sure that you have chosen a clinic that you will be happy with.

Treatment isn’t always easy, but it is certainly much easier if you are being looked after by people you like and trust.

Can you help save fertility funding in Suffolk?

images-21Ipswich and East Suffolk clinical commissioning group (CCG) and West Suffolk CCG have announced they are consulting on cutting the number of NHS-funded IVF cycles they offer from two cycles. They will either cut to one cycle or stop offering any treatment at all. The CCGs have asked for people to comment on these proposals before 5 September by filling in a feedback form on their website here .

If you live in the area, don’t forget that you can also write to your local MP about the proposals.  The local MPS are:

Rt Hon Matthew Hancock MP West Suffolk Matthew@matthewhancock.co.uk

Mr James Cartlidge MP South Suffolk james.cartlidge.mp@parliament.uk

Jo Churchill MP Bury St Edmunds jo.churchill.mp@parliament.uk

Dr Daniel Poulter MP Central Suffolk and North Ipswich daniel.poulter.mp@parliament.uk

Rt Hon Ben Gummer MP Ipswich ben@bengummer.com

Dr Therese Coffey MP Suffolk Coastal therese.coffey.mp@parliament.uk

Susan Seenan, co-chair of Fertility Fairness and chief executive of Infertility Network UK said of the proposals; ‘Why is it increasingly deemed acceptable to remove access to NHS treatment for people with fertility problems? Infertility is defined as a disease and is as deserving of NHS treatment as any other medical condition. To ignore the plight of the approximately 3.5 million people in the UK who are unable to have children without medical help is cruel and unethical.’

Hooray for Scotland!

Flag_of_Scotland.svgWhen news about fertility funding seems to focus on cuts and dwindling services here in England, the Scottish government has to be applauded – and loudly – for moving in the opposite direction, announcing plans today to fund three full cycles of IVF treatment for eligible couples. What’s more, couples will be eligible for the first time if one of them has a child from a previous relationship. The changes will be introduced gradually, but it’s still wonderful news that the Scottish government is able to offer such positive support to those with fertility problems.

Infertility Network UK’s Chief Executive Susan Seenan, who is also Co-Chair of Fertility Fairness, commented on the news saying, ‘Scotland continues to lead the way in providing equitable fertility treatment. The Scottish government brought in equity of provision in 2013 and is now committing to delivering the full clinically recommended 3 IVF cycles (for eligible women aged 40 and under). In addition, it is relaxing current access criteria and will offer fertility treatment to couples where one partner has no biological child. This increase in access to medical treatment is fantastic news for people in Scotland affected by fertility problems and we commend the Scottish Government for both recognising the importance of treating this medical condition and backing it up with action.”

Cambridgeshire cuts IVF funding

4cell_embryo.tif More cuts to fertility treatment – this time in Cambridgeshire where commissioners have decided to cut funding for IVF to just one cycle. NICE (the National Institute for Health and Care Excellence) recommends three full cycles of IVF treatment and Cambridgeshire and Peterborough CCG had only been offering two before this decision but will now reduce that to just one.

Susan Seenan, who is Co-Chair of Fertility Fairness and Chief Executive of the patient support charity Infertility Network UK said that they had not been aware of any tpublic consultation before the commissioners took the decision to cut funding.

Apparently anyone who had already been referred for treatment will not be affected by these changes which will cause huge distress and disappointment to many people who are experiencing fertility problems in the area.

 

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

Are you a victim of the IVF postcode lottery?

The_Houses_of_Parliament,_London_-_geograph.org.uk_-_1412018If you are affected by the postcode lottery for NHS-funded fertility services in England, then contacting your MP is one of the most important ways that you can help to lobby to save NHS-funded IVF.

The charity Infertility Network UK is launching a campaign to encourage fertility patients to write to their MPs to tell them how they are affected by the postcode lottery and what the rationing of fertility treatment means to them. The charity have prepared a draft letter or email which you can amend to include details of the impact your fertility problems have on your life. You can find the template for the letter or email at the bottom of this webpage and details of how to contact your MP here – you can just put in your postcode to find out who your MP is if you aren’t sure. You can also send a copy of your correspondence to Jane Ellison, the Parliamentary Under Secretary of State for Public Health at the Department of Health, Richmond House, 79 Whitehall, London SW1A 2NS.

Infertility Network UK and Fertility Fairness believe it is unacceptable that 83 per cent of England’s clinical commissioning groups ignore public health guidance from the National Institute for Health and Clinical Excellence and do not provide three full cycles of NHS fertility treatment and hope to change that with your help.