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.

More cuts to fertility funding – now it’s Somerset

ivf_science-300x168I’m off to the South West for the day today – and am sad to note that it is one of the worst areas in the country when it comes to the provision of NHS-funded fertility treatment. Earlier this week, Somerset became the most recent area to cut IVF fertility treatment and offer just one single cycle of funded IVF.

When funding for fertility treatment is cut, the excuse is often that commissioners are only following what the public wants. However, Somerset Clinical Commissioning Group (CCG) have decided to cut fertility funding despite the fact when they carried out a public consultation, most people wanted them to offer three full cycles rather than cutting down to one.  Sarah Norcross, Co-Chair of Fertility Fairness explains: ‘The CCG’s own consultation shows that the majority of people consulted (57 per cent) want three cycles of IVF to be funded and that the majority of those consulted (74 per cent) also said that the number of NHS-funded IVF cycles should not be reduced in order to balance the costs of reducing fertility treatment waiting times from three years to two. We are appalled to see patients and the public ignored and let down by Somerset CCG.

Susan Seenan, co-chair of Fertility Fairness and chief executive of leading fertility charity Infertility Network UK said: ‘Somerset CCG is also ignoring national public health guidance on treating the disease of infertility. The National Institute for Health and Clinical Excellence recommends that it is both clinically and cost effective that all eligible couples should receive up to three full NHS-funded cycles of IVF or ICSI where women are aged under 40. Reducing IVF provision will have a drastic impact on patients and the health economy. The pain and grief of fertility problems has severe social and economic consequences – leading to depression, social isolation and the breakdown of relationships.’

So why do Clinical Commissioning Groups so often decide that fertility patients don’t deserve the treatment NICE recommends? Why are so many cutting back? And what can we do to stop it? If your local provision is not good, writing to your MP or local Healthwatch will certainly help – look at the Infertility Network UK website for some template letters to assist with this, and do visit the Fertility Fairness website too for more information about provision across the UK and the campaign to improve it.

IVF funding in Wales

2016_calendar-1.svgI was glad to see that the fact that waiting times for NHS treatment in Wales can lag behind those in England has been highlighted in the news today.  The news focused on care for certain key conditions, with the biggest difference for hip operations where patients in Wales wait an average of four months longer than those in England. The research also found longer waits for stomach operations and getting diagnosed for pneumonia, with differences in some other areas too.

One of the biggest differences in waiting times not highlighted in this report is for IVF where fertility patients are often having to wait considerably longer than they would do in the rest of the UK. It is far from uncommon to be waiting for a year for fertility treatment in Wales, and this inequality of access is yet another strand of the postcode lottery for IVF in the UK – where you live really does have a huge impact on not only how long you wait, but also how much treatment you can access and what kind of eligibility criteria apply.

For more information about fertility funding and the postcode lottery, you can go to the Infertility Network UK and Fertility Fairness websites.