The true impact of fertility problems

Cmhc-LqWYAAWk88It’s all too easy for those not affected to brush off the impact of fertility problems on people’s lives, but a new study from Fertility Network UK with Middlesex University London has come up with some bleak figures.

As Susan Seenan, Chief Executive of Fertility Network UK explains, “This survey paints an incredibly stark, distressing picture of what it is like to experience fertility problems in this country. Sadly, in the UK, the inability to have children without medical help means having to face a series of emotional, social and financial hurdles. These include often having to pay crippling amounts of money for your own medical treatment, a lack of affordable, accessible counselling and emotional support, and the deterioration of core relationships. Far more needs to be done to help individuals through the far-reaching devastation fertility issues wreak.”

Key findings include:

  • 90 per cent of respondents reported feeling depressed; 42% suicidal
  • 54% had to pay for some or all of their treatment; 10% spending more than £30,000 (the average was £11,378)
  • 74% said their GP did not provide sufficient information
  • 70% reported some detrimental effect on their relationship with their partner
  • 75% noted the lack of a supportive workplace policy
  • 75% would have liked to have counselling if it was free; only 44% did receive counselling and, of these, over half had to fund some of it themselves

You can read the full survey results here 

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.’

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.

 

Fertility education – what do you think?

120px-Classe-merikanjakaShould we be educating pupils in school about fertility? Or would it just be worrying and confusing for young people? That was the subject up for discussion at last night’s Progress Educational Trust debate at the Royal College of Obstetricians and Gynaecologists.

The evening began with short talks from each of the speakers. Fertility specialist Dr Melanie Davies began with a neat summary of the biological facts, illustrating how fertility declines with age, how the rate of miscarriage increases and how IVF success rates follow that pattern. Infertility Network UK‘s Chief Executive Susan Seenan followed, talking about the charity’s Scottish education project which is funded by the government there. The project has exposed a lack of knowledge among students about basic fertility facts, and has shown how learning more can influence their choices going forwards. Helen Fraser, Chief Executive of the Girls’ Day School Trust sounded a note of caution about the realities for young women today, and discussed how going to University, having a career, finding the right person to have children with and a suitable home can all lead women to delay childbearing. Finally sex and relationships educator Justin Hancock who writes at bishuk.com spoke about what is wrong with today’s sex and relationships education and why all too often it doesn’t give young people the information they need.

The discussion which followed, chaired by Professor Adam Balen of the British Fertility Society was fascinating with many varied views – is it essential that everyone is properly informed about fertility or would fertility education just be placing adult problems on children? Does fertility education imply that lifestyle choices might be to blame for infertility? Is it time for a complete overhaul of the way we talk to young people about sex and relationships? The audience included a good number of young people who actively engaged in the discussion making interesting points and asking questions.

So would fertility education be a good thing? Should it be an essential part of every young person’s education to ensure they are properly informed? Or do we risk giving them yet another thing to worry about at a time when they have so much to deal with already? My own view is that we miss the point if we focus on teaching about “infertility” as what really matters here is fertility awareness – and I do believe young people should be taught about their own fertility in a way that my generation wasn’t. But what do you think? Would knowing more about your own fertility have made a difference to you?

Plans to cut IVF in Bedfordshire

ivf_science-300x168If you live in Bedfordshire, you should be aware that campaign group Fertility Fairness have produced a news release today warning that commissioners there are considering a blanket ban on NHS fertility treatment.

Susan Seenan, co-chair of Fertility Fairness said: ‘Parliamentary Under-Secretary of State for Health Jane Ellison has said that blanket restrictions on procedures that do not take account of the individual healthcare needs of patients are unacceptable. Despite this,Bedfordshire clinical commissioning group has announced it is consulting on implementing a blanket ban on NHS fertility treatment.’

‘Infertility is a disease and is as deserving of treatment as any other medical condition. We are calling on the Government to act now – to make it clear that while clinical commissioning groups have to operate within their financial budgets and consider the needs of their local healthcare population, they should not be implementing blanket bans on services.’

Across England, consultation responses supporting the continuation of NHS fertility services are being routinely ignored; Fertility Fairness would like undertakings from Bedfordshire clinical commissioning group that this will not happen on this occasion.’

Sarah Norcross, co-chair of Fertility Fairness said: ‘While Bedfordshire clinical commissioning group has promised to consult local people about their views regarding the provision of NHS fertility services, we are not reassured that this public consultation will be anything other than a meaningless exercise. There is now a striking North-South divide between the levels of provision of NHS fertility treatment. The National Institute for Health and Clinical Excellence (NICE) 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. However, just 17.2 per cent of England’s 209 CCGs follow this national guidance and provide access to three NHS- funded IVF cycles. Of the 36 clinical commissioning groups offering three NHS-funded IVF cycles, the vast majority – 78 per cent – are in the North; just eight regions in the South (22 per cent) follow NICE’s recommendation regarding NHS fertility treatment. All the areas that have decommissioned NHS fertility services, or are consulting on doing so, are in the South of England.’

If you are going to be affected by this, do make sure that your voice is heard. Contact Bedfordshire Clinical Commissioning group, contact Healthwatch and write to your local MP. If you are affected by this and are happy to talk to the media,  do please email catherinehill@infertilitynetworkuk.com

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.

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

The date is set – National Fertility Awareness Week

200The dates have been set for this year’s National Fertility Awareness Week – which is the first week in November from the 2nd to the 8th. As usual, the week will end with the Fertility Show which will take place at London’s Olympia.

National Fertility Awareness Week is organised by fertility support charity, Infertility Network UK, and Chief Executive Susan Seenan said: ‘In the UK, one in six couples struggle to become parents – that’s over 3.5 million people experiencing the heartbreak and anguish that fertility problems wreak. Even if you are not directly affected, many people will know someone – a friend, family member or work colleague – who needs extra help to have a baby. Now is the time to show your support for the #1in6.’

 

You can find out more about the week and how you can get involved by clicking here 

Tripadvisor for fertility clinics?

If you missed the debate organised by Progress Educational Trust on the HFEA’s plans to include some patient feedback on clinics on the website, you can catch up with the podcast here.

You can hear the HFEA’s Juliet Tizzard, Infertility Network UK’s Susan Seenan, Yacoub Khalaf director of the fertility clinic at Guy’s and St Thomas and Antonia Foster, a media litigation specialist discuss the issue in a debate chaired by Adam Balen, the chair of the British Fertility Society.  It was an interesting and lively evening – and that link is at –http://www.progress.org.uk/tripadvisor

Fertility Fairness

Y3qgabAY_400x400We’re often told that IVF is not a terribly successful treatment, that 75% of cycles won’t work – and this is sometimes cited by people who don’t agree that the NHS should fund fertility treatment. Earlier this week, I went to the event at Westminster organised by campaign group Fertility Fairness where there were some compelling arguments about the clinical and cost effectiveness of funding three full cycles of IVF as recommended by NICE.

One of the speakers at the event, Tim Child from Oxford Fertility Unit, presented some figures from his clinic for IVF success rates for the NHS patients they treat aged under 37 who were getting the three full cycles of IVF recommended by NICE. The statistics showed an 80% cumulative success rate over three full cycles.  So, the majority of patients will be successful when NICE guidance is followed – which isn’t what we are often led to believe. What is sometimes forgotten when CCGs talk about funding for fertility is that they don’t need to pay for three full cycles for every patient – as more people get pregnant with each  transfer, the number of additional payments needed diminishes – and yet calculations often seem to be based on the idea that every patient will need the three full cycles.

Infertility Network UK‘s Chief Executive Susan Seenan, who is also Co-Chair of Fertility Fairness along with Sarah Norcross, spoke about the realities of the impact of CCGs policies on fertility funding for patients. She told of one patient who was unable to access the treatment she needed because her partner had a child from a previous relationship. The “child” was in fact a 25 year old who lived abroad, but this still meant that the couple were denied treatment.

If you want to know more about funding for fertility, and what you can do if your CCG doesn’t fund treatment, you can visit the Fertility Fairness website – and the pages on funding on the Infertility Network UK site have templates for writing to your MP or CCG too.