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.

That time of year again…

It’s December and it ought to be a lovely time of year, but if you’re trying to conceive, it can be incredibly painful to find yourself faced with constant reminders of what you don’t have as you have to contend with the endless images of happy smiling families wherever you go. It can make you feel very lonely and isolated, as if you’re the only person who isn’t part of the cheery celebrations, so it’s worth bearing in mind that there are 3.5 million other people in the UK at the moment who are experiencing difficulties getting pregnant and who are probably feeling very much like you are about it all.

You will find lots of advice on how to cope at Christmas, but I think perhaps the most important thing to do is to accept that it’s a difficult time of year – and to do all that you can to look after yourself. Just because it’s Christmas, that doesn’t mean you have an obligation to do things that you know will be difficult or upsetting. Don’t feel guilty about making an excuse if you know you will find your niece’s nursery nativity play or the family Christmas party with your three pregnant cousins a challenge. At this time of year, it’s easy to be double-booked and making an excuse is acceptable. If you want, you can be honest and just say that actually you would find it too upsetting, but other people don’t always understand.

If you have friends who are going through fertility problems, it can be a good time to make arrangements to spend time together and do something different. You may even want to get away completely if you are able to and celebrate in your own way whether that’s a Christmas holiday in the Caribbean (yes, I wish too…), a day out in the countryside, pizza for two at home for Christmas lunch or an all-day long scrabble contest. If you want to do something in the spirit of Christmas, you could consider volunteering for a charity like Crisis which provides Christmas for homeless people or Community Christmas which offers companionship to older people who might otherwise be alone.

If you are struggling to deal with this season, it may be helpful to talk to a fertility counsellor who has the specialist skills and knowledge to understand how you are feeling. Some counsellors offer Skype or telephone counselling services and you can find a list of specialist counsellors on the British Infertility Counselling Association website.

Remember, this is your Christmas too and it’s entirely up to you what you want to do. You don’t need anyone’s blessing to decide that you’re going to branch out on your own and do something completely different, something that will make you happy and that you will enjoy. Think carefully about what might make you feel better and have fun whatever you decide!

100,000 call for fair access to IVF

Patient Charity Fertility Network has reached 100,000 signatures on the #Scream4IVF petition calling for fair access to NHS fertility treatment and an end to the IVF postcode lottery. Petitions which reach 100,000 signatures prove the public demand for a debate in Parliament. The #Scream4IVF campaign, with partners Saatchi & Saatchi Wellness, was launched less than three months ago on 6 September 2018.

Commenting on #Scream4IVF’s success, Fertility Network’s chief executive Aileen Feeney said: ‘Gathering 100,000 signatures, in such a short space of time, demonstrates the overwhelming public support to end the unethical and unfair IVF postcode lottery and create an equitable system for access to NHS fertility services in the UK. These 100,000 signatures represent the screams of pain and frustration from not being able to have a child without medical help – and not having your screams heard. The screams of childbirth are loud, but the screams of infertility are just as loud and today they are finally being heard. In the face of this overwhelming public pressure, Fertility Network calls urgently on the Government to debate in Westminster the issue of fair access to NHS fertility treatment. Thank you, too, to the incredible women and men who have shared their #Scream4IVF and made their infertility voices heard. We are stronger together.’

Steve McCabe MP (Birmingham Selly Oak) said: ‘I am thrilled so many people are joining our campaign to end the postcode lottery of access to IVF. Infertility is a medical condition and it is time we started treating it like one. It is simply unfair that access to IVF is down to where you live and not your medical need. In the New Year my Access to Fertility Services Ten Minute Rule bill is due to have its Second Reading in Parliament. This is the first small step to ending this disgraceful postcode lottery.’

Leader of the Liberal Democrats Vince Cable said: ‘People struggling with infertility can all too often face damaging mental health issues. It is wrong that there is so little support. 100,000 backing this campaign shows the strength of feeling behind the call for change. Liberal Democrats are listening and Ministers in Whitehall must listen too.’

Congratulations to all at Fertility Network UK on this huge success, particularly Chief Executive Aileen Feeney and London Regional Organiser Anya Sizer!

Can you help with a survey?

The National Institute of Health Research wants to fund some research to compare different therapies offered to women with premature ovarian insufficiency (POI), also called premature ovarian failure or premature menopause.

They are a team of doctors, researchers and women with personal experience of POI who are signing a trial to compare the treatments. To ensure that the trial is all right for  women who have POI, they are seeking your opinions. The survey should take no more than a couple of minutes to complete. Your answers are completely anonymous and it is really important as it will help improve treatment for women with POI in the future. You can find the survey here 

Natural killers or your body’s peacemakers?

Most people having fertility treatment are keen to absolutely anything they can to try to boost their chances of success, and sometimes that can mean paying for additional treatments as well as their IVF or ICSI which they hope can increase the likelihood that they will get pregnant. The problem with many of these treatments is that there is not yet sufficient evidence to be able to say that they will do what they claim to do, but fertility patients sometimes decide to have them anyway.

One treatment offered by some clinics is related to the level of natural killer (NK) cells in a woman’s body – the very name suggests that having a lot of these must inevitably be a bad thing. If you are considering having your NK cells tested as part of your fertility treatment, you may be interested in reading this article which explains the growing understanding that at least some of a woman’s natural killer cells act as peacekeepers, preventing other immune cells from attacking the fetus. They also produce chemicals which promote the growth of the baby and blood vessel connections.

You can read more about all fertility treatment add-ons on the HFEA website, where each of the different treatments has been ranked according to the latest scientific evidence and given a traffic light grading.

Fertility and wellbeing event in Wales

If you’re based in South Wales or live close by, you may be interested in the Fertility Network UK fertility and wellbeing event organised for Saturday 1st December in Cardiff. There will be more than 20 exhibitors and expert advice. The first 100 people at the event will also get a free delegate bag.

There will also be some speakers at the event. BBC Wales’ Lucy Owen will share her personal experience of fertility problems, Fertility Network UK’s Anya Sizer will talk about coping with Christmas, Tricia Lowe from Good Nutrition First will be talking about staying healthy at Christmas and singer Elin Fflur will talk about her experiences of treatment.

You can find out more from the Fertility Network UK website.

Adoption and IVF – claims and counter claims

One of the most common pieces of “helpful” advice you’ll hear if you are open about experiencing fertility problems is that you should consider adoption instead, “Why don’t you just adopt instead?” people will ask. They nearly always use the “just”, as if it’s some instant route to parenthood which you are wilfully ignoring. This often comes tinged with the suggestion that there is an inherent selfishness in wanting to have your own child rather than someone else’s – if you are going to need IVF to do it. You don’t hear the same people suggesting that those who can conceive without any problems and who have thee or four or five children of their own were selfish and should have considered adoption instead, but that’s another matter…

On Friday, Anthony Douglas, the chief executive of the Children and Family Court Advisory and Support Service (Cafcass), added fuel to the fire by suggesting that the growing success of IVF is responsible for the drop in potential adoptive parents, claiming that now few people will consider adoption as an option. Apparently In 1970s, there were 12,000 children were adopted in Britain every year but in 2017 there were just 4,350 adoptions. At the same time, there is a growing number of children in care.

It always strikes me as odd that when it comes to discussion about infertility and adoption, people seem to see adoption as some kind of solution for fertility problems. In fact, adoption should be about finding the best possible family for a vulnerable child rather than offering some kind of quick fix solution for a couple with fertility problems. Adoptive parents need to have a resilience and dedication to adoption that makes them very special people. Having a fertility problem doesn’t automatically give you those qualities. In response to Anthony Douglas’s suggestions, the head of one adoption charity said it seemed to be a “misunderstanding of the very essence of adoption”.

In 1978, we were in a very different place, and not just because IVF wasn’t around. For a start, there were far more newborn babies without siblings who needed adoptive families. Now it is very rare to be able to adopt a newborn, and in 2012 there were only 76 babies adopted so very few parents will be caring for an adopted child from the start of his or her life. More than three quarters of children waiting to be adopted are over 2, and they have often experienced many difficulties and challenges in their lives. More than 60% are in sibling groups so parents would not be adopting one child but two or more. Around a third of the children needing adoptive parents are from ethnic minority backgrounds.

The other huge issue around adoption is the lack of support which many adoptive parents report, and they often feel they are unprepared for the challenges adoption can bring. A survey by the charity Adoption UK last year found that more than a quarter of families reported being “in crisis” and two thirds of respondents said their child had displayed aggressive behaviour towards them. At the time, the chief executive of Adoption UK, Dr Sue Armstrong Brown, said “We’re talking about trauma-fuelled violence from children who will have witnessed the unthinkable in their early lives. Adoption is not a silver-bullet – these children’s problems don’t just disappear overnight. Children who have suffered the trauma of abuse or neglect have experienced the world being an unsafe and dangerous place. The child’s violent behaviour reveals extreme distress and a need to feel safe and protected. These children need particular parenting techniques and access to therapy to overcome early childhood trauma, and they may reject any attempts at parental affection or management of their behaviour.”

There may be some people with fertility problems who are excellent adoptive parents, but anyone with any experience of adoption will know all too well that pairing up traumatised young people with adults scarred by infertility is not a one-size-fits-all solution to either problem.

The Long Road to Baby

Hearing other people’s stories can be so helpful – and heart-warming – when you are trying unsuccessfully to conceive, so thanks are due to the BBC’s Sophie Sulehria and her partner Johnny for charting their fertility story in a BBC Radio 4 podcast. Titled The Long Road to Baby, it bills itself as post-IVF exploration into the alternative ways to become parents. The ten episodes cover a range of topics including unsuccessful IVF, donor treatment, adoption, fostering and living without children.

Sophie has become a leading voice in the fertility world, and her willingness to speak openly about her own experiences has been hugely helpful to so many people struggling with their own fertility issues. Knowing that this can – and does – happen to anyone, including people in the public eye, makes all the difference to those who are feeling isolated and alone.

If you haven’t already, have a listen to the Long Road to Baby – it comes highly recommended!

You are not alone

One of the most difficult things about living with fertility problems is the loneliness and isolation you can feel as everyone around you seems to be getting pregnant effortlessly. If you don’t tell other people what you are going through, you get questions about when you are going to have children and warnings that you don’t want to leave it too late. If you do tell people, you can end up with lots of advice you could do without (“why don’t you just relax/get a dog/go on holiday…”).

Last night, I facilitated a fertility group for the charity Fertility Network UK in South East London and it really struck me, as it does every time we meet, how beneficial it can be to spend some time with other people who really understand how you are feeling and who know what it is like. Fertility Network has groups meeting across the UK, mainly run by volunteers like me, which offer a haven for anyone experiencing fertility problems. It’s a unique opportunity to be with people who share similar experiences and to be able to talk openly and honestly about how you are feeling.

It’s National Fertility Week and there’s lots of work going on to raise awareness about many important fertility-related issues, but one of the most important messages for me is that you don’t need to go through this alone. There are opportunities to meet other people who can offer support, and the groups aren’t miserable or depressing, but rather an opportunity to help yourself to feel less lonely. There are 3.5 million people living with fertility problems in the UK and meeting some of the others may be just what you need.

Coping with unsuccessful fertility treatment

New research has been investigating how people react to unsuccessful fertility treatment and how best to them. Although such comparisons are difficult to make, going through unsuccessful fertility treatment is thought to have a worse impact on your mental health than  divorce and is almost comparable to the impact of bereavement.

When research participants were asked to share their experience, they talked about an intense grief made of profound pain and feelings of loss, sadness and emptiness, which was sustained over time and only very progressively tended to diminish and become bearable. They also said that it was hard to stay connected with the people around them who have children and to discuss their situation with others, and this resulted in feeling very isolated. In addition, most people perceived to be abandoned by their fertility clinics and expressed a need for psychosocial support.

We now know that with time, around nine in every ten people are able to let go of their desire for children and rebuild a happy and fulfilling life. What we haven’t know, is what the things that helped those people to come to terms with their unmet desire for children.

To investigate this adjustment process, Dr Sofia Gameiro from Cardiff University worked with the patient support charity Fertility Network on an online study aimed at answering two key questions. First they wanted to find out whether this grief and the adjustment process is experienced by everyone who is unable to have the children they wanted or is unique to those who had had fertility treatment. Second, they want to investigate the mechanisms which helped people to adjust and could be used to support others.

There were 420 responses to the survey and the vast majority were women with an average age of 35. The survey results showed three key things that help people come to terms with their unmet desire for children;

  • Making meaning of the experience
  • Accepting the reality
  • Refocusing life on other fulfilling goals

The results from this study are in the process of being written up for publication and have been crucial to the development of educational and supporting materials that Fertility Network UK is making available in its More to life website, which is specially dedicated to support those facing the challenges of childlessness. The materials will be launch on Tuesday 30th October and can be accessed here.