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.

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.

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.’

Royal pregnancy announcement

Pregnancy announcements are never easy when you’re trying to conceive, but one which has swamped the media and is this morning taking up endless pages of many newspapers is particularly difficult to avoid. What makes this announcement even more challenging is that the Royal couple were only married a matter of months ago, and seem to have conceived with effortless ease.

It was unfortunate that the announcement came during Baby Loss Awareness Week, on a day when many people were preparing to light candles for the Wave of Light in memory of their own losses. Although the couple have been criticised online for this, the most likely reason is that they simply didn’t know the significance of the day.

The endless discussions about the Royal pregnancy are going to go on – and on, and on – during the next few months. One of the best ways of dealing with that is to spend time with other people who understand how you feel about this because they share similar experiences. Why not try one of Fertility Network UK’s fertility groups which run across the UK? They’re an ideal opportunity to meet others and can be really empowering. I admit I am biased about this as I run the group in South East London, but that’s because I know how much it can help. Being with other people who understand, and who share your conflicted feelings about pregnancy announcements can make all the difference. It can help you to realise that you are not having a personality change and becoming an unkind person, but are reacting in a perfectly normal way to an emotional challenge. You can find details of all FNUK’s groups here, and it there isn’t a group near you, they can offer other support too – have a look at their website

Rally for fair fertility funding

It was great to be able to attend the rally at Westminster this evening organised by Fertility Network UK as part of their Scream4IVF campaign to try to push for fair funding for IVF based on the NICE guidelines, which conclude that it is both clinically effective and cost-effective to offer three full cycles of treatment to eligible women who are under the age of 40.

There were a range of excellent speakers at the rally including Fertility Network UK’s Chief Executive, Aileen Feeney, and London Organiser, Anya Sizer. They were joined by Paula Sherriff MP, Steve McCabe MP and author and Director of Fertility Fest Jessica Hepburn as well as Damion Sizer giving a male point of view and the brilliant Hope Sizer talking from the perspective of someone conceived by IVF.

It was an inspiring rally, and ended with some of the recorded screams (which were very loud!) and an opportunity to Scream for IVF ourselves. If you haven’t already signed the campaign petition to get a parliamentary debate on IVF, it’s not too late – you can find it here 

World Mental Health Day, and why it matters to fertility patients

Today is World Mental Health day, and a good time to think about the mental health impact on fertility problems, tests and treatment. All too often, there’s an attitude from those with no experience of infertility that it isn’t a really serious problem, and yet anyone who has been through this themselves will be only too aware of the way it can impact on your health.

A survey for the patient charity Fertility Network UK and Middlesex University found that respondents reported feeling sad, frustrated, fearful and worried, out of control and helpless most of the time. They often felt stressed, tearful, inadequate, angry, isolated, despairing, depressed, guilty or shamed and experienced low confidence and concentration and a loss of sex driven. They also felt unsupported. Even more alarmingly, 42% of respondents said that they had experienced suicidal feelings.

If you are going through treatment and are finding it tough, there is help and support out there. The patient charity Fertility Network UK offers free group meetings around the country where meeting with other people going through similar experiences can be hugely helpful, and have a support line and online forum too. The British Infertility Counselling Association has a host of specialist counsellors ready to help with emotional support, and you can also talk to your GP if you are feeling in need of counselling. Don’t suffer alone.

Scream4IVF

I am sure you will all be aware of Fertility Network UK’s Scream4IVF campaign, aimed at ending the postcode lottery for IVF treatment. If you haven’t signed the petition yet which calls for a parliamentary debate on the subject you can do so here. The charity has been asking people to donate their scream on social media to give a voice to people with fertility problems and allow their frustrations to be aired. The screams will be collated to form the world’s longest scream for IVF to be played at a rally outside Westminster. The charity is encouraging people to join them at at the rally which takes place at Richmond Terrace at Westminster on October 10th from 5pm to 7pm.

What do you think about egg freezing?

There has been quite a debate about egg freezing after a call for the NHS to offer egg freezing for women of 30 to 35 as an insurance policy for their future fertility – you can read more about it here. Although the suggestion was supported by the patient charity Fertility Network UK, others didn’t agree, and Lord Winston warned that he felt women risked being exploited by the suggestion. The Royal College of Obstetricians and Gynaecologists has also called for caution where social egg freezing is concerned. It’s an interesting debate.

Perhaps freezing eggs might for some women save future heartache, but it’s still far from guaranteed that taking this option will result in a baby in the future. As anyone who has experience of IVF knows, having a good stock of eggs doesn’t bring any certainties, and women might need to go through a number of cycles of freezing to have eggs for the future. But could investing in egg freezing save the NHS money in the long run? An egg freezing cycle is essentially the same as an IVF cycle but split into different stages – so you are still harvesting eggs, fertilising them in the laboratory and then replacing them into the womb at a later date. So might you actually end up paying for IVF for women who might not ever need it? The reality is that the majority of people pay for their fertility treatment themselves, and perhaps sorting out the postcode lottery of funding for IVF in England would be a better first move as this is a medical treatment for people who have fertility issues, rather than a medical treatment for people who are trying to insure against having difficulties in the future.  What do you think?

Finding Joy Beyond Childlessness

Last week, I had the honour of interviewing Lesley Pyne about her new book, Finding Joy Beyond Childlessness, at her book launch. Lesley went through six rounds of IVF, and spent many years feeling defeated by the experience of living without children – but eventually realised that stuffing her grief into a box and trying to keep a stiff upper lip wasn’t working. Finding Joy Beyond Childlessness is Lesley’s guide for anyone experiencing involuntary childlessness as she takes you through the process that allowed her to discover the happiness on the other side. There’s no short cut to this, and you have to let yourself experience the grief and sadness to come out the other side, but Lesley is a living testament to the fact that this works – and that there is joy to be found,

It was great to see so many people there for the book launch, including the team from Fertility Network UK (Lesley is pictured here with Fertility Network UK Chief Executive Aileen Feeney) and fellow author Jessica Hepburn.The guests included many of Lesley’s friends from More to Life, the part of Fertility Network UK which works with those who are living without children. It was a testament to those lasting friendships that Lesley – and many others – found through the organisation to see so many of the group Lesley first met when she first joined Moe to Life still there and offering their support.

Lesley’s motif is a butterfly and the tables of books were also covered in piles of beautiful butterfly biscuits, carefully colour-coded to match Lesley’s book cover and website.

Lesley works as a coach, supporting others through childlessness, and you can find her guide to a more fulfilling life in the book Finding Joy Beyond Childlessness which is available in paperback and for Kindle, and you can buy it via Amazon.