Celebrating International Women’s Day

It’s International Women’s Day and a good opportunity to celebrate some of the things that women do for one another in fertility. I was thinking of some of the women who have done and continue to do so much to change things in this field, and wanted to thank a few of them.

The first is Clare Lewis-Jones, the former Chief Executive of the charity Fertility Network UK. Clare led the charity as it grew in size and influence and was a presence at every fertility conference and event, reminding professionals of the need to think about the patient perspective. She championed the cause and helped to change the way people think about fertility, removing some of the stigma and encouraging us to talk, in part by being open about her own fertility story. Clare was awarded a much-deserved MBE for her work and was a real inspiration to me.

The second is Jessica Hepburn, who wrote a book about her own experiences of fertility problems and treatment and who went on to set up Fertility Fest. Jessica is an amazingly inspiring person who has swum the Channel and is now running the marathon to raise funds to help to support other people going through fertility problems. She has spoken widely and openly about how it feels to have unsuccessful treatment and has enabled many other people to talk about this.

My third is someone you may not know. She is called Diane and she runs the support line at Fertility Network UK. Diane is a nurse and has been answering calls and responding to emails from fertility patients for as long as I can remember. Every time I’ve suggested that anyone might benefit from giving her a call, they’ve been really touched by her kindness and helped so much by the support and advice she has offered. Diane has been at hand for hundreds of fertility patients on their journeys and is a real inspiration with her positivity and generosity of spirit.

These are just three women – there are so many more I can think of out there who are doing remarkable work to support and encourage, to inspire and inform. There are also all those women who support one another every day just by being there for each other, by showing their understanding and offering words of encouragement to their fellow fertility patients. The importance of that support should never be underestimated. Happy International Women’s Day to you all!

The truth about IVF funding

We have known that NHS funding for fertility treatment is patchy, despite last year’s NICE guideline which recommended that three full cycles of treatment should be provided for eligible women who were 39 and under.  Now, the first survey to look at how funding is working since the NHS system changed and Clinical Commissioning Groups (CCGs) were brought in has revealed the truth about what is really happening on the ground.

The comprehensive audit carried out by the National Infertility Awareness Campaign (NIAC) shows that 73% of CCGs fell short of the NICE guideline recommendation of providing 3 full cycles of IVF/ICSI to eligible couples. Of those that funded treatment, around 49% only offered one cycle of treatment, around 24% offered two cycles and 24% offered three cycles

Since April 2013, Clinical Commissioning Groups (CCGs) have been responsible for commissioning fertility services, replacing Primary Care Trusts (PCTs).  Apparently some CCGs are currently reviewing their policies on assisted conception, but many are ignoring NICE guidance and using social criteria set in place by PCTs to ensure that the number of people who qualify for treatment is limited.

Clare Lewis-Jones, chair of NIAC said: “It is now nearly 10 years since the original NICE guideline was published and yet here we are, in 2013, still facing a situation whereby the level of service is determined by postcode. Sutton and Merton, along with the CCGs covering the former North Yorkshire and York PCT, have all chosen to follow the policy of their predecessor PCTs, and are consequently offering no funding for IVF. 

 This report gives a snapshot of IVF provision across England during the summer of 2013; sadly many patients will find they are no better off than in 2011 when the last national audit of this kind was carried out. NICE’s retention of the three cycle recommendation in its updated guideline in February 2013 should send a clear signal to commissioners as to the level of service patients should receive.

Whilst we are pleased to highlight areas of best practice in our report, we are incredibly disappointed to learn that since we carried out the research several CCGs in the East of England have carried out a review of their services and are now considering a reduction in the number of cycles from the recommended three to two. Not only is this contrary to the NICE guideline and detrimental to the desired outcome of the treatment, but it also means we can no longer confidently hold up the region as a shining example to others.

 I acknowledge the fact that CCGs are still finding their feet but this should not prevent commissioners from acting on NICE’s latest guideline – which should serve as the basis for all future funding discussions at a local level. I hope they will use the information contained within this report to inform their thinking.”

NICE guidelines are based on not only what is clinically effective, but also what is cost effective, and it seems extraordinary that so many CCGs should be choosing to completely ignore them. We are meant to have a NATIONAL health service, but when it comes to fertility it’s still your postcode that is going to dictate whether or not you qualify for treatment.

 

Time for infertility to come out of the closet…

Do you feel able to tell other people about your fertility problems? For every person trying unsuccessfully to conceive who feels able to talk about it, there are many others who are uncomfortable discussing such an intensely personal issue.  Sometimes it’s the stigma attached to infertility that makes it hard to be open, sometimes it’s the attitude of others around them – and sometimes it’s just that it’s too painful to discuss.

Now, the charity Infertility Network UK has launched a campaign called Talking about Trying aimed at ending the secrecy and stigma surrounding infertility.  The charity hopes this will not only raise awareness, but will also give anyone who is experiencing fertility problems a voice and get people talking about infertility in an open and honest way.

The campaign was launched to mark the charity’s tenth anniversary, and Chief Executive Clare Lewis-Jones said;  “We are on a mission to end the isolation and secrecy of infertility — and we’d like you to be part of it! Over the past 10 years, we have had a huge impact on the lives of people trying to conceive.  But there’s still a long way to go and we need to move with the times and raise much more awareness of the pain of infertility – because it’s not going away”.

She went on to explain that many thousands of couples felt the need to keep their fertility problems under wraps, suffering alone, when in fact they could be helped by getting in touch with others who were experiencing similar issues, and concluded;  “It’s time for infertility to come out of the closet.”

I’m so glad Infertility Network UK have launched this campaign, because I felt extremely  isolated and alone when we were trying unsuccessfully to conceive.  I found it very hard to talk about it, and joining a support group made me realise how empowering it could be to get in touch with others who were in the same position.  It was only after my fertility treatment that I discovered two other people I knew were going through exactly the same thing at the same time – because none of us had felt able to talk about it, we all suffered in isolation.  That’s why I am delighted to back Infertility Network UK in their Talking about Trying campaign.

You can find out more about Infertility Network UK and the help and support they offer at www.infertilitynetworkuk.com