For the last 10 years I have worked with patients facing the struggles of infertility and today remain as passionate if not more so than ever that support needs to be foundational to every person’s experience.
I have seen time and again the overwhelming wave of grief that almost inevitably hits someone as they grapple to understand the primal loss inherent in such a diagnosis.
Infertility has the ability to cut to the very heart of who we are as people and to challenge our vision of the world in seismic ways.
I have seen this repeatedly over the years in couples with unexplained issues with male factor female factor single women and same sex couples and indeed anyone grappling with the enormity of those throwaway words: “There is a problem“
For myself personally there was a 6-year battle with infertility which tested my own reserves and pushed our marriage in ways I never could have anticipated.
People often talk of the highs and lows of treatment and yet I can honestly say there seemed so few highs in a journey of many MANY lows. I constantly felt as though under the shadow of a grey cloud, a cloud that imbued everything with a sadness and hopelessness.
'It is little wonder that the incidents of depression remain so universally high for those in this situation'
Every area of life was challenged. Relationships with others were sorely tested with many people being more supportive than I could have dreamed, and yet sadly many not being able to comprehend the extent of the grief we were bearing. Socially we often retreated unable to cope with pregnancy announcements, baby showers or even at times just other people’s happiness. I have seen almost without exception every couple struggling to cope with the hurts in differing ways and at differing times
Indeed, in a recent survey for Fertility network and Middlesex university 70% of people reported problems within their relationship and 90% of people reported experiencing feelings of depression. Perhaps even more alarmingly there has been a steep rise in those people reporting feelings of real hopelessness with 42% of respondents admitting to suicidal feelings.
It is this awareness of the enormity of the issues that has pushed me into working in this field first in a clinic and now as regional representative for the Fertility Network
Patient care and the ability to proactively practice self-care when facing infertility is central to surviving
For many people facing such a massive medical diagnosis it would seem only logical that a medical treatment path should be automatically offered to all who are eligible and in need.
Indeed, the NICE guidelines state that if you do meet criteria, all people should be offered 3 full cycles and subsequent fresh transfers. This has been shown to provide the best prognosis to patients both medically and indeed financially.
More recently during a Parliamentary debate organised by MP Steve McCabe Nicola Blackwood under secretary for health summarised: “It is entirely possible to implement the NICE fertility guidelines in full. I would strongly encourage CCG to implement NICE fertility guidelines in full.”
However, for the 1 in 6 couples currently facing infertility there is often an added issue of who will fund their care. The NICE guidelines for the majority of patients remain unable to really impact their ability to access funding.
The aforementioned survey indeed estimated that approximately 54% of patients would have to self-fund due to lack of provision with the average amount being around £11-12,000.
Overall the majority of CCG’s, a staggering 98% don’t currently fully adhere to the guidelines. IVF is seen as an easy cut when budgets are tight and individual criteria imposed on residents that are often arbitrary and confusing.
To tell a couple who have been trying for two years and then have had to wait for months on the NHS that their funding has been pulled seems to be enormously cruel and unfair.
To tell a couple who have had years of initial tests on the NHS that their one cycle of funded IVF is no longer available only adds to the overall distress being faced. This is the reality faced by patients on a daily basis throughout the UK.
It is little wonder then that the incidents of depression remain so universally high for those in this situation.
There have however recently been a few glimmers of hope.
One example of which is the recent debate in Parliament called for by MP Steve McCabe to discuss the provision of care
The day came as a reaction to Mr McCabe listening not only to the voices of his constituents but also to the many people who got involved with a pre-debate Facebook discussion.
As a result of this debate Nicola Blackwood has promised to write to NHS England calling on all CCG’s without exception to adhere to the guidelines for all who should be eligible.
At Fertility Network we have also set up the first national day of action to call for Fair IVF provision. We have called the campaign “The right to try “as we strongly believe that although it may be debatable that everyone has the “right “to a child they certainly have the right to try.
We have purposely picked the date of March 25th as it is the day before Mother’s Day. So often this is the hardest in the calendar for those trying for a family. It is also the day of the Fertility show in Manchester a day when thousands of patients will be seeking guidance and support.
Calling for a day of action on that date will we hope enable people to not feel quite so isolated or forgotten but rather part of a group of people that are deserving of full medical support and help.
We are asking for people to do three things on this date
Write to their MP asking them to use their voice in Parliament to represent this community
Sign up to a Thunderclap, a mass Tweet to be sent out at 3pm on the day calling for change
The Right to Try campaign is about representing the thousands of people facing this life changing event with unfair provision of support.
It is about moving away from Soundbite headlines in the media and lack of awareness in society in general to the reality of many people’s daily experiences.
Our hope is that it is part of a movement that sees change and allows people to deal with the unfairness of infertility without battling the unfairness of financial inequality.
Anya Sizer currently works as the regional rep for the Fertility Network in London but has been in the sector for 10 years , including 6 and half at London women's clinic and 7 years running a central London support group
She is also a champion for the Saying Goodbye Charity and Home for good charity as well as a mum of two IVF children and one adopted child
Anya is passionate about the need for support and care for those facing fertility issues and for campaigning for fair access to IVF provision for all