By Helen Missen, F.E.A.S.T. Mom, Board Member, and Global Task Force Liaison
Who, me? An advocate? Never!
At a certain point during my then 15-year-old daughter’s eating disorder treatment, I realised that the care that she was receiving was not up to date, evidence based, nor frankly, safe. Being a nurse, I reckoned I really understood what being a patient, or even the family of a patient, meant. Spoiler alert: I really didn’t! Being on the wrong side of the table there’s this odd feeling of imposter syndrome, a whiff of fear, and a touch of feeling as though I may have done something wrong!
I had a choice: I could either stick my head in the sand or I could do something. I guess it was at that point that I took on the title of both “carer” and “advocate”.
I rang the head of health services at the Welsh government, the first of many (many!) calls to them, demanding a dietician in our area. Yes! I was naive, and yes; it got results. I like to secretly believe that they have an official red phone with my name on it.
Realising that I had a voice, and actually could bring about change, got me started on the path of advocacy.
In Wales, the Government had created 4 specialist eating disorder services the year before my daughter was diagnosed. A million pounds, ring-fenced, and recurring for adult services. The children’s services Child and Adolescent Mental Health Service (CAMHS) had not been given anything. This seemed hugely unfair and discriminatory.
In Wales, you may petition the Government on any subject, and if you garner more than 10 signatures in support, your petition will be heard by the Petition Committee. Ten years on and £750,000 later, the petition has had the effect of both monetary gain and a significant change in policy for the country. A service review was commissioned by the Minister for Health in 2017, and released, with ALL recommendations sanctioned. The service review was researched and written by Prof Jacinta Tan, one of our FEAST advisors.
The petition is, by all accounts, one of the longest-running petitions, and has officially just ended. Within those 10 years, I found myself responding bi-annually to the petition committee, having to give evidence in person against the Health Minister for Wales. Plus, I found myself sitting on committees for Eating Disorders across Wales.
I realised that I was enjoying being an advocate. Essentially I was saying the same thing over and over again; however, I found different poetic, descriptive, and occasionally amusing ways to get my point across.
They say that it’s the squeaking hinge that gets oiled. That’s what advocacy is: the squeaking hinge.
If what you have to say makes sense, in a short format, with a pointer to what you expect, then you will get oiled. Don’t rant, do be measured and persistent. Believe in yourself. In those ten years, I only once told our story, and that was around 5 years in, as a qualifier. I advocated on a higher platform than the one person, one family, one story. Governments think strategically and big, in that vein we need to as well. Your story is one of many, mine is too. However, the place for emotion is only occasional; the need for understanding about what you are expecting is paramount.
At the end of the day I’m just a mum…give yourself whatever title you want, or none. I chose to be untitled, though I do believe in being present, articulate and ready to question the status quo.
If that’s advocacy, then I’m a paid-up member! There are no special requirements, you just have to roll up your sleeves and get started!
Just as I didn’t sign up for my daughter having an eating disorder, neither did I sign up to be an advocate. Just as her illness became a part of our lives, so has advocacy. If you’re reading this and thinking ‘that woman has deffo got all her pegs in order’, think again! You too are able, talented, and good enough to do what I’ve done, with exactly the same amount of caring!
If you would like to learn more about becoming an advocate in your region and joining F.E.A.S.T.’s Global Task Force for Regional Action, we would love to welcome you aboard!