By Fiona Bromelow, long standing F.E.A.S.T. Volunteer and ATDT Moderator
I did my first bit of full-blown, public advocacy under my own rather than an assumed name in 2007. I can date it exactly as I petitioned the Prime Minister of the UK. I sent off the signatures to “Tony Blair” and got a reply from “Gordon Brown”. I don’t regret the petition. It was general and fluffy in a “please sir can we have some more” sort of way and got a “the Government cares a lot about young people” answer. I was aware that the process was weak, but I met a lot of people, worked collaboratively with patients, parents and professionals, and got a response. Those were the days when we still remembered, even if with some irony, that “things can only get better”. I honestly believed that improvements might be made, starting with services for those “young people” and maybe eventually for everyone with eating disorders.
I continued to campaign and show up; most of it was personally enriching, and I think, did a little good. I do regret one letter. Again it was to a Prime Minister. I cosigned a letter to David Cameron asking directly for funding for Family Based Treatment.
Our family failed to make a success of FBT. We found the pressure on us to use skills we didn’t have as the only way to save our child from a potentially fatal illness terrifying and isolating. We needed more.
That is not why I regret the letter. Early intervention with effective treatment is vital in eating disorders. FBT is a fully evidence-based treatment that has helped thousands of people. No treatment for anything is ever 100% effective or without risk of side effects. That is not a reason not to make a treatment widely available.
There are two reasons why I regret writing. The first is that it was signed, not by me as an individual, but on behalf of FEAST. FEAST is a “global support and education community of and for parents of those with eating disorders”. It is committed to evidence based treatment of eating disorders, not to ONE evidence based treatment of ONE eating disorder. The organisation can sometimes be seen as being for parents of patients under 18 with AN using FBT. It is far wider than that. Only this week in the UK, FEAST parents have been working with patients, the press and the Royal College of Psychiatrists on issues as diverse as pro-Ana on social media and the reform of the Mental Health Act. Around the world parents are offering each other support and information and working collaboratively with others to improve outcomes for all.
The second and more important reason for my regret is the language that we used to argue for the treatment. We encouraged the government to look at how much money they could save on hospital admissions and long term care if they invested in this form of treatment. It’s true, early effective intervention DOES save money. Much more importantly it can save years of suffering for the individuals involved. However, even if this treatment was the only one in the history of medicine to be 100% effective and never to be contraindicated, providing it requires significant and continuous investment in training and support of services, not just a one off pay out. Even if it was rolled out, fully supported and funded, there would still be individuals who weren’t identified early enough, people suffering long term who never had the chance of it, cases of relapse and late onset. People WILL need inpatient treatment with fully trained staffing, psychiatrists providing medication, dieticians, day patient treatment, respite care. Despite the wonderful efforts of some remarkable scientists, the field desperately needs more research. The letter was written, not at a time when things could only get better, and the government was willing and able to fund it, but at a time of Austerity. I don’t think David Cameron really based any of his decisions on letters from the public, let alone ours, but I regret having bought into the mindset of penny pinching in any way.
I don’t know if I will write any more letters to Prime Ministers. In the last 18 months I’ve moved to Scotland so if I want to campaign it may be with the First Minister instead. If I do I’ll be less polite and more insistent. Please Sir or Madam we DESPERATELY NEED MORE NOW.