By guest author Helen Missen, from North Powys
Recently I have been in an NHS system that works incredibly effectively - is a gold standard as far as the way it runs - and is evidence based.
9 weeks ago Breast Test Wales called me for a routine mammogram (I'm 50 at the end of the year). Within that time frame I have had two biopsies, many explanatory leaflets and a number of incredibly supportive phone calls. I have had consistency of care, from what I suspect are the team who will, in the event of a dodgy result, care for me long term. I have a sketchy and limited knowledge of breast cancer, one borne from a nursing career and a lot of media input. I shall, of course, read extensively and take advice from others if all goes tits up. I know, without a shadow of a doubt, that I will have evidence based, effective treatment. After all breast cancer can be a killer.
Six years ago my knowledge of anorexia was as my knowledge of breast cancer is now. I had nursed eating disorder patients during my training as a nurse on the psychiatric ward, and had heard everything that the media had falsely 'fed' me. Evidence for the treatment of anorexia was sketchy and not effective. Parents were still blamed for their child's illness.
Six years ago our family were beginning the journey with my daughter, who was then 15, down the slippery slope of anorexia nervosa.
I learned that anorexia remains the most deadly of all mental health/psychiatric disorders, killing either through malnutrition which leads to heart failure, or suicide.
I learned that neither my daughter nor we were to be blamed for her illness; this was neither a choice, nor anything we had done to cause it.
I learned that even though my daughter is a high achieving perfectionist, a good girl, those very strengths of character were her downfall, but are also her strength.
I was scared, we were scared. Seeing our daughter taken over by an illness that seemed to be killing her in front of our very eyes. As with many mental health disorders the sufferer fights a daily mental battle against their own brain which tells them that eating will do them serious harm. The trouble is when it's a fear of eating, one cannot be encouraged to 'give up' something or have a 12 step model to follow.
Anorexia is now widely acknowledged to be a biological brain disorder with genetic components to it.
The treatment is now evidence based: early intervention is key to a good recovery and full life. The medicine is food. Alongside therapy to learn strategies and tools to deal with emotions that fuel and nourish this terrible illness, there are some useful drugs.
As the brain starves the thought processing is out of control. Once full nutrition is in place the starved brain can once again function and process information through some therapies. There are many co-morbidities that go alongside anorexia, that may have some respite once the starved brain is re-fed.
We became the primary care givers, not because of the advice of the professionals assigned her at the time, but by researching the latest evidence, which is now the norm for treatment of anorexia in children: Family Based Therapy (FBT). We supported refeeding our daughter. Encouraged full nutrition of a variety of foods, and challenged the fears associated with food. Plus we worked alongside therapists and our daughter. Research is currently being carried out by The Maudsley Hospital in London (SLAM) to the effectiveness of a version of FBT in adults, with promising results.
Our daughter felt in control at the beginning of this journey, but quickly realised that she is out of control in an illness that once entrenched, is tough to fight.
With breast cancer, there are regular check ups. Watching for signs of the disease returning is the norm. The care is by a team of highly trained specialists, a breast surgeon if required, and a team of nurses, radiographers and radiologists who specialise in breast disease.
Sadly the follow up, and in fact the treatment for anorexia and many eating disorders, remains sketchy.
The fact that someone is suffering from a killer illness doesn't necessarily mean that treatment will be continuous or under the care of a specialist professional with years of experience in the field of eating disorders. Generally, for an adult, a six week course of treatment with a psychologist, perhaps a GP but seldom a highly trained specialist psychiatrist or dieticians in the field of Eating Disorders, is the norm.
Passed from pillar to post many adults are consigned to treatment that is in a grey area. Not sick enough to be hospitalised, generally suffering with the inability to realise how ill they are, and regularly not challenged to put on the weight their brain needs to sufficiently function to make a full recovery. Throw in a change of address, say to university, and the treatment becomes even more difficult. Outdated beliefs by professionals still falling short of the evidence that is readily available, shortened therapies and no continuity by expert therapists.
This is a relapsing illness which needs strong people, alongside the sufferer, to see them through what may, and generally is, a long recovery process. There are triggers that can cause a trip up in recovery.
Families, and indeed sufferers, become demoralised and tired. They need consistent and trusting expert therapists to stand alongside, firm in both the belief that recovery is possible and that the person suffering with this horrific illness can and will make it through.
We live in a forward thinking, scientific world, with resources and evidence to show that early intervention is the key to treatment. Sufficient support and encouragement, plus working to full nutrition to a point whereby a brain can sufficiently heal, (not a lesser 'number' for the purpose of professional targets), takes time and energy from all parties.
Thankfully, in the past six years, treatment in Wales for young people and children with anorexia is beginning to be treated effectively with pockets of incredible expertise. Indeed, the Welsh Assembly has one of the most thorough Frameworks for Eating Disorders, and is about to refresh it to include thoughts/actions from both sufferers and carers. A child diagnosed with anorexia now may have access to the treatment and care to see them out of the darkness and into a life fulfilled and lived. Adult care is also overseen by the framework and in some geographical areas there is occasional expertise. Unfortunately, though, many sufferers are still consigned to little or no expert help.
The media are beginning to realise that this is a treatable illness, not necessarily characterised by the photographs of immensely thin people or a set of scales.
As a mother of a daughter still suffering from anorexia I continue to fight the illness, support my daughter, and try to illicit the best possible care for her. Thankfully she has reached recovery on a number of occasions. Sadly, those occasions have generally brought around a 'backing off' of professional care, and thus a relapse. I also encourage other families starting out on the journey, signposting them to expert advice and evidence based treatment. I help to change policies and teach both professionals and families alike. I badger parliament both in Wales and in England, and I hope and pray for my daughter’s total recovery, for a breakthrough for her, and others in the same place as she is.
A gold standard NHS treatment for Eating Disorders is still not in place, but within the next few years I hope it will be. Certainly for my grandchildren the care and understanding for people with anorexia will be far more hopeful with new therapies, drugs and research already making great strides. I hope too for a new batch of GPs, medical students and indeed the public to have a greater awareness and teaching about eating disorders, especially anorexia.
For the time being I am pleased to say that the results from Breast Test Wales have been that I need no treatment and have the all clear.
Helen’s recommended resources
F.E.A.S.T. – Families Empowered and Supporting Treatment of Eating Disorders
Anorexia & bulimia care
Beat – the UK’s eating disorder charity
Family Based Therapy – the Maudsley Approach
The New Maudsley Approach – for professionals and carers of people with eating disorders
Books to read
How to Help your Teenager Beat an Eating Disorder, by James Locke and Daniel Le Grange
Skills based Learning for Caring for a Loved One with an Eating Disorder – the New Maudsley Method by Janet Treasure
Anorexia Nervosa by Janet Treasure and June Alexander
Anorexia Nervosa: a Survival Guide for Families, Friends and Sufferers by Janet Treasure