New Eating Disorders' Services for Powys

A Happy New Year to all our readers! 

Just over a year ago one of our Powys citizen reps, Helen Missen, (pictured above) a passionate advocate for improved Eating Disorders' services, wrote about the Eating Disorders’ Service review in Wales which had just taken place.

Roll on twelve months, and so much has developed in Powys as a result of this review (you can read the Executive Summary). At our mental health partnership board meeting just before Christmas we were very pleased to find out more about the new services from our colleagues at Powys Teaching Health Board along with Dr Jacinta Tan (Consultant Child & Adolescent Psychiatrist at Aneurin Bevan Health Board) who led the Review Team, Menna Jones (newly appointed National Clinical Lead for Eating Disorders) and Helen.

The underlying principles which people wanted

• Early detection and intervention. Helping people, like teachers and parents, to identify people who might have an eating disorder to have access to support and help.
• Inclusivity. Never turn people away. Anyone in distress who thinks they are, or a loved one who might have an eating disorder, deserves a response.
• To be person-centred. To have prompt expert help for those who might have eating disorders. Giving people what they need and trying as far as possible to deliver it to them where they are. To provide person-centred and holistic care for the person and the whole family.
• Relationship based.
• Recovery focussed
• Trauma informed.

In total there were 22 recommendations made by Jacinta which the government took on board. 

Where we go from here

Eating Disorders’ services were highlighted, as one of five key areas, for additional funding from the Welsh Government’s Mental Health Improvement Fund. There was a specific focus on Early Intervention as an area which the government wanted to prioritise. The first funding stream came through in Summer 2019 and coincided with a large consultation with clinicians across Wales looking at the response to the recommendations as well as some of the barriers that might come up.

In January 2019 it was announced that there would be a dedicated post created to take some of this work forward – a National Eating Disorders’ Lead in NHS Wales. Menna Jones officially started in this full-time role, the first of its kind for Eating Disorders, on 1 January this year, with the placement due to continue until March 2022. Menna’s role will be to work with clinicians, and those using services, to set up an Implementation Plan which sets long-term goals for improving services based on the Review’s recommendations and also facilitating changes to happen.

Some of the key areas include: early intervention, moving to increased delivery of eating disorder services by specialist teams, creation of physical health clinics within Community Mental Health teams, and to join up Child & Adolescent Mental Health Services (CAMHS) and adult services – looking at transitions but also at what can be learned from each of these services around models used and approaches to work.

The vision of the service review

Jacinta emphasized that the plan will focus on equity of access to specialist and high quality care across Wales, including in rurally isolated areas of large parts of Mid Wales such as Powys. There will also be joined-up working with other teams – patients are complex, they have many needs, they have comorbidities (the presence of one or more conditions at once) and it is important to interface with other services such as Autism services. In promoting specialism Eating Disorders Services will not be pulling away from the rest of the system.

The lived experience view from Helen

"From all mental health conditions eating disorders still have the highest mortality rate of any and that needs to be at the forefront of people’s thinking. I started advocating for families because I just didn’t want them to go through what we went through 11 years ago. I now sit on the Executive Committee for the Royal College of Psychiatrists’ Eating Disorders faculty and the European Board for the Academy of Eating Disorders. I really believe in change. I believe we can get it right in Powys. And I know (from my daughter’s experience) that recovery is possible." 

Plans for Powys 

Sam Shore – Head of CAMHS

Currently CAMHS has an eating disorder element to the service already, including specialist practitioner support and our own CAMHS dietician as well as support from psychology. Each CMHT does have a link eating disorder worker who will give advice to anyone open to adult mental health services and support any new referrals into the service.

Practitioners link with GPs for support in the first instance if someone’s physical health is deteriorating.

Following receipt of additional funds, however, we now are going to develop a specialist Eating Disorder Service, which is going to be an age-less service. We want to address issues such as transition and early intervention. We will be working more closely with GPs in Powys, and looking at our referrals into the service.

Following receipt of funding the following new posts have been created and we will be recruiting very soon:

• Team leader.
• Specialist practitioner.
• Dietician.
• Occupational therapist technician.
  
  

We’ve been working closely with Helen too and listened particularly to her tips and hints on moving forward. So we have an idea of what the new service will look like in terms of family intervention and family work. Menna has also offered to support us in the development of the service.

Whilst normally we would have 4 – 5 on our caseload we are actually working with 20 children and young people at the moment (mid December 2020). Covid has had a massive impact on the referrals and they are very complex – there are significant physical health issues, family dynamic issues and cases of anxiety as well as eating disorders.

Joy Garfitt – Assistant Director Mental Health & Learning Disabilities' Services

The model we’re going for is a small dedicated team of specialists who can link to the national Eating Disorder team. Within our five CMHTs and our CAMHS teams we have a small nucleus of specialism, whilst others practice as general mental health practitioners, so we’re creating a staff team which has a general mental health practice element to their role and a special interest element to their role. The special interest might be eating disorders, or perinatal, or trauma-informed services. This means that community psychiatric nurses, and social workers in the field, can also access that specialist support locally in Powys. We can’t provide an eating disorder service in every CMHT as might happen in a big city, so that’s why we’re looking at a different model. 

All in all it was great to hear the enthusiasm and commitment to reshaping Eating Disorder Services, not just in Powys, but across Wales, and we look forward to receiving further updates as the new team settles in and starts work.

Do we need a change for treatment into Eating Disorders?

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.

There is every confidence that someone with anorexia and breast cancer, can and will recover from the devastation it wreaks on families and individuals. Anorexia and many eating disorders may lead to hospitalisation and intense treatment. Uncomfortable and distressing as it is, this treatment will lead to recovery for the majority. Chemotherapy is, I understand, distressing and uncomfortable in the side effects it induces, but necessary for full health.

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