Eating disorders' services review in Wales

by guest author Helen Missen

Powys resident Helen Missen, a passionate advocate and voice in Wales for change in mental health services, particularly those provided to people experiencing eating disorders, has been closely involved on the panel for the recent Welsh Government Eating Disorders’ Review. She tells us more about it. 

Eating disorders continue to have the highest mortality rate of any psychiatric diagnosis, across the world. They are often thought of as difficult to treat, though with early intervention, evidence shows a good chance of recovery. 

In Wales, and especially Powys, early intervention with specialist provision is still underwhelming. After my daughter became ill with Anorexia nervosa in 2009, I realised there was an urgent need for change. As well as a petition to the Welsh Government, I started to learn as much as I could about eating disorders and services, in Powys, Wales, the UK, and internationally.

When you, or a loved one, has something as complex as an eating disorder, the frustration of constantly going to somewhere like Child & Adolescent Mental Health Services (CAMHS), or adult services, where a couple of days of training does not make the staff experts, is demoralising.

It’s a bit like taking someone with a heart attack constantly to the GP and them saying – "I’ve read that in the book, I know this is what you’re supposed to do, but I don’t have any of the skills to do it."

Generally, a referral to the specialist is the norm in physical health. In mental health, a couple of training sessions deems a clinical provider a specialist. That, for parents and carers, and those with a diagnosis, is very frustrating. As well as dangerous.

The 2009 Framework for Eating Disorders was established by the Welsh Government on behalf of services. It was deemed at that time, that there was too little specialist input for eating disorders in adult services. CAMHS were, and are still thought to have enough generic help, something that does need to be changed.

Mental health eating disorder services are tiered from Level 1 - GP / school nurse / health visitor, to Level 4 - inpatient services. As a result of the framework four specialist adult eating disorder teams were set up at tier 3 level across Wales – one in the North and three in South Wales. Powys is covered by both the North and South teams at the moment. £1 million pounds recurring was given to those four teams, which obviously isn’t a great amount.

The four teams are run by psychologists and specialist trained nurses, with a couple of psychiatrists overseeing CAMHS but not necessarily in adult services. Clearly still underfunded, and with too few specialist staff at tiers 1 & 2, the strain on staff and patients continues.

My involvement for change began when I submitted a petition in 2010. The petition called for equal funding for CAMHS provision as there was for adult services.

It is well known that eating disorders generally start in the teenage years, around puberty. Although increasingly they are being diagnosed earlier and occasionally they may not present until later in life.

That petition is still running.

Unfortunately, services in Powys are very similar to how they were 10 years ago when the petition was first submitted, which is very frustrating for me. I have worked very closely with the eating disorder groups across Wales, and sit on Boards nationally and internationally. It grieves me that Powys hasn’t moved on in that time.

However, things are changing! 

In 2016 Public Health Wales was commissioned to do a refresh of the 2009 framework. Out of that came the recommendation that there should be a review of the Eating Disorder Framework.

“There now needs to be another major reconfiguration to move to align the service with the new emphasis on working seamlessly across agencies across Wales in the interests of promoting wellbeing and emphasising timely and effective early intervention. This is also to align with recommendations and directives in the NICE (National Institute for Health & Care) guidelines for eating disorders (2017), the Wellbeing of Future Generations (Wales) Act 2015 as well as multiple documents emanating from the Welsh Government in related arenas." 

The refresh came from Vaughan Gething, Minister for Health & Social Services, who commissioned Professor Jacinta Tan to do the review on behalf of the government. Professor Tan is a child and adolescent psychiatrist as well as an academic. She has a great heart for the children and families who suffer with eating disorder.

I was invited to be on the core team selected by Professor Tan, to help her gather information from the public. 

Unusually, for this type of large piece of government work, Professor Tan decided that to hear from the public first would provide the most important underpinning for the review. By holding four public workshops across Wales, one at each 'corner' of Wales, with a team of lay people who were representative of service users and carers facilitating the days, she was breaking new ground in the pure sense of providing the voice of the people.

The question Jacinta posed each day was: "what would be your ideal service?" which for any carer or person with an illness to be asked was quite monumental; a game changer in a way. Following the question, Professor Tan stood back and the day was run by the core team, with no input from clinicians. Never were the groups led in what to say... it was complete freedom. There were horror stories, and good stories.

Those workshops attracted carers, patients, people with lived experience, and a men’s group to hear partners’/ husbands’ / brothers’ perspectives. It was fascinating to listen to and be involved in.

At last people were given a voice.

By the end, all four workshops illicited very much the same pattern of what they wanted. The themes that ran throughout were: there are things that are really working well and amazing people doing the work, however, there are not enough specialists and very little specialist early intervention.

The underlying principles which people wanted:

1. 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.
2. 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.
3. 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.
4. Relationship based.
5. Recovery focussed.
6. Trauma informed.

There were 22 recommendations made by Jacinta which the government has taken on board. The entire 300 page paper has been sanctioned.

What does this mean for Powys?

The Health Secretary then wrote a letter to all the health boards in Wales, of which Powys Teaching Health Board is one, citing four recommendations to be upheld. Each health board had to give their strategies on how they will enforce the changes he requires:

1. Consider the review, provide feedback and identify where key incremental changes could be made to ensure that longer term service planning can align with the ambition of the review.
2. Work towards achieving the National Institute for Health & Care (NICE) standards for eating disorders within two years.
3. Develop plans to achieve a four week waiting time across adult and child services recommended in the review within two years.
4. Reconfigure services towards earlier intervention.

These submissions had to be on Mr Gething's desk by 8 November 2019.

One of the recommendations from the Health Minister is that the borders between health boards are to be grey areas. As it stands, there is too much financial segregation between health boards. If one health board has a service that may or would benefit patients in another health board, it is not necessarily shared across the invisible (to the public) borders. Therefore, the current system is not not bringing the best care to all members of the public.

Betsi Cadwaladr University Health Board in North Wales, for example, has an early intervention team (SPEED) created specifically for children and adolescents. It is a multi-disciplinary team that assesses and then treats people with very early stages of an eating disorder in that area. This approach ensures substantial financial savings for a health board, and years of suffering could be avoided for the person with a potential eating disorder.

The CAMHS team in Aneurin Bevan University Health Board in south east Wales is also setting up a new SPEED team.

Under the current system in Powys, children are not referred to this vitally important specialist team early enough in the onset of the illnesses. 

I would encourage the CAMHS representatives in Powys to dial into the SPEED teams quickly. To start working without borders.

Early intervention gets people out of an illness, and into recovery, avoiding the entrenched state which can then last a lifetime. It is known that with eating disorders there is always time for recovery.

I know personally, and also from hundreds of people across the world, that to ask for and demand the specialists, to not be frightened to question the system, does bring about better treatment and best practice.

It works both ways!

Don’t be too proud to ask for help from expert sources outside Powys, be you a clinician, carer, or someone living with an eating disorder. Until my daughter got sick I had very little understanding of eating disorders. As with many diagnoses: until you’ve lived it you don’t understand how life changing it can be.

I have become an expert by experience. Though, for all of the experience I now have on both sides of the proverbial table, I do wish I had never come across eating disorders.

Would I do it all again? Without a shadow of a doubt. Changing a system takes time.

A small stone makes a large ripple. 

Further help

F.E.A.S.T is a national organisation providing help and support to parents, carers and significant others in the lives of people who have eating disorders.

BEAT is the UK’s eating disorder charity.

Anorexia and bulimia care is a national UK eating disorder charity.