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.

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.

Type 2 anorexia – my experience

This week's guest post is by a young person living in Mid Powys.

Perfectionistic, body dysmorphic, obsessive and depressive are accurate words to describe anorexia. Six months in a psychiatric hospital suffering from the disease has proved this beyond question. However, the experience also revealed to me two different manifestations of the disease - characterised by varying degrees of the traits above:

Type 1, where the sufferer has a severely distorted view of their body and therefore exercises and starves themselves in the pursuit of looking ‘normal’. This is what most people perceive anorexia to be about, but I (and others in hospital) didn’t identify fully with this and hence believe there’s a second type. 

Type 2, where an obsessive routine of eating and exercise develops in order to avoid irrational consequences despite perceiving oneself as normal (perhaps slightly overweight). Here, the consequences could revolve around any aspect of your life but mainly around weight gain where the goal is to be thin - better than normal. Hence, those who identify with the second type are likely more perfectionist, academic and hardworking. However, they’re probably more at risk (due to these underlying personality traits) as it’s probably more dangerous to act on self-perfection than on self-perception.

The obsessive, perfectionistic roots of type 2 affect many aspects of the disease making it clearly distinguishable from type 1. In type 2, food itself isn’t an issue, the calories are (hence half the hospital chose to have liquid supplements and the other half had food despite being equal in calorific intake). Exercise is also more of an issue in type 2 than type 1 as it becomes built into a rigid routine and must be done to relieve anxiety (as opposed to accelerate weight loss). Type 2 anorexics are also more likely to be deceptive and compete with other sufferers to be perfect in other people’s eyes rather than just in their own to become the ‘best’ anorexic they can be. In this respect access to online material and social media create a competitiveness which likely makes many people’s condition worse. Finally, in type 2, anorexia cannot be separated as an entity from the sufferer (hence getting to draw/name it isn’t effective despite working well for type 1 anorexics). This is because for them the disease takes advantage of their personality traits and becomes an extension of them.

We should use our understanding of each type of anorexia to personalise the otherwise universal treatment plans. Personalised medicine is a hot topic in modern medicine. Gene sequencing and editing has allowed us to choose the treatments which we know will work best on patients. Why not extend this to anorexia?

Of course, the line between the two groups is blurred, but there are many instances where placing me into one of these groups would’ve helped mine and other sufferers’ recovery. Catching it early will inevitably reduce the likelihood of the disease worsening but recognising when further intervention (from Child & Adolescent Mental Health Services to psychiatric hospitals) is necessary is just as important. Taking away the choice by involving professionals is often the only way people too far into the disease can recover and increase their weight enough to correct the depression and distorted thinking associated with anorexia. 

Also, the incentives for recovery are blocked by body image or compulsions for type 1 and 2 respectively. We could therefore target these blocks differently for each type. Classical conditioning is used to treat Obsessive Compulsive Disorder (OCD) and involves patients doing what it is that causes anxiety (or not doing it in the case of a ritual). After being in a better mentality to do so, I decided to try it. I went home over a weekend and didn’t sneak off and exercise at all. That weekend was the only time my weight dropped during my whole recovery. My anxieties were practically gone from this point onwards. 

Finally, the qualities associated with type 2 sufferers can be redirected from weight loss to something beneficial. For me, I became very academic which allowed me to preoccupy myself and give enough incentive to remain fully recovered. Incentive is the key to the cure. Access to mental health services is the key to prevention.

After sharing my thoughts on service provision I’d like to talk about what it’s like to have been a male anorexic. I imagine that you’ve pictured a female through reading this blog and hope that you’re somewhat surprised that the author, the sufferer, is male. I wasn’t at all surprised to be told I had anorexia - I knew about the disease and could tell things weren’t right especially after comments from almost everyone I knew expressing their concern. I have a female twin and understandably my mother has since admitted she was always conscious of the fact that she could become anorexic. These were probably unconscious thoughts felt by everyone around me - I wasn’t expected to become anorexic and hence I was allowed to get progressively worse without it crossing anyone’s mind. I’m sure that this allowed my mind set to change and my weight to drop enough that the anorexia had developed into something that couldn’t be solved without professional help.

Unfortunately, I was taken to the GP surgery twice and both times was told that my weight wasn’t low enough to cause major concern. I was, however, referred to CAMHS on the second occasion. To an anorexic this was like being told you’re not thin enough. Furthermore, the naivety of the doctors to accept all that I said (that I eat lunch and have snacks, only exercise every couple of days and am still sociable and happy) prevented them from assessing me on anything bar the weight-age percentile I was in.

As a boy my original motives were also different to those of girls. At 7 and a half stone, I was plump and had innocent comment from friends and family saying the same. I thought I should try and lose some weight and gain some muscle (as mentioned, the muscle gain I wanted was impossible for a 12 year old). I started with cutting out food and exercising more and liked the results so continued doing this to greater and greater extents. The weight loss and routine consumed me - I lost friends and my confidence, my work suffered, my hair began falling out, my skin flaked away, I was constantly cold and remember dreading the thought of standing or walking because of how faint they made me feel - this is certainly a mental and physical disease. 

Waiting almost a month for an appointment with CAMHS gave me the time to rapidly worsen. I was lucky to have an exceptional psychiatrist - the best of many I’ve had since. However, weekly appointments with her were of little benefit and my weight continued to drop. A paper cut in class one day caused me to faint and have a small seizure which prompted my removal from school and a two week bed rest. Another month of this saw little improvement - I didn’t want to get better. My family and I were becoming more and more depressed and with all of us finding life unbearable, I was taken to a psychiatric hospital where I was the only boy. 

By removing the choice of recovery, my weight rapidly gained and I began to see more clearly - food really is the ultimate medicine and choice is its antagonist. After six months I returned to school where everyone supported me through my last steps. It took almost a year of going at my own pace before simply wanting to be normal gave me the incentive to recover - I came off my meal plan, started socialising, working hard and enjoying life again. Once in the healthcare system being male didn’t affect anything, however - expect a man as you would a woman to develop an eating disorder and don’t shy away from talking to them about it. 

There’s a reason anorexia in males is becoming more common. Social media has recently become inundated with pictures and quotes encouraging men to love women with curves and promoting curves by redesigning children's characters (particularly Disney princesses and Barbie) to reflect more realistic figures. Unfortunately, there is no male equivalent. All I ever see are pictures of ripped and good-looking men, one even quoting “women like butts too”. This sends the message out that men must love overweight women but that men must have a knife-sharp jawline, a sculpted body and of course, a peachy bum to be considered equally attractive. Its reasons like this that Body Dysmorphic Disorder is becoming worryingly common especially in males. 

We need equality to favour all genders - encourage everyone to be happy with how they look as long it’s healthy. I’ve gained so much from my experiences and have helped many to overcome their problems but the horror of anorexia and how much of life it affects is only known by sufferers and their families. It’s not a route that social media should inadvertently encourage people to go down  - we’ve ensured this with women but I feel men are increasingly led along this path due to the lack of society expecting them to do so.

Postscript from our guest author:

On the last day of an eventful year, I need to say this. The expectation of men to be strong and brave - to be masculine - is quite literally killing people. It's this expectation that allowed me to fly under the radar when my mental health suffered and it's this expectation that has killed four silently suffering but definitely loved friends in the last month alone. We need to be so much more aware of the hurt that people around us are feeling and not hesitate to talk to them about it. It really can be just a few words, a quick check up or a smile that can break that depression and give someone reason to think about the future which is otherwise non existent in the mind of a depressive. Please, have a Happy New Year and make this your resolution so that in 2017, good people aren't hurt by their mental health.

Many thanks to our guest author for sharing his experiences of anorexia. There are several charities specialising in providing support for people with eating disorders. These include:

B-eat - the UK's eating disorder charity

Anorexia & Bulimia Care

Seed - eating disorder support service

Men get eating disorders too

If you know of others, let us know in the comments box below.

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

Young with eating disorders 'missing out on vital help'

Eating disorders in children are not being taken seriously enough, depriving them of vital treatment, a leading expert has told BBC Newsnight.

Professor Bryan Lask said he is seeing ever younger patients, with increasing numbers becoming ill under age 10.

His pioneering research suggests a strong genetic predisposition to anorexia, which experts say needs to be tackled through early intervention.

New figures reveal eating disorders cost the NHS £1.26bn a year in England.

Specialists have reported that cutbacks in health spending are putting pressure on specialist services, with patients becoming sicker while they wait for admission.

BBC Newsnight

To see full story, click here