Eating disorders in England

Last updated on September 20th, 2020

If you're in England, here is some specific information that may be helpful to you.

If your son or daughter is a child or young person

Services should, in principle, be excellent. England makes huge requirements of health trusts in the Access and Waiting Time Standard. So if your health trust is complying, as many increasingly are, your under-18 child will get the best of treatments without delay.

To avoid delays you can self-refer direct to the specialists. Check your Trust's website for the  ‘community-based eating disorder service for children and young people’ (CEDS-CYP). You don't have to start with the GP, though the eating disorder service will want your GP involved pretty soon for the medical aspects.

After raising the alarm you should get a call from the specialist eating disorder community service within 24 hours so that they can assess the urgency. Have your facts ready. Treatment must start within 1 week or 4 weeks depending on the level of urgency. The treatment must be in line with NICE guidance and must be delivered by staff who are trained and supervised in eating disorders (not CAMHS generalists).  I explain all this here.

If you are wondering how on earth your child will agree to see the GP or the specialists, this podcast from therapist Mark Taylor may help you. You can get in touch with services even before your child is willing — they can give you precious advice right away.

If your child is receiving inpatient care, or intensive day care, there is NHS guidance in the "Addendum – Inpatient and Intensive Day Care extension to the Community Eating disorder guidance".

Whatever the diagnosis, treatment should follow NICE guidance, which I summarise here.  For anorexia or bulimia, the treatment offered right away should be a specialised form of family therapy (not general family therapy). It's called anorexia-nervosa-focused family therapy (FT-AN) or bulimia-nervosa-focused (FT-BN). If you've heard of Family-Based Treatment (FBT), that's compatible with NICE recommendations. The resources on this website and in my book support forms of family treatment as recommended by NICE, and are widely recommended by services in the NHS. If you find you are given something very different without good reason, I recommend you challenge this because it could delay your child's recovery.

My book is frequently recommended by the eating disorders specialist teams

18 and over

The treatment should be according to NICE guidance – see it here.

Trusts have to pay attention to this guidance: "Adult eating disorders: Community, Inpatient and Intensive Day Patient Care. Guidance for commissioners and providers (Aug 2019)"

Trusts also have to work to the NHS Mental Health Implementation Plan 2019/20 – 2023/24.

Both of the above documents are explained by the charity BEAT here  (you can also see BEAT's campaigns here).

If you son or daughter is in their twenties and has recently been diagnosed, they may well be better served with a family therapy approach similar to the one for young people. I explain this here. Unfortunately only a few health trusts provide an all-age service for eating disorders. So as soon as people turn 18, they are likely to get treated by therapists who have not experienced the amazing progress you can have with intense parent support.

There are currently no waiting time targets for people age 18+ though changes are in the pipeline through the two documents mentioned earlier.

Complaining

There are official routes for complaining to the NHS in England. See here and here.

I have learned from a few parents that the Children's Commissioner in their health trust can be very useful in sorting out problems. They are the ones seeing that money is well spent, and that the trust won't be penalised for failing to meet standards.

There is also Care Opinion,  a feedback platform that might help you be heard without you having to make a formal complaint. I'll be interested to know what you think of it!

BEAT: for information, support and skills

The charity BEAT has been developing all kinds of highly relevant services, group and courses. Take a look around on on their carers' pages. They also offer services that might be suitable to your son or daughter.

What help is there in England if you are struggling financially?

One of my friends is a single mother working freelance. Supporting her daughter meant serious financial hardship until she discovered help was available. Her experience is that if you communicate with financial agencies, they are very understanding and try and help you find a way forwards. Much of the information below comes from her and I hope it helps some of you.

Carer's Allowance  Details here.
Once you are on carer's allowance, not only do you get a weekly sum but it looks like you're eligible for discounted council tax, free prescriptions and mortgage relief.

Disability Living Allowance for Children (DLA)  This is for under 16s who need "much more looking after than a child of the same age who does not have a disability". Details here. For youngsters aged 16+, the equivalent is PIP (see below).

Personal Independence Payment (PIP) Your 16+ child may be eligible for this weekly sum, and the money would go to you. It would also make you eligible for Carer's Allowance. According to a government spokesman, "More than 3,500 people are claiming PIP on the basis of an eating disorder and 64% of those are getting the highest rate of support available to help them with their daily living needs." Details here.Disabled Students Allowance may be available to your child on top of PIP.  this is to cover some of the extra costs you have because of a mental health problem, long term illness or any other disability.  

Universal Credit A payment to help with living costs including housing. Details here.

Mortage relief
My friend's building society gave her a three-month mortgage holiday. She found the building society compassionate and understanding.

Citizens Advice Bureau Can help you in person and also have a lot of good info online. Details here.

Social services and the local council Social services may or may not be knowledgeable about benefits you are entitled to. You local council may also have an expert whose sole job is to inform you about this. Check out "Income maximisation" or "Benefits health check".

Help with the daily work of supporting your child

Some CAMHS have an intensive treatment team, which will visit you several times a week to help you at mealtimes, or to take your child out so that you get a break.

A struggling single parent I know was offered a "Family Group Conference" by a social worker. The idea was that this parent would put together a list of friends and family members who might be ready to help in a variety of ways, and the Family Group Conference would gather these people round a table, check what each was willing to do, and coordinate them. I believe this

What is the UK government doing about eating disorders?

There was a good debate on eating disorders in our UK parliament on 27 February 2018 thanks to Edward Argar, MP. You can read the transcript here and watch the video here  starting at 19:09. They talk about ser

More

Do browse around this site, as there should be a lot of help for you here.

4 Replies to “Eating disorders in England”

  1. I live in London ,
    Where can I come to get some help
    If I know someone has a eating disorder and he needs help as soon as possible .
    Thanks

    1. Hello Anonymous, get him referred to your NHS Trust's eating disorder service. As explained in this post, for under-18s, google your Trust's CEDS-CYP and self-refer right away. I hope he gets well very soon. Love, Eva

  2. It's interesting how you said that getting some kind of therapy as a family would be helpful if your child is older than 20 years old. Having anorexia therapy would be good for my sister who has been struggling a bit lately. That would at least help her to talk to us a little bit.

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