Last updated on April 21st, 2022
If you're in England, here is some specific information that may be helpful to you. This is also the page where I note tips that may be relevant to other nations of the UK.
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.
Standards have dropped with the Covid pandemic, as cases have shot up — often presenting more severely too. Trusts that were providing rapid and intense service may now make you wait longer. They may spread out the appointments more, and may discharge sooner than they used to. They are trying to prioritise. So make sure you keep informing services of your situation: describe symptoms, behaviours, what you are not coping with. Use A&E if in doubt.
I'll now guide you 'as if' the standards were still being maintained.
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.
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.
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.
Experiencing difficulties with your child's eating-disorder care? I'll start by referring you to BEAT resources and then give you some more pointers I have heard about.
BEAT has an excellent page full of practical advice: 'Overturning bad decisions'. For example during the Covid pandemic I knew of a child whose GP referral to the child and adolescent eating disorder service was rejected. The parents found on BEAT's page this section: 'The eating disorder service has denied me an assessment'. They used the letter template provided and — success — got an almost immediate appointment and treatment. All the letter says is: "As the NICE guidelines state that anyone believed to have an eating disorder should receive a specialist assessment, please could you let me know why this is being denied to me?"
So check out that BEAT page, and now I'll share some more tips I've picked up from parents.
If you've not yet contacted the clinical Director of the unit treating your child, do so. They have overall responsibility and can make things happen. This is probably the psychiatrist in charge of the eating disorder service. Document everything. You can escalate matters by approaching (or copying in) the Trust's medical director, the director of nursing , the chief executive, and/or the Trust's Children's Commissioner.
"I didn’t make a formal complaint, but emailed the lead consultant (whom we’d not previously met) and all the other professionals involved in D's care. I detailed all my concerns, including quotes from NICE and our local Mission Statement for Children’s Mental Health Services. Fortunately this informal approach seems to have helped. We now have improved communications, a clear management plan and a lead clinician who has taken ownership of D's care."
Other standards that you can refer to, depending on your situation, are the Marsipan (for 18+) or Junior Marsipan (for under 18s) guidelines (Management of really sick patients with anorexia nervosa). The health service should be following this to assess risk, carry out physical examinations, decide on hospital admission, manage refeeding etc. They should also use guidance from the British Dietetic Association on feeding by NG (nasogastric) tube, especially if considering feeding under restraint (case studies here). Note that Marsipan is getting an update: the July 2021 draft full of good things and is here. And sadly for my little brain, we're losing the memorable name 'Marsipan'. It's becoming 'Guidance on recognising and managing medical emergencies in eating disorders'.
I have learned from a few parents that the Children's Commissioner in their health trust was 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.
In case you are close to another NHS Trust's catchment area: sometimes parents know that a neighbouring eating disorder service is superior to theirs. Changing to a GP in that area gives them access to this service.
There are official routes for complaining to the NHS in England. See 'How to complain to the NHS' and 'How do I feedback or make a complaint about an NHS service?' and get help from the Patient Advice and Liaison Service (PALS).
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, groups and courses. Take a look around on on their carers' pages. They also offer services that might be suitable for your son or daughter to engage with.
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.
Disabled Students' Allowance A parent tells me this is not only about getting money for full-time or part-time students, but also about accessing support such as a mentor. The student needs to fill in an application form and so does their GP. A disability, according to this parent, includes anxiety, depression, stress, and eating disorder. Details here.
Universal Credit A payment to help with living costs including housing. Details here.
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".
Talking of Social Services, some parents can be rather alarmed when a clinician says they will refer their case to Social Services. It can feel threatening. I read from other parents that this may be truly wonderful, as in their experience the staff there have been very supportive.
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.
There is also, throughout the UK, "Early Help". I hear that Early Help will support the whole family, visit so you can have some respite / time off, and it sounds like maybe they can help with difficult relationships. For example a parent told me that while her daughter was not able to attend school and had become violent, someone from Early Help would visit to chat and do some art, which gave the girl a different kind of company. I believe you can get referred or self-refer and that entry points are your CAMHS, your GP, school, or your council's children services.
Do browse around this site, as there should be a lot of help for you here, including the resources below:
Bitesize: a big collection of short audios$9.49
Ebook for download$7.99
Paperback from shops
Four guided meditations$0.00
Free Help Sheets$0.00
WORKSHOP: First phase – help your child to eat$38.00
WORKSHOP: Phase 2 -the work towards full recovery$38.00
WORKSHOP: communication skills to support your child and be more effective$38.00
WORKSHOP: Grow stronger – Tools for your own wellbeing$38.00