Eating disorders in England (and tips for Wales, Northern Ireland and Scotland)

If you're in England and your child has an eating disorder, you may be wondering what treatment is used, where to get it, and how to complain if the right level of support is not given.

On this page I'm mentioning various standards you can expect. I also list financial or practical support that you are entitled to, for various situations. If you're not in England but in another nation of the UK, much of what follows is also relevant to you, and I'm going to interject useful extra info too. Also I have a Scotland page here).

Three standards or guidelines that must be followed by services in England

There are three standards or guidelines that professionals have to follow in England. Consult them if you want to know what to expect, or what to insist on if you are dissatisfied with treatment.

The NICE guideline: Eating disorders: recognition and treatment tells professional how to diagnose and treat and eating disorder. It's more than just 'guidance': clinicians are expected to follow all guidance from NICE unless they can justify making a different decision. There's a section for adults and a section for children and young people. It covers outpatient and inpatient treatment. These also apply to Wales, and Northern Ireland. Scotland has its own version: the SIGN guideline.

The Royal College of Psychiatrists' Medical emergencies in eating disorders (MEED) is your go-to if your child is severely ill. The health service should be following this to assess risk, carry out physical examinations, decide on hospital admission, manage refeeding etc. This applies to England, Wales, Northern Ireland and Scotland.

For under-18s another standard professionals — and I think this is only for England — must follow is the Access and Waiting Time Standard. Your child must be referred to specialist eating disorder services (or to hospital). This must happen very fast after you raise concerns with any health service professional. And the referral must NOT go to Child and Adolescent Mental Health Services (CAMHS), but directly to the specialists in eating disorders, usually called ‘community-based eating disorder service for children and young people’ (CEDS-CYP).

An additional standard you may find useful, wherever you are in Great Britain, if your child is needing feeding by nasogastric (NG) tube (especially if feeding under restraint) is guidance from the British Dietetic Association on feeding by NG (nasogastric) tube. (More from me here.)

Northern Ireland has The Northern Ireland Regional Care Pathway for the Treatment of Eating Disorders.

If your son or daughter is a child or young person: the eating-disorder treatment to expect

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 with those, 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. And see further down this page for help if you are getting substandard service.

On this page I guide you 'as if' the standards were still being maintained.

Who should diagnose that a person has an eating disorder?

Are you having trouble getting your child diagnosed? They insist they're fine, they say you're the one with the mental health issue, the school is alarmed, social services have been called? If you're in this kind of difficulty, know that specialist eating disorder services are required to assess. No other services have the competence to say your child doesn't have an eating disorder.

From the 1.2.1 of NICE guideline: "People with eating disorders should be assessed and receive treatment at the earliest opportunity." There is then a list of signs to guide 'Initial assessments in primary and secondary mental healthcare (that's GPs, A&E, Mental Health services). The next step is in 1.2.10 'Referral: If an eating disorder is suspected after an initial assessment, refer immediately to a community-based, age-appropriate eating disorder service for further assessment or treatment.'

For under-18s we can be more specific, based on the Access and Waiting Time Standard. pages 26-29. The assessment must be done by CEDS-CYP, who are specialist 'community-based eating disorder service for children and young people’'. And you can get access to them by self-referral, though referral can also come from a GP or school etc.

Page 28: "Young people and their parents or carers may self-refer to the CEDS-CYP".

In other words you can bypass the 'initial assessment' that NICE refers to.

Who should be treating your child?

Do an internet search for your Trust's  ‘community-based eating disorder service for children and young people’ (CEDS-CYP). You should be able to self-refer direct to them immediately. Some are not set up for this though, in spite of standards requiring it. So get your GP or school nurse to refer today. Get your child checked by your GP anyway. Even when you're under the care of CEDS-CYP, they'll want your GP involved pretty soon for the medical aspects.

If you suspect an eating disorder, in England you should NOT be referred to general mental health services (CAMHS). They don't have the expertise — indeed there are cases where they have failed to diagnose an eating disorder, and there's then been delays.

The Access and Waiting Time Standard requires a GP's or school nurses' referral to go to CEDS-CYP right away. Within 24 hours of your first contact with the GP, CEDS-CYP should be contacting you to clarify the risk as 'urgent' or 'routine'.

In England, 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). 

(In Scotland — and I think in Wales and Norther Ireland — it will be CAMHS, but if they're any good the treatment will be delivered by CAMHS staff who have specialised in eating disorders.)

How soon will you get help after referral?

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.

In England, treatment must start within 1 week or 4 weeks depending on the level of urgency (according to the Access and Waiting Time Standard).

'Urgent' requires treatment to start within a week. 'Routine' allows a 4-week wait.

Note that if this is the first time you suspect your child has an eating disorder, I don't see how it can be classified as 'routine'. The whole point of the standards is to get rapid intervention. However trusts are struggling and they may put you way down the priorities.

So keep them informed, as often as necessary, of any changing symptoms. They will re-prioritise.

What if there's a long waiting list?

I a neighboring trust doesn't have such a long list, ask your GP to refer you there. This is explained in Your choices in the NHS.

I've heard that my local eating disorder service is very bad

See above, about choosing another service: Your choices in the NHS.

What if my child is very ill?

Anywhere in the UK, your GP and/or A&E must follow the Royal College of Psychiatrists' Medical emergencies in eating disorders (MEED). Clinicians may not have heard of MEED so bring it along, in particular Appendix 3 (page 183) which has a checklist for clinicians. The details are in Chapter 2, pages 27 to 59 ('Risk assessment: evaluating the impending risk to life due to the patient's illness'). Most of MEED is in plain english, so do use it if you're needing to insist on a particular standard of service. There's a lot in there on how a person (and their parents) should be cared for in hospital

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".

Getting your child to the professionals

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.

The NICE guidelines: FBT treatment first

In the NICE guidelines you'll see that 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 and Bitesize audios are frequently recommended by the eating disorders specialist teams:

18 and over: the eating-disorder treatment to expect

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.

CAMHS inpatient units (Tier 4), sectioning, and the Mental Health Act

The 'CAMHS Family Survival Guide' by bringingustogether has fantastic guidance regarding referral of an under-18 to a specialist assessment and treatment unit (ATU) or Tier 4 inpatient unit. I think it focuses on autistic kids or those with a learning disability (e.g. learn about the Care Education and Treatment Review (CETR)) , but the guide is probably also great for anyone wanting to know what to expect in a psychiatric unit, who does what, what is 'capacity' and sectioning under the Mental Health Act. Also the additional community support that must be discussed as a safe alternative to inpatient admission. You can also learn about the Care Education and Treatment Review (CETR) for an autistic young person or someone with a learning disability.

More from me on autism here — check out the links at the bottom of that page for more resources.

* Leaving hospital? Aftercare under the Mental Health Act in the UK *

Confidentiality

Services have to respect your child's confidentiality — it depends on their age. If they're any good they will do their best to get your child to consent to sharing information with you.

While a clinician may not allowed to divulge information about your child, they are allowed to get information from you about how your child/partner (of any age). This is very useful because your child will often present as though they are well, while you know a lot more about what they are struggling with.

I suggest you make it clear that you want to be actively involved: you're a resource in your child's treatment. (If that's not obvious to everyone, your child isn't getting FBT treatment).

How to complain: advocate for your child when treatment is sub-standard

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.

To help you get early diagnosis and treatment, BEAT has a great leaflet 'Need treatment for an eating disorder? The first step is a GP appointment'. It's for you and it's also a guide for GPs.

BEAT has an excellent page full of practical advice: 'Overturning bad decisions'. For example I'm thinking of a child, referred (correctly) by the GP to the child and adolescent eating disorder service, who rejected the referral. 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.

The key point in the letter was:

"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.

The health service has procedures for you to make a formal complaint. But if an informal route works, it will be faster.

As soon as you see difficulties, start documenting everything, as it may be useful to refer to decisions that were made at a particular meetings on a particular date.

You can also ask for your child's care plan: this will show you how clinicians see the issues and plan for your child to be treated.

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. If informal conversations aren't achieving anything, it's time to write a letter. Provide relevant facts, refer to particular decisions made, and by whom and when. State how a decision (or lack of action) has been affecting your child or family. Most of all, make a clear request for a precise action, and if at all possible, refer to a guideline or standard.

(Sometimes a parent shows me a draft that reads like a mournful, 'Why??????'. Like 'Why didn't someone notice my child was hiding food in the eating disorder unit?' It's probably more useful to decide what you actually want, and ask for it: 'Please tell me how you intend to supervise'….etc etc.)

You can escalate matters by approaching (or copying in) the Trust's medical director, the director of nursing , the chief executive, and/or the Executive Lead for Children and Young People within your area's Integrated Care Board.

"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."

I have learned from a few parents that this person (who used to be called 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?'.

To help you complain and resolve issues, every hospital in England and Wales has a Patient Advice and Liaison Service (PALS). For example, PALS can help is if the hospital is planning to discharge your child too early, without proper planning. In Scotland it's the Patient Advice and Support Service (PASS) and in Northern Ireland it's the Patient & Client Council (PCC).

"I had a productive chat with the hospital Patient Advice and Liaison Service (PALS). They have listened to my concerns and are going to contact the ward doctor to raise them. I am also able to forward an email containing my concerns to them that they will then forward to the hospital team. They are asking too if we can attend the multi disciplinary meeting tomorrow because as parents, we should be able to be there."

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!

Is your child considered 'fine' in spite of all the signs?

See my section 'Who should diagnose that a person has an eating disorder?' above for standards you can quote in order to insist that specialist eating disorders are the ones to do th assessment.

Sometimes, I hear that even those specialist services (CEDS-CYP) have announced that a young person does not have an eating disorder, and passed them on to general child and adolescent mental health services (CAMHS) for help with anxiety etc. Cynics say this is because CEDS have to comply with the Access and Waiting times standard and can't. Less cynically, I'd say you may not be getting access to an experienced clinician. So ask for the head of service to review. If necessary, bring along official lists of signs, along with your own list of exactly what your child is doing and saying.

What official list of signs?

Well you could bring the very short list from the DSM diagnostic manual: see them on my page here.

There are more details in the NICE guideline. Section 1.2.6 has a list of criteria 'When assessing for an eating disorder'.

And if you are worried about the medical risk you could bring the The Royal College of Psychiatrists' Medical emergencies in eating disorders (MEED) guidance: Chapter 2 is all about risk assessment.

Not so official but still carries weight: bring along the list of signs from charity BEAT.

Is your child's weight (BMI) too 'normal' to get treatment?

I look forward to the day I can remove this section. No individual, whatever their age, may be turned away from eating disorder treatment on the basis of their BMI. Incredibly, frustratingly, it's still happening in GP surgeries. And even more frustratingly, it can happen when a child is mistakenly referred to Child and Adolescent Mental Health Services (CAMHS) and they are ignorant of the criteria requiring them to refer to eating disorder services.

"The GP did not make a referral to eating-disorder services because she is not technically underweight. Her BMI is still in the 'normal' range (albeit at the bottom of that range)."

From the mother of a child who is losing weight daily, and displaying many signs of an eating disorder

A standard you can refer to if this happens to you is the NICE Guideline: Eating disorders recognition and treatment.

Paragraph 1.2.8:

"Do not use single measures such as BMI or duration of illness to determine whether to offer treatment for an eating disorder"

A very low BMI does of course warrant investigation and action. But so does a normal or high BMI. What a GP must evaluate when deciding whether to refer are all the signs listed in section 1.2.6:

"When assessing for an eating disorder or deciding whether to refer people for assessment, take into account any of the following that apply." [followed by a list]

I also suggest some very specific signs you can list for your GP: these are in Chapter 6 of my book, which is all here.

Appreciate that GPs typically have very little training on eating disorders, so the task of diagnosis is passed on swiftly to the eating disorder service. From Paragraph 1.2. 10:

"If an eating disorder is suspected after an initial assessment, refer immediately to a community-based, age-appropriate eating disorder service for further assessment or treatment."

If you suspect your child is medically at risk, bring along Appendix 3 on page 183 of Medical emergencies in eating disorders (MEED). This is a checklist summarising the more comprehensive advice on Chapter 2, pages 27 to 59 ('Risk assessment: evaluating the impending risk to life due to the patient's illness'). You'll see there are a great many criteria for assessing risk. Low BMI is just one of many criteria. Nowhere is a normal BMI listed as a reason not to proceed with a fuller assessment.

Complaining about discharge? Here are some standards

Sometimes parents have to quote standards in order to get the care their child needs. For instance, below are standards that may help you if clinicians want to discharge too soon from inpatient care.

As an example, consider a child who could not eat at home, and whose distress with meals in the ward was through the roof. After a few days of medical stabilisation she was discharged. She could still not eat at home and went on deteriorating. The parents worked hard to get her readmitted on the same ward. Tube feeding helped. The parents could not make meals work, but there were some successes with some staff. Agonisingly, after just a few days, the clinicians decided to discharge again.

The parents used some of the standards quoted below to continue advocating, verbally and in writing, for their daughter to remain until she was considerably better. Interestingly, they found that some clinicians were actually in complete agreement that this girl would only get worse if discharged too soon. A new agreement was made to keep her in the ward and review weekly. Happily, after just another couple of weeks, the girl was able to practice meals during short home visits, and thereafter was genuinely ready for discharge.

Here are some of the standards that may help if you are in a similar situation.

Parents to practice feeding: off the ward and at home

This is from MEED, page 108:

"Trials of transfer of responsibility for feeding to parents or to the young person should be made as soon as possible because this will determine the length of inpatient stay, the treatment approach and the level of care needed. Providing opportunities to practise in different contexts (e.g. off the ward, at home) will help clarify the level of support the young person needs to eat, and who they need the support from. These skills can then be built on in the home context with support from the community EDS" (EDS is Eating Disorder Service).

Plan the discharge or a step down

This is from NICE, section 1.11 'Inpatient and day patient treatment > Care planning and discharge from inpatient care':

Note that hospitals are required to have a discharge policy, and you should be allowed to consult 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.

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".

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

For England, the NICE guideline for eating disorders has a section on 'Supporting parents, family members and carers', which applies whatever the age of the patient. In the section on Information for the public:

"You should be asked what help and support you need while the person you care for has treatment. This should include:
• emotional and social support
• practical support, including discussing care plans and what to do if emergency care is needed"

And here's more detail, from the section on Recommendations, regarding patients of any age, under "Working with family members and carers":

"Be aware that the family members or carers of a person with an eating disorder may experience severe distress. Offer family members or carers assessments of their own needs as treatment progresses (see the NICE guideline on supporting adult carers), including:
. what impact the eating disorder has on them and their mental health
. what support they need, including practical support and emergency plans if the person with the eating disorder is at high medical or psychiatric risk."

If you have good examples of this at work, do write in the comments, because personally I don't hear of this happening.

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.

If your NHS services are not able to support your child to eat at home, when you are not managing, they may commission a private company to do so. I write about this here.

Your child may be entitled to 'Aftercare' under section 117 of the Mental Health Act. That might mean you get professional help for whatever will support your child after a section. I say more in 'Leaving hospital? Aftercare under the Mental Health Act in the UK'.

Help with disability or autism

Your child can get support at home so that they do not need to go into hospital… or if they are already in hospital. This is accomplished through the NHS's 'Dynamic support register (DSR) and the Care (Education) and Treatment Review policy — C(E)TR.

You can self-refer through your local NHS, or any professional involved with your child will get it set up. I read from parents that this was genuinely helpful.

More information on this NHS page.

The NICE guidelines for eating disorders don't mention autism. NICE has separate guidelines for the recognition, referral and management of autism for youngsters and for adults. The National Autistic Society have a guide to 'Adapting support for autistic people with eating disorders', which may help you advocate for your child.

Help with school

There are legal provisions to help get your child the education they need, and the support to make that possible.

See my page 'Is your school supporting lunch? For pupils with an eating disorder, it must'

Some parents have told me that they got the school support required through an Education, health and care (EHC) plan. This applies to children with 'special educational needs'.

Advocating for better treatment and more relevant research

The UK's Eating Disorders Clinical Research Network gathers people with lived experience, carers, treatment providers and researchers.

More

Do browse around this site, as there should be a lot of help for you here, including the resources below: