by parent and educator, Eva Musby
England has standards designed to get you rapid, specialised treatment for your child. If you’re in Scotland, Wales or Northern Ireland, these are still relevant to you, as the informal standards are similar, though more variable.
What quality of treatment can I expect through the NHS?
Your local NHS service should have a specialised service to treat your under-18.
Do an internet search for Children and Young People Community Eating Disorder Service (CYP-ED or CYPED) in your local mental health trust.
This service is usually an offshoot of CAMHS (Child and Adolescent Mental Health Service) but the staff are specialised in eating disorders and must have regular training and supervision.
How long will we have to wait?
One week maximum for ‘urgent’ cases, four weeks maximum for ‘routine’ cases. If you have just started suspecting your child may have an eating disorder, your case is most probably ‘urgent’. This is because the NHS recognises that early diagnosis and treatment is crucial.
One week starting from when? From when you first contacted someone in the NHS with your concern.
This is all in the Access and Waiting Time Standard for Children and Young People with an Eating Disorder. Commissioning Guide.
How do I get an appointment?
When you’ve found your local specialist service online, you will see their instructions for referral. According to the Access and Waiting Time Standard, you should be able to self-refer to this service right away. Not all Trusts are up to standard yet, and they may expect your GP to make the referral.
In this case, make a GP appointment and explain you must be seen today so that your child is referred to the Children and Young People Community Eating Disorder Service on this same day. Again, this is in the Standard. Some GPs don’t know about this, so tell them.
What if the GP causes delays?
It is not acceptable for the GP do advise ‘Wait and see’. The minute you suspect an eating disorder, they must refer you on that day (by phone, or electronically) to the Children and Young People Community Eating Disorder Service. They are the ones who are competent to assess the urgency, to diagnose, and to treat.
If you are unlucky and your GP is causing delays even after you’ve shown them the Standard, find a phone number for the Eating Disorder Service (of for CAMHS), and they should help you from there on.
Referrals can also be made by ‘school nurses or medical, pastoral or other members of staff’.
What if the Eating Disorder service causes delays?
On the day they’ve received a referral, the service should phone you: ‘All require telephone or in-person contact to be made with the child or young person and the parent or carer on the same day to clarify risk’. In other words they “must classify the urgency of the case within 24 hours”.
As a result, some families get seen the next day. Remember the maximum allowed is one week and around 80% of Trusts manage that (from 2019 statistics).
Some services are overwhelmed and they tell families there is a waiting list of several weeks. If this happens to you, keep phoning them to update them on your child’s symptoms and behaviours. If they’re getting worse this may move you up the list. Also, you can ask for advice on the phone, to help you keep your child steady.
As you get informed through websites like FEAST’s you will learn what is expected of parents as part of the treatment. Many parents start taking charge of their child’s food, exercise and any harmful behaviours, even while they are waiting for a therapy appointment.
What will the treatment be?
It must follow the NICE guideline for eating disorders (National Institute for Health and Care Excellence). This guideline is written in plain English, so you can see for yourself what to expect. Briefly, here is the treatment NICE recommends for under-18s.
For binge eating disorder
- A ‘guided self-help program’, possibly with ‘brief supportive sessions’
- If this is ‘unacceptable, contraindicated, or ineffective after 4 weeks’, CBT-ED (cognitive behavioural therapy for eating disorders) in a group.
- And if that’s not available or the person won’t attend a group, then individual CBT-ED must be individual.
- Bulimia-nervosa-focused family therapy (FT-BN)
- If that is “unacceptable, contraindicated or ineffective”, then individual eating-disorder-focused cognitive behavioural therapy (CBT-ED)
- Anorexia-focused family therapy (FT-AN)
- If that is “unacceptable, contraindicated or ineffective”, then one of two types of individual therapy:
- eating-disorder-focused cognitive behavioural therapy (CBT-ED) or
- adolescent-focused psychotherapy for anorexia nervosa (AFP-AN)
For OSFED (other specified feeding and eating disorders)
- ‘consider using the treatments for the eating disorder it most closely resembles‘
Tell me more about the treatment
Anorexia-focused family therapy (FT-AN) and Bulimia-nervosa-focused family therapy (FT-BN) are umbrella terms created by NICE to describe a type of treatment based in the family, that directly targets the eating disorder.
Many therapists and families call it FBT (Family-based treatment). This can lead to confusion because FBT is a specific method described in a manual by Lock and Le Grange. Very few NHS therapists in England have been formally trained in FBT, though there are growing numbers who have attended a one or two-day course.
When they have received external training, it is usually a couple of days from the child and adolescent service of the Maudsley hospital in London. This service was at the origin of an approach that uses the family. The service also train Trusts to use Multi-family Therapy – these are adjuncts to the main treatment and allow several families to learn together.
Some therapists have attended a course on ‘The New Maudsley Approach’: if they talk about ostriches and rhinoceroses, it’s from that. Note that this approach, while it contributes useful concepts, differs significantly from FT-AN or FT-AN because it doesn’t put parents in charge of meals and behaviour modification — it is more collaborative, and was developed for long-term ill adults.
Very few therapists have been trained in Adolescent-Focused Therapy (AFT), and if so it may only have been a one-day introduction.
Cognitive behavioural therapy for eating disorders, CBT-ED, is a specialised form of CBT. The training usually comes from Glenn Waller or Christopher Fairburn or colleagues. The form taught by Fairburn is called CBT-E (for ‘Enhanced’). Some therapists in eating disorder units are only using general CBT, and that is not so effective as it deals more with thoughts than with the task of eating, stopping purging, and recovering weight.
Eating disorder services must keep their training and supervision up to date. In practice, standards do vary. There is no single course that specialists must follow, no single certification they must have.
What if I am unhappy with the therapy?
If you are unhappy about the standard of your therapist, talk to the head of the service. This is usually a psychiatrist. You can say the therapist ‘is not a good match’ for your child and ask for another. You can also demand a second opinion. Both GOSH and Maudsley are national centres of excellence that may provide second opinions and advice. You can also use your Trust’s complaint procedure, and ask for help from your MP or councillor. There is also the Patient Advice and Liaison Service (PALS).
Is the NHS cost-cutting by giving us a family-based approach?
No. The reason FT-AN or FT-AN are top of the recommendations is that they are far more effective than individual therapy. Note that for the great majority of youngsters with anorexia, it is correct that individual therapy is not necessary. If there are comorbid issues (OCD, depression, anxiety, etc) individual therapy may have a role but usually not until there has been good progress with nutritional rehabilitation. So no, it’s not about cost-cutting.
Is it only under-18s?
Mental health services in the NHS tends to be organised such that different services treat people considered ‘adults’ at age 18 and over.
There is no scientific reason to deny an 18-year old the same service as a 17-year old — indeed the studies on family-based approaches were done on 12 to 18 year olds.
Some eating disorder services have transformed themselves into an ‘all age’ service, where a whole range of treatment approaches are available, whatever the person’s age.
Sixteen-year olds sent to adult services?
Worryingly, in a few places, youngsters aged 16 and upwards may only get access to adult services. Sometimes the criterion is whether these young people have stopped school. Sending a 16 or 17-year old to adult services is probably in breach of NHS standards. England’s Access and Waiting Time standard requires youngsters up to age 18 to be treated in a “community-based eating disorder services for children and young people (CEDS-CYP)”. Additionally, trusts are probably in breach of England’s NICE guidelines, requiring anyone under age 18 to be offered, as a first choice, a family-based approach (FT-AN or FT-BN). Adult services are very unlikely to provide this approach and far more likely to make poor use of parents, focusing on individual therapy and individual motivation.
What about hospital treatment?
If you are struggling with meals at home, you might be able to receive some hands-on help. Some Trusts have an intensive treatment team (they may call it something else) which is part of CAMHS, and may or may not have been trained by the eating disorder service to skilfully support meals. This may help get your child started with eating, or may serve as a form of coaching for yourself. This is rarely more than one meal a day for a few days or week.
If your child isn’t getting better with treatment at home, they may be offered day care (though few Trusts have this) or inpatient care. For under-18s there is NHS guidance for this in the Addendum – Inpatient and Intensive Day Care extension to the Community Eating disorder guidance. It talks of consultation and collaboration. Admission to day care or inpatient treatment is on the basis of physical and/or psychiatric risk, and there is no mention whatsoever of any BMI or weight threshold. Nowadays, NHS policy-makers are very aware it is unhelpful to wait for young people to become underweight.
More and more Trusts use the local hospital’s paediatric ward for short admissions (a few days, or up to two or three weeks). This can turn around a young person, if the wards has a good procedure (‘pathway’) to ensure the person is nourished and starts to regain any lost weight. The best wards work closely with the eating disorder service (CYP-ED), and with the parents. Ideally the parents are often in, helping their child to eat, so that discharge back home is smooth.
Trusts may also use their local psychiatric inpatient unit, which usually is experienced in eating disorders. These stays are typically longer than a few weeks.
They may also refer your child to a specialised eating disorder unit somewhere in the UK. These are typically private units that have NHS beds. Trust do their best to get somewhere close but decisions hinge on availability, and the level of care needed.
Is private treatment better?
Usually no. England has made outstanding improvements to its NHS care of young people with an eating disorder. Mostly, therapists are up to date with a family-based approach for anorexia or bulimia. And usually treatment starts within one week.
If you contact a private therapist and they are not proficient in a family-based approach for anorexia or bulimia (FT-AN or FT-BN), then there is a risk your child will miss out on the most effective first-line treatment. There are private providers who talk of ‘family therapy’, but do not place parents at the heart of the treatment in the way the NICE guideline requires.
Treatment in Scotland is similar to England’s but there are big differences:
- There is no self-referral. A GP or school nurse must refer your child to CAMHS.
- Scotland only has a waiting time standard for mental health in general, and that is a maximum of 18 weeks. Services do try to treat much faster, and some achieve standards like England’s. See the advice above if you are told of a long waiting list.
- Treatment is delivered by CAMHS, not by a specialised eating disorder service. Glasgow is an exception: patients are still treated by CAHMS but there may be some specialist input.
- In principle, every CAMHS in Scotland has some staff that have received at least a day’s training in FBT (Family-Based Treatment) from James Lock or his team. There is also an effort for every CAMHS to have at least one therapist trained to a much higher level and have FBT certification. In practice, some families have to fight to get access to these more highly trained therapists.
- Any Scottish CAMHS can deliver whatever treatment it see best, though they tend to take notice of NICE guidance and there is a general enthusiasm for FBT. There is work in progress to write the Scottish equivalent: SIGN guidelines.
Treatment in Wales is similar to England’s but there are big differences:
- There is no self-referral. A GP or school nurse must refer your child to CAMHS.
- There is no waiting time standard.
- The majority of young people get their treatment from CAMHS, not by a specialised eating disorder service. Standards are variable.
If your child meets particular criteria they may have access to one of three specialist eating disorder teams. These are the SPEED in BCUHB (North Wales), ABUHB SPEED (South Wales), and the specialist outreach team (South Wales).
There are two designated inpatient units for adolescents in Wales, both on general psychiatric wards. Otherwise, referrals out of Wales are the norm, and these can be anywhere with a bed available in the UK.
There has been funding from the Welsh Government to help with the transition from CAMHS to
Adult Eating Disorder Services (AEDS) (from age 17and 4 months, to age 18). This means that CAMHS and AEDS are now beholden to work together. The AEDS now have an understanding of the differences of care, especially with families being central to the care of young people with EDs.
There is also an understanding that some young people are not developmentally ready to move into adult services, and there may be scope to have joint care up to the age of 25.
All of the above may change due to the Welsh government’s publication of
a “Written Statement: Review of Welsh Eating Disorder Services in September 2019”. The ‘Executive Summary” for it is the “Welsh Government Eating Disorder Service Review 2018”.
The current Health Minister for Wales (Vaughan Gething) is committed to bringing all of the changes suggested in the review. This will take time though.
[Please get in touch if you can contribute to this section]
For more information
NICE guideline for the recognition and treatment of eating disorders
Access and Waiting Time Standard for Children and Young People with an Eating Disorder. Commissioning Guide
Eva Musby is an educator and author in the UK. She can be reached at https://anorexiafamily.com/contact
Thank you for this Eva, essential reading and links for parents and carers.
I am proud to say I sat as a parent on the working group that developed the access to waiting time standards and sat alongside committed and passionate professionals, but I am sad to say having good NICE guidance and Commissioning standards gives hope and an expectation to families that a lot of places still cant meet. Services are very patchy, with large geographical variation and I am sceptical of 80% claiming to meet those standards(likely to be self reported creative counting).
The clue is in the name of the documents, they are ‘guidance’ and any service will have difficulty meeting them without substantial funding. Anecdotally I come across families on a regular basis tragically let down by ED services and mental health services generally.
So I would say having the written guidance is great but much more needs doing to make those standards a reality for everyone
An update from me:
1. Covid has led to big waiting times. Services that used to pride themselves on starting treatment within a week have had to massively drop their standards. This makes it even more important for parents to educate themselves and get started with feeding, with the support of a GP. And to keep informing the eating disorder service of any worsening of symptoms or behaviours (or visiting A&E): this should prompt services need to revise their risk assessment as you sit on the waiting list.
2. Concerned about the medical risk? Bring to your GP (or to A&E) this: Medical emergencies in eating disorders (MEED). Guidance on recognition and management. https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233 (This replaces the ‘Marsipan’ guide)
3. People who were detained under Section 3 of the Mental Health Act have rights to care and support after they leave hospital. This is in Section 117 (“Aftercare”) of the Mental Health Act: https://www.mind.org.uk/information-support/legal-rights/leaving-hospital/section-117-aftercare/
An example: someone who needs meal support at home for a while, after hospital — some Trusts who cannot provide this themselves have a contract with a partner company to do so.
4. Need to complain and agitate? A good guide from BEAT: “Overcoming bad decisions”: https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/overturning-bad-decisions/
5. There’s also practical and financial help that Social Services can point you to, e.g. “Early Help” and Personal Independence Payment (PIP) and Carer’s Allowance and Disabled Students’ Allowance…