Last updated on June 23rd, 2020
How does Scotland treat eating disorders?
The good news is that if you have a child or adolescent suffering from an eating disorder in Scotland, there are good chances he or she will receive excellent, evidence-based treatment, and that this will be offered promptly. Scotland has led the way in getting staff trained and supervised to a high level in the best approach available. We have some highly committed, amazing top experts, who are working hard at helping others voluntarily raise their standards. I live in Scotland and I am impressed by their work.
The bad news for a small number of you is that how well your child is treated still depends on where you live. Care and treatment for people with an eating disorder in Scotland is a postcode lottery. From some parents' experiences, it looks like some health boards are not delivering family-based treatment, presumably because they think their approach is better. This is even though every health board has staff who have attended basic training in FBT.
I've come across another frustration: an area where even though there's a couple of clinicians trained to a high level, the patient cannot get access to them. I don't understand why. A while back I also came across two families in a health board where an excellent eating disorder service exists, but the GP and CAMHS blocked access to them, because they were over-confident in their assessment that the child did not have anorexia. In both cases, the young person got eating disorder care after several years of their parents fighting for it. I don't know if this could happen again or if the health board improved its procedures.
In short, standards of treatment are lacking in some areas of Scotland, which means some young people are more ill, for longer, than they would be if they lived some distance away.
There is no standard or audit or government action to force health boards to improve on this situation. But there is some hope, as Scotland tends to follow the NICE guidelines. As I explain here, the NICE guideline went through an overhaul in May 2017 and it requires that the first thing on offer for youngsters with anorexia or bulimia is a family therapy approach .
Scotland is in principle well ahead of the family therapy curve, which means that treatment of children and teens should be among the best in the world. Every health board in Scotland has had at least one member of CAMHS staff trained in FBT (family-based treatment) by James Lock (from Stanford University). But in practice, standards vary. Overall, many staff have had a pretty basic 2-day FBT awareness course, which really doesn't not seem to produce the level of expertise we require from an eating-disorder therapist. The good news is that most health boards have had a lot more over the last few years, as James Lock has visited regularly.
In many places, there are clinicians who are going through FBT certification, or who now have it. This certification is very thorough (and expensive), with lots of practice and supervision from experts related to Stanford, so with these people, your child should be in good hands.
In-patient units for children and adolescents are reporting informally that the number of eating disorder patients has dropped dramatically. We believe that is because of the success of early intervention and of FBT. Many of these units say they are integrating principles of FBT into what they do. From some parents' reports, more is needed in some places.
A few health boards are also working on training staff to competently deliver a form of CBT (cognitive behaviour therapy) which has been developed and tested for eating disorders (commonly but inaccurately referred to as CBT-E). The NICE guideline lists this type of CBT as one of two options if a family-based approach isn't suitable.
When hospitalisation is needed, there is a move to treating children for a short while in paediatric (medical units), with the help of CAMHS, then the care resumes at home. So the move is away from psychiatric beds. Glasgow led the way with a 'pathway' for the Queen Elizabeth University Hospital, which I can share with you if you contact me.
Scotland has some private eating disorders in-patient units, and of course, private outpatient care. For under 18s, assuming you are covered by a CAMHS that is up to date, my impression is you will get the most up to date treatment within the NHS.
For adults suffering from an eating disorder in Scotland, my knowledge is very patchy.
One of our vulnerable areas is GP response time. Some know to refer immediately to the mental health services. Some don't. And then there are regional variations in whether the mental health services will deal with a referral fast or slow. Self-referral to the experts is not allowed in Scotland, whereas the ability for children and adolescents (or their parents) to self-refer is now mandatory in England.
Each of us can play a significant part in improving services in Scotland. See my page here.
What are the official guidelines or standards for treating eating disorders in Scotland?
Scotland has almost nothing specific to eating disorders
But for most things, Scotland follows NICE guidelines, and there is an excellent up-to-date NICE guideline for eating disorders now.
The Scottish government has a Mental Health Strategy 2017-27 – a 10 year vision which includes eating disorders but has almost nothing that is specific to eating disorders.
The last recommendations from the NHS in Scotland were published in 2006. They are the Eating Disorders in Scotland – Recommendations for Management and Treatment. They are out of date.
See how much they need replacing:
The speed of response: Scotland's target for eating disorder treatment is a dangerous 18 weeks!
Scotland's target for its population to "access to mental health services" when they suffer from an eating disorder is… 18 weeks. That's whether you're a child, adolescent or adult, and whether your eating disorder puts you at high risk or whether it's routine care you need. Eighteen weeks is the target for any mental health illness. The waiting time target for eating disorders is no different, even though this is the deadliest of the mental health conditions, that unlike most mental health illnesses there is treatment that works, and that the earlier the treatment starts, the better. Plus, eating disorders don't disappear on their own, so making people wait does not reduce the waiting list.
Note that in England, for children and adolescents, treatment must begin within one week for 'urgent' (high risk) cases and four weeks for routine cases. Specialists must phone you within 24 hours of referral to assess your child's level of urgency.
The treatment delivered in Scotland
- The NICE guidelines are English, and they are not compulsory in Scotland. But clinicians still aim to comply with them. After all, they are produced by a team of experts painstakingly reviewing and rating the quality of the research. The NICE guideline for eating disorders was updated in May 2017. If you're unhappy about your child's treatment, check out the guideline and ask your clinicians for similar standards. More specifically, if you're denied access to family-based treatment or similar (England calls it 'Anorexia-nervosa-focused family therapy' or 'Bulimia-nervosa-focused family therapy', you would be justified in kicking up a big fuss.
- The equivalent of the NICE guidelines, in Scotland, are the SIGN guidelines. In many areas of health there are no SIGN guidelines as clinicians are perfectly satisfied with the NICE guidelines. Some clinicians (acting through SEDIG) are requesting the development of SIGN guidelines for eating disorders because in their opinion the NICE guidelines are incomplete.
- Scotland also has recommendations for treatment, and the strength of evidence for them, in 'The Matrix evidence tables for children and young people'. They are not as up to date as the NICE guidelines and if clinicians in Scotland are giving them any credence, then they need to be updated. It's reassuring to see that Family-Based Treatment (FBT) is categorised as the top ('Highly Recommended') treatment. On the other hand, at a time when experts agree that early intervention is key, it strikes me as dangerous and outdated to allow anorexia to ever be treated by GPs or general CAMHS with 'advice, self-help groups and internet resources' because it is considered 'mild'.
- When someone is "really sick" because of anorexia, the GP, mental health service, CAMHS or hospital should be carrying tests and judging the level of intervention according to the MARSIPAN guidelines from The Royal College of Psychiatrists. There is an adult version and a junior version for under-18s.
- The Mental Health (Care and Treatment) (Scotland) Act 2003 is the main Act that comes into force if your child has "significantly impaired decision-making ability (SIDMA)". There's a lot of assessment and consultation involved in applying it to your child in order to, say, feed by nasogastric tube. The act also makes provision for "Urgent medical treatment", which may be given without consent in order to save life, prevent serious deterioration or alleviate serious suffering. provisions apply
- The Adults with Incapacity (Scotland) Act 2000 concerns those who lack capacity due to mental illness. It prohibits the use of force or detention unless immediately necessary and does not authorise detention in hospital. It can only authorise feeding by artificial means if it does not involve the use of force.
- The Carers (Scotland) Act 2016, came into force in 2018. It requires local authorities to have a plan to support carers. For the act in plain English, see the Carers Charter.
How we can (and should) improve how we treat eating disorders in Scotland
All on this page here.
Financial support, benefits and allowances
If you are struggling financially, as many parents do when they put work on hold to care for their child, there are benefits / allowances you may be entitled to.
Social services may or may not be knowledgeable about these. Where I live, there's better and simpler: the local council has an expert whose sole job is to help you check you have what you're entitled to. Check out “Income maximisation” or “Benefits health check”.
Your child may qualify for Disability Living Allowance (up to age 16) and once 16, move on to Personal Independence Payments (PIP). More info on mygov.scot
See also what I found out for England.
For further support in Scotland– and to get involved
Here's a list of groups or services that can support you. For more on groups that advocate for improvements, see here.
Complaints If you or your child are not getting treatment to a standard you think is acceptable (for instance, if your child is not given access to FBT treatment within a week even though their need seems urgent) then complain. You can complain directly to someone in charge, or you can make a formal complaint to the health board. A complaint could lead to a thorough investigation of a complicated problem, but a straightforward issue could be fixed within 5 days. Details here.
Feedback via Care Opinion Check out Care Opinion, as this may be a way for you to get heard by a health service unit without making a formal complaint. Let me know if it works!
The Mental Welfare Commission for Scotland will, I believe, give you sympathetic guidance, intervene if something is not right in someone's care, and they have a most informative website. For instance, they have produced guidance on:
- handling confidentiality (decision-making and confidentiality rules begin at age 12, and then again age 16)
- good practice around 'significantly impaired decision-making ability'
- nutrition by artificial means
- and making an 'advance statement' so you can ask for the care you want if you become mentally unwell.
Schools Good schools work with parents and clinicians and the pupil to make it possible for the pupil to be on their recovery journey while in school. Sadly there are schools that refuse to supervise a child's meals or don't do it consistently. So either the child stays ill because they're not eating, or they miss out on their education.
If this is happening to you, tell your school that they have a legal obligation to support children with medical needs. The law is on https://www.gov.scot/publications/supporting-children-young-people-healthcare-needs-schools/ and there is guidance here and here.
Peer support in Scotland (parents, young people) via BEAT and NHS
The Scottish Government is funding a partnership project between NHS Lothian and BEAT to provide these two free support services for Scotland:
ECHO – 1:1 Parent and Carer phone support: https://www.beateatingdisorders.org.uk/support-services/echo-peer-coaching
1:1 Email support for young people (12-25): https://www.beateatingdisorders.org.uk/scotland-online-peer-support-for-young-people
Who can get support this way?
- Parents/carers of someone with an eating disorder aged 12-25 years
- Young people with an eating disorder age 14-25
You may offer to be the person providing peer support. Eligible supporters are experienced parents/carers or — and this is interesting — 18-35 year olds who have been in recovery for at least 2 years.
This initiative started around February 2018 and I don't have any personal experience of this kind of thing.
You may be on this page because you are parents and you value my opinions, so I'll share my view — and please remember it's only a semi-informed opinion.
I trust NHS Lothian are totally competent to oversee this kind of thing. I'm applauding the free parent-to-parent support. It's very much needed and precious.
How about the peer support for young people? My opinion, currently, is, 'I don't know', and 'It depends'.
Why my reticence? I believe my daughter's progress relied on us being the competent people who loved and supported her in a consistent way. Things were extra hard whenever we had 'too many cooks'. With this peer support service I might worry that I don't know this other parent or young person who now has influence on my child. I don't know their values, level of recovery or maturity.
On the other hand, if my daughter had been longing for connection with recovered peers, then I would have welcomed that this scheme provides a safe environment. Better this than random internet contacts. According to NHS Lothian (who, remember, know what they're doing, especially in terms of family-based treatment), all emails are moderated by the BEAT worker before they are sent on, and there are appropriate safeguarding procedures in place. NHS Lothian also tell me that volunteers are aware that it is not their role to give specific advice/treatment but emotional support and sharing of experiences (e.g. coping when moving away to university).
More importantly — and this gets me pretty excited — the email exchanges may be what gets a young person into clinical services for treatment if they have not yet gone or disengaged.
Support from me
I am in Glasgow myself and I offer support or coaching for parents, usually by Skype. Unlike the BEAT scheme, there's a cost involved as what you pay me helps me continue this work.
Scottish Eating Disorders Interest Group (SEDIG) : www.sedig.co.uk I'd encourage you to sign up to their mailing list, join their membership, follow them on Twitter, and attend their conferences. It's a group of parents, sufferers of any age, and clinicians. 'Membership of SEDIG is open to anyone with an interest in eating disorders, with an emphasis on a mix of professional and self-help participation. Most areas of Scotland are represented, and we have also welcomed members from Northern Ireland and the North of England. Members include general practitioners, psychiatrists, psychologists, nurses, dieticians, art therapists, NHS and private therapists, school counsellors, former sufferers, members and leaders of support groups, mothers and other carers of people with eating disorders – men and women – representatives of both NHS and private and voluntary sectors.' One important function for the group is to link members into a much-needed network for care for people with eating disorders. SEDIG also aims to set up a regular forum for discussion of current issues, recent developments and difficult cases, and to promote learning of new skills, development of audit and collaborative research.'
North East Eating Disorders Group ( Scotland) : www.needs-scotland.org 'Based in Aberdeen and in Dundee, NEEDS Scotland aims to offer information about eating disorders, support and encouragement in a safe, caring and confidential environment, to anyone affected by an eating disorder – sufferers, families and other carers. We aim to help ease the isolation many sufferers and carers feel. We hope that people attending meetings will no longer feel isolated with problems, meet others experiencing similar problems, have opportunities to borrow books and other useful resources as well as meet interesting speakers, and to be listened to with compassion and without judgement. Raising awareness of the problems caused by eating disorders for sufferers and their families is also part of NEEDS Scotland activities.'
In Dundee, NEEDS has an offshoot group called 'Bridging the Gap' that supports parents/carers.
Managed Clinical Network for Eating Disorders (North Scotland) : www.eatingdisorder.nhsgrampian.org for Tayside, Grampian, Highland (including Argyll & Bute), Orkney, Shetland and the Western Isles. Information for Patients and Carers, Health Care Professionals and the Managed Clinical Network (MCN) group.
Fife: The Linda Tremble Foundation
The Linda Tremble Foundation runs a support group for carers, and one for people with an eating disorder, in Fife.
Falkirk, Stirling, Clackmannanshire, Forth Valley
For parents/carers for adolescents with eating disorders, there is a group meeting the last Monday of every month, 7-8pm St Andrews West Church, Upper Newmarket Street, Falkirk. Catchment area is NHS Forth Valley – Falkirk, Stirling, Clackmannanshire areas. Do check with the organiser that it's happening. Their contact is on Twitter as @MediaWhoresband
Glasgow: Gerbera support group
Gerbera Eating Disorder Services or GEDS (previously Glasgow Eating Disorder Support) is "an informal peer-led support group for people affected by difficulties with food, eating and body image in Glasgow and surrounding areas."
BEAT in Scotland
BEAT has a Scottish arm. It's here to influence policy and to support sufferers and families. I encourage you to sign up to their newsletter.
Royal College of Psychiatrists in Scotland
Maybe not directly useful to parents, but be aware there is a Scottish Faculty of Eating Disorders within RCPsych in Scotland, chaired by the very dedicated Dr Jane Morris, Consultant Psychiatrist at the Eden Unit at Aberdeen's Royal Cornhill Hospital.
Scotland has a Minister for Mental Health
And please let me know of errors or omissions on this page.