Stop press! BEAT is campaigning for waiting time targets in Scotland!
- Stop press! BEAT is campaigning for waiting time targets in Scotland!
- How are we doing in Scotland?
- What are the official guidelines or standards for eating disorders in Scotland?
- Where we can (and should) improve how we treat eating disorders
- For further support — and to get involved
7 November 2017: Please sign the petition:
If you have any doubts that it’s needed, see T’s comment at the bottom of the page.
How are we doing in Scotland?
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. 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 are lacking in some areas, 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. 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). Overall, many staff have had a pretty basic 2-day FBT awareness course, but 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, 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 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.
What are the official guidelines or standards for 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.
Here is the one and only bit in the Scottish government’s Mental Health Strategy 2017-27 – a 10 year vision that is specific to eating disorders. Please remember we are dealing with the mental health condition that has the highest mortality:
In other words, someone in Scotland believes that the only thing required that is specific to eating disorders, the deadliest of mental health illnesses, is an app. And some policy-maker in Scotland believed this enough to leave aside the expert evidence-based recommendations which many clinicians and parents sent off when this strategy was at the consultation stage.
The good news is that excellent colleagues in Lothian CAMHS are working on this ‘digital tool’ (at least I think that’s what it is): what they are creating is a resource for people to find information fast.
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: government target 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 and research tells us that the faster the response, the better and swifter the recovery.
More on this further down, but please 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.
The treatment delivered
- 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. SEDIG and some clinicians are requesting the development of SIGN guidelines for eating disorders because they think the NICE guidelines are incomplete.
- 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 — the adult version or the 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, when it comes into force around 2018, will require local authorities to have a plan to support carers.
Where we can (and should) improve how we treat eating disorders
My opinion is this. We have colleagues in England who have developed an extraordinary Access and Waiting Time Standard for treating youngsters fast and expertly. Here’s what they have, and which is not universally accessible in Scotland:
- Parents can self-refer to the specialist community eating disorders service. The clock starts at this time.
- If the GP is the first person to be consulted, they must contact the specialists immediately by phone or electronically, and the clock starts at this time.
- On the very day they receive a referral, the specialist service must get in touch with the family to assess the level of risk.
- Depending on the level of risk, urgent cases must get treatment within one week, and routine cases within 4 weeks. The clock starts on the first day the sufferer or parents first contacted the GP or the specialists.
- The specialist eating disorder service is made up of clinicians with a high level of training and supervision.
- and more…
The Standard comes with teeth: health boards will be penalised for under-performing. Clinicians in England have been re-organising their services, recruiting more staff, attending training and conferences, exchanging ‘how-tos’, and auditing each other voluntarily. It’s not all good, but overall the stories I’m hearing from parents in England have gone from dreadful to admirable. Also, we have the first set of results (2106-17) showing that it’s working.
In Scotland some areas do as well or better, and they’ve got there voluntarily and enthusiastically over the last few years. But there’s nothing to force other areas to do better.
I think we can make a real difference to the next lot of sufferers by asking for an enforceable standard. Most of the work is done, thanks to England’s model.
And we can do even better by applying excellent standards not just to children and adolescents, but to all ages.
(Feel free to copy and send out this image)
Update November 2017:
I’m delighted that BEAT is campaigning for a waiting time standard. Please sign the petition.
For further support — and to get involved
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.
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.
Join the mailing list for parents in Scotland: The Scottish CAMHS Eating Disorders steering group gathers three times a year with CAMHS clinicians who treat eating disorders, as well as a user representative from the charity BEAT and a couple of parent representatives (I was one of them for a while). Parents, join the mailing list to be informed of what those treating our children are working on, wondering about, and what they might welcome our input on. I’m holding this mailing list and it’s different from my list of subscribers to this website. More details here.
Scottish Eating Disorders Interest Group (SEDIG) : www.sedig.co.uk I’d encourage you to join this 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.
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.
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.
The minister for mental health is Maureen Watt
She said that any parent can email her directly (firstname.lastname@example.org). She can’t get involved in individual cases but wants to know of issues that may represent general problems. She reports to the cabinet secretary for health and sport, Shona Robison.
Please message me if I’ve left out any groups relevant to parents in Scotland. For anything outside Scotland, I’ve listed information here.
And please let me know of errors or omissions on this page. I’m happy to learn from your experiences, whether or not you agree with my current assessment and opinions 🙂 I’d also like you to know I want people to get excellent services wherever they live in the world, and have no wish to make out any country or political party to be worthier than another.