Last updated on June 23rd, 2020
What's going on and what needs improving
It's never been a better time to be part of the changes you want to see in Scotland. We have a mental health minister who wants to bring change, following a review of eating disorder services. I don't think this is window-dressing as in the past, so let's grab this opportunity to make services a lot better.
On this page I tell you of THREE actions you can take right now, and then I list the main issues to campaign for, the way I see it.
Action 1: Tell the Mental Welfare Commission what matters to you
The Mental Welfare Commission is doing surveys (click here) of the experiences and advice of people directly or indirectly affected by an eating disorder. You may be sick of surveys but this one is well worth doing because it will inform the Scottish government's review of services (explained in Action 2).
The deadline for the survey seems to have been extended. In any case, but you can email or phone them (ask for Kathleen Taylor), before they publish their report in the summer of 2020.
- Is there anything you would like to tell us about the care and treatment your relative received?
- Anything you feel is relevant would be good.
- If you could mention the impact on your family
- Any one thing you feel would improve the services
Action 2: Tell your MSPs what matters to you
Throughout 2020, it's really worth telling your MSP of your experience of eating disorder services, because the date for review is Spring 2021.
Most of our MSPs already have a good level of awareness and concern over eating disorders. They're already on our side. What they need to learn from us is the specific actions government can take that will improve eating disorder care.
Write to them or meet them with your anecdotes, your experience, your views. Ask them to feed this information to the minister for mental health, so that it is included in the review. Find and contact your eight MSPs here.
- Tell them what didn't work for you, or didn't happen soon enough, and the changes required.
- Or tell them what did work well for you, and how you'd like them to support action so that this type of care is made available to all in Scotland.
- Below I guide you through the main issues I am aware of (mainly for child and adolescent services), and you can ask for those to be addressed.
Action 3: Petition to introduce waiting time targets
This is so that anyone with an eating disorder — children, adolescents, adults — gets treatment within a maximum of 1 week for urgent cases, 4 weeks for routine cases.
This petition from BEAT continues to collect signatures. Please sign and ask clinicians and friends to sign. Having said that, this petition has been ongoing for some years now, so presumably it isn't particularly effective. My opinion is that numbers are bound to be low, so the way to get the government to make changes isn't through numbers, but through individual contact, as described on this page.
What needs improving?
Your experience matters. On this page I prompt you on how to write to an MSP about what matters to you, in order to get change. Whatever has been poorly done for you, is worth campaigning about.
Here are some of the actions which I am keen on:
- Drastically reduce waiting times: introduce standards and monitor them
- Allow self-referral to specialist eating disorder treatment (bypass GP referrals)
- Create eating disorder treatment teams staffed by experts
- Create standards for the training and supervision of these experts
- Make Family-Based Treatment the first-line treatment
- Offer day treatment as well as specialised home-treatment teams
- Provide ring-fenced extra funding to make all this possible
- Regarding 'health promotion' and 'the fight against obesity', ensure schools only use safe and evidence-based strategies
Change does happen. In England, fantastic changes were made in a matter of months, not years. Norman Lamb and the then depute prime minister Nick Clegg decided the changes were needed, and suddenly it became a priority for health boards to provide what experts have known all along is needed.
More details on what needs to change
If you're not already saturated by information on this page, read on for more on some of the issues listed above.
Scotland would benefit from a well-funded standard for prompt, specialised care.
The aim is for people with an eating disorder to get access to specialised treatment fast. That means the treatment must be available fast, and it must be specialised, based on best evidence.
Currently, in some trusts, youngsters are given individual therapy before any attempt is made to give them a family-based approach. That's not OK. I've also come across cases where the family approach is delivered by someone who clearly has not had enough training.
If you have any doubts that faster access is needed, see comments from T and from PJ at the bottom of my Scotland page.
You can also get a sense of how a maximum waiting time standard would work by reading my account of England's standard, which was introduced in July 2015. In short: what a difference it's made!
In Scotland, we have a waiting time target for mental health services in general. The target is … 18 weeks! So far, our ministers have indicated they are satisfied that this target is doing the job. They reckon health boards can prioritise as they see fit.
But they have no data to back up this belief, and we have first-hand accounts of families being denied access to eating-disorder treatment, or being told the wait will be many weeks. We really don't know how well health boards are managing to prioritise, and if they are coping with the demand.
Eating disorders have this huge advantage over other mental health disorders: we have treatment that works. But it needs to start early. This is why it matters to have a waiting time target — and statistics — specific to eating disorders.
Note that for youngsters up to 17 years old, many of Scotland's CAMHS are bending over backwards to see families within one/four weeks. I personally know that some CAMHS have managed this. But we don't have any statistics to know how often they manage, and how often the service just can't cope.
Unlike flu or sore backs, eating disorders don't go away without treatment. Long waiting times don't reduce the waiting list — I believe they lead to services being overstretched because with every day that passes the illness takes more work to treat.
My guess is that sufferers, carers, and clinicians all agree that one/four week waiting time targets are well worth aiming at. I hope that this campaigns allows us to know how close we are to the goal, unpicks where the difficulties lie, and mobilises whatever help health boards need to make it happen.
So what should we do about waiting times?
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, which I think we should ask for too, as it 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.
- Statistics are collected, so that government knows how long people with an eating disorder are waiting
- and more…
Note that the Standard in England 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 now have some results 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)
England and Scotland – it's not a contest
I see England's experience as a useful model, which is why I make a lot of noise about it. Official statistics show many services have improved rapidly, and I have seen a big change in the first-hand accounts from parents in England. Having standards to comply to works. But with some politicians in Scotland, I've noted that comparison with England can bring out a 'them-versus-us' reaction instead of thoughtful consideration. I don't know what the answer is, except to be aware and navigate discussion with care.
Clinicians and service users – we're a team
We have some truly excellent services, with clinicians who have led world-class changes. We shouldn't minimise this, we should dialogue with kindness and consideration and we should never make this an us-against-them issue. When we ask for patients to be seen within one week, of course some clinicians will run the other way if they're already overwhelmed. We need to find workable solutions together.
How to create a great standard
It is easy to say that waiting time standards create their own problems. There is a history of such standards in the NHS, some good, some bad.
The Scottish government commissioned the much respected Harry Burns for a report on targets in health and social care. What does it say? Targets can bring improvements. The main thing is to include clinicians and service users when you devise them. So let's do that for eating disorders. The English targets give us a starting point and we can build something that will work for Scotland, for all ages.
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.