Why Beat’s waiting time petition deserves your time

Posted 17/08/2018

We're delighted to feature a guest post by Eva Musby, author of Anorexia and other Eating Disorders: how to help your child eat well and be well, about our campaign to introduce waiting times standards in Scotland to match those laid out for young people in England.

Devastating stories from parents in England used to come to me with terrible regularity. I’d hear how their child was on a 10-month waiting list for CAMHS, or how their GP was refusing to refer. Meanwhile in Scotland (where I live) eating disorder treatment for children and teens was at the leading edge. Every health board had CAMHS staff trained in family-based treatment (FBT), often delivered fast and to a high standard. I’ve been hearing of youngsters in Scotland getting well in a matter of months, not years, and that the need for inpatient beds has plunged.

For a long time I was distressed by the inferior care for my friends in England.

How did England change the landscape?

Then two and a half years ago, our collective jaws dropped when England launched the Access and Waiting Time Standard for children and young people with an eating disorder. Trusts had to deliver the following:

  • Specialist community eating disorder services to whom you can self-refer.
  • Urgent cases have to be seen within one week, routine ones within four weeks.
  • Specialist services have 24 hours to speak with parents and assess the urgency
  • The treatment must follow NICE guidance (which in the majority of cases, means a family-based approach – a huge change for many English trusts)
  • And lots more, all backed by an annual injection of money.

Suddenly, England is providing a model for the rest of us.

When it was launched, my friends in the eating-disorder world were cynical. BEAT, meanwhile, has been doing its job in highlighting current failures. Yet the stories and the statistics have bowled me over.

Is it working?

After just one year, a majority of young people who were referred were getting treatment on time – within one or four weeks. What a remarkable turnaround! In that same year, health trusts had to re-organise services, recruit staff, get clinicians trained in specialised family therapy and in specialised CBT, and set up supervision. At the start, therapists didn’t know how they would cope. Courses and conferences sprung up to help them get up to speed. I saw committed clinicians on online groups sharing knowledge and auditing each other.

The official statistics match the impression I get from talking to parents and spending time with them online. It’s still really awful for some – some services haven’t improved; others have but the demand outstrips their capacity – and at the same time for many families the care is really good.

Now when I support parents in England, chances are they want tips on how to get their child to eat. Or how to answer those dratted ‘Am I fat?’ questions. They are getting on with the job of treatment, not fighting to get into treatment.

To me England’s experience shows how much is achieved with a robust top-down directive. It is not perfect, and like all enforced waiting time standards in the NHS, they work best when clinicians on the front line are involved in their design and implementation. But in all its imperfections this directive has brought about extraordinary improvements. I want some of this for the rest of the UK.

Wait one week in England, eighteen in Scotland

In Scotland we are doing well in some aspects, but it’s time to shift the things we do poorly. (I’ll let my friends in Wales and Northern Ireland speak for themselves.)

Scotland’s maximum waiting time targets – and the statistics that are collected – apply to any mental health disorder. It’s set at 18 weeks.

Yes, the target for this most deadly of disorders is 18 weeks.

Government policy makes no difference between eating disorders and any other mental illness, in spite of this major factor: we have treatment that works… but the treatment needs to start early.

Why is Scotland flying blind?

Naturally, people in Scotland want standards that match the best of England’s. And we want improvements for all ages, not just children and young people.

The health and mental health ministers say that the 18-week target is fine and it’s up to health boards to determine priorities. They also trust that health boards are delivering evidence-based treatment. Yet they have no data.

I would like government to set high standards right now. But if ministers continue to say that health boards are already delivering top care, then they should have evidence. We should ask that:

  • They collect waiting time data for eating disorders.
  • They monitor that the treatment every single health board delivers is NICE-concordant.
  • Yhey monitor that health boards are contacting parents and sufferers to assess the level of urgency of each referral and to prioritise.

Right now, all we have is first-hand accounts, the good and the bad. Without statistics we don’t know whether the bad ones are exceptions or if they signal a deeper trend.

The stories that show all is not well

I can tell you of a boy who was denied access to family-based treatment because CAMHS did not consider him to have an eating disorder. His eating difficulties, in their view, were due to his anxious parents. They instructed the parents to stop getting involved in the boy’s meals.

The same happened with a little girl, but worse. CAMHS did not have the expertise to diagnose a complex eating disorder, so they blamed the parents for her state of starvation and looked at putting the girl into care. Meanwhile the parents were begging for access to the health board’s excellent eating disorder service to help diagnose and feed her.

I know of parents who saw their teen stagnate in individual therapy, when family-based treatment was denied to them (this flouts NICE guidance). No convincing reason was given and the parents were helpless.

Recently I was supporting another couple whose little boy was denied access to family-based treatment. This excellent service said it was overstretched and was prioritising the sickest children.

Another excellent team missed a chance to treat a little girl early, when her sweet and compliant nature would have made feeding a breeze. Her rigidity shot up during the three and a half weeks it took to get her first appointment. She could barely manage a sip of water. If the team was overstretched before, the delay surely made it worse.

Why it’s down to us to get improvements

When they’re not coping with demand, clinicians don’t tend to write to ministers and they certainly don’t set up petitions. They tell me their pleas are interpreted as empire-building.

The people who are really convincing, and who need to make a noise, are us. Parents, loved ones, service users.

When a service is in this situation, our government ministers don’t know, because all they are currently monitoring is their 18-week target for mental health services in general.

The cost is borne by our kids, and the parents and siblings and all those who love them. And because eating disorders don’t disappear by themselves, all that happens is that clinicians have a harder, longer task when they do eventually start the treatment.

All the above stories end well. The parents got help and eventually got access to top treatment.

There will be stories I don’t know, where parents didn’t reach out to the parent community, where they got stuck at the GP or generalist CAMHS stage.

That’s why I want all of the UK (all of the world, actually) to have provisions on a par with England’s waiting time standard. Sure, we may want to change some details and do things better. Any health standard needs to be devised with the participation of front line staff and service users. The expertise is there – we just need government to commit.

Does the urgency go when you turn eighteen?

So far I have only discussed under-18s. England’s standard, tragically, does not apply to 18+ and thankfully Beat is campaigning to change this. I am also glad that for Scotland and Wales, Beat’s campaign is for all ages.

Change your world

So go ahead. Sign Beat’s petitions, wherever you are. Get your friends and clinicians to sign too.

Then take it one step further. Our governments are here to serve us. Tell your MP or MSPs or Assembly Members what’s needed. You can get help from Beat’s excellent Campaigning Toolkit.

For Scotland, I offer more hand-holding on my website to help you guide your MSPs. I invite you to leave a comment there to help others see they are not alone in working for change.

Our MSPs know how horrible and deadly an eating disorder can be. A recent debate in Scottish parliament showed that they care. My guess is this will stay at the level of ‘talk’ until our MSPs have clarity on what action is needed. We are the ones who can give them that.

Let’s help the next families down the line.

Let’s engage with our government.

About Eva

Eva Musby is the author of a book and YouTube videos that are widely used in the NHS, supporting parents to help a son or daughter suffering from an eating disorder. She also offers support to parents by Skype.

Check out her book, videos, talks and individual coaching, on https://anorexiafamily.com

You can meet her at Beat’s next Frontline conference in November 2018, where she’ll be delivering two sessions on emotional and practical skills for parents.

Her resources are based on her own experience as a parent, along with scientific evidence, advice from other parents and expertise from treatment providers committed to evidence-based practices. She lives in Scotland.