Longer ago than I care to remember, I was a ‘psychiatric nurse’ working with people with learning disabilities in hospital settings where up to 20 people lived together in confined spaces.
People hardly ever got out, and had to put up with all sorts of pressures from living with other, often unpredictable people. This very often caused challenging behaviour, which would be managed through medication.
I remember people being heavily sedated on a daily basis. I remember people drooling from the mouth. I remember a man known as ‘looky ups’ because in the days following his monthly injection he would follow you around saying ‘Nurse, I’ve got the looky ups’.
The medication caused his eyes to persistently roll uncontrollably upwards. I can’t imagine how horrible this must have been for him – and the strange thing is, I don’t remember any reason why he was on that medication – he’d just been on it for ever.
Medicating people for environmental or even simply historical reasons has been an elephant in the learning disability room for many years. Although far fewer people now live in institutional settings, there remains a culture of managing behaviour with medication, rather than tackling root causes such as environmental factors.
All of which explains my excitement and pride at being Dimensions’ health lead focusing, for now, on helping my organisation implement the NHS ‘STOMP’ (Stopping the Over Medication of People with Learning Disabilities) programme.
First up, an audit. How many of the people we support are on psychotropic medication? When did each individual last have a multidisciplinary medication review? Did they and their family actively participate?Does the team understand why the prescription is in place? Is there a reduction plan?
Although an arduous process, we now have all these data points and many more. That means we can start to work at local level to get the numbers moving in the right direction for the person.
Every Dimensions colleague being trained in medication now has to complete a module around STOMP. As a result, our support teams are now more confident to speak up on a person’s behalf. Katy is an early beneficiary; you can read her amazing story here.
STOMP work is also taking place within other healthcare bodies such as the Royal Colleges of General Practitioners and of Pharmacists. This multi-disciplinary approach is a vital part of ensuring the effectiveness of STOMP and ultimately means that when we support people to visit their G.P. or Pharmacist for a medication review, there will be a greater chance that those professionals will understand the issues and options available.
In Northumberland and Tyne & Wear, for example, Dimensions is collaborating with the NHS Trust’s GP and Pharmacy Learning Disability Leads.
Together, we aim to help GPs across the region better understand how to support people to have better health and in particular how to make sure that the right kind of medication review takes place for all those who are prescribed powerful medicines that affect how they feel and behave.
As part of this project, a (small) group of local GP’s were surveyed. Just half said they were confident in treating people with a learning disability.
Only one in five said that they were confident in reviewing medications that had originally been prescribed for behavioural reasons. And none said they were aware of Positive Behaviour Support as an alternative to medication.
Most support workers believe that the GP understands medication, and will be able to see medication in the wider context of the person’s life. This research does not support this.
The ground-breaking work in the North East aims to increase GP knowledge and confidence by delivering direct training for GP’s from people with a learning disability and by developing a template process for GPs to support STOMP medication reviews. I hope that this work will have an eventual national impact via NHS England.
But national impacts are made up of a multitude of personal success stories, like Katy’s.
If you are concerned about your own medication, or that of a loved one or someone you support, I hope Katy inspires you to demand action to ensure that you or your loved one is not one of the 30 – 35,000 people with learning disability and/or autism who are being wrongly medicated in this country today.
And if you would like to work in partnership with Dimensions to make things better for everyone, I’d love to hear from you – firstname.lastname@example.org
By Dave Robinson, Health and Wellbeing Programme Manager