Thousands of people with learning disabilities are taking psychotropic drugs they do not need. Seán Kelly talks to Anne Webster and Carl Shaw, who lead STOMP, a welcome NHS England initiative to tackle the curse of overmedication
Approximately 35,000 people with learning disabilities, autism or both take unnecessary psychotropic medicines every day, according to a 2015 report from Public Health England.
Psychotropic medicine is usually used to treat psychosis, depression, anxiety and sleep disorders. It also includes epilepsy medication when this is used only for its calming effect rather than to treat epilepsy. However, in the cases that PHE looked at, there was no diagnosis or medical justification. The medication was simply being used to control behaviour.
As Anne Webster and Carl Shaw from STOMP tell me, 35,000 people is enough to fill a large football ground. It is a shocking figure so I am pleased to meet up with them to hear more about this NHS England initiative to create awareness and tackle the problem. STOMP stands for Stop Over-Medicating People. “It’s a great name,” I say, “You have got my support already.”
Webster trained as a learning disability nurse and previously worked with the Improving Lives team, who carried out reviews of everyone who had been an inpatient at Winterbourne View.
Shaw, a man with learning disabilities, used to work for care provider Dimensions as a quality auditor.
Together they lead the STOMP project, which is halfway into a three-year span.
Many people must have suspected that overmedication goes on but the PHE report put a reliable figure on it for the first time. After the report’s publication, NHS England promised a swift response, which led to STOMP being set up.
Webster and Shaw lead a small team of staff, which includes three part-time pharmacists and a project coordinator. A family carer advises.
STOMP has a project plan with clear goals for each of the three years – its first annual report was recently published (STOMP, 2017).
Why is overmedication happening?
Psychotropic medication can be a response to difficult situations such as self-harm, harm to others or displays of behaviour seen as challenging.
Webster says that is it understandable that carers sometimes go to a GP “feeling desperate and looking for help”. GPs in turn can “feel they are put on the spot, and may prescribe this kind of medication to help a stressed carer manage”. The practice becomes ingrained when people get repeat prescriptions and do not have regular medication checks. The person’s sedated state can start to seem normal
to others.
Shaw tells me about when, as quality auditor, he visited a service and met two people who used wheelchairs and did not communicate with words. When he turned up at 8am, the two people were already up and dressed, alert and ready. He then noticed that, for the rest of the day, they seemed very tired.
When he asked why, he was told that it was just because they had profound learning disabilities. However, he was not satisfied with this answer and asked about their medication. Shaw wrote a report and fed back to the staff and manager who then started to look at their prescriptions.
Webster and Shaw sometimes find people think the issue is simple to address. Some think that all you have to do to solve the problem of overmedication is to speak to doctors. STOMP’s approach is to reach out to all the different professions, social care providers and families. It is a “whole system” issue. They strongly believe that awareness is needed right across the system.
They have heard professionals saying “but if we take them off medication we’ll have to find more for them to do”.
Shocking as this attitude is, Webster and Shaw are keen to avoid simply blaming people and to find ways to develop better awareness. Their approach is that everyone has a responsibility to challenge overmedication.
Regular medication reviews are essential to ensure that anything taken is really needed. Webster also points out the importance of finding out what is going on for the person – are they bored, frustrated or even in pain? These things can lead to the kind of behaviour that is “treated” with medication.
One strand of work has been the STOMP pledge. In 2016, the Royal Colleges of Nursing, Psychiatry and General Practitioners joined forces
with the Royal Pharmaceutical Society,
the British Psychological Society, NHS England and the health minister to sign
up to take real and measurable steps against overmedication.
STOMP then developed a social care pledge, which 150 social care organisations supporting more than 50,000 people with learning disabilities, autism or both signed up to, promising to take practical steps to reduce unnecessary psychotropic medication. These organisations report regularly to STOMP about their progress. A new healthcare provider pledge will be launched in April this year.
STOMP’s first report features the story of 16-year-old Josh Wills, who has learning disabilities and autism. He was in an assessment and treatment unit for three years, and was featured on national news when he was discharged with a tailored package of education, health and care near his parents’ home in 2015, his medication greatly reduced.
His father says: “Josh used to be prescribed a number of antipsychotic and sedative-type medications when he was in hospital and far away from home. He has now come off virtually all these drugs. I have seen Josh improve physically and emotionally. He seems more alert and, in my opinion, his long-term memory of people and places has improved greatly.”
Alternatives
Webster is quick to point out that it would be wrong to condemn all psychotropic medication as bad. It can be dangerous for people to just stop taking their medication in an unplanned way. The process needs to be managed carefully by a GP.
Some people may always need some medication, but it should be the right kind and the right amount for the shortest period of time necessary.
The STOMP campaign argues for much more consideration to be given to alternatives to medication such as positive behaviour support, which looks at the motives behind a person’s behaviour. A dedicated STOMP page on the Voluntary Organisations Disability Group website (VODG, 2017) gives links to alternatives to medication as well as advice for families and carers. There are also toolkits for GPs and social care providers to assess progress and build action plans.
The Care Quality Commission has signed up to the pledge and is training all inspection staff, while the Challenging Behaviour Foundation is working with STOMP to produce a pathway document, to help people identify the steps they can take to reduce overmedication. STOMP has also commissioned inclusive theatre group MiXiT to create a performance piece about overmedication, which received a standing ovation at the Royal College of Psychiatry conference in Dublin.
The STOMP project is due to run for only three years so already attention is being paid to what will happen once it is finished. Steps have been taken to embed the work into other NHS programmes, including the current review of mortality of people with learning disabilities. As Ms Webster points out, too much psychotropic medication over a long time can lead to weight gain, organ failure and premature death, so STOMP’s connection to the mortality review is important.
Thanks to STOMP, care, education and treatment reviews for children and young people, and care and treatment reviews for adults now include a “key line of enquiry” about medication. Annual health checks now include questions around overmedication.
Research
The project has developed a research group via Public Health England to provide detailed data on the amounts of medication people are taking, which will show whether the use of drugs such as antidepressants and antipsychotic drugs is increasing or decreasing. This will give STOMP direct feedback on the impact of its work.
One concern is that some GPs may be dismissive of requests for medication reviews. Webster and Shaw suggest reminding them that the Royal College of GPs is a STOMP pledge signatory. Support from learning disability teams should be available if needed in such situations.
My final question was what message did STOMP team have for readers of Community Living. Webster says: “One of the biggest messages is about regular reviews and checks. Why is this person on this medication? Is it having the right impact for them? Is it improving the quality of their life?”
Shaw suggests that if any of our readers have any stories that can be told, or want to find out more, then they should get in touch. Webster and Shaw can be contacted via Twitter.
Finally, the last word should go to an activist. Jenny Carter is a remarkable woman with learning disabilities and autism and one of the founders of Together All Are Able, a community interest company that focuses on
self-advocacy.
She says: “STOMP is important as we have got to make sure that people aren’t overmedicated. If they are, this can cause physical health problems and it can stop people being discharged from hospital. It can also stop people being able to take part in decisions about their life. It’s a huge issue.” n
Contact Anne Webster and Carl Shaw: t @AWebster67
References and resources
Public Health England (2015) Prescribing of psychotropic medication for people with learning disabilities and autism. http://tinyurl.com/y7g5t9c9 (includes “easy read” version
STOMP (2017) Stopping over medication of people with a learning disability, autism or both (STOMP). Annual Report. www.england.nhs.uk/learning-disabilities/improving-health/stomp
Voluntary Organisations Disability Group. STOMP. 2017. Resources including alternatives to medication and GP and provider toolkits: www.vodg.org.uk/campaigns/stompcampaign
Seán Kelly was chief executive of the Elfrida Society from 2001 to 2012 and is now a freelance writer and photographer
