I work on the Learning Disability Programme within NHS England as a Clinical Lead on “Stopping Over medication of People” (STOMP) with learning disabilities, autism or both. I work closely with Carl Shaw who is our lead Learning Disability Adviser on STOMP.
Public Health England research in 2015 said that at any time, between 30,000 and 35,000 people with learning disabilities are prescribed an antipsychotic, an antidepressant or both by their GP without having the conditions for which the drugs were designed to treat and have been shown to be effective (this is 1 in every 6 people known to their GP as having a learning disability) This is a human rights issue, that can have a big impact on people’s quality of life as well as a health inequality.
I am a registered learning disability nurse and my first job after qualifying was in an inpatient unit where I had to give out medication, which at the time felt like quite a daunting task as a newly qualified nurse.
I trained as a nurse in the late 1980’s in Hertfordshire at Leavesden Hospital. My nurse training had a big focus on the social model of disability and ” John O’Brien’s Five Accomplishments” of normalisation.
As part of the January 1987 cohort, I felt like quite a rebellious sort of student nurse with rights, choice & control and supporting people to leave hospital high up the agenda. We didn’t wear a uniform (apart from when we did our general nursing stint) and a number of our placements were in the community.
Quite a few of my placements were in Leavesden Hospital itself, a very large hospital spread over hundreds of acres of grounds with a farm, a horticultural area, a graveyard (where it’s reported Jack The Ripper was buried after dying in Leavesden hospital in 1919) it’s own sick wards, where patients went when they were unwell, and what had been shops and a hairdressers.
Leavesden had housed thousands of people with learning disabilities in Victorian times, and interestingly had also been used to film bits of the prison based TV series “Porridge”
However in the late 80’s it had begun slowly closing down ward by ward and resettling people into the community.
It seems odd now that although we as students were being educated to think differently, have different expectations for people’s lives, and challenge the status quo, this wasn’t always borne out in expectations on us through our practical education or placements on the wards. One example was on challenging the use of medication. Rather, we were trained on administration of what was prescribed and making sure you had good understanding of the drugs, what they were for, the correct dosages, proper storage of medicines, good record keeping, & the understanding of and observing for side- effects (this is also all very important of course)
An important part of our work in STOMP is to help make sure that for student nurses who are doing their training now STOMP forms part of their education, knowledge and practice.
The nurse’s role is critical in not only having all of the technical knowledge and practice in relation to medication, but also in supporting/advocating for the following:
* comprehensive assessments, including listening to the person, and their family who know them best , to help understand what is going on for someone, as there could be a whole load of reasons for behaviours seen as challenging including pain from physical health, not getting on with who you are living with, or being supported by, which is causing distress.
* Always looking for alternatives to medication first (Like Positive Behaviour Support)
* Where medication is to be prescribed ensuring there are baselines of behaviours (or else how do you know whether drugs prescribed or other treatments are making any difference at all)
* Regular and comprehensive reviews of medication with the GP, psychiatrist and with the multi-disciplinary team.
* And making sure that if medication is prescribed it is the lowest dose necessary, and for shortest time possible alongside other therapeutic approaches and is reviewed regularly.
Nurses need to be familiar with the latest NICE guidelines, and be ready/supported to question their multi-disciplinary team colleagues if they feel their practice isn’t in line with the current guidance. (backed up by the NMC code and professional standards for practice and behaviour for nurses and midwives)
Importantly the nurse has a key role in empowering the person and their family to be active partners in their care and treatment, making sure they are informed and are involved in decision making about care and treatment including medication.
It is also important that the drugs aren’t just stopped without proper support and monitoring, as this can be equally harmful, so a comprehensive review with the right support to manage any reductions is essential.
Carl and I would love to hear your thoughts and ideas on how we can best support student nurses to join our campaign, or any other ideas for our work. We know that unnecessary use of these drugs puts people at risk of significant weight gain, organ failure and even premature death, so it is time to address this serious issue now.
Working together and making sure all are educated and informed on overmedication and alternatives to medication we are confident we can make a difference to lots of people’s lives for the better.
Carl Shaw, Learning Disability Advisor at NHS England, talks to Aaron Wood about his job. Carl talks about STOMP LD (stopping the over medication of people with a learning disability), employment of people with a learning disability and autism and why it is important that people are involved in decisions that affect them. For more information or for medicine advice please see the NHS England website: www.england.nhs.uk/learningdisabilities/meds
Resources and links
Link to STOMP presentation in London (NHS England November 2016
Stopping Over-medication of People with Learning Disabilities (STOMPLD) 2016Reducing
Inappropriate Psychotropic Drugs in People with a Learning Disability in General practice and Hospitals in 2016. Dr David Branford Pharmacy Advisor Mental Health and Learning Disabilities,Immediate Past Chairman, English Pharmacy Board, Royal Pharmaceutical Society