I have some statistics for you on medication and people with learning disabilities:
- According to Public Health England, 17% of adults with a learning disability known to their GP are being prescribed an antipsychotic drug.
Not bad you may say, however…
- Over half of this 17% (58.1%) did not have a diagnosis in their GP record of a condition which the antipsychotic drug is designed to treat, ie psychosis, bipolar disorder, depression and anxiety
- That corresponds to 30,000–35,000 people with learning disabilities being given an antipsychotic, an antidepressant, or both, without a clear clinical justification.**
- A UCL study looked at 33,016 adults with intellectual disability and found that over one-quarter had been prescribed antipsychotics, and 71% of those did not have a record of severe mental illness**
Look at that last stat for a minute. Nearly THREE QUARTERS of people with a learning disability are given an antipsychotic without likely having the need.
- In other words: many antipsychotics appear to be used not for treating psychosis, but to manage challenging behaviour (which could essentially be sedative / chemical restraint use).
- An academic research paper details how there is a serious lack of monitoring of antipsychotic medication – in terms of therapeutic effect and side effects presented.***
- This paper highlights that when primary care is responsible for prescribing, monitoring (especially side effects) is significantly less consistent, and this is linked to poor communication from secondary mental health services
- In fact, A 2023–2024 audit in a UK learning-disability team found just 20% had their medication effectiveness and side-effects reviewed within 3–4 weeks, as NICE recommends.****
This means, 80% of people taking this type of medication are not being reviewed and are continuing to take mind altering pharmaceuticals virtually unmanaged.
What’s the point of all this…
Why am I bringing this up?
Well recently, Jude’s care provider wanted to give him an antipsychotic to help ‘calm’ (read: sedate) him on a daily basis.
The most shocking part? This medication was signed off by a doctor – a psychiatrist no less – despite the fact it clashes terribly with the particular epilepsy medicine he takes to control his seizures.
When I say clashes – I mean things like potential breathing issues, more seizures, instability, over-sedation and an overdose of anticonvulsants, to name a few.
I sent across a few stats I’d uncovered along with a huge question mark about the decision being posed. The only response I got back was that ‘ok we will log your request for Jude not to have this medication.’
I had thoughts of Oliver’s story – the nightmare that Oliver McGowan and his family went through (please please read about this incredibly awful case) – and started to panic that we may not be able to stop certain things being done to Jude because he’s an adult. But this is where it’s vital to have deputyship for your young person – again, please please get this arranged before your child is 18. I’m happy to help go through the process with anyone who doesn’t understand the paperwork.
I want to do something about this. It upsets me so much that care providers are sometimes so inadequate that the people being looked after have to take the hit.
Non-Compliance and Challenging Behaviours
People with learning disabilities are often deemed as not complying, having challenging behaviours or are even accused of aggression, violence and attacking people.
What I see are people unable to express themselves in a way we understand. They may not understand why certain things are happening, what is expected of them, or even why certain processes have to be followed. There may be triggering noises, lights people, order of events.
Learning about the person you are caring for is the only way to understand.
Imagine being forced to get dressed/be washed, etc by someone you don’t particularly like. Or who triggers you in a certain way. How would you express this if you can’t verbalise your feelings and your carer doesn’t care enough to try and learn how to actively communicate with you?
This is just one hypothetical situation but one I am sure is common across the country.
To be honest, I don’t understand why certain processes have to be followed and I’m probably not very compliant with people I don’t like either. Why should we be?!
With regards to the medication, parents can be vigilant but how many trust a doctor’s decision without doing research themselves? What about those who don’t have parents? Or parents that don’t give a damn?
All I can say is, please PLEASE don’t feel pressured into accepting antipsychotics for your young person. I initially felt that pressure. Even momentarily caved. As usual it was me bleating against a wall of opposite thinkers. But I’m so glad I stood my ground.
So many conversations that need having. What do we do?
*First two stats from a Gov.uk report
** ‘Fears that antipsychotic drugs being used as ‘chemical cosh’ in disability care – The Guardian
*** Prescribing antipsychotic medication for adults with intellectual disability: shared responsibilities between mental health services and primary care – PubMed Central
**** Clinical Audit of Psychotropic Medication Use in People With Learning Disabilities and Behaviour That Challenges – Cambridge University Press
