Learning Disabilities and Health Care


It’s amazing how easy it is to become accustomed to writing on a regular basis. I miss one day and it feels distinctly odd! Habit or obsession, well, you can make that judgement! The reason I didn’t update yesterday is that I had an early morning (meaning before ‘normal’ working hours) assessment.  I invariably write up my posts first thing in the morning and apart from always feeling a little bit anxious before Mental Health Act assessments – this one in particular had been on my mind so I wanted a reasonably clear head.

There was though, one story I wanted to comment on, however briefly.

Namely, the scathing report published on Tuesday by the Health Ombudsman about institutional discrimination within the NHS relating to treatment of people with learning disabilities. Apart from being horrified by the events outlined in the report, I was also shocked.

I worked for about seven years in total in a residential care home for adults with learning disabilities. It was my first ever job (discounting holiday jobs!) and my first taste of the social care sector. When I started my social work training (during which I continued to work at the same home on a part time contract) I was absolutely sure I wanted to work in that area after qualifying. Of course, things happen and I am happy in my job (generally) now but unsurprisingly, the more I read of this report, the angrier I become.

Other sources have unsurprisingly picked up on it.

Mental Nurse asks how many of the problems related may come down to inexperience of medical staff at relating to and working with people who have learning disabilities as well as poor communication being a key to poor service delivery.

Campaigning for Health examines the particular case of Martin Ryan, one of those named in the report and the role of the Mental Capacity Act (2005) in defining a drip feeding as medical treatment which can be withdrawn

The Guardian publishes a picture gallery of the six people whom the report discusses. It is chilling to see the faces of those whom the service has so horrendously disregarded.

Mencap publish a response to the deaths of each of the six people named in the report.

To me, the story shows how far we need to go to understand and care for those who need additional support.

I was thinking about my own experiences in the time I worked in residential care. Generally we had very good relationships the local GP surgery. The GP would visit the home (which fortunately was about a 2 minute walk from the surgery) from time to time and knew each of the residents reasonably well.

On one occasion, one of the residents fell and broke her arm. She was admitted to the local hospital overnight – I don’t remember too many of the details but I seem to remember it involved some minor surgery. She was terrified. Hospital is where her father went to die. She was sure if she went to hospital she would die. I went to hospital with her – and I was allowed to sit with her through the night, on a chair, next to her bed. So there would be a familiar face. This was going back more than a few years, well over 10 years come to think of it.

I don’t know how ‘standard’ that would be, nor how many residential homes would be able to release staff like that (although, come to think of it, I think I wasn’t rota’ed to work at the time) – but I felt much more confident being able to sit with her and reassure her.

My only rather hollow hope is that these reports will lead to some real change, action and soul-searching to ensure that an excellent quality of care is delivered across the board.

Mencap are currently running a ‘Death by Indifference’ Campaign. The charity’s response to these particular cases is just the start of their campaign to ensure equality of service and sensitivity to the needs of those with learning disabilities.

5 thoughts on “Learning Disabilities and Health Care

  1. Oh, my.

    This population is always at risk–more so, I believe, than other vulnerable populations.

    Tragic.

    • It is. I really really hope the campaign has some effect. My hope lies in the fact that this report had a fair amount of media coverage and there seems to be universal shock and disgust at the treatment received which I hope will influence future care.

  2. I am so appalled by these stories I’m almost lost for words. The one that really got to me was Emma, inparticular the statement that “doctors decided that Emma would not cooperate with treatment because of her learning disability” – I’d like to know what they based this on, whether anyone actually took the time to ask Emma what she thought about it, whether she was ever given any choice in the matter. I find it hard to believe that in this day & age there is still this sort of descrimination in Britain… wonders will never cease I suppose

  3. It is a difficult population. We had a situation in our hospital that probably should have gone to the Ethics Board. The patient was developmentally disabled (I think you in the UK must refer to them as learning disabled) and needed a certain type of treatment. The patient would have to come to the hospital for these and would become frantic upon entering and then basically catatonic from there on out…the patient knew they were in for pain and other nasty side effects from the treatment they were receiving. Whether the treatment was going to be life extended, well there was some question about that. So, who was to decide whether to put the patient through all they were going through for potentially limited benefit? The family, of course, because they didn’t feel the patient had the ability to make that kind of complex decision. This was certainly true but our department was left with the feeling that the patient’s desires maybe were not being taken into consideration. It was very difficult.

  4. Miracle Worker – Yes, it is really chilling when you read the details.
    Amy – Ah, I thought there was a different term in the US but wasn’t sure what it was – that would be ‘developmentally disabled’ . There are some difficult decisions involved but these cases display worse than shocking care, not a careful consideration of pros and cons which should have been the very least expected!

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