Thursday, September 9, 2010

Jewel theft

Anyone who has a child with a learning disability knows he/she gets less good health care than the general population. They don't always understand that pain isn't normal and can often have something done about it - and they often can't communicate it until it gets extreme. Well now research shows, it's official. Prof. Emerson and Dr. Baines at Lancaster University have just produced a report 'Health Inequalities & people with learning disabilities.' that spells out how and who are affected - and how poorly these people are served. They die younger, have more illness and the current health service isn't responding proportionately. It may not be news but it is true.

An personal example -
We've watched (on the ward) people with learning disabilities being admitted to hospital needing a gastrostomy (feeding tube) replaced. It actually takes 15 minutes and doesn't need a doctor or even a qualified nurse - I've done one myself and my wife is regularly fallback and helps train nurses in this procedure. It has to be done promptly - because all the persons feed, liquids and medication go down it, and also because if it isn't, the hole into the stomach closes up and needs an operation to reopen it. We watched one learning disabled lady unecessarily admitted to hospital and not get hers done for four days - no food, no drink, no epilepsy meds, much distress and a number of complications - I don't know if she had to be operated on. There was no one trained for this procedure on duty over the Bank Holiday.
I didn't stand idly by and just watch, but when I did comment it was made very clear to me that it was none of my business and our own position would be affected if I took it any further. We were discharged later that day.

I've mentioned elsewhere on this blog how inadequate hospitals are at dealing with disability and how they put vulnerable people at risk. I don't blame the individual doctors, nurses and nursing assistants - I blame a 'one size fits all' system with a 'tick box' culture. I grew up with the NHS as the crown jewel in a welfare state, with decent health care free to those who needed it - somebody stole the crown jewel and replaced it with a very poor paste fake - and I want it back.


  1. Hello ... followed your link from the guardian. I have long counselled not leaving vulnerable people alone in hospital. I am a carer for my now adult daughter and have over the years seen both exemplary care and some which was positively dangerous. When I have bought this to attention of the ward sister the excuse is that they were 'agency' staff and she can not do anything about it.

  2. We've had the 'Agency' excuse as well. I accept agency nurses may not be as well informed on the continuing patients as the regular staff but if they're briefed well enough they should be. A bigger problem for us has been regular nurses not trained in the 'specialist' procedures our son needs daily - e.g. pump feeding, intensive physio/PEP therapy etc.. For them to blame it on agency nurses isn't good enough.