I have just been for my annual appointment at the Queen Elizabeth Hospital in Birmingham. I was disgusted because in the waiting room there were pamphlets to read about certain neurological conditions and there was not one about Ataxia.
Ataxia: I have just been for my annual appointment... - Ataxia UK
It is no surprise to me - most people, including many medical ones, haven't heard of it. So assuming that the hospital you attended is just a general one rather than a special one dealing with Ataxia on a regular basis they would unlikely to have them. How about you taking some there yourself? I'm sure Ataxia UK could provide you with some.
I think your wrong to say your disgusted there was no leaflets about ataxia ..... Can you imagine the cost implications for having leaflets available in lots of languages about every medical condition????. Why not organise a poster yourself rather than critizing ataxia UK who after all are a charity. Contact them and ask for a poster then next time you go to the QE take it and ask them to display it. X
I can understand the reasons for not having leaflets everywhere.but recently I had to go to UHW's ae department after standing on electric plug.I had to sit for 5hrs while less serious cases who hadn't waited as long as me were seen,when my daughter explained to the triage nurse about my ataxia and the back spasms I get,made worse by sitting so long,she had never heard of ataxia.and when I did eventually did get seen by senior nurse he had never heard of it.
I'm not blaming the nurses,the fault must lay with the people who decide what they're taught.
While I don't expect to be treated any better than everyone else,I don't expect to be treated worse.
It is absolutely great that your group made posters about ataxia for local areas and extremely disappointing that the Queen Elizabeth Hospital have not displayed what you have sent them. I can only assume they already have many posters and leaflets on display representing some of the hundreds (if not thousands) of neurological disorders seen in the out patient clinic, all of which will be fighting for space. Although very frustrating, I am sure information on disorders that are more commonly seen in the out patient clinic, which I am assuming is general and not for specific disorders, will be given priority.
Please do not be disheartened. There are many things those of us with and affected by ataxia have to persevere with, however angry we are made to feel, and this and raising awareness generally is one of them. As suggested above, please contact the Ataxia UK office to see how they may be able to help.
I went back to see Neuro at Oxford JR Hosp.Ataxia uk info still there if you look.Get the impression an Ataxia clinic is held once a month. In my opinion another centre should be available to cover the South West. i know that this disease is rare but not that rare.I would expect Neuros to be familiar with all disorders of the brain.30years ago Parkinsons was rare now look at it.How long for us with Ataxia?Ataxia UK publication there on third floor in first waiting room along with material about grisly conditions.Ataxia publications should be prominent during Ataxia clinics.Also advanced cases probably something positive.No lies but good bedside manner needed.