Ataxia

[Jenny789]

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.

[Tiggywinkles]

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.

[neta]

I agree with "Tiggywinkles" I am not surprised at all. Makes one wonder what Ataxia UK and NAF is doing.

[neta in reply to neta]

I mean of course, "are" doing.

[Floramac]

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

[Jenny789 in reply to Floramac]

We did. We designed one from our group and it was not displayed.

[raymonda12 in reply to Floramac]

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.

[stedman in reply to raymonda12]

Ataxia is considered in the Medical profession as an emergency conditions to be treated as if a heart or stroke event. Call your Doctor/surgery, 111 or 999 failing these, drive to the hospital A & E Be sure to mention ATAXIA to the admissions person and the Doctors. ......politely 😊

[Floramac]

Was it from ataxia UK....I really can't believe they would not display a professional poster. Ask again and also ask your neurologist.

[Jenny789 in reply to Floramac]

No, it was from a group of Ataxia UK. We sent them to all local hospitals, libraries etc. trying to spread people's knowledge about Ataxia.

[silkwood]

At Oxford there is stuff from Ataxia uk in amongst blub about MND , MS AND PARKINSON S..Scary for some. NOT all get the same symptoms thank goodness.

Iam going to inform medical staff about Ataxia a there is so mucch ignorance.

[annasgonesailing]

Why don't you ask ataxia UK to send them some info.

[HarryB Administrator]

Hi Jenny

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.

Best wishes

Harriet

[Jenny789]

Thank you for your comments. I realise that Ataxia is a very rare disorder, but I feel that the medical profession should know more but I don't know how this can be remedied?

[silkwood]

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.

[Di-Neal]

Well at least you had an appointment, my wife who has SCA6 and is confined to a wheelchair was told not to bother going again as there is nothing they can do for her

[Ackee]

I'm not surprised either that there were no leaflets in the hospital unless it was a specialist hospital! Even some medics need educating. A lot of people think I have MS, parkinson etc but never mention Ataxia.... or even know what it is - let's educate them!