What support did you get after diagnosis, and how were you told?

What support did you get after diagnosis, and how were you told?

I found out I had Ataxia when I was copied on a letter from my Neurologist to my GP. It wasn't even a personal letter to me.

There was no explanation of what Ataxia was, or where to get help or anything. The only other thing that letter contained was a comment about blood tests.

I was lucky that I found Ataxia UK almost immediately when I turned to the internet, and have found some support there. But I am starting to feel a bit angry that the diagnosis was simply dumped on me without any offer of support at all.

I was also lucky in that my Physiotherapist, who had got me in to see the Neurologist in the first place, had also referred me to a Neurological Rehabilitation Centre and they have brilliant in giving me some aids around the home, and some specialist physiotherapy to help with my balance. However, this was because of my back pains, and balance problems, and the timing with my Ataxia diagnosis was co-incidental.

Am I wrong to feel a little let down by the NHS? What have your experiences been?

11 Replies

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  • sounds a bit to familiar typical nhs ba*** up my theory about it is simple give it a long unpronounceable name and no one will ask embarrassing questions remember when cjd was called creutzfeld jakob disease until they found out more at least it sounds like you have a good Physiotherapist though

  • I was lucky I had a good doctor. Before I was even diagnosed she contacted my local Social Work Department who assessed my mobility needs. Shortly afterwards the SWD gave me a few mobility aids to help me in my home. My doctor had also referred me to see a Neurophysio and a Neurologist. I was diagnosed with Cerebelar Atrophy shortly afterwards in a letter from my Neurologist to my doctor. I didn't like my Neurologists attitude towards me at first because he seemed uncertain and said that he didn't think I would be entitled to benefits because my diagnosis wasn't a difinitive one. My own GP said that this was nonsense and gave me DLA forms to fill in.

  • I go to a specialist ataxia centre.At first my Neurologist seemed keen but I do feel a bit let down by the NHS lately.I have only had one mri and that was 4 years ago when I just had a few balance issues. The Neurologist seems to have lost interest although my own gp and the surgery are marvellous.It seems just a case of getting on with it and adapting.They can't come up with a miracle cure but some can and do make our lives a bit easier.

  • Hello

    I was told in a round about way when my GP said 'I'm sorry you are so ill'. My GP thoughtt the specialist had told me the specialist thought the GP had told me!!! I was slightly put out at the time but it altered nothing, I have ataxia and that iis that.

    The after care support has been very good. with mny people trying to ensure I am as safe as possible.

    Take care

    Fifa

  • Hiya!

    Well NHS ba*** up are the right words! I was passed from pillar to post for 15 years,I have been treated for arthritis, told I had fibromialgia or it could have been ME,MS Parkinsons and goodness knows what else. Although my GP very supportive he didnt have a clue, I was just prescribed tablets for evry symptom, until one day I was at work (ironically for the NHS!) and I just knew that I could not get myself home as I was unable to walk in the street on my own anymore. I was given a taxi home but went straight to the GP and just lost it completely!! I had had MRI which came back with Cerebellar Atrophy but Neurologosts I had seen didnt seem to think my balance problems were bad enough!! To cut a long story short I evenually was reffered to Prof Chinnery Neurologist at RVI Newcastle, he knew straight away what was wong, I had a DNA blood test to confirm what he already knew he offered my son and daughter the same test. What a relief as well as a shock, I often thought my symptoms were imaginary snd that the Drs thought I was a hyperchondriac.

    I am glad I had that melt down that day and have been able to come to terms with things and get on with my life instead of constantly wondering whats wro9ng with me xxx

  • I had an mri the next day my gp had some doubts about my health state. Although I can't complain at how the ca was diagnosed a few months later went to Bristol for the diagnosis.

    Left the hospital totally confused not knowing what the hell this cerebella ataxia was. No nurse specialist or anyone who could tell me what this condition I have or how it might affect me. The info for every other neuro condition could be seen on the walls and tables. Naively telephoned the ms society for information but was rudely told I was not going to be helped by them in any way. Not at least who I might talk to. My very good GP's honestly tell me they have little knowledge. Hope things are better now for others|? This was 2003-4

  • I have bben given a special toilet seat by an occupattional theapist but they don;t seem to realise I cant walk backwards and shuffle then fall over.

  • I went to see my GP in the december of 2008....he did some standard tests on me and said there is something wrong but he wasnt sure what so sent me to a neurologist.

    He diagnosed CA and sent me for an MRI at the beginning of feb '09.

    It took about 4 months to get the results which a genetics consultant printed out for me when I saw her in June.

    Think it only took so long cos my caring sister kept 'badgering' them and the secretary took offence.

    My GP doesnt know anything about it so I gave him an information pack to explain it but every time I see him it seems he hasnt bothered reading it.

    I see consultants in Oxford that specialise in CA and always get help from them.

    If only all the medical profession were so caring.

  • we were told 25yrs ago,your daughter is going to die ,after that i did not hear anything else ,i was cold i know that ,my samm was 11 then but she is still goin strong bless her x

  • Glad to hear that julieron :) My daughter got diagnosed a year 1/2 ago and all we got told was that Halle has a condition called Ataxia and theres many different forms of this, this is whats causing her shakiness. Please dont read anything up on the condition because you will scare yourself!, and that was it! in a nut shell and i wasn't given any other information on it! so i did what i was told not to!!! how could i try to understand what my childs going to go through or needs when nobody gives you basic info- anyway ive found i learn more from her than i would reading it. :) And all the family are still learning too x

  • I was told when I was a teenager, and the doctor acted like he was passing a death sentence. I don't really remember it much, I was just numb. No doctor has ever explained it properly to me (that I remember) and the experience of my initial diagnosis has put me off asking about it. To begin with, I had loads of hospital, physiotherapy, and occupational therapy appointments, which was overwhelming. Now i have hardly any appointments, which is a relief, but it does make me feel like a lost cause sometimes.

    Honestly, I feel let down by the way I was diagnosed, and I would feel let down if I was told I had ataxia in the way you were. But in the long run, I'm happy with the NHS - even now. I can't see what more they can realistically do.

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