Long diagnosis journey? Urgent assistance required

We've been asked by The Neurological Alliance if we can come up with a case study by the end of tomorrow of someone who's diagnosis of ataxia took a very long time. It's needed for their publication regarding neurological patients experiences in the NHS.

The publication only relates to England - so it needs to be someone living in England; and it needs to be within the last 3 - 4 years (or more recent if possible). We would annonomise it so no personal identitifiable details would appear. You can either write it up yourself and let me have it, or someone from the office could call, get the details, write it up, and let you check it over.

If anyone is prepared to help us with this please can you get in touch with me, either via my email: smillman@ataxia.org.uk, or by private message, or call the office on 020 7582 1444

Thanks in anticipation


14 Replies

  • Good luck Sue. I'm sure I've read comments on here from those who had a long slog to get diagnosed. My husband was just told he has ataxia following heel to toe walk and heel to shin test Oct 14 due to his family history. We are still waiting for an official diagnosis though and he took part in 100000 genomes project in Nov 15......no results yet!

  • Thanks Stanleyclan. Sorry to hear a diagnosis is taking a long time for your husband. However, it sounds like he's had the correct advice as he's part of 100,000 genomes project. The case study I'm looking for at present is to demonstrate that the NHS often doesn't take people through a sensible process to get a diagnosis. In your husband's case it sounds like they've done the right thing - the problem is that his ataxia gene hasn't been discovered yet. Best wishes Sue

  • I wonder how 'long' is a long diagnosis journey compared to a normal one, to provide the relevant examples for your required assistance?

  • Hi PGee, Well almost how long is a piece of string! We know of someone for whom the journey since discovering their symptoms has been 60 years! But this is exceptional and doesn't quite demonstrate the point we're trying to make, which is that the NHS isn't set up to enable people to speedily reach neurologists with the correct expertise. So in this context, I know a number of people who have been initially diagnosed with Huntingdons, Parkinsons or MND or similar before being re-diagnosed some years later with ataxia; or who have simply not been diagnosed with anything for ages. In such cases diagnosis can take up to 5 years. Best wishes Sue

  • Hi sue assume you have found someone now?

  • Hi rankin1st, we're working through the cases we've been sent to try to find the most useful. Best wishes Sue

  • Hi Sue I was diagnosed in 2012 after nearly 2 years of seeing different Health Professionals. I live in Hull. Don't know if my story is any good to you or maybe you've got someone by now. Best wishes Nicky.

  • Hi Nicky, we're working through the cases we've been sent to try to find the most useful. It's always good to have them one file so it would be good if you could write it up and send to communications@ataxia.org.uk Best wishes Sue

  • Hi Suze,

    I fit the bill for your study. Unfortunately I live in Scotland. Do you know of any similar studies in Scotland that I could help with? Rankin 63.

  • If we hear of anything we'll circulate it on HealthUnlocked.

  • My son only got diagnosed last year after going to the doctors loads.. Miss diagnosed with dyspraxia.. Still waiting for genetic results as to what type. He's 18 now and has been wobbly all his life

  • Thank you JPs Mum. Sorry you're having to wait for the precise diagnosis. Sue

  • If you ever need something similar for Scotland Sue, just give me a shout. Its all still quite fresh in my head. The investigations/diagnosis "proper" took 17 months, but I was being treated for a "simple balance problem" for the 3 years preceding that (in a "trial and error" kind of way - I was simply being prescribed a drug that "might help my condition" - and then seeing the results).


  • Thanks Iain.

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