Am getting referral to london ataxia clinic, is free on nhs?

[Pinkpiglet]

[HarryB Administrator]

Hi Pinkpiglet

Yes. The London Ataxia Clinic is part of the NHS and it shouldn't cost you anything to be seen there. Who has referred/is referring you?

Harriet

[Pinkpiglet]

my gp. My neurologist has dismissed me for asking him, now have to get new neurologist referral. Thank you or answering, my gp wasn't sure.

[HarryB Administrator]

You are very welcome. I hope your appointment goes well.

Harriet

[Litty]

The London Ataxia Clinic is excellent. I have been going for many years. The only problem is that it can take much longer than you think , so be prepared for a wait. People have very different experiences, as you can see from my annual visit this autumn

ataxia-uk.healthunlocked.co...

I am sure it will be good though.

[Pinkpiglet]

Do you still see another neurologist though as well? Mine wont see me again because i asked him for the referral. I have to get a new neurologist referral now

[HarryB Administrator in reply to Pinkpiglet]

Hi

The London Ataxia Centre may agree to follow you up and so you wouldn't need to see a local neurologist. However it may be that you do not wish to keep on travelling to London and , if this is the case, your GP should refer you to a local neurologist. Either way the neurologist you were seeing should not have discharged you at this point. I don't think you need another neurologist referral at the moment though. The neurologist you see at the Ataxia Centre will write to your GP and include, taking your preference in to account, whether you should be referred to a local neurologist or not.

I hope that made sense!

Best Wishes

Harriet

[jeromekern]

Hi,

My dealings with the London Ataxia Clinic are first class. I live in Bristol so have to stay overnight. I am seen by Dr. Giunti on a Thurs dead on appointment time always.. Last year she asked me if I would see another consultant - a Dr. Manji - I was with him for one hour, again dead on appointment time, and he said would I see another consultant - Prof.Bronstein - I did last year - appointment was 9.30am - I got there at 8.30am was seen at 8.55am by his registrar, plus two learning doctors, many tests were made, hearing, rotational room, finishing up after approx. 3 1/2 hours in a room for a test which was very new, with the Prof, his Registrar, the two learning doctors, the person operating the equipment, and another gentleman. Last month I had another appointment with Prof. Bronstein at 11.00am on the day - guess what, I was called in dead on time a by different registrar from last year, tests were made again - I was asked to wait, then called back in - I was then seen by the registrar, Prof, Bronstein, and one of the learning doctors from last year - more tests were made, they discussed with me my situation,said they were sorry there was not enough time for another MRI scan to be done for the results to be seen there and then, but an appointment would be made for a years time when a MRI scan would be arranged early in the day - the results would be looked at and they would perform an objective head impulse test. This time I was seen for about 2 hours. I am due back at the clinic next month for another appointment with Dr. Giunti - I have seen her quite a few times now. As you can guess the point I am making is I have been seen on time at every visit, and everyone I have seen have been very kind and professional. All this is not to say that others have not been seen on time - I have been lucky.

Pinkpiglet - I wish you all the best for your appointment - I'm sure it will go well for you.

Cheers, Doug, Bristol.

[Pinkpiglet]

Thank you everyone

[laddie in reply to Pinkpiglet]

I'm sure you are getting the correct help Ido not see a neurologist or anyone other than my GPwho asked me to supply him with information. I only saw a neurologist once as a private consultation (otherwise the wait was 8weeks) the only thing Ihad fromhim was that the condition was progressive and untreatable.He did say that Icould see him again if neccessary but at £150 per.session I have not been back If I shout loud enough I may get more help but I'm not very opptomistic.

[HarryB Administrator in reply to laddie]

Hi laddie

My goodness. At that price I am not surprised you haven't been back!

I would recommend that you see a neurologist 6-12 monthly. Because there is no cure for the Ataxias it can feel that the neurologist is limited in what he/she can do. Having said that the neurologist has a crucial role in your care for a number of number of reasons:

1. The neurologist can monitor the progression of your ataxia. No progression is as important as a degree of change.

2. Although Ataxia itself cannot be cured yet, there are many symptoms related to ataxia that can be treated successfully.

3. The neurologist can refer you to other health professionals if and when needed that you may benefit from seeing e.g. physiotherapists, occupational therapists, speech and language therapists or indeed other doctors with different specialities.

4. Being under a neurologist, be it locally or at an Ataxia Centre, you will get to know and benefit more quickly about any advances made in research. This is very true for those of us with an Ataxia of unknown cause as new Ataxias and diagnostic tests are being discovered regularly.

I would not recommend paying £150 each time you go though! You are absolutely entitled to see a local neurologist or one at an Accredited Ataxia Centre on the NHS.

Best Wishes

Harriet

[february]

I live in the USA. Although I like my neurologist (he's a specialist and researcher in ataxia), it sounds as though you have a wonderful system in the UK! Your "ataxia clinics" sound amazing! I'm just saying..., ;o)