Health Professionals

[Jacqui-A]

Hi All,

Could someone please tell me which health professionals I should be under. I feel as if I have to deal with this dreadful decease alone.

Thank you.

[cocoa]

I initially attended John Radcliffe Oxford ataxia clinic for several years.

Still no firm diagnosis but no longer wanting to travel, I asked to be transferred to my local hospital.

A suitable neurologist was arranged, so now I have check-ups once a year. The neurologist can contact Oxford if necessary. Also I can too. They have my details, so if a cure (or treatment) should ever be found, I would be informed.

The neurologist arranges blood samples each year. He can also arrange neuro physio, occupational therapy and speech therapy.

Until recently podiatry was also provided but now, because of Covid, I have had to go privately for orthotics.

[HarryB Administrator]

Hi Jacqui-A

As well as your GP you should have a neurologist, which your GP should refer you to. You can tell your GP which neurologist you would like to be referred to. Below is a link to neurologists in the UK who have an interest in ataxia.

ataxia.org.uk/Handlers/Down...

There are two accredited ataxia centres in the UK, in London and Sheffield. The below link gives further information on them.

ataxia.org.uk/Pages/News/Ca...

You may benefit from any of or all of physiotherapy, occupational therapy and speech and language therapy. Again your GP can refer you to these.

Ataxia UK wrote some medical guidelines aimed at health professionals to help them with the management of people with ataxia. Your doctor might find these helpful. The first link below is to the full document, the second to a summarised version for GPs.

ataxia.org.uk/Handlers/Down...

ataxia.org.uk/Handlers/Down...

Best wishes

Harriet