Genetics test

[Tazmurray]

My gp referred me to newcastle ataxia centre but my nhs won't fund this, surely I dont have to live In england for this to be done..

[HarryB Administrator]

Hi Tazmurray

Where do you live?

Harriet

[Tazmurray in reply to HarryB]

Hi Harriot I live near glasgow....I met u at the ataxia conderence in july/aug....

[HarryB Administrator in reply to Tazmurray]

I remember. I am so sorry you haven't managed to get a referral sorted yet.

I really don't understand this. Many people I know of who live in Glasgow, including myself when I lived there, have been referred to the Ataxia Centre in Newcastle. The fact that the NHS is different in Scotland to England makes absolutely no difference.

A few questions...

1. When did your GP refer you?

2. Who is telling you/told you NHS Scotland will not fund this referral?

3. Have you been given a reason as to why NHS Scotland will not fund this referral?

4. Have you been referred to/been seen by a neurologist locally?

I am going to the Ataxia UK office on Wednesday and will discuss your case there. The answers to the above questions will be very helpful in deciding and suggesting what to do next.

Harriet

[Tazmurray in reply to HarryB]

My gp referred me to dr chineray

my gp called me today and told me this.

the referral was sent some weeks ago but my gp did not receive the funding letter.

the nhs said if newcastle cant do more than glasgow then 'No' ie.a cure.

I am at my wits end, my gp is going to write to another neuroligist, I'll not hold my breath

[HarryB Administrator in reply to Tazmurray]

Oh my goodness, I am not surprised you are at your wits end.

The comment from the NHS is absolute nonsense.

Please leave this with me and I will get back to you.

Harriet

[Tazmurray in reply to HarryB]

Thanks

[Tazmurray in reply to Tazmurray]

Any thoughts yet Harriot?

Tara

[Pheobe13 in reply to HarryB]

Hi my name is Lesley this is nothing to do with the posts you e been discussing but can you tell me please are there any support groups in the Southampton area ? My partner has progressive cerebella ataxia and is not good ! I think it would be good for us to meet others with this disease thank you

[HarryB Administrator in reply to Pheobe13]

Hi Lesley

Thanks for your question. There are many Branches and Support Groups throughout the UK but I am afraid I don't know off the top of my head if there is one in the Southampton area. The best thing to do would be to call the helpline at Ataxia UK (0845 644 0606) or look on the Ataxia UK website ataxia.org.uk.

Best wishes to you and your partner.

Harriet

[winch in reply to Pheobe13]

Hi Lesley

Pam Farley-Pettman [mailto:[e-mail]] is in the early stages of forming a Support Group in Shirley, Southampton. I have cerebellar ataxia and attended the first two meetings held at her house. Her daughter has Friedreich's ataxia (although she is married and does not live with Pam).

Obviously this group is in its very early stages but if you would like to email Pam, I am sure she will be only too pleased to update you.

How long has your partner been diagnosed with cerebellar ataxia? I find Nigel Heath's comments on this site very helpful.

Best wishes.

[Floramac]

I presume its your ccg that have said no to a referral. Perhaps if you were referred by a neurologist rather than a GP this would not be a problem.... Perhaps ask your GP to do this or could you speak to someone at the ccg who have said no.

[Hidden in reply to Floramac]

What is ccg?

[Floramac in reply to Hidden]

Ccg are the clinical commissioning group....

[HarryB Administrator in reply to Floramac]

There are no CCGs in Scotland.

[klazien]

Ten years ago, when living in Warrington I was diagnosed with ataxia by a neurologist and had all the gene tests then. My private insurance at that time let me know after the diagnosis that I would not be covered with that any more since it was chronic . So I stopped the insurance (it was too expensive anyway).

I asked my neurologist to refer me to the ataxia centre in London for very occasional monitoring. He was insulted so I asked my GP. She did but the NHS trust in that region said that since the NHS trust in London was in another region it could only be funded there with a referral letter from my neurologist. I went back to him and asked. He send a referral. All this took a long time and after that I still had to wait a year for an appointment.

Since then we moved to Wales and I still have an appointment in London every 1 ½ years. Another referral from my GP here did not seem to be necessary.

[wobblybee]

Could it possibly be due to a mix-up in communication because Prof Chinnery has left Newcastle Ataxia Centre?

The Newcastle Ataxia Centre resumes appointments in January. 😊xBeryl

[Floramac]

If there are no ccgs in Scotland who is it that says yes or no to funding treatment ....

[HarryB Administrator in reply to Floramac]

NHS Scotland is completely devolved. Although the Scottish Parliament decides the total budget for the NHS, this is then allocated to 14 Health Boards throughout Scotland. I assume it will be the Health Board who say yes or no to funding treatment.

Harriet

[Tazmurray in reply to HarryB]

Hi Harriet, what do you suggest I do?

Many thanxs

tara

[HarryB Administrator in reply to Tazmurray]

Hi Tara

I was only able to discuss you problem briefly at Ataxia UK yesterday. They were aware of it with you having contacted the helpline with the same query. I will see the best person to discuss it with (Julie Greenfield, Research Manager, who gave the research update at the Scottish Conference) tomorrow and we will be in a better position to reply to you then.

Harriet

[Tazmurray in reply to HarryB]

Thanks Harriet I very much appreciate this....I only want to know if they can tell me what type of ataxia I have

[HarryB Administrator in reply to Tazmurray]

You are welcome. I understand how frustrating this is for you.

Sorry for more questions! Who diagnosed you with ataxia, GP or neurologist? Have you seen a local neurologist?

Harriet

[Tazmurray in reply to HarryB]

Thanks Harriet

it was a neurologist that diagnosed me with non-fimialiar cellebelar degeneration he was called Dr Jack and he was/is the nearest to me

Tara

[HarryB Administrator in reply to Tazmurray]

Do you still see him?

[Tazmurray in reply to HarryB]

In his own words 'just check in with me when u want'

[HarryB Administrator in reply to Tazmurray]

Hi Tara

I have spoken with Julie Greenfield and Julie Vallortiagara (the Research Manager and Research Officer at Ataxia UK) this morning and they will be in touch with you regarding your current situation and what our advice is as to the best way forward.

Harriet

[Tazmurray in reply to HarryB]

Thanks Harriet do they have note of my email? Its [e-mail]