Care package for ataxia

[Amynah]

I am very confused - what kind of care package do people with ataxia have - I need everyone help - I tell care manager that I have a mobility disability and they can't seem to understand - they are so used to dealing with dementia and ms and have no idea what ataxia is - it doesn't matter how many times I explain - I am really tired of changing carers - plus I have no family that can look after me so I have to rely on carers help and I have changed 3 care agencies in 1.5 years - this is not good.

[majajefferies]

First of all, Ataxia UK have a fantastic selection of simple documents for the professionals looking after people with the Tia. These explain exactly what it is that you have how your illness affect you, et cetera.

I am afraid that care agencies and carers in the UK are just not up to par. This, unfortunately, doesn’t have anything to do with the tax but is just a fact of the matter.

We have been through many agencies, we have been reported to safeguarding, we have had an absolute nightmare, which unfortunately does continue and I can’t see a time when we’ll be able to just trust th m to do their best.

Do you have any friends who can look after your interests? You really need spokesperson who will engage with them on your behalf and make them do what they Paige to do in a professional and informed manner.

Where do you live? Have you looked at the NHS quality commission website for your area? They will have listings of all the care agencies they approved and their gradings. This is a good point of reference to phone and find out which of the good ones would be willing to take on your care package in More suitable way.

Who funds your care? if it is NHS then a lot can be done.

[Amynah in reply to majajefferies]

Thanks for giving me so much information - I will spend the weekend getting to grips.My funding is from Harrow council but they have given me such a horrible social worker and I have been complaining about it for months - there's is so much confusion - I would be better of paying myself

Regarding a spokesperson let's see what ataxia have to say

Thanks

Again

[majajefferies in reply to Amynah]

Okay, so funding wise you have the right to choose.

They can either hold your funding and provide you with the best suitable service, i.e. care agency of their choice and funding or their choosing or they have to give you a personal budget which then you get for the whole year and you choose how to spend, but you have to justify your spending.

We couldn’t deal with having a personal budget because Ryan requires 24x7, 2:1 care provision and recruiting that many carers is far too difficult for us to do. But having a personal budget does give you more of flexibility.

As far as social workers are concerned, we went through at least six before we were happy with the more senior person looking after Ryan’s case.

You have the right to demand to see the head of the social services who allocates the work and explain why it needs to be somebody who is much more capable and professional and work your way through them until you find somebody who suits you.

All of it goes under patient’s choice being heavily advertised at the moment.

Also, make sure you have a power of attorney in place.

Ataxia uk have a helpline you should use as they will have much more advice available for ataxians!

Good luck!

[Amynah in reply to majajefferies]

I am really confused - I live in Ewart House - a council residence for disabled - they have carers in house and they were so horrible to me for 7 months - I finally got rid of them - Harrow council is upset with me - I really need to talk to ataxia for next steps - I don't know what to do from now - my priority was to get rid of the in house carers as they were making my life a misery - now I have angered so many people - I don't know what to do ..

[wobblybee]

🙂 You could get peace of mind by contacting this service..

Even if it’s just to talk things through. We will do our best to provide you with information about the problem and try to help you to navigate the situation if we can.

ataxia.org.uk/ataxia-advoca...

[Amynah in reply to wobblybee]

Thanks will call ataxia helpline next week

[tonyrs]

Thank God its not only me that has to explain to everyone even medical professionals what Ataxia is so now I tell everyone its MS only then I get a reaction to my difficulties in my mobility and speech. Good luck!

[dollygrey in reply to tonyrs]

I tell people having Ataxia is like Parkinson's and MS have had a baby

[7151]

I was Lucky enough to chose my lovely carers thé council help à bit with there wages ..i taught them what i needed

[Amynah in reply to 7151]

Thanks for your replyCan you please tell me about your care plan - I seem to be at a loss

[7151 in reply to Amynah]

Hi what country to you live in ?

[Amynah in reply to 7151]

UK

[Amynah]

THANKS to everyone for replying - I forget my manners - so thanks a lot

[Newbie611]

I am in the States and I have Ataxia. Noone knows how to treat it as they believe it is normal PT/OT support . I pushed myself to the point that I have can walk by myself but suddenly it reversed tremendously. I have to use a walker and cane to get around and sometimes i fall. The professor at the Uni who know more, tell me to ask the neurologist for a MRI on genetics testing on Atexia. Apparently, there are 4 type of Atexia. Each treatment is slightly different than the other. This will help the clinicians to treat better