Does someone with SCA1 qualify for NHS Continuous Health Care funding

[Lynn2631]

Hi, My mother has SCA1. She is unable to walk and so uses a wheel chair all the time. Her speech is extremely slurred. She seems to be getting confused too. She gets agitated at night and does not know who my dad is at times. My dad is at his wits end and is finding caring for her to much to cope with. She has been in residential homes for a couple of weeks at a time at their own cost, which is not cheap. Does she qualify for NHS Continuous Health Care funding?

[wobblybee]

My Uncle had Dementia caused by Diabetes, so was unable to give himself insulin, and we jumped through hoops to get him NHS funded care. Fortunately we had a lot of good advice from a caring Social Worker.

This is a link to helpful information

caretobedifferent.co.uk

[Lynn2631 in reply to wobblybee]

Hi, Thank you for the reply.

Just briefly looked at the link that you sent and it looks exactly like the information we need. I will need time to go through it properly, but I am more optimistic about being better informed if nothing else.

Many thanks

Lynn

[PatsyIpswich]

Ataxia UK helpline can help you with this x

[Lynn2631 in reply to PatsyIpswich]

I have contacted them and they have sent me some links with plenty of reading to do. So thanks for that.

[PatsyIpswich in reply to Lynn2631]

How did you get on? X

[Lynn2631 in reply to PatsyIpswich]

Hi,

At the moment my mum has just gone into a care home for two weeks.

Unfortunately, she is quite strong willed, very difficult and uncooperative at times. My dad definitely needs help, and hopefully he will be able to talk freely to me without her there. She is very controlling of him even at the best of times. This is probably more of a problem to him than the physical disabilities that she has. Is her behaviour a result of the ataxia? or is it the unfairness of having it causing her mental health issues? or marital issues? who knows? She is being treated for depression.

We need to fathom out what the assessments require so as to get a true picture of if she is eligible for funding at the moment. The last thing we want to happen is for her to be assessed and the result being that mum and dad can cope with the ataxia, that her problems are caused by mental health/marital issues and being rejected for funding purely because we do not understand the system.

The Ataxia UK helpline gave me the two links below.

There is a lot of information within these links and is taking time to digest.

nhs.uk/conditions/social-ca...

beaconchc.co.uk/

caretobedifferent.co.uk which was suggested by wobblybee has a lot of good information too.

I think our next step is to get a social worker involved.

If we get anywhere with this I will let you know

Thanks

Lynn

[PatsyIpswich in reply to Lynn2631]

Oh Lynn, that is a lot to sort.. . I really feel for you .. I understood that Ataxia UK had an advocacy officer on their helpline who could act on your behalf.My very best wishes, Patsy xx

[majajefferies]

Our son has another type of ataxia (DRPLA) and is fully funded by NHS CHC. However, he has no assets and is not married. I’m not certain, but they might use means testing to assess your assets as a married couple.

Please consider enquiring at your local Citizens Advice.

Do you have any support or respite in your daily caring for your wife? I am certain that many family members here will agreeYou can not do this by yourself.

[Happy77 in reply to majajefferies]

Hi, local authority social care funding is means tested but NHS continuing health care is not means tested, it is based purely on health and ability to do things for oneself. They should send you a copy of the assessment they use for you to look at before the assessment. If I remember there are about 8 categories and each section is points based. Good luck with it

[Lynn2631 in reply to majajefferies]

Hi,My dad has been paying for mum to go into a care home for a couple of weeks at a time. It is very expensive. When our local authority agreed to pay they wanted to send her to care homes that were miles away. They still want to see each other whilst she is in the care home, but at least my dad can go home and have a good nights sleep.

Citizens advice sounds like a good idea. Thank you

[Lynn2631 in reply to Lynn2631]

Sorry sent my reply to the wrong post

[Lynn2631 in reply to Lynn2631]

Yes you are quite right NHS continuous Health Care Funding is not means tested

[Lynn2631 in reply to majajefferies]

Hi My dad has been paying for mum to go into a care home for a couple of weeks at a time. It is very expensive. When our local authority agreed to pay they wanted to send her to care homes that were miles away. They still want to see each other whilst she is in the care home, but at least my dad can go home and have a good nights sleep.

Citizens advice sounds like a good idea. Thank you