Continuing Health Care: Have you been... - Multiple System A...

Multiple System Atrophy Trust

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Continuing Health Care

12 Replies

Have you been made aware of this by the NHS?

12 Replies

CHC is financial support for people who need medical support. It is complex to get approved.

in reply to Paul_and_Sue_Wood

Thank you for your response.

in reply to

Can't remember where you live but just to say it doesn't apply in Scotland, it's a different system. Kx

TK-67 profile image
TK-67

Apologies in advance but our experience is far from good I'm afraid. it's really complicated and not administered by the NHS - it is done by councils and local authorities. We started the process for mum (in a specialist v expensive nursing home) over a year ago. Thanks to the pandemic and then a split decision we're still waiting and still self funding. It's an awful postcode lottery too, some people are having more luck than others and with funding under pressure that doesn't help either.

writerinlimbo profile image
writerinlimbo

Our neurologist got Macmillan involved in my husband's care who applied on his behalf and it was approved within 24 hours. Needless to say he is in a very bad way and close to the end.

in reply to writerinlimbo

Sorry to read that. It’s such an unnecessary stress.

Annietutt profile image
Annietutt in reply to writerinlimbo

You have my heartfelt sympathy for the situation you are in. I am pleased your husband is receiving the specialist care he needs as he approaches the end of his life. I hope you are getting appropriate support too. X

writerinlimbo profile image
writerinlimbo in reply to Annietutt

Thank you yes, amazing support from our neurologist, the council OT, Macmillan, our local community nurses, SALT and the assistive technology team. Listing them all in case that assists others with whom to turn to for support. Feel so fortunate to receive the level of care we do - just wish everyone's experience was the same.

Courgettegrower profile image
Courgettegrower

Just been turned down for the third time. Insufficient nursing needs!

Annietutt profile image
Annietutt in reply to Courgettegrower

It’s really hard. You don’t need the extra stress when you are in this situation. I sympathise, not that it’s much help to you.

in reply to Courgettegrower

Have you looked at the paperwork yourself Courgettegrower? There is also the appeals process etc. I support it depends on what stage the MSA is and what are the symptoms that need looking after. I don't know your medical details but it is so worth reading up about it... Failing that, maybe get in an expert... Good luck.

Courgettegrower profile image
Courgettegrower in reply to

Thanks. Our social worker and the NHS CHC assessor tried really hard but to no avail. Too much care needed which is not ‘nursing’. Our social worker says she will help is to go again in the future.

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