NHS continuing care

[61Julie]

Hi I am new to this site.We are going through the process for funding for my mother who is in a minimal conscious state following a brain haemorrhage in January.Does anyone have any experience of the process especially the category "altered state of consciousness?"

[Hidden]

Hi there sorry I don't know anything about funding, but Headway could probably help you. They can be contacted on helpline 0808 800 2244 or [e-mail]

Good luck

[61Julie in reply to Hidden]

Thank you they suggested this forum.

Will keep looking.

[cat3]

So sorry to hear about your mother, Julie. My ex husband definitely has an altered state of consciousness after a catastrophic SAH 2 years ago. My son, daughter and I are powerless to intervene in his care, although my daughter has tried through his GP, consultant and solicitor. His present wife, being next of kin, can and does prohibit interference from his own children and mother, and declares that he's happy in 'his own little world'.

I agree with Hedgehog that you should contact the Headway helpline. And if you have the power, fight for everything that's available for your mum.

It breaks our hearts that Geoff, my ex, has been abandoned by the system with no therapy or support other than the most basic daily needs. And if we had the power we would fight like hell to improve his quality of life with appropriate therapies.

So sincere best wishes for getting extra care for your mum, and please would you let us know how you get on.

All best wishes, Cat x

[61Julie in reply to cat3]

Hi Cat

Sorry to hear of your experience.

It was Headway who suggested that I use this forum to see if anyone had any experience of the funding process.

I'll keep trying.

[cat3 in reply to 61Julie]

Julie, I'm so sorry there's been such a poor response to your query but I've noticed for a while how quiet it's been on here. Also there are only a couple of people here (that I know of) with similar issues.

You might find some inspiration from the posts of Dorsetcharlie who's come through a pretty amazing journey with her spouse, from a critical situation through many months of rehabilitation to his homecoming.

Regards Cat x

PS If you scroll down to page 6 on the forum you'll see Charlie's picture on a post. Click on the picture and you'll have access to all her previous posts. It's a heart-warming story. x

[StaceM8 in reply to cat3]

Cat, is it not your husbands present wife preventing you from ' interfering ' & not the system cos I'm sure if U were allowed to ' interfere ' or as we know it as, ' help ' I'm sure U would have found something to help your daughters father have a better quality of life.

As it goes you have pretty much said that cos as U say, if you had the power .......

Xxx

[cat3 in reply to StaceM8]

Yes Stace that's exactly right ; it is Geoff's wife wielding her 'next of kin' status which prevents further therapy.

But it's the system which has given her that status and which renders his son and daughter and mother powerless to do what they believe is best for their father (& son) despite them being his biological next of kin.

Thanks for your interest. x

[StaceM8 in reply to cat3]

& she's not reasonable enough to listen to an alternative view as t what would be best for her husband. Even from his kids ???

Xxx

[cat3 in reply to StaceM8]

How long do you have Stace ? Seriously, there is a jealousy issue going back 20 years which should have been resolved by a) My SAH, then b) Geoff's SAH six months later.

She has shown coldness towards our son and daughter and Geoff's mother, and open hostility towards me, particularly since Geoff fell ill.

Everyone has rallied round her, despite their own distress over both my & Geoff's illnesses, but she now refuses to even answer the phone.

Her own daughter has contacted my daughter to apologise for her mother's attitude and claims that she too is ostracised if she tries to voice an opinion, although she has moved in with her mother to support her.

We find it upsetting and slightly macabre that now Geoff is completely at her mercy she is so unwilling to even discuss any form of therapy.

[StaceM8 in reply to cat3]

Could U get her sectioned maybe - sorry I really have no idea but just noticed Dill below has some possible solutions maybe, (although that could be for Julie baring in mind this seems t be a conversation within a conversation - sorry Julie n good luck Cat !!!

[Hidden]

I am sorry but all I know is that if the NHS set up Care you are not liable for the cost apart from that I have not got a clue as I have been out of the advice service for 7 years now

Best Advice will be perhaps from the PALS (Patient Advisory Liaison I think) at the Hospital or to contact local Advice Centre or Social Services or perhaps a solicitor (free advice session)

Although I used to be an advice worker Rules unfortunately have changed since I "Retired ?"

have you checked the CAB advice pages

Sorry to be so vague

We have been through this some time ago with the mother in law thats why I know my first statement is correct

It is a very difficult area we were luck I could access advice through the CAB network when I was working

Wish you the best of luck getting the help you deserve

[Hidden in reply to Hidden]

Hi found this on the internet hope it will be useful

nhs.uk/CarersDirect/guide/....

[Flintdog]

Hi Julie, My partner suffered a massive brain injury in April 2012. After the NHS ran out of ideas, we managed to get him screened in for Continuing Health Care funding. We got him into a privately funded rehab unit which the comissioner has been kind enough to fund for the last 14 months (at a Considerable cost|) You need to attend loads of meetings and to fight for what you know is right for your mother. Don't be Mrs. Nice Guy all the time, sometimes you have to make a strong argument to get your point across and get what you want, or indeed what we all want for our loved ones.

Hope it works out well for you

Sue x