Continuing Health Care - Preparing to fight PCT's decision

Bakewell54

Hi. May I reiterate that our solicitor and barrister were well worth the £1,800 spent. They gave me confidence when I was worn down and if I had to choose between the 2 would have had counsel only. Except that's not how it works.
However, since my visit to the SHA for the IRP (when I was accompanied by counsel) it has now been prohibited to take legal rep with you!!!

PS. I think a change of title may now be appropriate but not the splitting up of threads.
PPS
I know this is the case in my own area, or that's how they want it to be. (WMSHA)

redbanana_2

I am in a position where my mother is in hospital due to a fall. She is also in an advancing state of vascular dementia.

The Community psyc nurse in conjunction with social work have produced a single shared assessment which recommends that my mother now requires 24 hour care and support and would be unable to return to her own home. The application for SW funding has been approved for £231 per week nursing care. At no point has anyone mentioned a Continuing health care assessment, but we have been made aware that a means test will be required as my mother owns her own home (she lives alone).

I have been reading various reports and advice, but all appear to be geared towards England. I am aware of the Coughlan judgement and if we have to fight for a CHC assessment i will use it.

My question is this
1. Are these any legal cases in Scotland which are similar to Coughlan or have been awarded as a result of Coughlan.
2. Many sites suggest talking to the CHC coordinator. Our Health trust appears not to have one, is the consultant the next best person to speak to or do I go back to the people who prepared the SSA?
3. The single shared assessment quotes a lot of "Care and Support", my mum is not on any medication (although the hospital have used sedation to control her outbursts) but her state of dementia is quite advanced. Am I correct in saying that she has a primary health care need, and the nhs should pay all costs including accommodation in the nursing home as if the primary health need was removed so would the need for accommodation? OR If the NHS say all she needs is care and supervision, do we have a case? I am erring on the side of if it was the latter, she would be able to be cared for in her own home?

Any suggestions

monkeyspanner

Bakewell54 wrote: »

Hi. May I reiterate that our solicitor and barrister were well worth the £1,800 spent. They gave me confidence when I was worn down and if I had to choose between the 2 would have had counsel only. Except that's not how it works.
However, since my visit to the SHA for the IRP (when I was accompanied by counsel) it has now been prohibited to take legal rep with you!!!

PS. I think a change of title may now be appropriate but not the splitting up of threads.

Interesting, is this for your area or in general?

monkeyspanner

redbanana wrote: »

I am in a position where my mother is in hospital due to a fall. She is also in an advancing state of vascular dementia.

The Community psyc nurse in conjunction with social work have produced a single shared assessment which recommends that my mother now requires 24 hour care and support and would be unable to return to her own home. The application for SW funding has been approved for £231 per week nursing care. At no point has anyone mentioned a Continuing health care assessment, but we have been made aware that a means test will be required as my mother owns her own home (she lives alone).

I have been reading various reports and advice, but all appear to be geared towards England. I am aware of the Coughlan judgement and if we have to fight for a CHC assessment i will use it.

My question is this
1. Are these any legal cases in Scotland which are similar to Coughlan or have been awarded as a result of Coughlan.
2. Many sites suggest talking to the CHC coordinator. Our Health trust appears not to have one, is the consultant the next best person to speak to or do I go back to the people who prepared the SSA?
3. The single shared assessment quotes a lot of "Care and Support", my mum is not on any medication (although the hospital have used sedation to control her outbursts) but her state of dementia is quite advanced. Am I correct in saying that she has a primary health care need, and the nhs should pay all costs including accommodation in the nursing home as if the primary health need was removed so would the need for accommodation? OR If the NHS say all she needs is care and supervision, do we have a case? I am erring on the side of if it was the latter, she would be able to be cared for in her own home?

Any suggestions

I am not sure of the position or process of CHC funding in Scotland as their Scotish care funding system is different from England. You may have seen reference to the National Framework this only applies to England as the devolved governments have not adopted the revised CHC process.

Here are some links to documents you may find useful published by www.counselandcare.org.uk

http://counselandcare.org.uk/category/advice/pdf/care-home-fees---paying-them-in-scotland-guide-52

http://counselandcare.org.uk/category/advice/pdf/care-home-fees---third-party-top-ups-in-scotland-guide-53

http://counselandcare.org.uk/category/advice/pdf/continuing-healthcare-should-the-nhs-be-paying-for-your-care-guide-27

http://counselandcare.org.uk/category/community-care/pdf/assessment-and-services-in-scotland-guide-50

One of these documents refers to a Scotish Government document regarding CHC, a link for which is below.
http://www.sehd.scot.nhs.uk/mels/cel2008_06.pdf

I hope this helps.

monkeyspanner

Mr_Ted wrote: »

Could I respectfully request that this particular topic is given its own seperate Forum Heading of maybe "Continuing Health Care Cases"?

This is a highly immotive issue and one which is/can be highly individually case sensative, and from the number of posts, and viewings, is one which is of the highest importance given the issues!

Could I also suggest that a new post is started by all new original posters so that the particular specifics and answers are related to that particular case, so that a particular scenario can be related to that may apply to other viewers or intending posters/responders?

I request this as at present it is very difficult to find a particular scenario that may be applicable to ones own circumstances, and if cases were individually posted, i.e. "Mr Teds CHC case" it would be easier to find a scenario that is similar or the same as ones own without going through the whole 700 odd posts?
i.e. one would be able to see from the OP's first post any similarities and the answers would be specific to that case!

Thanks for this suggestion Mr Ted. There have been a number of threads started by people about individual CHC cases on this and other MSE forums. The problem is that these disappear after a while as they go inactive. There have also been a very large number of threads started about care home funding often covering very similar topics and in these threads advice is often repeated.

I am keen therefore to keep this thread running as it does hopefully provide a resource for people to search and ask specific questions, and eventually report successes which is encouraging for other CHC applicants and their relatives.

redbanana_2

Thanks monkeyspanner. I have read and read and read, but all I get is more confuzzled! What I really need is to find someone or case law of someone in Scotland who has successfully had their carehome fees paid by NHS/SW on the grounds of a health care need who would otherwise have been self funding.

redbanana_2

Thinking I might try and tackle this from another perspective and suggest mums dementia needs is out with the remit of social work - any suggestions?

2003wastheyear

Wow- fabulous thread! Thanks to you all. I have done lots of reading here and elsewhere. but my abilities are not what they used to be through stress.
Sooo here's my experience. Any advice v welcome...

Mum is only 54. She had brain tumour 20 years ago. Last few years she has gone down hill as the two twelve hour ops and radiotherapy she received in the 90's are now taking their toll.

2011= 11 stays in hospital following epileptic seizures while at home- lives alone (small mortgage, on income support,DLA). Found by neighbour or by pressing care alarm.

Every seizure= more brain damage ( I can tell this and drs have confirmed). I have been told prognosis "not good".
She can shuffle a few meters with frame-inside only.
If you take her outside she screams and swears- pushed in wheel chair only.

Cognition- asks same questions over and over. Awful memory. Cannot understand simple ideas or intructions. Unpredicable anger, abusive language. Cries then 2 secs later laughing. I cannot cope with this anymore.
Deaf one ear, double vision. Numb one side of body. Needs the loo x2 her hour and three/four times in night- problem as she has falls at night.
Sleeps on and off through the day as meds v strong. Her days are nap-loo-nap-loo-nap-loo.
Can only stand still for a minute as becomes dizzy- shouts and screams.
Klippel Trenauney Syndrome- legs must be raised, stockings on, painful veins.
Community matron was going in weekly- but Cameron's cuts has scrapped community matrons in our town.

I now run her home- bills, bank, carers, appointments, shopping as she is housebound and confused-basically everything.
She cancels meals on wheels, phone service, carers on a weekly basis- I am constantly "clearing up" after her .
She buys anything that is advertised on junk mail that comes through door as she can use phone. I went away for a week- she spent ALL her savings (£300!!) on office supplies (!).

Her epilepsy nurse says there is a special drug that can shorten seizures, but there is no one to give it to her- so she is beng left to sustanin extra brain damage.
Shes gone from going to the post office and art class weekly via taxi in 2010-to living housebound in the sitting room as she cannot do stairs- the loo is groundfloor.

She was in ITU for a week in oct 11 and discharged to a rehab. I asked for an NHS assessment as id read up on it because my gran had a stroke (fyi gran is bedbound lies flat, cannot do anyting, nappies, hoistered, skin and bone, has 24/7 live in carer, living in a fantasy world and did not get funding!).

The nurse scored her low/med in EVERY section. Because she was happy in her rehab bed being waited on, given drugs, food, washed, dressed etc. I met the nurse to complain she told me mum had not had a fit in two weeks so was ok!!! She said she asked mum questions and mum said she was fine=mum is fine. No looking at records or speaking to ANYONE who knows her medically or family.
I wrote to the gp and neurologist who agreed the rehab nurse was v WRONG and needed to reassess. They wrote to the rehab and asked them to reassess as mum has severe brain damage that is going to get worse ( 1/4 her brain was removed, the rest dying).
The rehab social worker (rude, lazy, evasive, would not listen to my concerns) discharged her the same day the Drs sent their letters (i know as the cc'd me). She went home with x2 care visits per day. Careplan was a total joke.
I was still going in x2 a day!
I finally got a new SW (much better) and got carers to come x4 a day.
In dec mum took two lots of epi meds in one hr and was rushed to hospital. Such is her memory, despite bubble pack that is cleary labelled she forgot shed taken them. Her missing and doubling meds has been a constant issue. Carers have now put her meds inthe kitchen cupboard as protection (coz that works-not).
She still calls me 10 times a day ( no lie) not making any sense, screaming, shouting. I have to screen my calls.

Ok she has a place in a extra care- sheltered accomodation- it has 24/7 carers on site. We (myself and mum) are keen on this as it will give my mum access to a social life and some quality of life while she still can, especially as she is so young.
I must be clear that mum thinks she is going to recover, she refuses to go into a home, and thinks all is fine, such is her condition.
As this accomodation is not strictly a care home, we cannot get a deferred charge loan on the house. We have been told we need to put the house up for sale to pay for rent. We would then also be liable to pay for the care package.
I do not care about any inheritance, just that my mum has some smiles as she has had her life destroyed since she was 33years old, but she made the most of it, now she has no life at all. But I think as mum's brain injury is so complex she is entitled to NHS care. Should we continue with the sheltered housing? Should we sell up? SHould we wait for nhs? (£ will last 5 years, dont know if she will, so I am worried about waiting for NHS is it takes years!!! as mum needs respite now).

Our new SW has put in a new assessment for NHS CC, but I think reading up on it here they will say no, despite the consultant & social worker supporting it. I am gearing up for a fight. But in all honesty I have crazy depression as I have been dealing with this for almost a year now and am seriously worried I will lose my mind forever. Any words of advice?

Savvy_Sue

2003, I do not know WHAT to say! And offering a hug seems completely inadequate.

I really hope someone can be more help than that, but I had to let you know I had read the post ...

gingerfox

Same here, what a nightmare for you. Do you have any help/support from relatives?
It sounds like both mum and gran should get the funding. Your mum must surely score at least high in behaviour as she is a danger to herself without care. Also looks like severe in cognition as she has no memory. Do you go to the meetings, because you can challenge anything you disagree with which would alert the panel to investigate.
I would be tempted to contact your MP about the difficulty you are facing under an all too often badly run system by people who couldn't care less.

((good luck))