NHS Continuing Healthcare- Any success??

rimmel11

Registered User
Nov 3, 2009
17
0
Surrey
Just wondered what experiences of this people have had? Mum, aged 57 has Pick's disease and today I have finally decided on a CH but because I am not under 16, or over 60 or an estranged partner, they wont exclude the house as 'capital.' Surely thats unfair?! Anyway i came across the NHS Continuing Healthcare idea and of the 12 catergories she could have at least behaviour, cognition, emotinal needs and communication as a priorty health need??

1 Behaviour
2 Cognition
3 Psychological/emotional needs
4 Communication
5 Mobility
6 Nutrition – food and drink
7 Continence
8 Skin (including tissue viability)
9 Breathing
10 Drug therapies and medication: symptom control
11 Altered states of consciousness
12 Other significant care needs

I'm only 25 so everything is feeling a bit on top of me! We have had financial assessments but not a health one, surely thats wrong? I had come to terms with loosing my home, but seems this might be the answer- is it? So has anyone had any experiences of this?

Can I get the GP to do the referral form for more weight? (he's been telling me to put mum into a CH for over a year now)

Thanks for you advice

Regards

A clueless young lady with a head in a muddle
 

Christin

Registered User
Jun 29, 2009
5,038
0
Somerset
Hello Rimmel, I am sorry to read about your mum. 57 is very young, and to face losing your home as well must be very worrying for you.

To answer your question, we didn't secure this funding, but the assessment should be made. This AS factsheet may give you some guidance. NHS Continuing Health Care

You could also contact the AS Helpline, you will be able to speak to someone who can give you more guidance.

Very best wishes to you, please let us know how you get on xx
 

Sofia

Registered User
Sep 4, 2007
6
0
Pontypridd, South Wales
Sorry to hear about your mum, my mum has Alzheimer's which started in her early 50s. She is in an EMI nursing home for the last 2 years and met the criteria for Continuing Healthcare. If your mum is unpredictable in any of the domains you mentioned you should have an assessment. Talk to your social worker or CPN about having a CHC assessment. During the assessment all the domains will be discussed and assessed low, medium or high. If your mum scores high in some of these she may meet the criteria for CHC. Hope this is of some use. I feel for you so much having been through it myself, luckily I had great support from my sisters. Also I'm a nurse myself and it doesn't make things any easier.
 

Cecilia

Registered User
Jan 31, 2012
42
0
Hi Rimmel, we went through this last year with our Dad, in Norfolk.
We went fully prepared with the paperwork from the factsheet and other websites. To make sure they followed the national guidelines properly.
Family were invited to attend and the meeting included the Social Worker, mental Health Nurse and a District Nurse who acted as chair. The Social Worker and the mental Health Nurse had both done assessments or visited recently so they had an up to date picture. they followed the paperwork very accurately and graded, as Sofie says, low medium or high.
The outcome was that Dad was not elegible but at least now we have a benchmark, if he gets worse we can have him re-assessed.
Wishing you all the luck in the world, be prepared, as my sister in law, in Sittingbourne, tried the same thing and the Social worker and District Nurse did not know that there were nationwide guidelines that they should follow,they wanted to do it there way.
You've alot on your shoulders, this forum, although, I've only just joined, has a wealth of knowledge its brilliant, use it.
xx
 

small

Registered User
Jul 6, 2010
110
0
harrow
Hi Rimmel,
I have no official knowledge on continuing care except that the first time we applied for my mum in law we were turned down and now we are trying again. But as the council also has our application for them to take over the costs, because my mum in laws money from HER house sale is running out, I think the council is looking at it more sympathetically. Maybe the council gets funded from the govt. for nursing care!

Anyway I think its dreadful that a young person of your age should get made homeless because of these iniquitous funding regulations. I have nephews and nieces who are still living with their parents in their 30's because of the cost of housing.

I would really try and get some advice on what YOUR rights are. Its a pity your mum didn't add your name to the deeds earlier.

regards jackie
 

keane

Registered User
Sep 9, 2005
39
0
Hi Rimmell

We got CHC funding in July last year despite being told that we wouldn't get it. I really wish we had gone for it earlier.

I'm happy to share everything that we did to get it if you want to get in touch with me directly. But, in the main, we got funding because mum was judged to be 'non-compliant'. This made a huge difference because it's mum's non-compliance that flipped her from social care to nursing care. That is - she is non-compliant when washing, changing etc. I don't know much about Pick's disease or what stage your mum is at. SMy mum has late stage Az but is still in pretty good health physically. The CHC process is difficult because it is framed for people with either physical disabilities or mental health disease and Dementia can fall in the gap between the two or not really at all. (The cynic in me would say that this has been done deliberately)

I take it your mum owns her house outright? Are you still living at home?
Definitely get your GP on board - ours was fantastic. Your mum is entitled to more than just the universal services that everyone else gets.

Also - I would write to your MP and explain your situation and the fact that you may lose your home. My mum's MP again was fantastic.

This all takes a lot of effort and persistence and not taking "no" as "no". From our experience Local Authorities interpret CHC as they want. Not the easiest when you are also coping with the loss of a parent and caring.

Good Luck and happy to help.

x
 

Saffie

Registered User
Mar 26, 2011
22,513
0
Near Southampton
Her support team were present, psychologist, occupational therapist, social worker, etc and at all times it was made clear to me what the discussion and criteria were all about.

That's wonderful to hear - all that happended with my husband was that a nurse filled in the necessary forms and I was not invited to attend any assessment. The application didn't even reach the panel - despite the consultant Psychiatrist saying he was sure my husband would get it. He also has numerous physical helath problems but was not violent. Apparantly, this is what makes the difference. When I wrote to the PCT and asked to see the 'Tool' for the decision, which was my right, they sent it to me with a letter saying that I could complain about the process but not about the result. I had no argument with the process as the nurse had, quite rightly, put him into the highest category in most things but they had downgraded every one.

Good luck with this - I have heard that you have to in a terminal state to receive it here now.
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
Hello Rimmel:

You need to get in touch with a SW (hopefully one that has been allocated to your Mum and understands her) and the Mental Health Team, also GP and any other person involved in your Mum's care. Ask the SW initially for a formal Assessment for CHC and say you or an Advocate* for your Mother wish to be present. If you can provide any evidence that backs up your own thoughts of 'priority' then that will help too.

You say you believe your Mother is priority in several areas. I do feel this is highly unlikely in CHC terms as priority is usually given to someone in a critical state, i.e. absolute final stages. In such cases there would be a 'fast track' system for CHC.

However if she is in late stage with other health issues other than dementia, then she may well have 2 or more 'severes' and that could qualify.

* You may be able to locate an Advocate via the local Branch of the Alzheimer's Society or Age UK.

Once an Assessment has been done then this should go to Panel for a decision. If it is a 'no' then you can Appeal. This can be done with the help of the Alzheimer's Society NHS CHC Volunteer Support Group (who helped me tremendously).

Saffie:
they sent it to me with a letter saying that I could complain about the process but not about the result

Just because you were told not to complain about the result you could Appeal against the decision. Again you could have obtained help from the above Support Group.
 

Saffie

Registered User
Mar 26, 2011
22,513
0
Near Southampton
I know Jan - and I still haven't entirely given up on the idea, especially now that his amputation is proving troublesome and they won't operate . But I was hoping that I could do it once other problems had settled down a little but they don't seem to want to do that!
Incidentally, my wocial worker had nothing to do with the application- it was done by the nurse in the community hospital. she did argue the case with the PCT too but to no avail.
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
My SW had nothing to do with it either (well she was present at the first failed Assessment but she did not contribute much and failed to attend the Appeal meeting). I mentioned it above as it seems to be quite normal for the SW to get an Assessment Panel together.

With me it was the Assessment Unit nurses who did the first Assessment which was classed as 'poor process', hence my need for the Volunteer Support Group plus a lot of homework for me working on the National Framework.
 

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