• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Unfair CCG postcode lottery over NHS funding for dementia

Fluffyval

Registered User
Dec 5, 2013
21
petition.parliament.uk/petitions/114241

Hi,
Dementia is a horrible disease. I have personal experiences of the lottery of NHS funding for dementia patients due to my husband having both Vascular and Lewy body dementia.

It is concerning that there is any disparity between different responsible NHS Clinical Commissioning Groups in terms of NHS funding for care home costs, known as continuing healthcare funding, and shocking to learn that patients are 18 times more likely to have their care funded in some parts of England than others.

Please sign my petition to persuade Government to apply the primary care need more equitably to Mental Health criteria.
If in addition you could ask your MP about this, that would be wonderful.

The threshold for full NHS Continuing Care funding in dementia is high, and may be withdrawn if needs reduce.
Though you may ask, as I did, how can needs reduce, the NHS has the impression that dementia disease can get better, go figure.

There is no legal definition of a health need, but for the purpose of NHS Continuing Healthcare it has been defined as:
‘one related to the treatment, control or prevention of a disease, illness, injury or disability and the care or aftercare of a person with these needs (whether or not the tasks involved have to be carried out by a health professional)’.
By this definition it is obvious that dementia patients qualify for full funding for their care.

Elements of the new Care Act came into effect in England on 1st April 2015. If a person has care needs that are beyond the local authority’s legal remit for care provision, the NHS should still provide and pay for all care – with no means testing. Also, in any new social care assessment, the assessor MUST take account of potential eligibility for Continuing Healthcare.

This should in theory mean greater fairness but it isn't happening. Yet!

Please sign my petition so that the government has to debate this in public.
It may be in your or someone you love's best interests.

Also if you could share or investigate that would be great.

Thanks
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
You have to post a certain number of times before you can post a link Fluffyval, but AlsoConfused has posted it for you so no need.
 

Chrismitch

Registered User
Jun 23, 2011
127
CJD and the rare types of dementia are always fully funded. Presumably the NHS can afford to pay for a few people but not in large numbers like VD and Alzheimers. Where is the justice in that?!
 

tre

Registered User
Sep 23, 2008
1,353
Herts
My husband has PCA which is a rare dementia. According to UCH there are only about 500 sufferers in the whole of UK but there is no automatic CHC funding as you suggest although I do know a few people have succeeded. What makes you say those with rare dementias are automatically funded?
Caring for my husband takes all my resources and I do not have time or energy for a protracted struggle to try to get this, especially as it can then be taken away at review a few months later.
I did talk to my husband's consultant about this and, knowing that I am passionate about looking after him at home myself rather than residential care, she said that unfortunately it is a postcode lottery and here in Herts it is extremely rare that it would be awarded to a patient not in residential care regardless of the severity of their condition.
Tre
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Your experience alone makes it clear that it can't be automatic Tre. And the frankness of your husband's consultant, though rare, is helpful if only in the sense that it is yet another piece of evidence that there is a postcode lottery. This is, of course, not right but it is a fact. I know exactly what you mean about the time and energy. We were very fortunate in having sympathetic professionals who did their job as they are supposed to. I could not have fought a battle successfully if I had been on my own.
 

tre

Registered User
Sep 23, 2008
1,353
Herts
Thanks Stanley. The great thing about TP is that people understand what it is really like.
Tre
 

Fluffyval

Registered User
Dec 5, 2013
21
NHS funding

My husband has PCA which is a rare dementia. According to UCH there are only about 500 sufferers in the whole of UK but there is no automatic CHC funding as you suggest although I do know a few people have succeeded. What makes you say those with rare dementias are automatically funded?
Caring for my husband takes all my resources and I do not have time or energy for a protracted struggle to try to get this, especially as it can then be taken away at review a few months later.
I did talk to my husband's consultant about this and, knowing that I am passionate about looking after him at home myself rather than residential care, she said that unfortunately it is a postcode lottery and here in Herts it is extremely rare that it would be awarded to a patient not in residential care regardless of the severity of their condition.
Tre
Just a point, NHS full funding is not restricted to patients in care homes, those at home can get it as well
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
That's true Fluffyval but here again we see the difference between what should happen and what actually happens. The CHC process should not allow where the care is taking place to affect the outcome but this consultant knows that in Herts it does affect the outcome. The same is quite possibly true in other places.

But I appreciate that you want people to know what should be the case and not give up because they are caring for someone at home, as I am in fact. When I informed the GP that Sue had been awarded CHC he assumed she would be moving into a CH. :(
 

Fluffyval

Registered User
Dec 5, 2013
21
Equal access to care?

I think we have to get the with their own words, and the whole premise of the chc dst route is to have an englangd wide fair access to care, they should not be doing different things but they do.
I read this on the NHS Choices website
Conditions/social-care-and-support-guide/Pages/nhs-continuing-care.aspx

Extract
Care and support planning
If you are eligible for NHS continuing healthcare, the next stage is to arrange a care and support package which meets your assessed needs.
Depending on your situation, different options could be suitable, including support in your own home and the option of a personal health budget. If it is agreed that a care home is the best option for you, there could be more than one local care home that is suitable.
Your CCG should work collaboratively with you and consider your views when agreeing your care and support package and the setting where it will be provided. However, they can also take other factors, such as the cost and value for money of different options, into account.

Pretty plain, go figure how they squirm out of that