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UK legal, insurance, employment, benefits, statutory services Advice offered by HDA Moderators relates to current UK law or guidelines

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Old 09-03-17, 12:41 AM   #1
SilverMoon
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Default I am livid about funding

My mum has had Huntington's for 10 years. Last year she was in a HD care unit for a year then moved into a care home in December last year. It has been a difficult 17 months as my dad had cancer and died December 2015. My sister and I are now dealing with things. I cared for my mum for several years. Last year my mum got 75% nhs continuing healthcare funding and 25% social funding. My mum is paying her contribution and the home did not need to be taken. I had a letter with a date for a funding review, now a month ago there was a meeting for my mum to review how she is getting on in the care home so HD nurse, HD doctor, me, social worker and care home nurse there. It was established mum feels more depressed so upped her anti depressent, her chorea movement is worse and her cognitive ability has decreased. My mum can still speak, but in short replues or yes or no. Now the HD nurse said she could not do the date for the review, so I was thinking ok we'll get a new date. Today I get a letter in the post they HAD tbe review meeting. I of course did not attend thinking it waa eing rescheduled! I do not know if the HD nurse was there. The letter statea my mum no longer has unpredicatable or complex primary health needs! I am furious at this afterall she is in there for nursing care! My mum cannot walk, needs feeding, showering, dressing etc and deteriorated and now they say she has no complex primary health needs. We cannot believe this has been the outcome when she has gotten worse and changes were even noted at the meeting last month and written in a letter. We are going to appeal, because our mum certainly has not improved and as we know know never will. They seem to want to get out of funding through thenhs chc package. It is instead nursing funding of 156 a week plus £5.80 a week for continence. What a joke this is and makes no sense except they want to cut funding! Has anyone else encounted this? I rang the HD people and got advice. I just wonder who was at the meeting to give the right info for the assessment. We are in the proccess of finding a buyer anyway and I live in the house and things are bit more complex but rather not say about. We have LPA already so that is in place. I just cannot believe they have decided somehow our mum suddenly doesn't meet the Joint Funded nhs chc/social care package when she us worse.
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Old 09-03-17, 10:37 PM   #2
jaq
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Default Re: I am livid about funding

This really is a minefield . I care for ny brother at home and we have funding for some support from the council . I applied for continuing health care funding and the application was declined . I appealed the appeal was declined . I have recently begun the process again the social
Worker is new and says she doesn't know anything about it and is in fact leaving and going briefly though the support tool it seems doubtful we will get it . But I think the care I provide goes over and above what is social care .

I think the hard facts are none wants to pay for anything and because people with hd who are getting good care can live for quite sometime all using up money . But if someone with hd which lots of medical
Literature states 'is one of the most complex and horrific diseases ' doesn't qualify for continuing care then who the hell does get it . Is it S pidt code lottery ? Does it depend on the professionals helping us I dunno .

If someone from the hda maybe has the figures of how many families have applied for continuing cars funding how baby were successful how many sccceeded in appeal and how many were declined .

What is the geographical info re successful applications . Who was representing families at applications that were successful .
Is it possible to define what makes a successful application .
How many people have been advised funding will be removed .

I trust that thus information is fed into head office from the SHDA's ?

If not it might be worth doing a freedom of information application for some of the info .

The economic pressure on families and the associated worry about funding of the best care for loved ones is a huge strain and we muddle through as un informed individuals in a system which seems set up to fail us . A more cohesive strategy using information from successful funding applications would help many families .

Jaq
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Old 10-03-17, 12:08 PM   #3
SilverMoon
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Default Re: I am livid about funding

Quote:
Originally Posted by jaq View Post
This really is a minefield . I care for ny brother at home and we have funding for some support from the council . I applied for continuing health care funding and the application was declined . I appealed the appeal was declined . I have recently begun the process again the social
Worker is new and says she doesn't know anything about it and is in fact leaving and going briefly though the support tool it seems doubtful we will get it . But I think the care I provide goes over and above what is social care .

I think the hard facts are none wants to pay for anything and because people with hd who are getting good care can live for quite sometime all using up money . But if someone with hd which lots of medical
Literature states 'is one of the most complex and horrific diseases ' doesn't qualify for continuing care then who the hell does get it . Is it S pidt code lottery ? Does it depend on the professionals helping us I dunno .

If someone from the hda maybe has the figures of how many families have applied for continuing cars funding how baby were successful how many sccceeded in appeal and how many were declined .

What is the geographical info re successful applications . Who was representing families at applications that were successful .
Is it possible to define what makes a successful application .
How many people have been advised funding will be removed .

I trust that thus information is fed into head office from the SHDA's ?

If not it might be worth doing a freedom of information application for some of the info .

The economic pressure on families and the associated worry about funding of the best care for loved ones is a huge strain and we muddle through as un informed individuals in a system which seems set up to fail us . A more cohesive strategy using information from successful funding applications would help many families .

Jaq
I think you are right. Your brother if he is at home will have real risks that are health related. I recall my mum being so unsteady, low moods, denial, her temper was bad and family was shouted at. You keep appealing and tell them of all the risks and what you have to do to support your brother. They, as you say, do not want to give nhs chc due to HD sufferers can live over a decade and use up money, but we know the condition becomes worse. I have found out that although my mum needs nursing care and her mood is lower, her cognitive ability is decreasing, they scored her lower because she has settled. It seems such a contradiction that they admit she has become worse, but score her risks lower. I am going to appeal and point out several things.

A release of figures for HD funding and who wins and the ratio of nhs chc and social funding would be interesting to have figures to see. As you say it IS a complex illness so how is it not qualifing. It is all confusing like you put and who wants to help you I just do not know.
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Old 13-03-17, 07:55 PM   #4
jaq
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Default Re: I am livid about funding

I am confused as to what counts as nursing care and what counts as social
Care .

The odds are stacked against us as hd is so very complex but trying to fit into the the narrow boxes defined to qualify .

Am hoping simine gets back with the info re successful applications .
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Old 13-03-17, 11:33 PM   #5
Allan
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Default Re: I am livid about funding

.
Hi Jaq

Have a look at Beacon CHC. They seem to be able to help and they also have a downloadable toolkit.

Wherever you look this seems to be the major debating point:

Diagnosis doesn’t guarantee eligibility
Eligibility for continuing healthcare is not judged on a person’s diagnosis. So, even if a person has been diagnosed with Alzheimer’s disease, Parkinson’s disease or another degenerative condition, they may be assessed as not having a primary health need.

Instead, eligibility is determined by the assessment of the person’s day-to-day care needs and how those needs should be met.


Once again, the Alzheimer's forum seems to be the place to look for info.

Also, have you seen jonsalie’s post today in the “outbursts of temper” thread?

“… I still look after my wife 24/7 with the help of carers, professional etc all funded by CHC. My wife is totally reliant on others, is peg fed, cannot talk, but !!!! she is the life and soul of the party, she is highly intelligent and understands everything that is said, she has our carers and me in fits with her sense of humor ...”

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