hello to everyone on this website, this is my first posting.
I would be interested to know if anyone who has a relative with Parkinsons Disease and has been on fully funded NHS Continuing care has had or is about to have their funding withdrawn,as my mother who has very advanced parkinsons disease and other health related problems has just had her funding withdrawn after over 4 years. She went into a nursing home on continuing health care and had reviews every 3-6 months but they have suddenly stopped it and now we are having to face the prospect of paying £750 per week for her care.
This topic has been front page news recently in the press and I wondered if anyone else has had to face this dilemma.
Incidently the consultant wrote a very supportive letter saying that he would support any funding application, but they have ignored this.We are finding it all incredibly stressful,but are determined to get some answers.
Hi Cheshire cat,
Sorry to hear about your Mother.I have the greatest sympathy.My Mother unfortunately went into a care home at the end of November.To cut a long story short.She suffers from Alzheimers,but the final straw came when she fell made a mess with her hip and my Dad coulden't cope with her at home.She was placed straight from the Hospital into a care home.
We were turned down for fully funded continuing Health care.I appealed on behalf of the family and we are meeting for a review in a couple of weeks time at the care home.They have made the process very awkward and must admit to not having much hope now hearing your news.As things stand they are covering my Mothers care until review.
I will certainly keep you in touch with the outcome,thanks for the info,and i only hope things work out for you.
All the best
Hi Titan, thankyou for your reply. Glad to hear you are contesting this decision. If we dont stand up for our family, who will?
I will keep you informed from my end too.
Had a review at care home today.My Mum has taken a marked decline i,m afraid.With this in mind,they are continuing to cover my Mums care and will review again in a months time if my Mum recovers,which i have to agree with the doctor does not look promising.All i can assume from this is that the funded Health care has not been stopped for everyone.
All the best
Hi Titan, I am still battling away with this one. I think in your mothers case she may have been fast tracked. It is difficult with parkinsons patients as when they are assessed they can change quickly over the period of a day, with on/off symptoms and this does get overlooked. I find that the assessment teams have very little understanding of parkinsons and they need training for this.
Lets hope things improve for the future of parkinsons patients, meanwhile I will carry on trying to get a fair deal for my mother.
Just to let everyone know that if you get the Parkinsons magazine, there is an informative article on page 26,about continuing care, in the Winter 2009/10 edition. It tells you about how the assessment is done and says that feedback to the PDS suggests that the guidelines aren`t always applied consistently from area to area, this then needs looking at or parkinsons patients will lose out on fully funded care and end up[ selling their homes to pay for care they should rightfully have received.
Just to let you know the appeal for my Mum went well and full costs of my Mums care are being met.Hope you are having luck in your endeavours.
All the best
Hi Titan, I am really pleased that your mother has been awarded fully funded care. I am still awaiting a review, but noticed that in a leading newspaper last week, there was a 2 page article on this subject and it mentioned the fact that patients are assessed, then when it goes to a panel, they are marked down, so that they do not qualify. I wonder how many parkinsons patients round the country are forced to sell their homes to pay for their care, when they should have qualified for fully funded care anyway.
It will be interesting to see what comes of this personal care bill that the Government is trying to implement, and will it apply to parkinsons patients in care homes?
Hi all, still battling on to keep the funding that my mum qualified for originally 5 years ago. Maybe this change of Government will help elderly vulnerable patients with degenerative conditions like Parkinsons. I know that the Alzeimers had a lot of input into continuing care last time, maybe our campaigns team can do the same for parkinsons patients!
Hi all, my mum was turned down again for funding, despite having obviously deteriorated over 5 years in the nursing home. Like the employment support allowance, where parkinsons patients have complained about lack of understanding about fluctuating conditions such as parkinsons disease, I found the same issues applied here. The assessors will not be moved by the fact that you can change from hour to hour, they assess you as they see you there and then.
This is a job for our campaigns team. We need to get the new coalition Government to review the paper on continuing health care, as there are bound to be others with Parkinsons Disease who are very advanced and need nursing care which should be funded, but who fail to qualify through too critical criteria and lack of knowledge of the illness.
Sorry to hear you have been turned down again.I managed to get my Mothers care fully funded mainly because i based the appeal mostly around the medical grounds.The fact that She was admitted to Hospital with a medical condition,largely unresolved,but so happens to be in a care home because of associated problems(Alzheimers)and her age.She is at present still fully funded.
As for my Mothers condition now.Still the same problems,but she's a battler.They have said this in the care home.We thought the worse a number of Months back.
Don't give up cheshirecat,i am full of admiration for you.
All the best
Hi Titan, thankyou for your support, it is very much appreciated. I don't suppose people really understand how stressful it is going to tribunals and applying for this funding unless they have been through it like we have.
I am so glad that you have been successful, I think this is largely due to the fact you mentioned your mother had Alzheimers, I believe that the Alzheimers Society had input into the continuing health care criteria, or so I was told, when it was last revised, and so this may have gone in your mothers favour.
We now need to do the same for Parkinsons patients as the criteria is not weighted in their favour, as much of it is on mental health issues such as challenging behaviour.
The assessors will not listen when we say that her needs are complex, unpredictable and fluctuate, despite consultants letter stating this.She is under 7, yes 7, specialists for heavens sake. How complex do they want it?
Our policy and campaigns team will hopefully sort this out in the future!
Parkinson UK forum users may be interested to know that in the August Branch Bulletin to members, we have been asked to help with a survey on continuing care.This is a package of care that is arranged and funded by the NHS to meet health needs of people with a long term illness or disability.
Donna O'Brien is asking for views from people who have applied for continuing care and their experiences, or who are about to apply.
Please contact the campaigns team if you can help with this, as I know what a nightmare experience this can be if you are not advised properly.
We have to try and improve access to fully funded care for people with parkinsons as it can be extremely expensive to fund the care that you need in a nursing home,and people being assessed are not always aware of their rights.
After speaking to other patients and professionals,I have come to the conclusion that
1. Very few people have heard of fully funded care and dont know about their rights to an assessment.
2. Very few people with Parkinsons fit easily into the strict criteria, unless they have other significant health care needs.
3. Patients even with end stage Parkinsons disease are disavantaged by the way the criteria is worded and sections that are irrelevant to them.
4. Assessors may not have enough knowledge of Parkinsons, to understand fluctuations in the condition and risks associated with the on/off periods.
I agree with the conclusions you have reached.As you know,i managed to get fully funded care for my Mother after appealing,it was not easy.
The biggest stumbling block is the Health care needs being the predominant feature of the illness,e.g should be in hopital receiving care but being looked after in an alternative setting.
With both Parkinsons and Alzheimers the main hurdle is the progressive nature with the emphasis on care but not health needs.This becomes obvious box ticking when trying to meet the specificaly worded criteria for the funded care as you mention.
I also agree with the lack of knowledge concerning pd by persons in control of these decisions.However the Assessors who have regular meetings to decide such claims,are only interested in the answers to their questions,which are extremely hard to answer.Especially with back up evidence from social workers etc who will tick a person as fit unless they are bedridden and beyond coherence.
As a matter of interest,my Mother is still fully funded and has amazed everyone with her resilience.
Hope things are improving for you
All the best
Hi Titan, thankyou for your very thoughtful reply.
We have been turned down for fully funded care, but got a nursing care contribution which is something, but the whole criteria need looking at again, with consideration given to Parkinsons patients with regards to a deteriorating condition and fluctuations in the illness.
Forum users may be interested to know that on BBC teletext this morning, on the health section, Stephen Dorrell, the new Chairman of the health committee, was quoted as saying that vulnerable elderly people are being unfairly forced to pay for health care and that patients with conditions such as dementia used to get FREE care in NHS geriatric hospitals, but were now being pushed into a means tested social care system where they are charged for their care.
This is what has happened to my mother who has parkinsons, and another family member with parkinsons is forced to pay top ups to her nursing home out of a disability allowance., unbelievable!
Hi Cheshirecat and Titan. Have just been reading your posts and want to thank you for you informative exchange. Your mothers are very fortunate to have you to fight for them. I hope this is something Parkinsons UK continues to lobby on and that fairness prevails. I hope all goes well for you personally. Thank you.
Hi Chrissie, Thankyou for your support. I am pleased to say that the campaigns team have asked for responses to this in their news section. Like Donna O'brien pointed out, patients used to get this nursing care free years ago, but now must pay for it themselves through means testing.
I know that in a recession, we all have to cut back, but the really sick and elderly have lost out for years in being forced to pay for their own care and not told of their rights.
Parkinsons patients are particularly vulnerable because of fluctuations in their condition and the complexities and unpredictabilty of the illness means that on any one day you could present differently in an assessment.
I have been trying to get this message over for years, and hopefully we will now get something done about it, I just hope people respond to the consultation on this forum.
There was a good programme on radio 4 today, you and yours on care in the uk. It talked about the future funding of social care , which will affect patients with long term conditions like parkinsons. It is a particular worry to those with neurological conditions as they are likely to need this care over a long period of time.
If you go to their website it will tell you how to get in touch if you have any comments on the subject.
There was a good article in the Daily Mail yesterday,stating that more than 20,000 pensioners were forced to sell their homes last year to pay for care. Out of this number, there will be many with neurolgical conditions such as parkinsons, ms, stroke who need to be nursed over a long period in nursing homes.
It is vital that patients understand their rights and get assessed properly.
If your medical needs outweigh your personal care and you think you qualify for continuing health care, find out now before you become another statistic.