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with Parkinsons Disease and has been on fully funded NHS Continuing care has had or is about to have their funding withdrawn,as my mother who has very advanced parkinsons disease and other health related problems has just had her funding withdrawn after over 4 years.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
Titan

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.

Hi Cheshirecat,
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
Titan

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.

Hi cheshirecat,
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
Titan

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.