Hi I am Lyn, a newbie to this site. I have reading about Michael and feel I am about to go down the same line. My husband Nigel has had Parkinsons for nearly 18 years and is now unable to do anything for himself. He was only 41 when he was diagnosed. I have been fighting for continuing care since last October. First we had the assessment made by a continuing care assessor and the parkinsons specialist nurse. Then in December I was asked to write a full weeks diary of everything that I do for my husband and all his needs. The panel of 3 sat on the 28th January and I found out the following day (I phoned them) that he had failed, but I had to wait 3 weeks for the report. I appealed on the 30th January. I had to wait till the 17th March before the continuing appeal assessor came out to the house and take more details. We were asked to gather as much information from family and friends to help with the appeal. My son wrote a 6 page assessment on his father following the same domains as in the report. On June the 11th the panel sat again (3 different people) and again he failed, this time though he went down 2 domains, high to moderate, moderate to low. Can't work that out. Once again I said I wanted to appeal. I was told that Nigel could be reassessed, because it was a long time since last October. On July 6th the original continuing care assessor came out and sat for 4 hours and reassessed Nigel. I was told that this time the system had changed and the assessments can be done by 2 members of the multi disaplinary team (different disaplines) and a decision can be made right away. Ha Ha, because of holidays, sickness, long term sickness, people having babies, it was not possible for 2 people to come out, so the assessment was done and we would have to wait till a further person could look at the assessment. Once again our GP (wonderful guy) the OT, Physio, Speech Therapist, Dietian Manager at respite home, Parkinsons nurse, Consultant, Social Services and me all have to spend time writing more reports just to bring it all up to date. Don't these guys understand that Parkinsons only gets worse not better. I gave the assessor 2 weeks and a day to tell me whether she had found anyone to do the other assessment, only to be told that she has now left the job because she is sick. Great, so I am back on the phone again to see who has taken up our case. Meanwhile (and you will love this) I had a call from the social worker, Nigel's social worker who has never met him, she tells me she has been asked to do an assessment, yes I said, she asked me if I could give some details, could I send her any reports I have, I asked what does she need and she gave me a full list of things she needed to know. I sat until 1am, writing a full and detailed assessment on my husband's health needs and care I also sent her copies of past reports. I recieved back an email thanking me for my prompt response. Several days later I thought about this and said to my husband, I have just done the social workers job for her,why shouldn't I get paid for it. So I sent her an invoice for £60. Watch this space. Meanwhile I emailed my MP and within 15 minutes his secretary phoned me and told I her the whole sorry story and they have now written to the chief ex. of the Norfolk nhs as I have compained about the way in which this PROCESS has gone. I wait, but I will not let this lie. I have read Coughlan and I know my husband is well and truly within the criteria. His speech is almost unintelligable, he is double incontinent, he cannot feed himself, wash, do his teeth, he cannot take his medication by himself, he is totally immobile. In fact he really cannot do anything for himself, apart from a little loss of short term memory his mind is good, though he can be a bit confused at times. So I think by all accounts we should get some continuing care. I have no help at all, only 4 weeks respite a year, even that can be tiresome. In March he was in respite for 2 weeks, and on his return it took me 3 weeks to get rid of his bedsores and get his bowels to work again. Was it worth it. At present I have not been asked to attend any meetings, faceless people who have not met us have made decisions on our lives without consulting us at all. Surely this cannot be right. I have spent hours and hours on the phone, hours and hours reading information on the net and hours and hours writing e-mails and reports. I feel my life has been put on hold, as I can not go anywhere or do anything, as looking after Nigel is a 24 hour job, yes a job which I have told everyone concerned that I have not been trained to do. I even take urine samples to my surgery if I think it does not look right.
I am not sure where the next move will be I will have to wait for a letter from the complaints department as I am sure the chief ex. will pass it on, I gather I have to go through the process, first PALS then the complaints department then where after that I don't know. I am not going to let them get away with this, I know I should have some help, I was going for one hour a day at the beginning just help with the morning routine, now I feel like asking for at least 3 hours. I have to do everthing on my own, but I know and I have been told that it would take 2 people to do what I do. Health and Safety.!!!!!
Just writing all this down again, has helped me, and my typing is getting faster.!
Best wishes to all for a wonderful web site. Lyn
