As you will know from my blog my sister passed away on Valentine's Day. Life is hard and I miss her terribly also the routine of visiting her in the nursing home. I am trying to get my life together again. I had a phone call from the PCT concerning my appeal against the granting of CC for my sister. The caller offered her condolences on my loss and asked whether I still wanted to continue with the appeal, which I was perfectly at liberty to do so. She said she had spoken to the nursing home and asked about my sister's medical condition and basically nothing had changed since the last assessment (visual one) in September last year. You all know how PSP has its wicked way with you. My sister had lost all her speech, unable to do anything for herself, fed by PEG, was going to need help with aspirating. General condition was much worse. She considered her needs were not altogether medical but more general care and for that reason she was not going to get CC in retrospect.
What can you say. I was never going to win. I havent the energy or the fight left in me to try again at a system that is so wrong when it comes to PSP. All I can say to everyone out there
is to fight and fight hard to get what your loved ones deserve and need. I lost and failed.
Hang in there everyone one day there will be more help for you all
God bless all of you
Maeve
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maeve
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I am very sorry to hear about your sister and you have my deepest sympathy.
I feel as though more should be done to help people I am a full-time carer for my Mom getting carers allowrance I feel that we should be paid at least minimum wage. My Mom needs two people to help so as to pay for the other care out of her own money. I get 4 hours a week free time. when I had a questioner about this it said in my 4 hours can I do the following follow my own hobbies, sort out my finances ,go shopping and sort out my own medical propblems if any. I wrote back and said if you worked 24 hour 7 days a week with 4 hours of would you be able to do what you want to do with your life??? I think you can answer that your self.
I have come to the conclusion illness in this country is bad for the long term people.
I am so sad for you and your sister. We only got mum's paid in retrospect, 3 weeks after she passed away and I felt so angry as the paperwork had been left in a drawer for 7 weeks after we were told mum had qualified.The lady concerned wrote and said she had enforced sick leave as her excuse when she returned to work! It really isn't good enough. I would be sacked for less.
I have included a grumble about CHC to my MP when I sent the template letter regarding health reforms being considerative of the needs of pwPSP.
When I emailed the CHC saying how everyone had met mum down and it had all been a fight (hint hint) her answer was not oh sorry we let her down too, it was basically get a counsellor if you are having issues! I was so gobsmacked i didn't reply further as I would have been at least angry if not downright rude.
It really riles me that there are all those malingerers out there who claim benefits as an income and have all these human rights yet someone suffering like this is excluded from having the help they need. Giving CHC at the end stages is quite frankly too late. What can you to for someone who then only needs palliative care? The time they need financial help is when they require 24 hour supervision, physiotherapy, feeding, a quality of life, special chairs etc. because the NHS isn't going to provide those things without a fight and a long wait. GRRRR!
You are so so right in your comments about C&C. We cannot get the help we need for those who so desperately need it with terminal illness when the system is backed up with who have never paid a penny into the system in the country and are still arriving. I could go on and on about the system but it will never be any different until someone starts saying no to those who wont help themselves and yes to those who really need it. As you say it is all too LATE.
Oh dear and I was going to ask anyone who had received CHC, HOW they went about getting it.
Neither of us want him to have a PEG or be in such a condition where he is dependant on machines and apparatus in the home for daily "living" and have the house used as a hospital. PSP and CBD are rare conditions with relatively few sufferers. in relation to alkzeimers sufferers say.Therefore we should demand and receive proper care for them.
My mother-in-law had senile dementia and was cared for in a specialist hospital by trained professionals in her final days and was well looked after. That was over 20 years ago. It seems to me that the NHS are now giving up their duty of care to terminally ill. I have been told that, generally, a PSP sufferer dies through complications such as aspirational pneumonia. Is this what we have to look forward to before he gets help from the NHS?
My husband is in his 7th year of PSP and last night I spent over three hours protecting him from self-harming as he insisted he wanted to commit suicide! I had to hide all the knives and scissors, lock all the doors and just watch over him. He finally quietened down and I was able to get him back to bed, and I was able to sleep but this morning I am exhausted and have still got to carry on. This morning my husband sleeps on. This is not the first time he has behaved like this and I really do not know what to to in this situation, do I phone the police, paramedics, who? what do I do?
Dorothy you need to start applying for it asap as it will sometimes take at least 2 assessments because they have to have written evidence of deterioration etc and this is sometimes only gained by them visiting at least twice. Take photos of any injuries and keep a diary, including all infections and falls, especially GP interventions etc to prove the fluctuations as well. paint the worst picture you can- tell them he has no quality in life other than eating/visits from people , dont let then write things like he enjoys watching tv, going out etc. It takes him in to the next category if they can say he has a half decent quality if life. PEG feeding does not ensure CHC , sometimes it actually stops them getting it. IF you can get across it is dangerous as he is having lots of falls it is a big one on the list. List them, photograph and date them all. He will be having more than even you realise. Depression and self harming are another.
, as is fragile skin (photograph any sores) and risk of aspiration, choking etc. Dont hold back to spare his feelings, give them the whole thing , cards on the table.
Than appeal if needs be.
Good luck, Dianne x
I would definitely phone the paramedics in behaviours like this and during out of surgery hours as they can actually do a urine test and also start him on antibiotics. Sometimes an outsider can dissuade them from this impulse as they can put across that they must listen to relatives as they care about them. It sounds as if he was delirious and that would imply an undetected infection. Mum only exhibited extreme obssessive behaviour like this when she had a UTI brewing . She often had not outward signs and only tested positive after about 3 or more days so get your GP out today if you can. Infection control is the biggest factor in PSP as each one can take them down at least one more notch and they are often asymptomatic.
Thank you Dianne, I never understood any of this, last night he wanted to get out to play cricket but I managed to calm him down and soothe him relatively quickly!
I do keep a diary and when I look back, you are right, he has had so many falls. It is a miracle that he has only had to attend A&E twice, on both times occasions for the same wound. I will do as you suggest and take photographs, I never thought of that before thank you.
Although I tell the social workers, community matron, gp and anyone else who is remotely interested in just what does happen to Harry, I feel like I am being metaphorically patted on the head and told what a "good job I am doing".
I am seeing my GP next week and will hopefully spell it out loud and clear!!!
Please get your GP to start the process for CHC immediately, your community matron may come and do the health needs assessment forms with you at the house. If your hubby qualifies, and from what you have told us this this should not be a problem, the CHC team then come out to complete a form called the Decision Support Tool and this all takes time to organise. The reason it is urgent is that once your hubby gets off his legs and becomes bed bound, the falls stop then that risk isn't there any more and that goes against you and I know this from bitter experience. The self harming thing should be a priority now. If he gets confined to bed that risk also disappears as it would be difficult for him to get out of a hospital bed with cot sides. When the CHC team come out to asses him, don't let them fob you off with putting down things like "he is calmed with reassurance" that is a good get out clause. Your PCT may be better than mine but just to give you an idea, the CM came out to do Derek's HNA 11 July, the PCT came 31 August to complete the DST and because they deemed none of his symptoms were a priority, the decision then went to what they call a Panel and the final decision was only made on 25 January and we were told that he didn't qualify. He died on 16 Feb, so much for not being eligible!
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My darling Mum
Advice needed for forthcoming CHC Assessment
Psp hereditary 
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continuing care
