I met with our doctor today about funding for Geoff he said I had to ring the p.a.l.s. line at the hospital they told me not there remit speak to the ward sister and ask for a social worker who covers that ward there isn't one apparently only ones that come in occasionally I seem to be going round in circles and Geoff is still quite ill at the moment but even when well he cant come home unless I put in lots of care and equipment they keep changing what I need in place depending on who you talk to should I get in touch with any organisation that can advise me I don't know if the funds come from the doctors allowances so am I being put off because I know they are trying to cut down prescription costs at our practice I just want help to keep him at home [his wishes] is it too much to ask for help with the costs sorry for the rant I am just fed up
help help : I met with our doctor today... - PSP Association
help help
This happened to my dad when he was admitted to hospital he was not able to swallow anything at all. I rang his Neuro Matron and burst into tears he had fast track CHC granted within 24 hours, so it can be done. Do not worry in the slightest where the cash is sourced from you are more than entitled so ditch the guilt. PSP must be one of THE worst diseases and it is a real Cinderella disease, if you are in crisis don’t be afraid to say so. This is the problem with PSP it is unpredictable so you can not plan for changes you do not, as yet, know will happen, or when. I think we were very lucky indeed, in the end but we were very concerned at one point, about CHC etc but dad’s emergency situation brought things to a head and then I refused to allow him home until a suitable place became available, (this was made easier as I was able to be dad’s advocate, as I had LPA) as their home was unsuitable for his increased needs. I am certain that there is a postcode lottery but this is discrimination and that is illegal, all patients must be treated equally regardless of their postcode and should be judged according to need, as if they have no assistance from carers. Evidence should be given regarding their worst days and without anyone to help them, not OK days with your help. Which in my dad’s case would have meant he couldn’t cook, feed, bathe, toilet or move alone and checking for infections - which incidentally is nursing not social care -leading to major falls risk and choking, so paint it black. Be polite but assertive, you are your relative’s greatest advocate. Sorry for the rant but I can’t believe that people are being treated like this at their time of greatest need. Good luck. Ruth x
Hi
Your fishing in the wrong ponds. No blame... you cannot know how it works.
Go to the ward Sister and ask for her to arrange a "Continuing Healthcare Assessment."
Job done.
I would also suggest you say to her that you cannot have him home without a "risk assessment and a care plan in place." Use those words. She will understand precisely what you mean.
Wards are required to discharge people home only after ensuring that their needs and risks are assessed and having ensured a that a matching care plan is in place to meet these. An assessment for CHC does meet these requirements as well as giving you a chance of getting free care at home.
She will know exactly what you are saying and she will most likely move very fast... No one wants a bed blocked. It is your right to have these assessments.
Adding: Even though you want your Dad home so desperately, please, refuse discharge until they have done the above.
I am horrified they have not proposed a CHC Assessment in the light of you obvious request of wanting support.
Come back if you like, no issue or glitch is too small.
Best of luck to you both.
Warmly
Kevin
P.S. - If the Ward Sister does not respond positively to your request... Then take the same request to PALS - They are there to resolve complaints and issues.
Your request to the ward Sister is well within best practice guidelines and if the Sister does not respond with an, "I'll do that." She is totally outside what is required of her regarding discharge.
Do not let her say - "I'll pass it onto the discharge team"... She needs to make that referral... one brief telephone call to the CCG.
Sorry - their response has made me somewhat cross.
Excellent, concise advice, as usual, Kevin. I’m afraid the injustice just gets me every time. Ruth x
Thanks 
Me too Ruth... What got me really cross is that the Doctor should have known PALS was only there to resolve issues and complaints and the Ward Sister, if she only had one brain cell, must have seen that a relative was seeking help around discharge support, yet she chose to answer truthfully and unhelpfully that social workers seldom visit. No mention of the hospital discharge teams and processes (a requirement)
If this had happened in any of the teams I worked in there would be serious questions asked of that member of staff.
Sorry - I'm ranting. So many people must be getting caught on these things.
Kevin
x
our doctor worried me straight away as he said don't worry how high his blood pressure is it was 225 over 125 to me that is a worry the hospital have got it down but it is still over 200 they are checking every hour I never slept last night because I was made to feel inadequate after4 years of caring but I am going there today with a fighting spirit because all they talked about was what equipment we had at home and what food does he have eat etc if I am not listened to today the chap at pals told me ring him back straight away it really is a lottery for care in the area we live in but when Geoff started with this the specialist told me Geoff would die either with pneumonia or a heart attack so its obvious to me we now need full support and I will fight for it we have cost them nothing so far I'm not brilliant on the computer I'm a wrinkly you see kevin but I can fight better than most when challenged I really appreciate your advice watch this space love and regards doreen
Hi Doreen
Yes, that feeling of inadequate is horrid but faced will unhelpful people in a big organisation how could we feel anything, but powerless.?
Lack of concern over those blood pressures is simply not caring.
I am working on my wrinkly thing I try to be nice, and I smile, but I say it how it is more these days.
Good luck - you have an army of us here behind you.
Warmly
Kevin
I have realised reading your advice again they are going to do a chc fast track I didn't realise what the initials stood for thanks kevin I am so tired not sleeping so cant function right at the moment ive got to get my head together Geoff will have to go into respite when he is better as he needs new equipment before he can come home as his physical condition is worse since he went in hospital and they will no longer allow me to move him on my own I just feel at the moment lifes a bitch and then you die I'm a miserable old lady well I think I'm a lady best wishes doreen
Doreen
No way are you a miserable old lady!
You are sleep deprived and running on empty - near enough.
You are fighting for what Geoff needs and you got there
Well done for sticking to you're guns.
You've made my evening.
Now you earned some settled sleep.
Best to you both
Warmly
Kevin
I'm sure Kevin will give you details but, from my experience ask for fast track and show you are anxious about coping. Remember they want him to go home. You are in your strongest position. You don't want social services. We had a palliative team linked with the hospice but I know it varies in other areas.
Stay strong. It is the most important lesson I learnt.
Good luck,
love from Jean x
Kevin and all, I discovered today quite by chance that our CCG's in this part of the world have outsourced CHC funding to some firm. Couldn't get the name of it unfortunately! However that explains why all our CCG's in this area are failing miserably to give people funding when they need it? I wonder how many areas are doing the same? To think the CEO never mentioned that when I spoke to her about this issue? You can't trust any of them!
Marie x
It's maddening to think of the runaround you're getting. Thinking of you, wheelrace.
In our case it was the discharge team who indicated that we were ticking a lot of boxes for CHC and that they would like my wife to stay in for another week for assessment. I jumped at the chance all went very smoothly. Kevin's advice is right. Get ward sister, discharge team, neurologist all involved. Good luck.
Ken
Just wanted to say that the marvellous Kevin gave me similar advice when we were in your situation with my dad. It worked. It was a battle due to incompetent hospital staff, but we got there in the end and dad came home with a package of care. I had wonderful assistance from the PALS manager, she was fabulous. It IS their remit if you're having trouble with hospital staff who don't know the rules. PALS helped me liaise with the CCG (who were awful and didn't know their own jobs properly)! The Discharge Liaison Officer seemed to know the most about CHC in our case. You need to jump up and down and shout for help as no one will offer it. Help in my case came when I sobbed on the phone - it was never forthcoming without a bit of drama sadly. Good luck x
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