My dad had his assessment yesterday (via Teams) and I wanted to share my personal feedback of the experience in case helpful to anyone else.
the experience to say the least was challenging but I was mentally prepared for that. I had to find myself explaining the dangers and risks but it all boiled down to a) medication and b) consultants/professionals guidance.
Communication - I was told if my dad can say yes or no or one word responses he is able to communicate. (Despite them trying to talk to my dad and could not make out anything he was saying live on Teams). They said my mum (carer) can understand him so he has a channel of communication.
Cognition - was told if my dad feels low, angry, upset, crying - he should be on anti depressants and the fact that he was not means he is fine (yes they said this…). Same with broken sleeping - he should be on sleeping tablets if this is the case and if he is not then he doesn’t have broken sleep.
Mobility - was told if my dad is allowed to make his own decision to get up and go to the toilet without permission then he is mobile. He is mobile if he can use a handrail to pull himself up from bed.
Nutrition - was told why we were feeding my dad puréed food if a dietician has not said to do this (waiting since October 22 for a referral).
There was so much more but I wanted to give you an idea of how far removed these professionals are. Whilst I understand the need for medical evidence in the terms of medication to support an unpredictable and serious disease, after the assessment I felt like a failure, failure that I haven’t done right by dad and he should be on sleeping mediation and anti depressants and subject to choking, hospitalised etc. But I strongly disagreed with them saying we should have medical advise on things like his feeding, mobility etc as if I take on board what they say my dad wouldn’t even be here today let alone 6 months ago! Was told if the dietician, OT, SLT whom we have been waiting for since October 2022 have not come to seen dad then it is not as serious- they said if anything was a worry they would have seen him as an urgency.
It seemed like any decisions we made without medical input was questionable- despite going on and on about it is important they are in place for protection and stop any serious dangers happening even up to resulting to death! Social worker backed me up as much as she could but agreed if no medication or professional input he can’t be rated ‘high’ or ‘severe’.
Sad that you have to allow the absolute worse to happen and compromise your loved one here for them to understand this awful disease.
Anyway I hope my experience helps someone so that was my aim to share and also whinge!
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Khalissi
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Please don't feel guilty. You have not failed your Dad. You did your best for him. Even with medical input so many of us have been unsuccessful in obtaining this funding for our loved ones. I really wish that 'these professionals' could spend 24 hours with someone suffering from PSP or CBD and see if their interpretation would change. Take care and big hug. AliBee
Well done for trying, but I would,suggest contacting Beacon to see if they can support you in an appeal and also did you get the supporting pack from the PSPA? Also do you have a hospice supporting you all, they can help with the paperwork/ support.
Thank you for your kind words. I did have the PSPA pack and hospice involved, I even sent everyone the informative pack ahead of the assessment and asked them to ensure they read it to understand. Beacon I used as well and had an intro call with them too which was very useful but the assessors seem to have focused so much on medication and if he wasn’t in it or if the GP has not said he is worried enough to make an urgent referral then it’s not serious… I think this is important for an appeal as we know there are huge waiting lists and urgent doesn’t necessarily mean you get seen straight away. So their thinking is very much removed from the reality and state of NHS which you would think they would understand!
hi my mum had PSP and we got CHC. This was around 2012/2013. We got advised by a care home staff nurse to apply. We did not have a clue about any of this at the time.
My mum was just going into care around this time so I think this helped. It was a struggle and to be honest I cannot fully remember everything.
Keep trying is all I can advise.
We got CHC and it was vital for her that we did.
She had 12 hour 1:1 care and eventually 24hr 1:1 care while in the care home. Without CHC she would not have survived. She suffered many falls and fractures even with 1:1 care.
You have definitely not failed your dad but I can absolutely empathise with your frustration and dismay. We are going through the same process with our mum and our experience is very similar. Our meeting was halted after nearly 3 hours as they said mum was not medically optimised and they would not discuss further until we work with the GP to try other drugs for the delusions (mum is on about 8 meds for the symptoms of PSP). I find it incredible they assess by Teams and do not take the time out to visit the home and applicant and assess real life. It’s a very upsetting process where you feel you are being challenged on the reality of a cruel and nasty disease. My mum can’t think or do anything for herself and needs 24/7 medical and health care. Beacon offer an hour free consultation but charge about £10k to take on a case so we parked that idea. We will just keep persevering. I hope it comes together for you.
Put in an appeal immediately and demand a face to face assessment. Our first assessment was via teams and it removed the assessors from the reality. Our second and successful assessment was face to face with the outcome backdated to the date of the first assessment, get input from local surgery, OT , social worker and carers. You have to 'big up' the situation for them to realise what a terrible condition this is. Good luck, remember, "the squeaky wheel gets the grease"
Are you talking about an assessment regarding community healthcare? If so I’ve had the same myself. I have been in touch with the department of working pensions to see if I’m eligible for PIP but I’m eligible for the ordinary PIP but not the mobility part of it. crucial that I have the mobility part because I no longer drive.
I have CBD and it’s a minefield out there with the healthcare professionals do not feel guilty. You’ve done the best for your dad. In the circumstances you should be proud of yourself.
They are referring to Continuing Health Care, when you have an illness which causes issues due to health rather than social care, the NHS should pay for the care. Unlike social care this isn’t means tested but is hard to get in some areas and does depend on the stage of the illness.
Just to say, have you looked into attendance allowance?
Citizens Advice provide some clear info on PIP and the mobility component. Not being able to drive is not a criterion. But if you struggle to walk without a stick or rollator then you maybe eligible citizensadvice.org.uk/benef....
Thanks very much I’m constantly in touch with citizens advice about PIP I have the basic standard allowance but not mobility part it’s a minefield I had to send my drivers licence back to DVLA I’m falling a More at the moment as well so I found it difficult to get around. I’ve had my confidence knocked as well because I’ve been falling so much recently. I don’t know where to turn for help to be truthful Community. Neuro Rehab Team. or social services and haven’t got a clue to be truthful, it’s like a minefield as I said earlier any support would be helpful for anybody at all. Thank you very much.
I’m sorry to hear that, it’s so frustrating isn’t it. If you are starting to fall then I’m afraid you really need to start using an aid like a rollator (which is really horrid I know) and that will help to prove that you need an aid for safe walking. As you have CBD you may be unable to use both hands to hold on to railings to get on a bus without someone to help, that would be something to put in your claim. Keep a record of when and where you have fallen too to show an assessor. Unfortunately with all these assessments you need to have evidence, like written records of falls and showing that you have a well-used rollator. You also have to be making lots of use of the services that you want paid for. Same with CHC. They won’t pay CHC unless you already have lots of NHS people providing services for you. None of these things are provided to help you get the help you need - you have to make it happen and pay upfront!!
Attendance Allowance is only for people over state pension age which I guess you aren’t yet if you are getting PIP. It’s not based on whether your husband is working or not, or what family income you have. It is solely based on being state pension age and meeting the illness/disability criteria. Anyone on PIP would move to Attendance Allowance at state pension age.
W hat a distressing assessment but expected from CHCteams -i would share this with your MP and the nursing director of the locality (cant remember what they are called now).Make as much noise as you can .I am still seeking redress after 4 years of letter writing .Next in line is NHS England who have dodged answers as did the LRP ,IRP AND the ombudsman .We need to keep pushing for patients with severely debilitating progressive conditions . CHC teams are bent on denying funding from my experience .
I'm so sorry you are going through this. It is so hard to get CHC funding as the so called 'professional people' have very little knowledge of this awful disease.We have now been successful in getting funding but not without a fight & three attempts.
All I can say is, as much as its hard to do, you must not give up.
Gather as much information as you can, get letters & reports from all the doctors & consultants that you have seen. Always use the worst days & emphasis how bad it is. It is a medical need & not a social need. Get information from PSPA to help you.
The information people have given you on here is really good.
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