Hi all - daughter of fairly new member, Welsh Rugby here! Thanks to all of you who have welcomed my dad into the fold and for the advice he's received to date. Mum is currently in hospital following a fall a couple of weeks ago where she cut her head open. She was eventually diagnosed with PSP six months ago after years of tests for dementia, Parkinson's etc but we're pretty sure that she's had it for a number of years and she has undoubtedly declined significantly over the past few months - barely able to communicate, unable to stand or sit without falling over, no movement in her eyes, repeat UTIs, disrupted sleep patterns, signs of dementia and changes in behaviour, problems with swallowing etc etc. We're waiting for a Discharge Assessment and a decision about whether or not she is eligible to be referred for a Continuing Healthcare Assessment. Although she's been in hospital for over two weeks, we haven't seen the consultant she's currently under and the only feedback we've had has been from the Discharge Liaison Team. The situation isn't helped by the fact that I live three hours' drive away so I'm only managing to get down to South Wales every couple of weeks. I've sent the Discharge Liaison Team the PSPA guidance notes for health and social care professionals and requested that in addition to the 'nursing' assessment they're carrying out, her condition is also taken into account. Since her diagnosis she hasn't seen her 'PSP consultant' (who, incidentally, is a Parkinson's specialist and doesn't seem to have had much, if any, experience of PSP) ... in fact, I had to step in early this year to ask that a Multidisciplinary team was put in place to help my father who was struggling to cope and, understandably, felt completely abandoned by the system. We've now heard that the 'PSP/Parkinsons' consultant' has been asked for his opinion on Mum's current status but has based his opinion on the last time he saw my mother two weeks' shy of six months ago. Unsurprisingly, he's saying that her cognitive processes are fine and that she doesn't quality for CHC. I would argue that her cognitive processes were severely impaired at that time and even more so now and how on earth is he allowed to give an opinion on someone he's not see for so long? So, a few of questions if anyone can help ... bearing in mind that all CCGs have different criteria, at what stage of the PSP process have other people been able to get CHC? How severe have symptoms been and has an expert on the condition been included in the assessment process? And is it me or is it unacceptable that a consultant can give an opinion in this process without having carried out a proper assessment? Sorry, this has turned into a bit of a rambly post but if anyone has any advice/tips it would be gratefully received. Love to all of you out there dealing with this horrible disease and the vagaries of the NHS!
Advice needed for forthcoming CHC Assessment - PSP Association
Advice needed for forthcoming CHC Assessment
This is an old post by Kevin_1. It covers a lot of things CHC related.
healthunlocked.com/psp/post....
Thanks for this - in the process of going through and taking copious notes! x
Sorry to hear about your mum - We are going through the CHC process again and this is a quick round up of my knowledge to date - but follow Kevin he has lots of advice and knows more than me. We didn’t get CHC first time for my dad despite him being in a wheelchair, unable to hold cutlery, needing support reaching the toilet, low communication skills etc. My understanding of the whole process is that its a high threshold for the patient to meet to get CHC and the key cornerstone is that the patient needs are medical rather than social care and therefore more than a local authority can legally provide. I’ve just had an in-depth conversation with an advisor at Beacon which is free for up to 90 mins. They also have some good documents on their website. This might be worth investigating as it doesn’t make sense that a condition that changes so much in 6 months is relying on a consultants old review.
If you download the decision support tool - just google with the 12 criteria’s they are scored on its a good exercise for you/ your dad to do your own scoring you can then use this during the CHC review .
We have a letter of support from our consultant (Parkinson specialist btw) we also have a Parkinson’s nurse who supports us regularly and will attend our review - as no such thing as PSP specialists in Kent.
Good luck, it’s a minefield.
Hi there Halftimeoranges - many, many thanks for coming back to me. We've been through the criteria on the decision support tool but I think the challenge will come down to their interpretation of need as opposed to ours - sigh. The referral to Beacon is really helpful - there's a backlog of a week for the free advice because of demand (how depressing is it that so many people are having to go through this torturous process?!) but the information on their site is providing a good basis for our approach and seems a bit more 'honest' than some of the other online 'advisors' in this area. The lack of PSP specialists across the country seems to be a depressingly recurring theme but it seems like your Parkinson's team have things in hand so fingers crossed you should get a better outcome this time. I think Mum is the first PSP patient her 'specialist' has seen and, as I said before, has only seen her once at diagnosis. The Parkinson's nurse who is supposed to be supporting my mum, although very nice, is saying that she can't get involved because my mother is now under the care of the hospital she's currently in. Words fail me! Ah, well onwards and upwards as they say ... In the meantime, wishing you lots and lots of luck with your next assessment xxx
Really feel for you in this situation. Mum used to live 3 hours away from us on her own and had lots of falls which ended up with hospital stays, who then wouldn't tell me anything about her condition due to data protection!! Dealing with hospitals when close isn't easy, when you are hours away it is very difficult.
Can you get to talk to the Consultant yourself over the phone, ring his secretary and ask to talk to him, explain the changes you have seen in your Mum over the last six months and see if he will go and see her on the ward or review his comments. If not make it clear to the CHC how old the comments are and that as it's a progressive disease (clue in the name) things have changed significantly since then.
I took the guidance notes you mentioned and highlighted every single area/symptom Mum showed. There was a lot of pink !
We failed a CHC assessments when Mum could still self mobilise but fell every time she did, cognition was impaired, speech was quiet but still distinct, eye movement restricted (equivalent of looking through a letterbox), ability to feed herself poor as couldn't find food or mouth, several choking episodes a week.
Beginning of year we got fast track funding, now Mum can't mobilise, uses a returner for transfers, some days can't speak, other days speech is impossible to understand, has lost a lot of weight, needs feeding, has a soft pureed diet, takes an hour to eat a very small meal, has dietary supplement drinks to help, choking daily, eye sight as poor and now doesn't blink so dry eyes a real problem, has toileting problems, can be very rigid, struggles to bend to sit, or bent very much to one side & can't straighten, totally reliant on carers, often confused.
The Community Matron put the submission in for us and drew on inputs from the Dietician, SALT, OT, Physio, not to my knowledge the Neurology team who see Mum far too infrequently and know too little of the condition on a daily basis to have much useful input. We have a review coming up early June, the CM is confident we won't have any problems but I don't think you can ever tell with these people.
As an aside Mum had constant UTIs and after several bouts of antibiotics which cleared it up for it to return shortly after, she was put on a low does for 3 months. This really sorted the problem for us.
See I can ramble just as well as you! Wish you and your family luck with dealing with our broken system. Keep posting, asking questions & letting us know how you get on. A
Hi AJK2001 - lovely to meet a fellow rambler! Thanks so much for posting a response and for all the useful information. I think we're probably at the stage you were when you first went through the process ... although it's so hard to compare when symptoms not only vary from person to person but fluctuate from day to day and occur in different orders with different severity. Mum can barely communicate but will answer 'yes' if asked a leading question, regardless of whether or not that's the right answer - not helpful at all when a doctor is asking if she's feeling ok, can she feed herself, can she use the toilet etc, etc - she can't sit or stand without falling over, her eyes are 'fixed'. She can just about get food/drink to her mouth (when she does eat) but she has problems with swallowing and coughs a lot. That said, she also has some of the symptoms you mention your mum got when she got fast track funding - barely eats, she's lost loads of weight, she's confused and emotional (alternates between laughing, crying and getting really angry), is semi-incontinent etc, etc ... all of this with no carers apart from my dad who's 80 in a few months' time - Dad, if you're reading this, yes we know you're fit and healthy and look 20 years younger than you really are 
! I'm going to follow your advice and contact her 'consultant' - he's based at a different hospital so not sure how easy it would be for him to pay her a visit or, indeed, whether he'd be up for doing so but definitely worth a punt. The comment about your Community Matron is interesting too ... when I asked for a MDT to be put in place, Mum was placed under the local Community Response Team but when I spoke to them this week I was told that she had been signed off as 'speech was no longer an effective means of communication', 'physio no longer practical' and the occupational side of things had been covered by the provision of a wheelchair, zimmer frame, bath hoist. She is, however, apparently under the care of the local Frailty team although I'm not aware that anyone from there has been ever been in touch and what this means in practice - probably another lead to follow up. Aaargh!!! Thanks again for your advice, it really has been invaluable and keeping everything crossed that your review in June goes to plan. Likewise, keep us posted on how you get on. C xxx PS There's a lot of fluorescent green on my PSPA CHC Guidance notes!
Another route to try maybe the PALS team at the hospital. I have found them useful in the past for various things from poor care in hospital to appointments which were too early for Mum to get to. If not now, worth keeping in mind for I'm afraid a future eventuality.
Aghast at your Mum being "signed off". She has a progressive condition so her needs will change. SALT team should not just be about speech but also assessing her swallow & advising on the type of diet she needs - thickened drinks, pureed food etc. OT will need to do regular reviews as her mobility will decrease - we have moved from walkers and perch stools to wheelchair and commode to shower chair and turn aids and an electric bed, hoists may be something we need in the future. If she is losing weight a Dietician should be involved.
Even if you don't get CHC funding it sounds like your Dad needs help and maybe you should look at funding some care. You can start from as little as a couple of mornings a week to help with showering and step up as needed but this may also give you another route to help, the care agency Mum has have rung me on a couple of occasions to say the carers are struggling and am I ok with them asking for an OT review. They appear to get someone in quicker than a referral from the GP !
Keep on battling, don't let the system beat you - sometimes I think that's half the point. I hope you find someone who gives you the support you need and helps co-ordinate everyone, I think I am only sane due to our Community Matron. Hearing your story makes me see how lucky we are in that we have our CM and real support from SALT, Dietician, Physio & OT.
Hi A - thanks for the feedback - again, some really helpful pointers. Things starting to move forward - Discharge Assessment has been set for 5 June and Discharge Nurse, so far(!), appears to be on side ... not so much the Parkinson's consultant who appears to have based his assessment on when he saw Mum back in December - hmm! Think we'll face a few challenges on the day but trying to be as prepared as possible. I've spoken to a contact at an English CCG (Wales has Health Boards rather than CCGs) and now have a better idea of of the level of 'infirmity' at which they start to be more sympathetic towards CHC (unsurprisingly, it's pretty high - a feeding tube might not be considered a severe need because carers can be taught how to administer one at home!). Suspect we may be a little way off in some areas but there in others so we'll see how that pans out. Interestingly, they did suggest going through the process anyway so that you have a base to work from and are better prepared for the next assessment. My guess is that, at this stage, we may be eligible for some contribution towards nursing care but will need to look at funding the rest so next step is to work out where best that can happen.
I'm off to Wales at the weekend just to spend some time with Mum and, as you suggest, will try and have a word with PALS then. Mum's had a couple of falls in hospital now when she's been left on her own, despite instructions that she can't be, and is still waiting for results of a second UTI test (four days now) so need to make sure we're on top of that.
Hope all ok your end - onwards and upwards as they say!
C x
We need to keep our fingers crossed for each other, our review is 6th June. The hospitals drive me mad, Mum had a heart attack a couple of years ago and was in for observation, she rolled over in the night and fell out of bed because there were no bed rails up because their risk assessment said she would be more risk if they were up and tried to climb out - quite how they thought Mum was mobile enough to climb out I don't know, anyway she had a displaced fracture to her upper arm and spent 6 months in a Nursing Home recovering but obviously never got back to where she'd been. I did complain but not until months after which was a mistake, I should have done it there & then but it was the week before Christmas and it was just generally a bad time, so if you can find the energy make a complaint whilst it is still fresh in everyone's minds. It's not nice having to complain but it's not right that someone should be falling in hospital !
If you are driving to Wales take care and concentrate on your driving. Hope you have as good a weekend as you can in the circumstances. A
Hi there - just wanted to drop you a line to say that I'll be thinking about you and your mum today and keeping my fingers crossed that the review goes well. Let me know how you get on.
We had mum's discharge assessment yesterday. Very touchy to begin with (consultant, discharge nurse and social worker tried to tell us that mum's cognition was still in tact until I showed them some film I'd taken of us trying to have a conversation with her) but they seemed to change tack when they realised that my dad, brother and I weren't going to back down. They've all agreed that Mum needs one to one nursing care and that this will be best served in a nursing home but the finer details will be decided at the CHC in two weeks' time. Stressful day but glad the process is at least underway. In South Wales for a couple more days to spend some time with Mum and have a look at nursing homes. My Cardiff accent will be returning in no time!
Big hug
C
Glad to hear that you are making progress, be as well prepared as you were for the discharge review and hopefully it will all go smoothly. Good luck with the Nursing Home search, hopefully there are some good ones you can choose between.
I was dreading the review yesterday, our Community Matron came to give me support and prepped me that we may have to have some difficult conversations about end of life care but in the end it all went smoothly. I was prepared to go through each of the areas individually but started with nutrition as the CM had told me needing to be fed was a nursing need, we went through mobility, then I asked if she wanted to go through each area and she said no, "I just need to know what's change from when your Mum was fast tracked to make sure the care you are getting is sufficient, I'm not going to take the money away from you, it's about making sure it's sufficient". I was so relieved I almost burst into tears. They are going to do 3 monthly reviews but they will be about making sure the right care is in place not as to whether Mum needs it of not. It is such a weight off my mind.
The funniest thing was Mum has sat there very quietly throughout and when the assessor had gone she asked me when was the person coming to do the assessment, I said she'd just had it and she was mortified as she hadn't been looking pathetic enough and she'd been planning to play up her role !!!! After everything she goes through she is still a star!
Let me know how things go with you. A
That's such good news and must be a massive relief. Hopefully it will provide some comfort and reassurance for your mum too. Isn't it weird but so nice that in spite of everything they're still there underneath it all? Tuesday and Wednesday I couldn't understand anything that Mum said at all but yesterday she managed to snap at my dad that it was alright for him to tell her not to worry about a nursing home! Well, I say that, her words weren't quite as clear as that but the words she did manage to find and the way she delivered them left us in no doubt! We also agreed that once we'd found a nice nursing home we'd have a few film afternoons watching some of her old favourites and she tried to hum the music from Zulu!
So, onwards and upwards. Not feeling very confident about the CHC - but at least we'll know what to expect.
Will be in touch x
Hi how are things going? How's your Mum doing? Have you found a nice nursing home? Have you had the CHC review? Hope things are settling down a bit. though there always seems to be some new challenge.
Take care.
Alison
Hey there - been meaning to do an update post for the past couple of days but it's been a bit of a week! Had the CHC meeting on Wednesday ... my husband, who's a forensic accountant, has lots of experience of litigation, is a trained mediator and a PHD in Medicinal Chemistry so it made sense for him to help put our case together and come along as our advocate. It literally took weeks to prepare but it definitely stood us in good stead as the MDT was out in force - eight of them to our four. We knew it was going to be tough - meeting lasted the best part of four hours but he managed to take charge and pick them up on their process as they went along. Obviously, they all gave a lower mark for each of the domains than we had but we did manage to move the consultant to a 'high' on two sections (time will tell whether they keep to that when it's actually submitted to the Health Board for final decision) and they are well aware that we know the legalities of granting eligibility better than they do. At the end they indicated that it will probably be a 'no' at this stage but did say that Mum will definitely be eligible in the not too distant future. They also said that if she doesn't get CHC she is eligible for 24 hour nursing care - still don't get how the need for 24 hour nursing care doesn't constitute a primary health need?! They're also aware that we will appeal and litigate if they refuse at this stage so we may get a no but review in three months' time. So now it's just a case of sitting back and waiting. I feel physically drained - didn't sleep very well at all on Sunday, Monday or Tuesday nights - and had a really distressing visit with Mum yesterday when she was desperately trying to tell us something but couldn't find the words. I asked her if she could tell Dad tomorrow what she was trying to say and she very quietly mumbled 'it will be too late'. Her last words to me were 'good riddance'. I don't think she meant it and they were probably just the only words she could think of to say goodbye but all the way home in the car today I kept thinking what if that's the last thing she ever says to me. On a brighter note, we've been to see three homes. The one we really liked (small, privately owned and not too far from where my dad lives) doesn't have any rooms at the moment but they've said they'll put us at the top of the list and it's unlikely that Mum will be ready to leave hospital for a couple of weeks at the earliest so I'm keeping my fingers crossed that it pans out. The other two homes had their advantages but one was a bit clinical and the other, although best for nursing care, was eye-wateringly expensive. Anyway, back home now and looking forward to a very large G&T! Hope everything as ok as it can be your end? Hopefully, in spite of all the other ups and downs, there's a little bit of relief now that you know that funding is secure. Have a lovely weekend and keep in touch. Cathy x
Well done. You deserve a medal.
Don't worry about your mother's last words. I remember how I felt when I couldn't understand Chris. He would often say words he didn't mean.
Enjoy your G&T.
Love Jean xx
Thanks Jean, it's good to know we're not the only ones. G&T currently going down very well in spite of everything! Have a great weekend x
Thanks. I'm drinking too.
Cheers !
Enjoy the present.
Love Jean xx
Gosh think you deserve that G&T, what a week. Mum has trouble with her words as well, must be so frustrating for them, sometimes we get there and sometimes we just have to leave it - she recently asked for cream cheese with cocoa cola sauce for tea - worked out she meant crème caramel, so I am pretty certain your Mum was just getting her words muddled, she got the good bit but couldn't find the right word to go with it. I often ask Mum if she meant to say something & she will say no, it just came out.
The qualifying for nursing care, is this where they give you some money towards a nursing home? I remember Mum qualified for this when we had our first CHC meeting but it was only if you were in a home you got the money, think it was about £150 a week.
We had a meeting with Mum's carers this week as there have been a few issues, hopefully we will see things improve, otherwise I will have to look at changing agencies. It's been a busy week with appointments, so hoping the weather is good over the weekend and we can get out for some fresh air & relax (?) a bit.
Fingers crossed on your nursing home choice.
Alison
Yep, we'll get the grand total of £167.73 (there or thereabouts!) towards nursing care once Mum's in a home. Received an email from the Discharge Liaison Nurse on Friday night summing up the assessment meeting and saying that they won't be recommending CHC which is what we expected but, based on the consultant saying that the decision was marginal, I had expected a recommendation that it would be reviewed in three months' time. Goes to the Health Board (Welsh equivalent of CCG) this week I think so gearing up for appeal process ... and breathe!!!
Loving cream cheese and coca cola sauce! That sums up creme caramel perfectly ... and I'll think of it every time I have one from now on I think the loss of words for Mum is the hardest and most frustrating thing. She'll suddenly come out with a 'supercilious' or 'obliterate' or 'hallelujah' but often we can't relate it to anything. Actually, that's not strictly true, the 'obliterate' was an instruction to turn the television off!
Hope you manage to get the issues with the carers sorted and that you managed to get some fresh air at the weekend. Speak soon x
Welcome to the mad bad world of CHC ! My previous posts will tell of the ongoing problems we had (and are still ongoing). My husband died a year ago and I am still waiting to hear if we are being `granted` an IRP hearing.
Contact Beacon, a free NHS sponsored help line (free for 3 ? hours advice). Also contact your community matron, or District nurse, GP, the SALT, OT, home care company and anyone who has any involvement in your Mum`s care for their support.
Care to be different website is dedicated to getting CHC, so well worth a few hours of your time.
Good luck and stay strong - fight your Mum`s corner.
x
Hi there NanBabs and many thanks for the warm welcome! Have had a read through your previous posts and I'm so sorry that you lost your husband last year. Your ongoing support and eloquence comes through in every post and has highlighted just how strong and resilient we can be despite the ups and downs of this horrible journey ... so a big thanks for that too. We're just starting out on this process - Mum has clearly been ill for many years but was only diagnosed six months ago. A support team of sorts was put in place at my instigation (why this hasn't been done as a matter of course on diagnosis is beyond me) but, like all things related to the NHS, trying to work out who's doing what, who has overall responsibility, who is willing to offer help is bringing a whole new host of challenges. The Community Resource team, which comprises speech and occupational therapy and physio, have apparently signed Mum off because 'speech is no longer an effective means of communication', 'physio no longer practical' and she's been given a selection of equipment to deal with mobility issues so that means that's effectively signed off too. Typically, her contact nurse in the CRT is no longer there and all they can tell me is that Mum still has an open referral under the Frailty Team. I've spent hours this week just trying to get this far! Work (fortunately I freelance) has had to take a back seat and I don't think I've ever been so grateful for a glass of wine at the end of each day! I'm gathering all the information I can (Care to be Different and Beacon included) and trying to pull our case together from there so I'll keep fighting the fight. Thanks for your support and, whilst I'm horrified that you've been put into this position, I really hope you get the opportunity for an IRP hearing. Much love C x
It's me again. Mary had her application fast tracked when the Assessor took one look at her and tried to shake her hand to introduce himself. She could not speak, was stiff as rigor mortise, gripped his hand in a vice like grip. The "home team", (OT, District Matron, physiotherapist and the report from the social services and Mary's GP) convinced him. I also stressed the fact that I am a high risk patient (having had open heart surgery). Your Dad must NOT say he can cope with his wife's MEDICAL condition which will require him to administer various drugs as her symptoms progress. Best of luck. Rob
Hi
I’ve been reading your posts and my heart goes out to you
I lost my other half a year ago and my favourite word for these people was muppets unfortunately they don’t know much about psp so me having a gob on me educated them
If they are having a discharge assessment on your mum tell them to take a hike cause she cannot be discharged without any help
So tell them she’s staying till things get sorted
Get the hospital social worker who should help and guide you and hospital Matron and community help that you get and a full blown meeting at the hospital and even a meeting with a chc person
I’m sorry if I spoke out of turn but I hate it when they think they know best when they don’t know the illness (they need to come on the site and ask us )
I hope things are sorted for you and take care of yourselves too
Hugs
Sue x
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