As I've mentioned before, we've reached the stage where my husband's care needs are getting complex, and we feel it would be appropriate for the NHS to provide Continuing Health Care (CHC).
The senior district nurse came out in mid-April and did our checklist with "A" in Behaviour and Mobility and 3 or 4 "B"s i.e. a positive checklist.
In June, a social care representative was appointed and came out asking many of the same questions and getting to understand our situation.
Today, they came together, forming the multi disciplinary team (MDT) and using the Decision Support Tool (DST) to document the care needs. Then they went away to discuss and agree their recommendation for the Integrated Care Board (ICB).
Since they both had talked to us recently, we focused on recent changes and evidence of the latest falls, injuries, weight loss, behavioural episodes, episodes of "altered consciousness", and the complications around managing his medication and relieving various pains.
During the meeting, our neurophysio "happened" to arrive for my husband's regular Friday session so we made sure they talked to her too.
When the Decision Support Tool was completed we had "High" needs in Mobility, Cognition and Behaviours, with "Moderate" needs in 7 other domains and one "Low" need.
We received a phone call a few hours later, letting us know that the recommendation would be that my husband was eligible for CHC. The main basis was his fall risk and that he could not be left alone. They had emphasized that if support (i.e. me or other carers) were not in place, he would almost certainly come to harm and require emergency care.
Now we still need to wait for the ICB to give their final decision, but it looks promising.
Good luck to any of you going through this process 🍀✅✅✅
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Bergenser
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well done and pleased it is looking positive for you.
You have provided lots of detail which I will certainly benefit from when making our application and I am sure will help others too.
Do you pay privately for your neurophysio. I asked the physio who is helping my husband whilst he is in rehabilitation following a recent hospital admission if I should be engaging a neuro physio when he gets home. She said if we are able to do the exercises ourselves there would be no need. I don’t really understand what the difference is in terms of service between an ordinary physio and a neurophysio.
Regarding neurophysio. There has been different phases:1) When G was first diagnosed June 2021 this was through a private clinic (medical insurance through work) he also got referred for 10 sessions of neurophysio. At this time he had to travel an hour to get to the session, he was assessed and given a lot of exercises he could continue doing - and he was able to do these independently.
One particular useful one was the "clock yourself" mobile app which trains the brain-body connection and balance. Worth the small upfront payment.
2) The private sessions came to an end. A few months later the community physio came out, reviewed his exercises and told him to continue some of them (she stopped the ones that took him off balance)
3) After a fall and heel fracture autumn 2022, G was referred to hospital physio to get back to walking. He had 5 sessions - but in parallel we started using a privately funded neuro physio - she did home visits, and she had a much stronger understanding of how brain and body works together with a neuro degenerative condition - she also had previous experience with PSP patients. We found her intervention complemented the hospital physio - and decided to continue when the hospital discharged G from the physio clinic. G was given exercises he could do independently or with my help, but these were never as challenging as the ones the neurophysio did with him in person. When she was stopping her private practice she found us a brilliant replacement and facilitated the handover.
4) We now have two weekly sessions. The agreed objectives are fall prevention and maintaining mobility. The actual content of each session is adapted based on Gs form on the day - and any new symptoms, problems or falls are unpacked so that we can achieve those objectives.
Now, most sessions she works with our paid carer (privately funded, hopefully NHS will allow us to retain her when they take over funding 🤞).
The carer is learning how to support the exercises, use a gait belt, and perform stretches and breathing exercises. Many exercises require two people as it is necessary to challenge his balance and teach him to recover from a momentary loss of balance. I still see massive benefit from the sessions and G remains motivated and looks forward to his physio.
So I would say there is a difference and I think G would have lost his mobility a year ago without the ongoing support and challenge. 🌻🍀
Thank you that is really valuable information to have. Obviously cost might be the deciding factor for us but I will definitely explore what is available in our area.
Whether you have an ordinary or a neuro-physio for a PSP person, unfortunately physiotherapy doesn't help with the main symptoms of PSP. Sooner or later, PSP people require a wheelchair... although physiotherapy may provide psychological benefits to both the the PSP people and their caregivers. Best wishes
You are right that the physio is no "cure" however I see significant value in staving off some symptoms and keeping core strength and muscle tone for longer. To my understanding , good neurophysio helps the brain use its plasticity to create new pathways when PSP damages the existing ones - I'm not aware of any other therapies that can prolong the "good" phases of PSP so I feel strongly about this one 🌞. I understand it doesn't help everyone - and the patient needs to have motivation and the ability to follow instructions (or at least try). Wishing you all the best. 🫂🌻
About time, the NHS CHC panels need to get a grip of those illnesses and stop putting our loved ones and mainly us their carers through hoops of justification.
It would be better if they just went yup PSP/CBD horrible and don’t improve so here’s the care needed. The assessment should only be on the level of care needed rather than if it’s needed.
Well done for keeping going with this, it’s a bitter sweet moment.
That's brilliant news such a relief. We had Community Matron a Social Worker, CPN and carer with myself and our son. It's vital to have those professionals involved who are in support of the application x
Excllent useful comments, Bergenser. Thanks for the navvigation! I am getting closer to some of those itens (with PSP past 6 years) and wanto guide myself in good dirction, ...... of course with partner/ carer's help. TimbowPSP
I got the letter today confirming that the Integrated Care Board for Hertfordshire and West Essex have agreed with Multi Disciplinary Team on all parts of their recommendation. Next week I've got the appointment with the Personal Health Budget team to discuss detailed plans. I am getting quite optimistic that this will make a real difference and that I can soon shift my focus to the important things. I'm thankful to everyone on this forum for the support and advice. 🌻🌞
That's excellent news Bergenser. Will continue to keep my fingers crossed for you and hubby.I do find the whole funding situation tragic though. As a former carer I know just how hard it is to get the help you need, and the demands the local authorities impose on you being either form filling, assessments, meetings etc, feeling that you have to justify your needs for asking is just too much stress on top of the obvious stresses and anxieties that come with looking after your loved one 24/7. As Kelmisty says, why can't they just say ok, PSP/CBD, no cure, here you are. I wonder if MND patients and carers have the same hoops to jump through ?
Fortunately you are a strong, competent woman and are coping with all these additional stresses, as well as continuing to work I understand. I'm in awe of you Bergenser. G is so fortunate to have you fighting his corner.
But sadly there are many carers who just wouldn't have the wherewithal to navigate the system. If the Health authorities really cared about people's health (physically and mentally) why do they make everything so difficult ? Yes, I know, it's all about money and people abusing the system , but it seems so unfair when the need is so necessary.
Keep fighting the good fight and keep looking after yourself. xx 💟
great news for you! We hope to go down that path soon as my wife is deteriorating . Social services did not give us the information regarding chc so we just agreed to the care package offered!!!
I am so pleased that it is going well for you. My husband’s situation is, I think, very similar to yours and we had a positive check list. We had the CHC meeting on 4th July but the assessor would not tell me what her recommendation would be. I am now waiting to hear the outcome but was told that it could take 28 days.
I appreciate you posting your experience and I will keep my fingers crossed for you.
Hoping for a positive decision for you also. Did they tell you how they graded each domain? They wouldn't give us a copy of the DST but they let us photograph the matrix
Thank you for your response. I had done my own grading for each domain. The assessor agreed with some and downgraded others so I know , I think, what the grade for each section is. However, I don’t know how they use those grades to come to a final decision. The assessor kept saying that we shouldn’t get hung up on the grades and that they look at the whole situation. I prepared as well as I could for the meeting but I feel very anxious. My husband is currently in a nursing home for respite , following a horrific fall and head injury, while we get a care package in place at home and some additional aids from the occupational therapist. The nursing home is not his natural environment and, as he has nowhere to go, he doesn’t seem to be trying to get up as often. Also the staff do not know him and his behaviour in the same way that I do after caring for him for 3+ years. I will send you a copy of the agreed grades when I get a moment.
I am resigning myself that we won’t get it. I also think that Essex will refuse to give us support either due to mum’s sale of house last year (transferred money to us for building work and mortgage). Here we go back to doing all the care ourselves again - refuse to pay two carers to come in for 5 mins , we can do most of that ourselves. Bring on the stress😬
The problem you have there is you’ve used your Mums money for something other than her, if social care do an assessment they will do a financial assessment and if her money has been given away in the last 7 years they can ask for the person who received it to pay for the care.
I think it is 3 they ask about - 7 years is for inheritance tax taper, completely different. Yes I know we are resigned to it but it is what she wanted.
I would also assume that they then deem the money that has been given away to still be hers and take this into account when working out her contribution- which becomes the full cost of carers. It will always be that she has to pay, they cannot then look at recipients of her money, that is not in their remit.
Yeah so basically if she’s given you £50k for example, they can say that that £50k should be paid for her care. The Council can ask the receipt to pay the difference if significant. If you used it to adapt your house for your Mum to live there you might be able to argue that case (not sure though)
There are lots of rules and it’s complicated but this page helps explain the basics
I’ve been looking into it with Mum, but basically if it’s been given away in large sums since her diagnosis then the council can use that as part of the financial assessment and ask for it to be contributed towards her care.
The system is so complicated!
Oh and it’s not time limited so if it was after your mums diagnosis’ they could say she knew she needed the care in the future.
I am basically assuming we are paying privately for her care after the CHC assessment if she doesn’t get it. I agree they will include it in her finance assessment so we will just go back to how we were before her hospital admission. She has been on a rehabilitation package until now as they have been so behind with all their paper work and visits.
Not going to pay to have Essex arrange for carers to come to in when we can do it ourselves. Will probably just pay for carers in morning for 5 days a week.
Just drives me mad that all mum’s issues are due to CBD- it is not that she just wants a looked after life in a care home, she cannot do anything for herself.
Mum always said that people she used to work with didn’t bother saving as the state would take care of them. She was so right, those that scrimp and save get no support, those that spend it all get everything paid for- so wrong
That is really disappointing, particularly given a situation where he's being sent home from nursing care 🥺 I would be interested in hearing about an appeal or re-assesment - or comparing notes once we get our results.
Thank you. I sent you a copy of the grading of the different domains but I’m not sure if you got it. If not, I will resend it. It did not look dissimilar to yours but we had severe in the behaviour domain. I don’t know if the assessor changed this after the meeting. I haven’t had the paperwork yet but when I asked her what her recommendation was, she said that she had recommended that my husband wasn’t eligible. Her reasoning was that he wasn’t displaying the impulsive and risky behaviour in the nursing home (where he has access to both nurses and carers 24 hours a day). This in spite of the fact that this behaviour led him to be admitted to hospital in the first place with a full layer gash on his head, requiring 12-14 stitches , in the first place. I feel that I should appeal and I will keep in touch and update you.
My dad was too it is a shocking system cannot understand how somebody who cannot walk, struggles to eat and is suffering mentally with a horrendous neurological disease can be refused chc funding 😠
I have been trying to find out exactly how a ‘primary healthcare need’ is defined. I went onto the ‘care to be different’ website. They provide a link to an excellent video which explains the law in very clear terms. I will definitely be appealing now as I believe that the assessor has made decisions that are wrong. The website and video are definitely worth looking at if you intend to appeal.
mum was awarded CHC last October and we still haven’t received the funds. They have said it will be backdated to October but I’m not betting on that. Part of the reason is that we changed from CHC to PHB as we wanted to use the self-employed carers we already had in place but also there were no agencies who had the staff to support mum. Then the ICB kept coming back with additional questions (often asking for the same thing repeatedly) and hoops we had to jump through. We are hoping to get news of the funds going into mum’s accounts today but, again, I’m not betting on it. My feeling is that they delay as long as possible to reduce the costs (ie in the hop that the person will die) but let’s see. Just keep positive, be really on top of all your finances with everything written down and take it one step at a time.
Sorry to hear that they are messing you around; we would also be hoping for a Personal Health Budget and I'm not counting on a quick resolution of the backdated payments - any decision should be backdated to the date a decision was due 28 days after the positive checklist. I'm tracking everything I've had to pay since then. 🌻
That sounds really promising. We have ours next Friday so I hope that they take the same approach. Currently sitting here waiting for a phonecall from Essex Financial Assessment though as they assume we won’t get it 🥲
Our ICB turns out to be Hertfordshire and West Essex, because we are right on the border. Ideally that wouldn't make a difference but I get the impression that maybe it does.
I think we got a negative because it wasn’t complex enough, despite loads of recent falls, her speech becoming more and more incomprehensible and her not having a clue who anyone is or what day it is 😂
Well done to you for keeping the pressure on CHC, it took us 9 months to get it for my wife but the result has been phenomenal. Best Wishes for the rest of your journey
U are a wonderful signpost to keep watching. I am some way behind ur husband, but with an active interest in my future progress, and all the options. Many thanks, and lead on! TimbowPSP
great to hear you are almost there with the decision good luck! My wife is deteriorating now quite quickly so I am at a loss which way to turn for chc funding . We have carers twice a day., good contact with the local hospice, MND specialist nurse , district nurse, speech, dietitians and all the other services but as her husband I don’t know where to start! I know it’s a long frustrating path to travel , I am 86 and not sure I can stand all the extra stress. I only manage to go out shopping a couple of times a week.Sorry for going on , but all advice would be welcome.
We got a positive decision and are now working with the Personal Health Budget team to get the plan fully agreed, budgeted and signed up. There is a lot of admin with the personal health budget, if we had chosen provisioned care it would have arrived sooner, but been less flexible. I assume you want to keep your wife at home if at all possible and the CHC funding should help make that achievable. I would suggest you keep asking ("nagging") whenever you talk to any of the professionals; they should not be leaving it to you to provide all the care. Perhaps even get a GP appointment for yourself saying you are stressed,
The district nurse should be able to initiate the CHC process, and if your wife's condition is progressing rapidly it might even get fast tracked. It isn't meant to cause you extra stress, though they should consult and involve you.
I hope this goes well for you - and quickly. There are more important things to be doing than having to worry about funding. 🫂🌻
many thanks for your reply and advice. Yes I do want to keep my wife at home and I am keeping in contact with as many medical people as I can. I have organised monthly or fortnightly visits with MND specialists and district nurses but am struggling with with the GP. Will keep trying and start the process! Again my thanks.
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