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.
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
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😬
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 🥲
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
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