My husband with advanced stage PSP had an assessment where the DST was completed just before Christmas and the assessor indicated she would recommend him for funding but I know it still needs rubber stamping and I haven’t heard officially due to Christmas breaks. I’m wandering what happens next exactly after they make an official decision to proceed.
My husband is at home and I am his 24/7 carer. He will remain at home. We have 18 hours of privately paid care at the moment a week. No hours or money amounts were discussed at the assessment.
can anyone share their experiences of next steps x
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Sun-flowerwearer
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Hi, if assessor recommended it's highly unlikely the panel won't agree. The guidelines state they should only do this in very exceptional circumstances so hope all goes smoothly for you and you should get telephone call or email / letter to confirm. Next step is a chc case worker / coordinator will contact you. Ours rang to discuss care needs. She initially said they would fund the care I had been paying for to date ( 6 hrs and a day centre attendance) I said that great but is not enough she said shall we extend it to 10 hrs etc I said that's great but it's not enough, I need more day to day cover due to husband can mobilise but is unsafeas falls and I'm 5 ft and 7st v 6ft w and hes 13.5 St she said OK and offered 9 -6 day care with 2 hrs Sunday morning. She then suggested one if the days could be a split shift with 2 hrs am and then an afternoon through evening to give me an evening off I asked if we could change to just a later start noon till 10pm and no care Sunday for now and that's what we have. She said it would be approved. I know I've waffled but wanted to highlight don't just accept what they offer at first, say what you need not just what is initially offered and not just a couple of hrs for personal care. Would longer periods help keep husband safe, provide him with someone to do exercises, play games have conversation all to prevent deterioration of symptoms, isolation and to help with physical movement?. Consider what may help your husband and what may help you. Eg someone with him to keep him safe so you can do all the household stuff you need to, to go out, have a break whilst husband is engaged, perhaps taken out, looked after etc. Do consider that a few hrs at intervals/ set times during the day can be very disruptive and your husbands needs may not fit a routine, also with this you are more likely to get a succession of different people at more fluid times if you have someone for larger chunks of time you are more likely to get more consistency of carer and times adhered to. Think about if you need bedtime routine and night cover especially if you have to get up multiple times a night even if its just a few nights a week to give you some uninterrupted sleep. If you have a good carer or care Co at mo do discuss with case worker as they will advise if they can apply to tender for the work. I mentioned our great carer and case worker recommended to successful co and the gave him job and we have him for most of the hours which is great. One thing once you get the care in place...and it can take quite a few weeks do still keep a diary, ask carer to do too and keep up to date as you will need it when they do the first 3 month review. I believe some areas just do this with phone call to check care working OK and meeting needs but ours want a2 hr meeting with completed family forms and 72 hr diary again on 8th January!!! So that's meant more homework over last few days. I'm sure others will reply with useful info but hope this helps a little and if you want more info don't hesitate to message me HNY Millidog x
Thank you so much for your detailed reply. That’s really helpful and has given me lots to think about. I agree it’s having consistency and the same people so he can feel relaxed and safe when im not there. X
You are very lucky to receive anything my relative has advanced PSPin the Rochdale area and they refused any help mainly i think because we refused residential care -which area are you in ?
We all need to broadcast when funding is agreed and where ie which area so people can compare snd use this as a means to get funding .
Once funding is agreed all care should be funded as it stated in the NSF -national service framework .
And thus should be agreed whether the patient stays at home or is in residential care .In my experience residential is not appropriate for PSP sufferers as they tend to be younger and their needs are complex .
Hi Knitting Annie, I know we are tremendously lucky in gaining funding and its frustrating to read and hear when others are not so fortunate and either dont secure funding or are told different criteria for funding provision ...so I agree whole heartedly with your comments and understand what anger you must feel at the unfairness and I do where I can share what I hope is useful information to helpo others on this site. Whilst we have funding I was contacted only 1 1/2 weeks after care was put in place to arrange the 3 month review and they wanted to do it only a month after care was actioned. On challenging they have moved it by a month but its still going to be a 2 hour meetings to review all the domains, when I know others have a quick phone call and I have had to submit all the forms updated with evidence of last few months! From what I interpret from different posts - different area NHS groups and individual assessors interpret the national guidelines differently and I think many are shady in how much information they sahre and some give incorrect information, I know at our assessment the assessor said a few things that (having studied everything I could about CHC in advance) I challenged and she backed down. Again considering your relatives situation from what I understand if they assess someone and identify a primary healthcare need they then cannot then dictate where that care is provided only in residential care, the framework states that care can be at home. For information we are in WEST DORSET. I believe the assessor we had would make a good poker player but as I say I did so much homework and documented mountains of evidence. I did additionally have help of a brilliant Neuro Nurse and support from many of the health professionals we have sought help from during my husbands journey with PSP. For whats its worth I would advise anyone seeking CHC to keep a daily diary of everything the PSP patient needs and carer does, every appointment, get every health professional you can involved in advance - OT, physio, SALT, eye specialist, Continence Nurse, ask for every bit of equipment thats needed, read evereything on line, read the PSPA CHC guide, look at Care to be Different and Beacon, and google CHC for your NHS region on their procedure and practices on line. You should have to do all this work, its time consuming and very draining but I think can help greatly and perhaps importantly apply when ideally the PSP patient is still mobile so dangerous when falls are a big issue and poor vision, cognition and behaviour makes them unsafe. I think thats enough rambling from me ...Im a tad zoned out froim just finishing compiling my 3 month review evidence to submit in time and PS I come from Rochdale
definitely helps to share i think the professionals in this area are obstructed from helping and when they do it is ignored .I Found NHS ENGLAND and the Ombudsman support each other in denying care -advances PSP sufferers definitely should qualify but somehow Rochdale deny it with the support from the above !
Back again ...just a thought. To clarify they should provide enough support to meet ALL your husbands care needs and are not allowed to discuss finances, caps to funding etc
hi Sun-flower-wearer, we were not allowed to keep our mum’s carers as they were self-employed and the board only approve agency carers. They really pushed us quite aggressively, to get things in place within days so we had to let carers know they might lose the work and also unsettle mum (who has psp) and her partner with the thought of new people. Then the agency who had agreed to take over went to see mum and said they couldn’t do it after all as they didn’t have the staff so we’re now looking at PHB so we can keep the staff we want. All a bit frustrating but hopefully that situation won’t apply to you.
My husband had agency carers but also one self employed carer and she cared for him twice a week for total of three hours. CHC funding was granted for both agency and self-employed but the self employed carer did have to show her up to date qualifications in order for this to be approved. Not sure whether that might help you, our home is in Cheshire East.
Good to know as I have an agency for the 45 minutes morning care visit but I have a freelance registered carer 4 x 2 hours a day and both my husband and I like her a lot so would want to keep her. The agency sends different people each day.
That's interesting. Mum is in Essex and they absolutely wouldn't fund self-employed carers. We're actually now considering moving to agency anyway as need full-time oversight but the issue then is finding an agency who have the staff and availability. It's never-ending!
Hi you mention you have privately funded care at the moment have you ever had a care assessment for your husband and a care assessment for yourself by the local County Council. I am a carer for my wife and initially we had those assessments done which resulted in me getting 3hrs take a break for myself funded by the Council for a certain amount money which I had to top up and some care for my wife which was means tested for her to have carers in initially 3 times a day. I mention this because the Social worker we had suggested we should have more care and to go for CHC funding which we duly got at the second attempt.
Have you got a social worker involved at all as they might suggest that you need 2 carers 4 times a day which is where we are now. If the care you have now is good then try and insist you have the same care people when you get the funding as continuity is very important for the one being cared for. Also you should get funding for take a break hours (2 or 3) included so don't forget to ask for that. I know it's difficult and you feel guilty having a break but as many people have told me I need to keep good care of myself as well.
You may also find that it will be back dated which means you can claim any money back that you have paid out, keep that in mind. I have recently undergone a 3 month review which is also part of the funding, it was actually about 9 months because they are so far behind but that went ok which was a relief as I was a bit worried about the outcome but I was assured by everyone that it would be ok.
Another thing you might find helpful is to get involved with your local Hospice as they are a great help.
It’s all progressed very rapidly for us and so we are navigating the health and social care system as we go. He was only diagnosed in May but progress has been so fast it’s taken me by surprise. I was able to manage looking after my husband on my own up until end of September. He then had two emergency hospital admissions in October and he lost his ability to stand or walk, do anything for himself which obviously changed everything. He was brought home by ambulance on a stretcher transfer to a hospital bed in my lounge in a frail state (I wanted him to be at home) with an emergency care package funded by the NHS but they would only pay for 7 days.
I have not involved Social Services as we have more than £23000 of savings so I assumed we would be obliged to pay for private care anyway. I am awaiting a carers assessment but I only applied a few weeks ago.
Currently we are paying for double handed morning care for 45 minutes to get my husband washed , shaved and dressed (OT assessed he needed 2 carers for movement and handling and 4 x 2 hour day sits so I can get out and run errands… go to shop.. walk dogs etc as he can’t be left on his own at all.
Hospice have been visiting us since September and has been brilliant. Hospice that helped us with our CHC application.
Hi just a little info re carers assessment I applied months before getting chc. They said I would get the carer break which was only 1.5 hrs per wk but could use in any way but they were slow in actioning this and in meantime we got chc. Immediately they said we wouldn't get the council carer break allowance as nhs would be now paying for everything. When discussing cate needs with chc case worker she was great I ensuring I has an evening to myself. You can still though continue to draw your carers allowance and your husbands pip on chc
I’m interested in the respite hours they may provide. It would be great to have a day a week to go out properly so I’m hoping it won’t be one hour here and there. It’s the fact I am trapped in the house if no one else is here as he’s impulsive but can’t walk so will fall if he tries to stand. I can’t even take the dogs for a quick walk unless I have a sitter.
It’s trying to work out what is reasonable to ask for x
Hi your husband sound similar to mine and is unsafe to be left alone. I might say I'm going for a quick walk or take a telephone call and he'd get up whilst I was out or in another room Although he can walk with walker he is unbalanced, impulsive and has poor vision and his cognitive processing skills are slow and behaviour is erratic so its is very unsafe for him to be alone at anytime. This is what I focused on along with me being very small and him 2x my weight and the fact his toilet habits are frequent but unpredictable, he ignores and moves without warning takes great risks etc and is withdrawn and uncommunicativeand I explained he needed care throughout the day and got 9-6pm. She offered to change the hrs on one day each week to ensure I could have an evening to myself. Do stress these key things, quote the volume of falls and importantly the number of falls you have saved....use the words danger and risk, also your physical health in lifting, stopping falls etc. Gx
Ps stress whilst you need the personal care element because of mobility, cognition, behaviour etc the real need is keeping him safe during the day and that can't have a set timetable such as a 2 hr slot Have examples of when he suddenly mobilizes without warning just after carer left, tries to get up when just settled in chair etc xx
Our District nurses applied for CHC funding for my late husband. It was granted and the agency we were using continued to care for him with the same team.
As he deteriorated and his needs increased so did the CHC funding. We had one home assessment, about three months before he died, which was attended by someone from Social Services and the NHS assessor, but otherwise had no input from Social services. They again approved increased funding. A fast track application was requested for night care at the end, but as it was Christmas, it was granted but sadly he died the day after Boxing day 2019, so it was only used to reimburse me for the private agency nurse we employed on Boxing night.
My mum had no partner and lived on her own. She was awarded 24/7 live in care via CHC. Only certain agencies were approved but really it comes down to finding the right individual carer fit. I also believe you can get an agency added to "the list" if needed they just need to meet certain criteria. It was very quick to get the initial care in place. Changes were harder. You could choose to get the personal budget instead of the care directly paid but it did sound like there was a lot of admin that way. Good luck. I hope you he's quickly and your husband gets the support you both need.
Hi We have had CHC funding for the last 8 months. Initially we had 4 x 1hr calls per day so that my wife could be showered and clothed in the morning with medication; 1hr at lunchtime for changing (double incontinent) and medication and given food; teatime call to medicate and change and a final call to put her to bed. This was ok until recently when the condition deteriorated again. When the calls where increased in the morning and lunch time to allow for the need to take longer to eat (Level 4 food). In addition we get 6hrs per week community access time to allow me to attend a respite club or take my wife shopping with a carer to assist. I also get 6 weeks per year respite cover when the carers live in and care for her whilst I get some much needed R&R. There are two way that funding is provided, the first is where you get a lump sum to spend on caring as you see fit or secondly what they describe as direct funding where CHC tender out the care required and manage the budget themselves, after discussion with PSPA we opted for the latter as it relieved me of much administration an budgeting. I am very gad we did. You still get to directly negotiate the timetable with your care company within the agreed boundaries. We have regular reviews with the CHC coordinator and if the relationship is good then any changes and hiccups can be sorted quickly. You get the final say when it comes to who cares for your husband. I hope it goes as well as ours has,(In East Yorkshire). Good luck and love and hugs from me.
Thank you for your detailed reply. It’s the respite weeks that I’m interested in .. so I’m zoning in on the CHC covering respite care at home. I know I won’t be able to leave my husband in a care home even for a day. He would be inconsolable and terrified. His biggest fear when he was able to speak was …let me stay at home… don’t make me leave my home …please don’t leave me etc and so I’m committed to keep him at home until the end no matter what. He cannot leave the house without hospital type transport so if. Go away I’d need care in our home .
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