I am not coping so well at the minute. Its the behaviour stuff that wears me down.
Today I decided to start hitting the big red buttons!
And, we had a big success.
Unbelievably they are putting us through another DST assessment and calling it a review prior to full CHC. And, yes we have already been through all of that and been told that we were to get a Personal Budget back in November.
They keep walking us around the block!
The local Hospice social worker has been trying to advocate for us and she has come back saying that their notes are incomplete, they don't know what is happening and that she is making little headway.
So today I telephoned the CCG and told them they had twenty-four hours otherwise I would call the Police and when they arrived I would hand them the house keys and leave the County and CCG could pick up the pieces.
Well that worked we are being fast tracked onto all of the care we want... Yes, still stuck on fast track!
So I have called Beacon, the NHS arms length CHC advocacy service and they are going to take up our case from a legal perspective.
At least we have full on care about to come in (ever the optimist) and they have given me a telephone number to get respite care 'on demand' whenever we need it. That of course will be subject to there being vacancies.
Oh, well what on earth would I want to do if I had a life.
Kevin
xx
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Oh Kevin thing you have to do to be heard, can feel how frustrated you are, the bloody system is disgusting, well done for telling them you would hand keys over and walk out. Sending you a big hug, hoping they will do something very soon. Even suggest they come and live at your house for a week, I bet they would run a mile, it is so hard, also feel ready to drop, I am away for a week, the end of next week, not told George yet!!!!!
Good luck Kevin saying a prayer for you, let's hope it is sorted out once and for all xxxx.
I cannot believe you've been through all this shit!! It's utterly ridiculous and unfair especially when I consider how many people you've helped, including my family!
Sometimes unfortunately you have to go absolutely mental before anyone listens!!
Here's hoping everything now falls in to place and bloody quick!!
I'm sending you the biggest hug and if you was nearby that hug would go on and on!! ❤ x
I can't believe how appallingly you are being treated. I thought you had support sorted out ages ago. Obviously you are making such a good job of everything that they feel comfortable leaving you to it. They are just giving you lip service. I really hope things improve soon and in particular that you get some respite. Keep fighting - if you've got the stamina!
We did have care in place, but it broke down in October. The CHC had not been able to find a care agency in our area with capacity to take another case on. So they let it languish.
They called at about 1830 today to say they have now found an agency.
By keeping us on fast track they keep control of the funds and they don't have the staff to pull the stops out... I am here and I can... But I need the funding to take it over.
Its quit clever really, they are complying with responding, but by keeping us on fast track the other regs. don't kick in. That's why I am having to get a 'legal advocate' onto it.
Yes it's that little sentence, "subject to there being vacancies" that puts the spanner in the works. I asked for evening help back in March 2016. In August, I think, they gave me one Carer, but we needed two by then. The day before Steve died, I did get my second Carer to put him to bed. I never got the extra help at the weekend. Thinking back, I got treated appallingly. Even though I did scream and shout, nobody ever cared. I don't know the answer, but it ain't what is going on at present.
Kevin, I don't know the answer, but you have to fight, I know it's the last thing you have the strength to do. I am afraid, I think it is going down the road of regular respite, to give you a break. Unfortunately, the budget is there for that, but not for people to come into the home, back to my olde hobby horse, "better part time, than full time!!!"
I read your post and felt sad and angry for what you went through... We are so often left to try to hold the impossible together. You have been amazing. A real beacon for me.
The last OT told me it needs two people to transfer and do the ablution stuff with Liz... But I am only one and have coped.
We have what we need now, when the agency comes online.
I am tired and emotionally worn out.
I am going to set the legal team on them. Shake them up a bit. I will forgo the money we cant afford to throw away to right this fully. Maybe someone else will benefit from it.
My reckoning is that We have done well in the stakes, but it has been tough as hell. Waking up dreading the day and then having to fight them on top.
Oh you deserve so much more , if it were not for you I would not have applied for CHC , you helped me such a lot with guidance. It actually was compared to some people's stories , comparatively easy to get a yes . However it has proved much more difficult to get a care package started and Thers no sign of respite. To get the care package I had to have a weeping meltdown, within the hour the assessor was on my doorstep ringing numbers to get it started. Care started on the Monday after but no one told us.!! Doorbell rang and there they were. I'm sorry to hear of your woes , it adds to the stress ......but hurray for you and I hope it's all sorted very very soon. Xx GW
Well Dst has been cancelled. Meeting was for 2 o'clock. Got a call at 1 just as I was setting off. Apparently the manager at the nursing home hasn't done her report. How considerate is thst. !!!
I've not been in the group very much last few months as all been a nightmare here with care agencies.
I can't believe you still have no care in place after being told yes but no wait I can believe it as the whole care system is a joke. I've not put my appeal in still but I don't know of I want to as at least I do have care coming in via social care and at moment Mum has gone down hill too significantly to need more care hours. Oh it is just a awful nightmare and I never know what the hell to do for the best as everytime I try to make things better it ends up worse.
Big hugs and hope you get some action this week and get a personal budget in place so you can control the funding more and who comes in.
Your appeal need only be a short letter you know. It just needs to query one or more of the scores on the DST if you had one. I'd be happy to point out what you could do there.
What our CCG has done is the one thing that is hard to challenge. They're keeping us on fast track and have not responded at all to the DST... Leaving me with little to challenge except the 28 day rule. Hence getting legal involved.
I have some info from beacon re appeals so may fire something off but not sure I want to rock the boat anymore for Mum as last few months have been awful and I don't them saying we can't keep what I'm hopefully getting in place in next month via PAs.
No agencies around here have the capacity to cover the few hours mum has so God knows what will happen when she needs more hours.
It is just so much more stress on top of what is already a traumatic day to day living.
Hope your legal approach gets some action from them. Isn't fast track meant to be a fast response in cases or important need!
Pants the struggle you have had. I think its across the board, we are now on yearly review I opted out of personal budget, it's a good idea but I couldn't manage anything else. Re your respite we had probs with placements and some places demanded a fortnight minimum stay! Also care was inappropriate and he had frequent fall due to lack of staffing. I demanded then care at home for my respite from a safety angle, it works really well, live in carer and I have four to five days every three months. Ok I leave the house usually not far, a cheap little cottage or caravan, do some walking And chilling. But there is always the option for you to remain in the home whilst someone else is doing the caring. CHC fund this care up to a max cost of 20 per cent more than it would cost for a nursing home as it is dearer.
We were finally awarded CHC in November but it only started 3 weeks ago !!!
2 Days a week day care for my darling husband.
For me to be heard I contacted the emergency duty social worker team and reported risk of serious harm.
She asked a series of questions, including 'who is the victim'
I replied 'he is not a victim but we are both at risk, patient and carer, of serious harm through complete lack of support, with a carer so sleep deprived, she is feeling like a zombie and can no longer cope'.
It was simply that 1 phone call that made a difference.
Added to that a formal complaint was made and I have received the outcome of that complaint that reads like a comedy sketch of an escalation of errors made by people not communicating with one another and not wanting to take responsibility. The report concludes by thanking me for bringing this to their attention and that training will be put in place to prevent this happening again ... Pah.
Sorry a bit of an unplanned rant there. If your current situation does not improve consider trying the same route.
So sorry to hear of your continuing struggle. It is one hurdle after another and just when you are at your lowest point too. Caring for someone with PSP 24/7 - as we all know ! - is absolutely exhausting; we have all been at breaking point.
Unfortunately, getting the funding through CHC (as difficult as that is), is still only a small part of getting the actual care delivered to you. There are just not enough agencies/carers to cope with the current demands on their services. I never did manage to get carers in the evening for P while he was at home - it was difficult just getting the morning ones to come at a regular time.
One of the reasons for admitting P to a nursing home when I did was because the homecare agency said they were unable to continue to provide care (safety reasons and not enough staff to cover). Of course I had tried lots of other local care providers too. I had to also factor in the oncoming winter months when care/nursing homes are even busier and that I probably would have to accept any vacancy available in an emergency. Ultimately I chose to pre-empt what was becoming inevitable and had the choice of where to place P ( a home he liked after being there for respite).
I have never regretted my decision but I bitterly regret that PSP made it necessary.
It is a complete nightmare isn't it. We have had two agencies quit on us as not enough capacity to cover all the calls. Bedtime ones are the worst to cover as you have experienced yourself.
You still have a sense of humour hanging in there. Your poor cat being all neglected!
I think since Mum came our of hospital last Easter most of time and mental heads pace has been taken up trying to sort out care agencies and how crap they are.
When will the government actually do something about the NHS and care system that are in such a dire state
I am dreading the care agencies, again... Its all so simple when I do the care myself, but Liz has required doubled up carers for quite some time and I can no longer manage some of the work. The transfer onto the stair lift, at the bottom of the stairs, can only be done by one person. I have been advised that I will have to do that as the carers won't. I guess the next step will be for Liz to move into the living room.
I'm so glad you found a nice care home. That is like hitting the jackpot.
Thanks Kevin. I do feel for you, it is a `no win` situation` . Getting the right carers is crucial when you are struggling at home. P also needed `double up` but the staff just weren`t available sometimes.
The final decision for us was when the agency said they would have to withdraw for safety reasons and that very week the GP had told me to accept the inevitable before I collapsed.
You are so good at fighting your corner, Kevin, despite obvious frustration and exhaustion. You have been a great help to others, me included too. Keep on punching . Hope all is sorted out to your advantage soon. Sending a big hug. X
PS We are still waiting for the long promised CHC assessment, but I have got 5 hours respite care for the moment. X
Its sickening isn't it ,it was only when I lost my rag and threatened MPs the press the TV etc etc that they suddenly "discovered " we were eligible especially when I said I hadall the names of the people who I had been dealing with plus the dates and times of phones calls and I hoped they had all their correspondence and phonecall response times in place as they would be needing them .(thanks to the advice of my daughter who is very goodat this stuff )
Anyway I hope you are sorted now although I am afraid although life gets a bit easier CHC funding doesn't resolve everything as I amsure you are aware.
Kevin, I can't believe extra care and respite haven't been put in place since you received the funding, how bloody disgusting is that. I believe they need to raise the wages and status of carers to attract more and appropriate carers to the profession. You do truly sound at the end of your tether, not really surprising when you have to deal with more advanced stages of PSP virtually on your own. Little wonder you were kicking and screaming to the powers that be, I hope for both of your sake something is put in place pronto. Please try to hold it together until something is sorted Kevin, you are doing a grand job and have been a massive support to many of us on this site. Your turn to reach out for love and support from all of us to help you through this particularly difficult time, oh how we all hate this wretched disease and what it does to us. Sending you a comforting am around your shoulders
If only we were physically close to each other think of the power of us all marching with wheelchairs !!
national flags flying - - - rubber gloves aloft !!!
love, Jean x
Hi Kevin
I have just caught up with your post. You have helped me with the CHC so much and I really am so very sorry that care still hasnt been sorted out and things are still very difficult for you. We got through the checklist last week but the specialist nurse said that she completed a successful checklist last August and that patient and their family are still waiting for the more in depth assessment. This really is a nightmare! From seeing all the other replies to your post I can see that this is only the beginning of a very long fight. Its hard enough to try and cope with the PSP/CBD without all this adding to the stress. I am so very sorry Kevin I hope that things get sorted for you very soon. Sending hugs Martina.
Sorry to be slow - We've been fighting our case for most of the day!
The CHC is required (under the National Framework) to complete the assessment within 28 days of the Checklist assessment.
Also they are required to backdate any funding to the date of the successful checklist.
It might be worth writing to them at the end of the 28 days to remind them?
The other thing that works really well is wailing in desperation of no coping (down the phone) and stressing risk to the 'patient'.
Our case is highly unusual - they have been paying for the care all along without putting us in a proper footing. Now they are going to re-assess -He we go again another DST!
Best of luck.
Please don't hesitate to private message me if you need any hopefully helpful comments.
Thanks Kevin we are awaiting the DST at the same then only for us its for the first time. From what I am reading this is only the beginning of a very long fight to get NHS help. Like you Kevin we are really desperate for help. Thanks for the offer of private messaging and same to you if you are at your wits end as I know what its like!
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