Exhausting day of fighting the CCG!

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.



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58 Replies

  • 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.

  • Aww darling

    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!

  • Hi Pentland -

    Thanks for posting.

    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.

    We will get there!

  • Yes you will get there! But Your gonna have to use all your strength to get there!! Seriously K, I could actually make mincemeat of these f******!! X

  • :)

  • 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!!!"

    Lots of love


  • Hello Heady

    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.

    Sounds familiar I expect.

    Love to you Heady



  • 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 that was what I did - Weeping breakdown...

    Why should we be put through this?

    I'm so glad you got sorted out.

    This stuff is so crucial.

    We seem to e about to get what we need.

    Thanks for being there



  • Kevin I'm praying that all works out for you very soon. You have been a tremendous help in sharing your vast knowledge with us, thank you. Nanny857xx

  • Thanks Nanny857

    We will get there.

    For everything I share here I get twice as much back.

    Yours has been a good voice for us.


    PS Sorry Nanny857 - name wrond - corrected now - old habit.

  • Sorry mistyped you name - corrected - I'm running on automatic today I guess.



  • No apology needed, I answer to lots of names...

    Hope you had a better day today. Nanny857xx

  • Thanks


  • Our Dst meeting tomorrow Kevin and I know we are going to be very stressed. Hope things start improving for you . What a rocky road we travel !!!!

  • Good luck Doreen.

    Remember the outcome is not the end of the road. More can be done.

    Ask them to tell you each score and to tell you how that matches the scoring words.


    1 Can do

    2 Can do with assistance

    3 ...


    The scoring is open for discussion in the DST and you need to record any disagreement... have paper to the ready.

    Good luck.


  • 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. !!!

  • Its a nightmare Doreen

    I hope you get another one soon.

  • Oh, Kevin , I'm so sorry to hear of your struggles. It takes all our energy that could be better used !!!

    Sadly, it seems we need to show we are not coping. I find plenty of sympathetic noises but not much actually happening.

    You really need some respite at once to help you detach emotionally. I know how hard it is to avoid getting drawn in.

    Big hug, Kevin, from Jean xx

  • You see it as it is Jean

    I can be a little gullible.

    But gloves are off now. Blinkers too.





  • Can't offer anything other than a man hug and hope that tomorrow is brighter.

  • Thanks Tokki

    There is hope now.

  • Good luck Kevin. I'm so sorry you're having such a tough time xx

  • 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.

  • Thanks SpiralSparkle

    Hopefully we will get more in place now.

    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!

  • I couldn't find any P.A.s in or area.. Well there were a few doing short term emergency cover with a fee to match.

    I hope it gets better for you.

    We will give Beacon a whirl.

  • It has taken me since last Easter to find a team and I'm still not entirely sure how it is going to pan out.

    Will be alot of administration work for me and also employer hat on if they start to be unreliable.

    Meeting a support worker today actually to talk about the ins and out of employing PAs.

    None of the care agencies so far have been of any support or helped get things in place for Mum. Alwsys left it up to me.

    Think my brain exploded months ago!

    Beacon appear to be a good resource so all crossed they kick some peoples butts for you.

    In meantime though we have to deal with the fall out from our loved ones and behaviour changes with all the stress.

  • Kevin

    Get the press involved or at least threaten them with the press. You just need to sound convincing! Think of our politicians?! Need I say more?

    Good luck to you and Liz.

    Marie x

  • Hi Kevin

    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.

    Onwards and upwards

    Julie x

  • Thanks Julie

    That is useful to know.

    I am thinking of abandoning the Personal Budget thing as there is such a shortage of carers here its like having a 10 bob note and no sweet shop.

    As yu say there is a desperate shortage of Nursing Home places and it looks to be getting worse as the babvy boomers increasingly hit the age band.

    But I must get Liz onto proper CHC.



  • Did you organise the live in carer or CHC? Pleased you have something in place that has helped you get respite and also able to remain at home

  • Good Luck, it's so unfair that 'the system' makes things so difficult, at a time when you wouldn't be asking for help if things weren't difficult.

    Sending a hug

    Debbie x

  • Kevin

    The same happened to us in August last year.

    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.

    Take Care and Good Luck


  • Hi Pam

    No not a rant - It was good to see that my plight follows a well trodden path.

    I think we are half way there now.

    There is a danger that as we try to go onto full CHC they might try split care with Social Services. We have to avoid that, "mind the gap" scenario.

    You know, you post, as well as a few others here, have helped me put some ideas together for the legal briefing tomorrow.



  • Dear Kevin,

    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.

    Keep strong, keep fighting.


  • 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.

  • Yes, I have spent three months trying to find an agency with capacity.

    Bed time ones are where I get the wind up behaviour at its worst and then sleep becomes difficult because of the upset.

    And if the cat thinks I might be awake she uses me as a trampoline... I've got quite good at pretend snoring.

  • 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

  • Hi Nan Babs

    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.

    I'm travelling a well worn path it seems.

    Warm wishes to you both



  • 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.

    Best of luck to you both.


  • This post was unwise.

    So I have deleted it.

    Tiredness kills!

    Message me if you need to.

    But it is nothing much.



  • Sorry NanB

    Nothing to do with your post at all... And thanks for wishing us luck.

    I said something about an event which is going to the Solicitor and decided, after posting, that it was unwise to say that.

    Hugs to you

    Again sorry



  • No problem.


  • 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

  • Good luck Robbo

    I'm now putting a legal advocate onto it... See my reply to NanBabs just above your post.

    Time for something heavier than my efforts.

    Its sad.

    Hugs back at you :)


  • 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.

  • Do you fancy visiting our CCG with me - bring your baseball bat ;)

    Yes, its not the way its supposed to be.

    I think we are getting there now.

  • Bulldozer would be more use!!

  • Thanks that has given me my daily smile - lovely image,

  • 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

    Love Kate xxx

  • Thanks Kate

    You and this wonderful community are what enables me to keep going.




  • 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.

  • High 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!



  • Oh, I think I left the reply for this somewhere else.


    Think you've seen it.

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