Well, despite all my cynical views, we have been awarded CHC, at the first time of asking!!!

I have agreed a care plan with the VERY NICE lady, who got this through for us. Whether, we actually get it, is another matter,but it is their responsibility now. They have to make sure S is kept safe! We got it on Behaviour, mobility and Nutrition, they came up with high risk. I was very lucky, my sister is a CPN, her job is to get CHC. for her patients, so she oversaw my meeting with the VERY NICE lady from the assessment team!

I know this isn't the answer to all my problems, I know I am going to hate the intrusion into our lives, but this VERY NICE lady said she is responsible for S now, as well as me! To me, at the moment, this is huge. OK, OK, I Know I will be screaming in a couple of days, I will worry about that then!!!

This VERY NICE a lady is going to sort all the care out, so hopefully no more rows with Social services. ( ha! Ha!) All I am asking for is time to breath, time to do the nice things with S, not just the crap! Only time will tell, if I am able to achieve half of my wants!!!

I appreciate, I have been very lucky. I know lots of you are struggling to get this funding, some who are a lot further along the journey, than S is! Please, please message me, if you need some help or advise. I am more than happy to share some of the comments on S's report. But obviously not on the open airways!!!

Well, I for one, have raised a glass or two to the team that assessed S. Hope the rest of you, who are struggling at the moment, will be able to join me soon!

Lots of love


39 Replies

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  • Welcome to the club! I'm so pleased you got it the first time like us. I think it does make a difference having someone to help like your sister if you are unfamiliar with the way these things work. I'm also pleased you had a VERY NICE lady to help. Have you asked for night sits or does S sleep well? It makes so much difference to me getting a good night's sleep. It is strange having people in day and night but I have got used to it now and have regular people except during holiday times so they all know C well.

    I'd raise a glass in celebration but it's a bit late now so will wait until tomorrow.

    Sleep well.


  • Thanks NannaB, it's the feeling, that someone actually understands what you are going through, that has helped tonight. I know tomorrow, will bring other problems, that I know I will hate, but, I have no choice, life has dictated what will now happen. At least I don't have to worry about who will pay for the care that S will need!

    Lots of love


  • Congratulations Heady ours is still going through, so happy for you. Yvonne xxxx

  • Not having to worry about finances is a major relief isn't it. OK, daily living carries on the same but not seeing our savings dwindle is such a relief. I hope C can always remain at home but I know fees will be paid if I can't look after him. When I hurt my back he spent a fortnight in a care home where an old neighbour pays Β£1200 a week. We didn't pay anything. I wish there was a better way to decide who gets it. It is so unfair to have folk with the same condition, having the same problem, being cared for by worn out carers but CHC refused by people who don't know the people or what it is like to care for them.

    I hope today is good for you both and you soon hear what help you will get.


  • Help what is chc ? Can you let me know

    My husband has psp he is in a home across road from me he only 72 after looking after for long time I couldn't cope anymore

    We are self funding cos we have savings over23'000 my husband had a good job and a good pension .

    I not moaning cos I see him everyday but my friends husband who lives in the Newcastle has mega money and I meen mega he doesn't pay for care ,

    He has dementia one leg and diabetes I think we should pay coswe can afford too but all his hard earned money is vanishing and we have 4 daughters and nine grandchildren when you are self funding you get no information

    This is first time I have typed anything but I do read all time

    Thank you loo irises

  • Continuing health Care. Google the Care to be Different site. It has all the information you need and can explain it better than I can as it's a bit long winded but it sounds as if your friend's husband has it. It is not means tested so you could be a millionaire and get it if you qualify .

    I hope you continue to post. If there is anything you don't understand about CHC once you have read the Care to be Different site, we'll be able to help you.


  • Thank you so much I will speak to daughters and sake them to read as well

    Thanks llooiiss

  • our assessment is still ongoing .. like you I am not normally pessimistic bug with this I am .

    the mental held nurse visited earlier than expected today , John didn't feel up to letting carers get him up , at seven am . i was still asleep when they arrived , They called upstairs to me . I had Been up at three with him .

    I went back to sleep and he was buzzing for me at 8.30 . a that's never happened before . I was dreading seeing to him in my own He has had an upset Tummy !!,

    I kept calm and managed Managed slowly . after a very late breakfast and late medication he has gone off once more.

    at least she arrived at the wrong but right time to see how I was coping .

    the carers will be here again soon so they can continue to freshen him up and change the top half which I have left tpfor them to do .

    I am so pleased for you a heady , like nannab so rightly says it takes a lot of financial worries away .

    I worry that if when something happens to me , how my daughter would have the worry of sorting things out .. she does have POA .

    sHe would never be able to manage the way I have and We really don't want her to have to ..

  • So far I have managed to keep John out of hospital . pRobably if he did have to go in they would then realise the difference and his needs .

    bE grateful for your thoughts on this .

  • Very happy for you!!

  • Congratulations from me, too.

  • Well done !! What a relief to know you have someone who knows the ropes fighting your corner.

    It will be hard adjusting but there's really no other option, is there ?

    Such a relief to not forking out more money.

    Raising a glass tonight, love, Jean x






  • so glad subject has come up again Jillann . hOw does th finance work . I would love to bake to handle it it and use as and when nessessary .

    jOhn fluctuates . maybe have the help more some days than others . For example Sitters as and when I need and feel able to go out for a few hours , Even have a day off from having th cares in even , have what I call a normal day without any intrusions .

    I am not looking for money for myself to spen will nilly bus as and when John needs .

    I believe you open a new bank account and keep records . I am talking as if we already have CHC !!!!!!









  • Hi Heady, my husband has had PSP for 7 years . I don't post often but I do read daily. We are in the process of claiming for CHC ,we have Terry's 2nd assessment on the 20th Oct. I have received some good info from PSP ass:ANY advice would be really GOOD! please feel free to email me Look forward to your reply and thank you Luv Linda x Oops forgot to say a great big congrats to you both,it's nice to get some good news xx

  • Do hope your second assessment went too plan . It's a very stressful time isn't it .

  • Hi, it was very stressful! No we didn't get CHC!! I am going to appeal even the assessor said we should have . Terry goes to Myton Hospice one day a week,they have been very helpful and when we get the appeal paper work are going to help me tweak it.Also P.S.P association are going to run through it with me. Thank goodness for all these helpful people.We are getting a hoist fitted and a hospital bed soon .Very tired near my wits end. NOOO that's not me

    I will survive.

    Luv Linda x

  • I am sorry you didn't get the CHC , hopefully better luck next time .

    How do you get Terry to the hospice . john is chair and bed bound hoisted at all time .. he is unable to sit in a wheelchair for very long before he collapses forward and becomes unsafe and discomfort . we also have eight steps to contend with and a turn in the porch area .

    The last time he left the house they ambulance men carried him out in a carry chair and suspended him the tiniest seat secured safety straps which nearly choked him , I will never let that happen again . luckily we didn't have very far to go .

    he cannot feed dress himself , he depends on me completely .

    We started the assessment and thought it was finished then they introduced a further mental health assessment . after the consultant met him we have had visits from her nurse . next week they are coming again together with the Parkinson's nurse . it seems to be going in forever ,

    I am not confident at all that we will get the CHC . all departments keep telling me how the cut backs are affecting the results ,

    we have had the ceiling hoists and hospital bed for about two years and already have carers three times a day , living in Wales we are lucky that we only have to pay Β£60'a week . That will increase I am sure .

  • Hi we had a purpose built extension with wet room and slope down to the gate so we use the rotunda to get him in the wheel chair and help him into the car with great difficulty, Myton hospice will collect him when I cant manage. Terry is dependant on me for everything but can walk with assistance a few yards but is very weak and prone to falling backwards with no notice,he has so far this year broken four lots of ribs and both wrists had a spell in hospital wit pneumonia and a water infection. We don't receive any care help at all,we did get 16 hrs direct payment for 3 months at Β£59 a week but someone in their wisdom reassessed him and decided we had to pay Β£600 a month and they would(social services)payΒ£ we couldn't afford it I now pay cash in hand to have a few hrs a week to myself.

    If Johns mental health has deteriorated you should get it, that was the only thing we failed on.

    Kind regards

    Linda x

  • John hasn't been weight bearing for two years , and one of the reasons o did go for a PM outside lift . we would have to have paid for it and would have cost such a lot .If I thought he would have really used it I would have found some way around it

    Mentally he has been very much the same always , unfortunately we have had so many different consultants and GPS . they keep retiring !!! .. been difficult to get him monitored . they don't do home visits . the Parkinson's nurse calls k when she had time ..

    Although I have carers in they cannot be here when they are really needed . No one can go to the toilet to order can they . He isn't incontinent

    which means I am hoisting all day .

    in a nursing hip,e or hospital he would be left in pads until am won't came , with the skin problem . he would bin trouble .

    I mainly want th CHC put in place so that in the event I was no longer able or even still alive to continue my daughter who wouldn't be able to do the things that I do would be able to get the help or right nursing home for him . we have no other family young enough to help her .

    the good thing with having the mental health assessment is they are trying a medication to help him with thought process . . they do appear to be helping a little .

    whereabouts do you live . it sometimes depends on the area by the seem of things

  • Hi, we live in Warwickshire and yes everything differs from county to county. Terry is incontinent for urinary he wears pads but can use the bottle on occasions. The bottle is a great help he doesnt need to get out of bed quite so many times. So difficult PSP has so many different symptoms .Terry can at least still eat proper food although I do cut it up and have to finish off feeding him.

  • do you think he would use a sheath and bag . john use to but is unable . his coordination cognivity is very poor . it's the reason I use the pads . they are basically in case or if left alone , that's only for a very short time though . they are at least looking to get me some sitters . four hours maybe .

    although We do to find the pads easier .

    apart from john not being able to feed handled he is so unpredictable , that is he switches off and becomes so stiff , I know then I have to give up . he won't be able to open his mouth and swallow properly .

    so complex and every person so different .

  • Yes we tried the sheath but Terry kept fiddling with it and he didn't sleep incase it didn't work we prefer pads.

    yes everyone goes through different symptoms. take care talk again

    Linda x

  • Congratulations Heady, (and S).

    As you have found out it is not what you know but who you know. Now you have it use it. Make sure you get some respite, only problem I found is that I no longer have a social worker available to point the way to none health needs. The hospital SW's are more concerned with people in hospital and leaving hospital, no help with people in their own home. I had to find respite homes and give my CHC coordinator the list and let them choose, this is a very minor quibble. You may find the care agency is changed but if any problems DN very good at sorting them.

    Oh if you are not going to be in make sure DN's are aware as they need to see the patient daily and if you are out and they come and they cannot get access they have to contact police to get in. This happened a couple of times at the start of our CHC, the DN were sensible and returned a couple of times before police called luckily we got back before the police arrived (both times hospital appointments). Now I ensure DN know our diary in advance.

    Best wishes and congratulations Tim

  • Hi, I presume DN means District Nurse? Why would they want to see S daily? They haven't been interested at all in S's care, to the point of being rude to me! So why now??????

    As to being able to kept them informed about our diary commitments, I don't know that! It changes so often and always having things put in there at the last minute. Some days there just aren't enough hours in the day to fullfil them all!!!! Hey ho!

    Lots of love


  • Heady, it may be different in your area but in our area: North Wales, the CHC is coordinated by DN (District Nurses) and they have to ensure that the care needed both medical and domestic is correct for the patient and as part of the CHC is they have to check on the patient daily. With M after the first 4 wks we came to the arrangement that they would call to check M twice a week while phoning on remaining days.

    The CHC is managed by local health board but DN do the day to day CHC regime.

    Hope you get better help now you have access to CHC.

    Best wishes Tim

  • Heady I would also be happy if you could email me if you have any good advice, George is getting worse thank you. Yvonne xxxxxxxxx

  • Would you mind copying me in on the email Heady if possible. Getting to the stage where I am thinking of applying so any advice would be extremely helpful. Glad you had a VERY NICE LADY and it all went well. Take care .. Thank you xxx

  • Hi Heady,

    So pleased for you and S, now you'll be getting the help you so desperately need!😊

    Please would you mind sending me the information to

    Keep us all informed of how it's all going!

    Love to you both....Pat xx

  • I am so pleased for you but I have just written to appeal the decision to reject P's application at the DST stage. All I can get from the CHC contact is that they felt P's skin condition was 'overstated'. Pretty clever eh, since they have never met him !

    Still, it is good to know there are some sensible professionals around. I have just taken P for a week's respite. Even before I had got him out of the car, the carer from the home told me that she didn't know how I manage daily and that I deserve a medal !


  • maybe when the skin is t it's worse you could take a photo of it ..

    it's one of the things that came up in Johns assessment , I told them he has had bullous penthagoid , (google it ) .. he didn't have it when they were doing the assessment but it rears its head on occasions ,

    I had teen some photos at its worse but deleted them .

    the other day I came across some that I had printed off so when the coordinator comes again I will show her .

  • Thank you for that but P has poor skin due to diabetes and cellulitis (he`s had that several times). The last bout of cellulitis 5 years ago was so severe that P had to have intravenous antibiotics in hospital for 2 weeks (came close to losing his leg). Consequently the skin is still discoloured and the carers put cream on his legs daily. He can also develop a nasty rash in his groin probably due to the continence pads, so that we treat with barrier cream like Sudocreme.

    I am terrified that any nick on the skin will cause another case of cellulitis !


  • Hi Heady, well done. I'm so happy for you. Enjoy time with S.

    Love Maddy

  • Heady I just wanted to say how pleased I am to hear your news....wishing you lots of good support as you so deserve,best wishes Clare

  • hEady I have just read the post about th rUgby , it prompted me to check that I was right in remembering that you were fortunate in your assessment for CHC ..

    wE are just coming to the next of Johns . it's been going on for months . I haven't heared anything other than it looks like he will get half and half what ever that might mean .

    John hasn't been able to go out of the house for the last two years , He is hoisted at all time onto His chair or into his hospital bed. cOmpletely dependant on me. to cleanse and feed , we do get carers x2 three times a day . oF course they can never be there when yo need them and no because he isn't in continent I am the person who deals in the main with that ..

    hE is not difficult in nature , thankfully but very unpredictable whether alert or times to be fed . Finds any company very very difficult cannot cope with conversation . ..

    Keeps asking me to put tv on or straight , his head drops forward so much .

    I wondered what the difference it must be between your case than ours ,

    I am so happy for you not envious just confused .

    I think I do shoot myself in the foot doing so Much myself . I am 78. . They shouldn't take it for granted .

  • Hi, yes I did get CHC at the first time of asking, not that it's got me very far, still have no care in place. Or likely to, in the near future. Every time I phone to ask want is going on, they say they will put him in to full time care, but I thought the whole idea, was to keep him at home!

    S is no where near your husband, in his needs!!! I can't understand why you haven't already been receiving this funding! Make sure you try and get somebody to sit with you at your next assessment! What we think is normal, because we do it all the time, others are horrified! Answer every question, as on the worst day ever, even if something as only happened once, make it seem as if its regular! Keep on about the unpredictability of your husband.

    You say your husband is not incontenant, but I suspect he has problems! Make sure they know about those! And talk about you are worried about his skin, because of these problems! They aren't going to check, are they????? Choking is another big tick, I sure you have to supervise every mouthful that your husband takes!

    Also, I bet, you don't understand him a lot of the time, push this! The hoisting, must be a huge tick, keep on and on about this!

    Most of all, keep talking about this evil disease, this rotten illness, etc., etc.,etc., they are duty bound to look after people who need care because of illness, why we have to jump through these hoops to prove it..........

    Best of luck

    Lots of love


  • Exactly Heady . He is all of those things., was using the sheath until h became so retracted it wasn't possible before so is in pads day and night .

    Like you although not incontinent but completely reliant on me . I don't get out very much but do try and go three days for x2 hours .

    they have asked me to keep a diary , I have tried my best but he is so unpredictable it's very difficult . It certainly would help me as well as the proffesional . we have been even having extra meeting with the mental health consultant and nurse .

    I don't just care for him I have a house to run .. I also need to use the toilet myself on occasions lol . And shower and feed myself lol .

    the last meeting thy told me because I know it's unpredictable it's not . well what's all that about really ..

    tHey have offered me respite , want to have him in a nursing home to see what it's like !!!!!

    We had my mother in a nursing home after a big stroke for three years .. !!! Know all about it , if he did go in I know he would be much worse when he got back home .

    I just needed to know we have the option of I got desperate , I'll or worse .

    I told the PT three years ago . Give me the tools and I will keep at home with me where he will be the happiest .

    I don't want to lose control , other than to my daughter if necessary who has full power of attorney for both of us .

    lIke I say they did say I might get four hours resource sitters but still waiting for even that . I had arranged with Crossroads for three hours of sits for free . They rang me the other day to ask me about four hours of sits , social services had rung them ... That would mean social services would only be giving me one of sits .

    if the can make John better I won't need anything but they can't can they .

  • I am positive that the people who sent up this funding, did not expect it to be run like it does. Why do they insist on giving these types of jobs to "jobs worths"???????????

    I got tangled up with the unpredictable bit, I think the correct answer is "it is predictable that he is unpredictable". Therefore needs care, because he is unpredictable!!!

    Lots of love


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