Social worker

Some time ago I had a carers assessment and my husband was assessed for his needs and we undertook a financial assessment. The outcome was I was granted 3. Hours free flexible sitting arrangement per week. Today the social worker rang to tell me that we will no longer be on the social services records / books as nothing else is needed .

When and if the situation changes I need to ring the social services and be assessed etc all over again

I am amazed , as psp is progressive and terminal I presumed that was our social worker and contact unti the end . There is change already since the first assessments , it's ongoing. It's just at present I do everything for my husband and call on family when I need help. I toilet, wash, shower dress my husband, he can not get in or out of be d or chair or a car. His food is cut up. In fact the only thing I don't do at moment is feed him. How can they make you go through the telephone assessment channels and start from scratch each time???? At the last telephone assessment after telling the m everything I did for him I was asked if he went out on the bus on his own.

Has anybody else had this experience ???? I'd be interested to hear.thanks

51 Replies

  • Hi G'woman

    PSP is a complex disorder and it should come under the NHS which offer Care in the Community for free. No financial Assessment and no contributions.

    The Social Services is legally not allowed to offer Social Care if there is more than a minor amount of everyday nursing needed. That does not mean you have to have a Nurse. You are probably doing that Nursing! But is still counts.

    Have you been assessed for CHC with the NHS?

    Yes, everyone is trying to protect ever diminishing budgets, but thewy might just have handed you free CHC on a plate.

    If you let me know how dependant your husband is (sorry I loose track here) and whether you have been assessed for CHC in the past I might be able to make some sugestions about how to improve the services you get.



  • Hello Kevin, thank you. No , not been assessed for CHC yet , not sure of procedures but I don't think we are at that stage. Briefly , my husband cannot get in or out of bed, or turn in bed. Can not dress or undress himself. I also shower and toilet him . His mobility is nil on his own , can't get out of chair , I move him on a mo- lift to toilet and bed. I cut his food up, he can't use knife and fork but manages with a spoon. He chokes easily but this is quite often from inappropriate laughing for no reason. Co ordination and eyesight both very poor. Uses convene at night which I tend to. He calls often in night and quite often wants to get up at 3 or 4 am and at least twice a week bed has to be changed in night, I think he pulls the convene. He has been assessed by social worker as high needs , I had carers assessment after which I was allocated 3 free hours sitting per week. Neuro nurse got him a 12 week day placement at hospice, finishing in 2 weeks. The sitter I have was allocated to me from social services via an agency they use. In order to have this service a financial assessment had to be done and we were informed of the amount we need to pay for any day help and weekly respite. I've not requested either yet but obviously I will need to as things progress. Can't believe that I will be off the books and have to go through all the assessments again, starting with the tele phone one. ,,just cause I manage with family at present . Hope this gives you a clear picture.


  • Hi

    No, you are well past the stage where you are eligible.

    See the G.P and ask for a referral for CHC. Everyone is entitled for a referral and an assessment.

    I can post tomorrow with some ideas about how to get turned down for Soc Serv. Social Care.

    Yes, I really said that. When they assess if the care is beyond their legal limit (too severe for them) and from that you have just said it is way beyond, the the NHS has to pick up the care.

    Would you like some info on that path?



  • Yes please , thank you very much indeed.

  • Hi Kevin can you PSP that info onto me as we are at the same stage which was hurried along by Ben's broken hip. The matron at the hospital submitted an assessment and said we hadn't qualified, never saw the report but hospice community nurse trying to get hold of it. No one seems to want to help get the funding so once again down to the carer to do all of the chasing.

    Thanks Kate xx

  • Hi Katie

    Didn't qualify with a broken hip and PSP?


    Yes, I can send you some notes

    No problem.

    Would you private message me answers to the following.

    Depending on the answers different routes are available.

    Roughly - How able / disabled is Ben (Sorry I loose track on the forum).

    Are you getting any funding for the Nursing Home at all. If so from whom.

    Has there been a means test?

    If you feel OK private messaging me the answers I will come back with some guides.

    All the best



  • Will get back asap Kevin

    Thanks for your help

  • To get hold of the Hospital Matrons Assessment:

    Telephone the PALS Office at that Hospital and merely tell them that you were refused a copy and are calling them to get a copy otherwise you have no alternative, but to make a complaint.

    They might try to tell you you are not entitled top it as it is Ben's - Just say you are phoning on his behalf and he wants it.



    PS - Don't miss the other reply I have done to you here.

  • These were the articles I posted to G'Woman.

    They are specifically for cases where Social Care from Social Services (means tested) have been offered.

    Though they make a good introduction to CHC from the perspective of the Coughlan Case and what a Primary Health Need is.

    Come back to me as per the other post.




    This first article explains 'The legal limit for social services'.

    This article explains the difference between CHC and Direct Serices or Social Care.

    This article explains the usefulness of failing a Social Care Assessment and what you need to point out to the Social Services before they assess. - It is very good.

  • You absolutely should be going for CHC .Your OT and Community Matron should ne doing a preliminary assessmer and from there onto the full assessment .You are well down the path .They should have shuggested it .

  • Thanks Georgepa, we have an OT but no community matron or district nurse. Social worker is making her last visit next Wednesday I have now made appointment with GP to try and get ball rolling. I had no idea I could apply for CHC , I don't use carers yet because I'd have to pay ......and I can't see the point of paying to sit and wait for someone to get him up or put him to bed , I might as well be doing it myself. I pay for other help to ease situation on myself for now. Best wishes x

  • That happened to us as well, I asked them not to close our file as George's illness was progressive, but they said if you need any thou can be reassessed, what a load of rubbish, George was in the same place as your husband, when we went to the hospital it was the professor at the hospital that said are you getting CHC, I said no, he said you should be getting it, this is a progressive illness , he supported us with the help of the DN and new social worker we got CHC, you are going to burn yourself out, if you don't get the help now, Kevin is right go to the GP tell him you can't cope, you are not sleeping, how can you function without sleep, please get some help, the illness is horrible xxxxxx Yvonne xxxxx

  • Thanks for your reply I didn't think we would be eligible for CHC , he's not bedridden . I thought I had to have a social worker to call on if I needed carers , at moment I manage, but I am so ratty some days, I can't control myself. , especially if I have nights like last night, bell cabling at 3.45 am wanting to get up, laughing at me , constant till I finally got up at 6.45, banging everything I touched ! I don't know why cause my point was totally lost on him he just sat laughing . The laughing is tipping me over the edge, the worse the situation the more he laughs , sometimes choking. It's a shocking illness and takes a saint to understand. X

  • I agre

  • I agree with Kevin. Our social services file has also been closed but we have CHC and lots of other help. There are so many departments that have been involved. The neuro rehab, the hospice or the GP are the people I contact if there are problems now but never SS.

    I hope you soon get more help. You will need it.


  • Thanks , I thought it was so odd to be without someone to call on for more help. No one has mentioned CHC and he hasn't seen a doctor for 12 months . I'll try that route now I know it's normal to have social services close file. X

  • They don't have to be bed ridden, you need help, go and see your GP you can't carry on like this, the laughing is worse, they have me empathy, but that is the illness, don't you go to the hospital? Surly the doctors can help you, were are you living, start phoning everyone, maybe even your MP sending you a big hug Yvonne xxxxx

  • Yes we go to the hospital , once a year, next appt is November. Last visit 12 months ago we were in and out the room in under 2 mins. Not expecting any help from that corner. When first diagnosed we were told "it's psp, there's nothing I can give you but I'll see you in 12 months" I came home and googled it. I can't tell you what the laughing is doing to me, I can be cleaning an accident up and he can't stop , tonight I had to take his meal away from him , every time he had food I'm his mouth he started laughing. Anyway , I'll be getting a GP appt now and going from there. Many thanks xxx

  • I am from the US so This sounds very familiar to everyones case I read about from the seems very reminiscent of what Georgepa is going through...I may be wrong but assessment reassessment sounds alot like Georgepa...

  • So I have had the same kind of problem as you gw, in that we don't really seem to exist to our medical community. the only answer I get is "It's easy to get confused, dear" from the little condescending nurse while scooting us by "Dr I Don't Touch That" I asked when home health services are coming out for an initial visit...the good dr said your regular dr is sposed to do that said that you would do it sir. if not , I will do it but I just need to know what is going on....DR, oh well we can do it, but why are you here....Me, because no one has told me how to take care of this thing except jzgirl and others....and you said to come back on this date....granted, that was for the straight cath..but I called your nurse to see if I needed to come in and she never called back so here we are.....and can we get a smaller ag to take to the comes undone and urine spills all over ...quite embarrassing....DR, why don't you get a leg bag.....because home health care hasn't come out yet, you know the one that you ya'll set up ...and on and on we danced til we were both exhausted .....

    So It's been almost a month since ER put in a cath. I have taken care of it ( thank you again Jzgirl) waiting for an initial conversation with a nurse(?) on hygeine ,safety and replacement...

    Dr never looked at Bruce except for the sore the tape caused Bruce....again no touching!

    My husbands whohaw could have fallen right of and his urologist would have never noticed...See you in a year Bruce, Be warm be filled!

    I say all this with much sympathy and empathy with what you are going through,,,,,


  • Goodness AVB!

    I'm surprised the Dr isn't being treated for cuts and bruises.

    Strength to you for persevering!


  • Oh Kevin ! I have sat in the office having a totally sinsister thoughts about him...conversations that do not show the respect that his title demands...and now that I have experienced this title over and over , My respect level has gone way down....this little that'd be a proctologist...this little dick is not even worth the lack of respect I feel toward most other drs...perhaps it's more trust than lack of respect....I do try to respect at least on a human level...But yah, K1 I was not a happy person yesterday!!!

    and then poor Bruce had to use the suction machine all rest for the weary! He calls ...


  • Hi AVB

    Thanks for the smile - (Doctors specialism!). You do have a way with words. lol.

    You really are up against it!

    Y'know some of these folk need to do just one week of full on caring - How their attitude would changer if they survived it.

    With you


  • UGH! What is the problem with doctors like this? What happened to doctors that actually cared? If you have crappy bedside manner, go do the world a freaking favor and start doing research and maybe making a difference by finding information that is helpful to someone. Stop seeing patients and letting your lack of caring negatively impact people you took an oath to help. I'm so sorry for your experiences. I know you are in the states. Are you in the south? My parents just moved down here and I have had an awesome referral to a neuro close to us. Not sure what kind of dr you were seeing, but if you're close, maybe the dr my dad will be seeing could tell us some good ones elsewhere. No reason to keep seeing an a-hole.


  • Hey Wishdoctor, where ya'll from.?.we live in the (mid)south but neither B nor I started here....My kids were raised here though. NW ARkansas , 21 years! We love it...Autumns are amazing....we get excited when we get a half inch of snow that melts by morning...seriously, they close schools! Of course, we ARE in the Ozarks and Boston Mts. so lots of hills make for slippery bus rides!

    I love that philosophy! " If you can't be a doctor, do research!" It seems to me the more specified you get the more detached you know sort of like a detached retina...unless you are looking really close ie on ly one part of the patient, you lose sight of what was once so clear, the human being...


  • We are in GA, but have lived in CA and IL. I much prefer the South :) They close schools here for "snow" too! In fact, they just closed schools the other day because they were predicting massive winds. Nothing happened. Haha.

    And I don't know what the deal is with doctors. In some respects, I wonder if the ones who are able to be really specific are just super smart, and lacking empathy to begin with - they go into the field because it's interesting rather than because they want to help anyone. I see that already in my son a little. He's almost genius level, but there's definitely a deficit in compassion, understanding, etc. It's like he can name off every dinosaur that's ever existed (since he was like 5), but can't get dressed right, and doesn't always think "hey, my sister is crying, maybe I should make sure she's alright instead of continuing to play." Anyway, I'm rambling, as usual. I guess I'd rather think they have some sort of cognitive or emotional deficit rather than that they are just total jerks that just want the paycheck. There's something else going on because some of them just aren't firing on all the same cylinders. Alright. I clearly need to get to bed. Haha. Night!

  • In Oklahoma they call high winds "tornadoes" and they probably won't call off school....cuz the wind blowed it away! Luckily because of the mountains ,,,,all 1200 ft high of them we seldom get twisters.

    Yes maybe all specialists are autistic....It certainly makes for a better excuse doesn't it,,,

    to be fair brothers are always... well usually like that with their 2d and 3d child were always they are best of friends, and my son too could name every dinosaur now he has switched to plants and what their zone is and if they are native or invasive etc etc.....wants to become an arborist to enhance landscape architecture degree....Well I'd love to go to bed but my husband is up doing his bathroom thing which used to be done in morning.....I do not know wats up with him! I hope you are sleeping well'.


  • Hahahaha! I can just imagine my son doing that as well. One minute it's dinosaurs, then it's the solar system, then elements, etc. Currently he's on WWE wrestlers and comic book heroes. Oh well. Anyway, did not sleep well. The youngest is seriously congested and slept horribly, so I did as well. That is one problem with the south - just about everyone ends up with allergies/sinus issues. Hope you finally got some sleep last night/this morning!


  • I too had fitful sleep I was rescuing B in my dreams....cannot tell you how, only can see my dreams cannot articulate them, wierd eh?


  • So your children still at home?

  • You made me is a bit like that isn't it.xxxx

  • they did it with me are you not on direct payment

  • No , don't get anything other Attendance allowance

  • Hi laila123

    Are you not on CHC?

    If not you might want to read the links I have posted (above) for G'woman.



  • Gypsywoman you definitely qualify for chc!!!! You can ask the hospice or DN to start the process, accept all the help Kevin offers, that dear man is truly amazing and helped me beyond words!! We got chc in May when dad was in hospital and now have carers every day 2 at a time, 4 x a day plus district nurses every night! Also the chc can get the carers to do respite a couple of times a week for 4 hours at a time!! Maybe more, I'm not sure as haven't asked for more respite must get this ball rolling, you'll wonder how you ever managed before?! And it's NOT means tested and you don't pay a penny! Let us know what happens....big hugs x

  • hi

    yes this is what happens but my experience was that although officially off their books when rog cascaded down dramatically i just ran the assessment team and everything went very smoothly new package in and chc funding so don't worry. it makes sense re using resources, so i promise you nothing to worry about

    foggy here today !

    julie x

  • I don't call S.S but have a neurological team. They also "close case" but when I need anything I call the team and am immediately responded to.

    Hope you have a Team Where are you ? I am in London.

    Jean x

  • Hello G'woman

    For the CHC Application - Ask the G.P. fo and for them to submit their clinical opinion to the CCG. (Clinical Commissioning Group.)

    Ask the Neurologist to write a letter you can submit to the CCG for the CHC assessment. This is usual practice they should not mind at all.

    These letters will form good evidence supporting your claim. Get the requests in early - they can be slow.

    Here are some articles.

    Just have a quiet read through and come back to me fir clarification if you want.

    This first article explains 'The legal limit for social services'.

    This article explains the difference between CHC and Direct Serices or Social Care.

    This article explains the usefullness of failing a Social Care Assessment and what you need to point out to the Social Services before they assess. - It is very good.

    Do come back to me (by private message if you prefer) If you need anything clarifying.

    If you get an appointment for an assessment for CHC you might want to come back to me I can steer you toward material which will show you how to prepare for it is such a way to maximise your chances of getting the funding.

    All the best


  • Thank you Kevin, very much . I have made appointment with GP but it's not until Oct 7 , on that day also the neurological nurse is due to call on us. I'll sit and read through his material and try and digest it all. I didn't think I would be eligible because I'm not doing nursing care, it's all personal care really isn't it ?? It's going to be interesting as GP has never met patient, neurologist has not been seen since Sept 2015, I find it all quite incredible. Obviously expect too much.!! Thanks for the help and sparing me the time to get the info together X

  • No problem

    Reading this forum I am often stunned at some of the things going on with Care, social Services and the NHS.

    For us its a constant struggle.

    It works like this if there is a primary health need (PSP in this case) then the NHS must pick up the care all of it, Social care as well.

    People are often told that its all social care. In fact a lot of nursing is social care when you think of it. Changing sheets, bathing, dressing are all part of a nurses duties too.

    However that is the next step when you are preparing for the CHC assessment. Right now you are merely looking for the Social Services to deem the care beyond their legal limit.

    Good luck


  • i totally agree myhusband died last year i had to make a decision for him there was no support i had to fight for everything it is wrong i

  • Laila, I am so sorry to hear about the loss of your husband.

    It is wrong. I have read that for every person getting CHC there are three eligible people who do not.

    Even with the correct support caring is tough.



  • i run a center were i help people my husband was the only one in bolton now 47 he to was in the hocpice but a doctor who was there let him stay she left then another came and said he coudnt stay he was so upset about this i strugeled for 7 years learning everyday about this cruel ilness but yet nothing being done about it nobody knowes how hard it is to live and care with psp it saden me to see it is still going on my heart goes out to them i have written a letter yet again to parliment to see what can be done so i pray it will happen

  • Dear Laila

    I deeply respect your two commitments.

    First the depth of love you must have for your husband and the great amount of self sacrifice you have made to that love of him.

    Secondly the commitment of writing this wrong.



  • I can't get any help without paying for it myself. Since I work I will receive nothing. Like you, I do everything for him. Sad to say our financial situation is dire.


  • What country are you in Cuttercat? If UK you are eligible to apply for CHC - free at the point of delivery - no means test.


  • We are in the US, in Raleigh, North Carolina. We don't have the same kind of eligibility and we were never the working poor. They qualify. My husband, Charles, was a nurse and I'm a secretary. Guess we aren't the lucky ones.


  • Hi Cuttercat

    I know that despite getting a lot of stuff free we have had to shell out many '000s of dollars for essential equipment. If we had to pay for the care on top we would have been financially up the creek.

    The in betweenies. :(

    I guess you guys are like us... decent middle of the road employment professions, comfortable, but not stormproof.

    Tell Charles a clinician from the NHS waives a salute to him!

    Well we are all in a family here on this forum.

    Sorry I couldn't help.

    Warmly waving to you both.


  • I am not promoting this , but I HAVE heard of people actually divorcing so that they qualify better for services here in America! Sad but true....

  • It's bewildering isn't it GW, we are at the same stage as you and have just started to have to pay for care, Ben isn't retirement age yet so no state pension, have just forked out thousands to get graded patio so that he get out of the house, wet room installed and the gravel drive needs to be changed so that I can manage the wheelchair etc. Ben doesn't get his state pension until next year and money is just disappearing before my very eyes, worried the private pension pot won't last out. We have no family nearby and difficult to ask friends to help/sit with him because of toilet needs. Impossible situation! I hate all of the red tape they put you through to get the support you need and deserve.

    Hope you get it all sorted

    Love and hugs

    Kate xxx

  • Hello Kate

    It's incredible how we have to struggle, we left a house we'd lived in for over 30 years cause could get no help to adapt for progression of the illness , we had to pay the first £25,000 of any work.. Moved house to a bungalow, spent the spare cash on wet room and upgrading , ramp, paving etc. I packed, sold, found bungalow , moved us entirely on my own, first time husband saw bungalow was day we moved in,.

    I know this much, the more you help yourself , the less you get when you need it. It's very difficult to ask friends to sit , I agree, because of the toileting. It is an impossible situation, I do have a daughter not too far away , but she has 3 children and works , she helps as much as she can , and is coming to stay for 3 nights soon while I have a mini break. I'm trying not to think of the toileting needs or the convene being put on at night. She says she'll cope but it's not nice when it's your dad is it ?

    Today I have nearly toppled over the edge of the cliff, he has laughed at everything I've struggled with from getting him out of bed , bathroom performance, falling out of chair and the struggle to get him up and so on, non stop laughing . I've cricked my neck, hurt my arm , sat and wept and still the laughing . Dear God give me a more " normal " day tomorrow. I've never felt such despair, can't imagine how he feels. I hate this illness that has forced itself into our lives.

    What would we do without this site to vent on,it just about keeps me sane reading how others cope and getting advice.

    Bye for now

    GW xx

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