Parents, carers and disabled parents
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No freedom of choice

Gill StaffordGill Stafford Member Posts: 8 Listener
My 28 yr old son has CP. I shared care with my husband until his unexpected death in December.we had help at night with hoisting and 9 hrs soc support. Soc Services are now trying to take over my sons life and saying if he does not do as they say they can apply for a protection order. He is put to bed at 9.15 (and watches dvd's until 3am) as this fits in with the care agency. He's now been told he should be got up and personal care and breakfast given by carers at 9.30 as he should develop a "routine". He' does not want this and wants the freedom to choose when he gets up as he's a night person. Soc Services refuse to let me hoist and do personal care in the morning ir hoist at night though it's been classified as a one person job. Soc services say he needs a mental capacity assessment (he holds a degree) and should see a speech therapist - he has a high level of non-verbal communication skills inc gestures and ipad/keyboard and communications program. This is degrading and upsetting to him as he will never speak and has worked hard to become good at communicating . What do we do? He is losing control over his life and says he wants to run away. Soc Services seem to have no understanding if CP. Yes, he needs help but not his choice taken away. Direct payments didn't work as we live in a rural area and couldn't get a support assistant.


  • Gill StaffordGill Stafford Member Posts: 8 Listener
    We can go away for weekends/holidays and there's no restriction on me looking after son because we're out of our local Soc Services area.
  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous

    Hi Gill,

    After speaking to you earlier at the helpline we have made a referral to one of our regional workers for support and advice and will also be in contact by email.

    Best Wishes,

    Scope helpline

  • Gill StaffordGill Stafford Member Posts: 8 Listener
    Thank you very much.
  • kingboy25kingboy25 Member Posts: 57 Listener
    I would suggest your son see a solicitor.  My 29 year old son would drive your authority out of their minds as he just lives his life as he wants.  He isn't quite as disabled as your son but still has many a fight with people who think he should always be with a carer.  What is normal about putting a man of his age to bed at 9.30. 
  • Sophie BuckleySophie Buckley Member Posts: 12 Connected
    this is disgusting I choose resedual care because of this and a high level of staff turnover. according to my social work trining this is abuse and neglect, i find it hard to take when my cp is affected by sleep and i need to sleep when my body needs
  • Gill StaffordGill Stafford Member Posts: 8 Listener
    The latest situation that the soc worker has applied for an advocate for son. She has now decided he has "capacity" (awful expression and I shall be questioning her use of this expression, surely intelligence or understanding would be a better word to use) and so should be listened to. Except they're not yet listening to him. She will visit with her manager who I asked her to ask to justify G's bedtimes and, hopefully, I'l be able to put him to bed at a time suited to him and not carers.
  • mafalamafala Member Posts: 72 Listener
    Hi Gil. This must be very difficult for you both, specially with the loss of your husband. is there anyway you can get the money for social care for your son to hire his own carers?
  • Gill StaffordGill Stafford Member Posts: 8 Listener
    Hi Mafala,
    Thanks for your post. We had Direct Payments for a few months but, because of our rural situation, the agency helping recruit a suitable person (the carer we had returned to his native country after three months), recommended we return to Social Services contracted care. When we move to the larger town we hope to live in, we'll investigate this possibility again.

    Our social worker referred my son to an advocacy service. The advocate assured us that we weren't the only clients having problems with this particular social worker and arranged for the social worker's manager to meet with us and herself in our home. He was reluctant to come on his own without the social worker but eventually agreed to do so. He was clearly horrified at the way we had both been treated by the social worker, read the message that my son had given to the social worker (which she ignored despite him saying he wanted to run away from soc services, was being treated like a schoolboy and needed time to grieve his dad) - and had son send him a copy, discussed the "concerns" the social worker had which she claimed could result in "higher action" but which she refused to tell me what the concerns were. Apparently they were that son does not want to eat/drink during his two sessions of social support - he's already had a large breakfast and eats dinner as soon as they go. Also she thought he spent to long sitting inside playing on pc, ps3 games, on his ipad and watching films - she said he should be taken to markets and craft fairs!! The last places he wants to go! He goes out playing boccia every weekend and days out with me and is taken wherever he asks to go, away for weekends to boccia competitions and on holidays. Ie there were no valid concerns! His bedtimes and getting up were discussed with the manager and I took over all hoisting the next day, allowing him to go to bed and get up when he wants. Furthermore, the social worker has been removed from son's case and we'll shortly have someone who understands young men more. The manager himself was horrified that son's mental capacity and ability to communicate had been questioned and his wish for respite care at home to allow me a break is being discussed with his care agency by the manager himself. As care contracts have been taken over in our area by a company that previously dropped son's care through lack of staff, he has now got two previously excellent social support staff back (one had an accident leading to several months off and the agency had been unable to cover his hours or supply evening hoisters hence the previously dropped contract) and son was delighted to see his previous excellent support staff back with him, the guy who had an accident actually came round as soon as he heard about my husband and has remained a friend to both of, hopefully, a desperate situation, is now being turned around.
  • newall35newall35 Member Posts: 4
    Hi Gill

    Glad to hear you finally seem to be getting somewhere. I know how stressful and tiring it can all be but never give up!

    Best wishes

  • Gill StaffordGill Stafford Member Posts: 8 Listener
    Hi Alison,
    After a very stressful few months, Gareth was visited by his new social worker last week. A lovely, lively, understanding lady in her thirties who we could both speak honestly with. She agreed that Gareth should have Care at Home rather than respite in a Care Home which he was dreading as he really prefers his own bed and all his linked up it/game players/computer. He came over very well communicating to her and certainly not afraid as he was with his former social worker. Now back with his former support assistant, he's enjoying go out and about to the seaside, town and cinema for his support sessions. Life has been a roller-coaster for both of us, but now we have restored faith that help, ifneeded, will be given without G being taken into a care home. We really appreciated Scopes help and support on this matter.
  • simonsablesimonsable Member Posts: 76 Connected
    Has your son been assessed for support this year? It seems like Social Services do not want to admit he needs full time support. I have severe Cerebral Palsy and no speech so I need to have help. I think you should write to social services and say your son has a right to live a life he want. Also, I imagine you would prefer to be just his mum, instead of his mum and his assistant. Did Social Services give you and your son reasons why is not entitled to extra help?
  • Gill StaffordGill Stafford Member Posts: 8 Listener
    Hi Simon, i'm quite happy providing G's personal care as this is what he wants at the moment. Nor does he want to leave home. His last social worker tried to foist unwanted care on him forcing him into early bedtimes and getting up according to the carers rota. He wants a later and variable bedtime/getting up time. His dad died unexpectedly and suddenly and his social worker wanted to make sudden changes to our lifestyle whereas he wants the changes he will need as he (and I) gets older to take place slowly. G accepts I will need a respite break but wants to stay in our home not a respite centre. He cannot speak but communicates via pc, ipad, text, keyboard. He does not appreciate or need someone sitting by him all the time. A long day of support will be introduced once a month so I can have a long day out and his support assistant will get him up and ready before they too go out for the day. Respite for him and me! We've now got a new social worker plus the support of the soc services physical disability support team who will provide as much support as we request, choice being what G was not given with his last soc worker. We hope to move within a few months and our soc services will work with the new authority so G has support continuity. He's also been referred to a technical centre who will provide whatever hardware and software he needs to open doors, curtains, windows etc from his iPad,.
  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    Hey Gill,

    What wonderful news- the helpline team are delighted to hear that things are much improved for you both! It sounds as though you have a great relationship with the new social worker.

    Hope the move goes smoothly - if you need any further assistance, just get in touch.


    -Scope helpline
  • simonsablesimonsable Member Posts: 76 Connected
    Excellent news. Let us know how things go with the move and your new social worker. A new start often enables people to change things to how you wan!
  • MSPMSP Member Posts: 3
    Hi My daughter has recently been diagnosed with CP. They have said she has spasticity and hemiplegia. They are recommending Botox injections she is nearly five and having read all the side effects I am really not sure it is a good idea. Has anyone else got a child of a similar age who has had botox? Really not sure it's a good idea. We are waiting to see a consultant about it
  • RockyRocky Member Posts: 76 Listener

    I am sure you know this but spasticity refers to tightness in the muscles and hemiplegia means that one side of the body is affected. Botox is currently a well known, common treatment for children with cerebral palsy especially if their muscles are right. Normally injections are given into the calf muscles (this can be a bit painful) and it allows the muscles to relax so that children find walking easier and, if they walk on tip-toe, they will be able to get their feet flat on the floor. Botox has to be accompanied by physiotherapy and usually the injections have to be repeated approximately every 6 months or so as the effects wear off.

    The use of Botox with children who have neurological conditions and musculo-skeletal issues has been around for about 20 years and numerous Studies and Clinical Trials have been under taken to demonstrate is effectiveness and safety. Doctors commonly use Botox these days as an alternative to surgery.

    In addition to talking to other parents if possible and I expect you will get further responses here, I would advise talking further to the Consultant about your concerns and get him to go through the pros and cons. You will then be in a better position to make a decision.
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