NHS Funding

I haven't written anything for sometime about my son and his hypoxic brain injury he had 6 months ago. He has come such a long way and surprised us all - although his therapists still insist that he has no mental capacity especially on his safety. He has half an hour of physio and half an hour occupational therapy Monday to Friday and he has SLT once a week. the rest of the time he sits in a chair with a HCA sitting with him watching him. As a family we feel that he would benefit from more physio and occupation therapy, but that is all that he is allocated as there are 34 other patients on the rehab ward. NHS funding was applied for continuing care and this has been refused. The next course is social services and although he has a really good care manager who has spoken to him and both her and her colleague agreed that he does have mental capacity.

He has been on Lorazepam which made him like a Zombie and caused really bad ataxia and then he was put on Mirtazepam which also made him like a zombie and he even stopped talking out loud and could only whisper on both occasions we have asked that this medication be stopped and eventually this was cut down and stopped although he is still on 15mg of the Mirtazepam.

I know that my son switches off when any of the therapists ask him questions and when I ask him why he does this he says they are idiots and what is the point they don't take any notice of him anyway. I know what he means as there was an occasion a few months ago when the occupational therapist was going to take him into the potting shed and he tried to put my son's jacket on and he couldn't and then told us that we had to get him a new jacket as he couldn't get it on and my son became very agitated (the jacket was ok and I helped him put it on two days after with no problems)

I feel very scared at the moment because they are saying that he will have to go into a nursing home or a care home where he will be safe and they are planning a best interest meeting soon. I keep saying to these therapists and his Consultant Physiologist that he doesn't have dementia. or learning difficulties or mental health issues - He has a brain injury and a care home is not the best place for him.

His partner wants him home and SS will be able to send in some carers to help and we are quite happy to pay for private neuro physiotherapy. As him mother I think he will thrive a lot more once he is in his own home and there is enough family close by to help out.

Can these people force him into a nursing/care home ??

8 Replies

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  • After my husband's bi there was a meeting with all the staff at the hospital and they wanted to put him into a care home. My son (who was only 20 at the time) and I fought and fought them to get him home. They eventually agreed to a trial home residency and I brought him home. Make no mistake though, it is absolutely not easy. It nearly broke me. Caring for someone like that 24/7 is so difficult. However, when he was at home I devised a system of brain training for him. At first he could do almost nothing. We started off with simple things - putting the knives and forks on the table in the correct place, playing snakes and ladders and gradually built up the difficulty as he learned. His frustration was dreadful and we had major episodes of problem behaviour.

    He progressed to the extent that the doctors were amazed and he stayed at home. We had no help whatsoever, one week at a day centre was all.

    Please be aware that you will be giving up a huge part of your life if he comes home and, whilst you obviously want what's best for him, think of the impact on all the family too.

    The very best wishes to you all.

    jan x

  • Thanks Jan my son's partner is an amazing person and says that he is her world and she just wants to get him home again - we have quite a big family and we are all committed to seeing him get better and take on board what you have experienced - he is so low in hospital all these months and its like he just wants to give up.

  • I really hope that you are keeping a log of all these times when your son will communicate/comply with you and not the professionals.

    Has he had a neuropsychology assessment? Assuming that he understands and can remember conversations you would need to get him to understand that it is the best way to find out how to best help.

    If the medical staff are saying that there is no function you would need to demonstrate the complete opposite or they may have the power to put him in a home.

    Ring Headway helpline tomorrow for advice about it. They know a lot more than i do.

    Love n hugs

    Xoxk

  • We have everything on video - when they say he doesn't speak to them we show them the video and they just shrug their shoulders - The SLT say he doesn't have the capacity to make his decisions regarding his welfare and summing up the risks - once a week her trainee sits with my son making silly noises and he just ignores her I have sat in on these sessions and afterwards I have asked him why does he not respond and he says he doesn't want to - again not helpful and he does need to realise that he needs to up his game.

    The SS care manager came to see him and he really got on well with her - she called him by his name and asked whether he minded answering a few questions and they had a good session and she showed him the report which he read and signed. She and her colleague were taken aback when we told them that his therapists said he had no capacity and they disagreed.

    We have just heard that there will be a best interest meeting next week and the SS care manager said she will go through everything with a fine tooth comb,

    I will take your advice and ring headway

    thanks

  • Will you be able to present your case at this best interest meeting?

    Depending on where the injury is it may be the case that your son can only be rational around you or people he connects with like the the SS worker. Has his girlfriend had similar experiences to yours?

    Love n hugs

    Xoxo

  • Hi it sounds like you are all being steam rollered, the problem with the nhs, doctors and staff they really don't know how to listen only to talk. You are the best people to tell them what he is and isn't like and what would help him. If you have services sent up social services or private care then go for it. If it was me I would get together with his wife and act as a united front. I've had to take on the nhs and sometimes in some cases you have to fight x I hope you get things sorted for him, and I hope he will be ok

  • thank you

    I think the best thing for him is to get home to his partner and house and out of the hospital environment as he has been there far too long and all they want to do is give him medication to keep him quiet and manageable. He has only just managed to find his voice again after all the medication they have been pumping into him - they humiliate him by putting diapers on his when he is continent but he needs help to get up out of his chair - once he is up he can walk but they insist on grabbing him by the arms and take him to the toilet and to take of the diaper letting him go and then putting another one on.

    One good thing is that the SS care manager can see that he has capacity and she has the final say apparently as it will be down to SS to fund whatever he needs.

  • I really hope you get something sorted for him, make sure they know what he wants and needs. Unfortunately a patient can be just seen as a body, and they forget dignity, and emotional needs. As his wife and his mother the two of you know him best x

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