Sorry this is new to us. BIL sustained damaged to front temple lobe and other areas following a fit. This happened on 6th Dec. He has received appalling treatment from the beginning and we are complaining about that.
Problem is his rehab place want to discharge him back to a flat on his own (in London) we all live in Dorset. He is child like, has palsy in his right eye so has double visions, he is weak down his right side and finds it hard to walk. They are expecting him to walk up 3 flights of concrete stairs. He cant see to take medication. He has no friends or family locally.
I am going up to London tomorrow to try and get some answers. We havent had any copies of assessments, or minutes from meetings are a care plan. We are just refusing to let him be discharge at moment.
At wits end with all the bureaucracy. Been past from Social Services back to rehab centre who are intimidating my mother in law of 75yrs and also trying to say that his family dont want whats best for him.
Does anyone have any pointers. I know I am going to be hitting my head against a brick wall tomorrow. I have left a message asking the discharge manager for his enable worker but no-one rings back!!
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michellek
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typical of nhs i was told i was too expensive to keep and told to clear off despite having nowhere to go alll i can suggest to get here in safe home near you is see your mp citizens advice and adult soc services headwayand get a letter from your gp stating what he needs as a sufferer i can say to be close to family and friends is vitally important durinbg recovery have a few mates in london hospitals which one ill see if one of them can help good luck me thinks you will need it
Contact Headway, hopefully they will have some advice to help you. I just found out plans are under way to discharge my Dad. He cannot walk or talk and requires assistance with everything. Fortunately he has his wife at home and they are saying he will have therapists and careers visiting regularly but I still feel shocked that this is happening. Good luck, I hope you manage to find a solution x
This happened to my brother. We had to lodge an appeal with the Primary Care Trust (PCT) that was funding his care. They eventually got a specialist out to reassess his needs and he was moved to further rehabilitation. Like you, we refused to allow them to move our brother until this was resolved and I think that once you have appealed they cannot move him until the appeal is concluded. The staff at my brother's rehab were also really intimidating and this continued all the way through the appeal period but we stuck to our guns and got the rehab my brother needed. Once rehab is concluded it is Continuing Care that should be assessing his needs for a return to the community and his social worker should be organising that. This should include a re-assessment of his housing needs as well as care needs. Moving BIL to another county is difficult because other counties are not keen to take on the costs and responsibility involved but it can be done, our brother was eventually moved from Kent to Herts where we live. The whole process seems designed to wear you down until you accept the level of care they propose but if you stick to what you think is right and fight on BIL's behalf you can get BIL what he needs. Contacting his local MP will also help to add pressure.
Thank you for your question. I just wanted to support the excellent advice given by our other members.
If he is to be discharged home and has complex needs, he should be receiving an NHS continuing care assessment. You can find out more about this at nhs.uk/CarersDirect/guide/p...
At the very least, as Katebock says, this should include an assessment of his housing and care needs, and additionally if he qualifies for NHS continuing care it could include any further out-patient rehabilitation, such as physiotherapy and occupational therapy. It seems like at this stage the possibility of a transfer to a longer-term in-patient rehabilitation unit should be considered too.
It might be worth contacting the PALS (Patient Advice and Liaison Service) in his local hospital for support, as they are supposed to be there to act as an independent advocate in cases such as this. His GP may be able to provide support and referrals too, and his local MP could be a good option for adding pressure.
Can I suggest that, if the meeting today doesn't end to your satisfaction, you contact our helpline to discuss this in a bit more detail? You can contact them on 0808 800 2244 or helpline@headway.org.uk. They can discuss further rehabilitation options, local Headway services and other help you might be able to access for him.
Best wishes, and I hope the meeting today goes well. Please do keep us updated.
Headway.
The major issue appears to be that there simply are not enough NHS in-patient beds for brain injured patients in the UK and it is worse in some regions that others. This is shotsighted of the NHS as brain injured patients sent home before they are ready have all sorts of issues that often result in more treatment for injuries/mental health problems etc............
My husband was kept in an acute hospital until there was a place available on the NHS and we had been told in advance that the maximum stay in the NHS centre was 12 weeks at which point social services have to step in and provide and alternative.....yet the alternatives are few and far between in some regions. We live in Worcestershire and the NHS offering is next to zero - so we had to travel to Birmingham
In the time that we waited for the NHS bed to become available we secured a place in a private neuro rehab centre - where the average stay is 6 months, many stay longer as required some are lucky enough to leave earlier!!! However this was not cheap and it took a good deal of our savings - having said that we were lucky enough to be able to do this and the right care was provided at the right time.
On leaving in-patient care we were advised to seek ongoing out-patient treatment from a neuro psychologist. We found ourselves paying for this again as the waiting list for this on NHS was 17 weeks yet the care was required immediately if recovery was to be maximised. Ironically the psychologist we paid for was the very same psychologist that we would have been referred to on the NHS if we had been prepared to wait 17 weeks - by paying we were seen immediately.
UK government really needs to review this situation - the cost of not looking after brain injured patients properly probably exceeds the cost of looking after them properly immediately after the accident/incident.........
It is frustrating to say the least. Don't let them intimidate you demand the care that you deserve. They will be desperate to move you on as they will also be getting a hard time from those waiting for one of the few beds that they have.........
I do hope that you find a solution soon............
The major issue appears to be that there simply are not enough NHS in-patient beds for brain injured patients in the UK and it is worse in some regions that others. This is shotsighted of the NHS as brain injured patients sent home before they are ready have all sorts of issues that often result in more treatment for injuries/mental health problems etc............
My husband was kept in an acute hospital until there was a place available on the NHS and we had been told in advance that the maximum stay in the NHS centre was 12 weeks at which point social services have to step in and provide and alternative.....yet the alternatives are few and far between in some regions. We live in Worcestershire and the NHS offering is next to zero - so we had to travel to Birmingham
In the time that we waited for the NHS bed to become available we secured a place in a private neuro rehab centre - where the average stay is 6 months, many stay longer as required some are lucky enough to leave earlier!!! However this was not cheap and it took a good deal of our savings - having said that we were lucky enough to be able to do this and the right care was provided at the right time.
On leaving in-patient care we were advised to seek ongoing out-patient treatment from a neuro psychologist. We found ourselves paying for this again as the waiting list for this on NHS was 17 weeks yet the care was required immediately if recovery was to be maximised. Ironically the psychologist we paid for was the very same psychologist that we would have been referred to on the NHS if we had been prepared to wait 17 weeks - by paying we were seen immediately.
UK government really needs to review this situation - the cost of not looking after brain injured patients properly probably exceeds the cost of looking after them properly immediately after the accident/incident.........
It is frustrating to say the least. Don't let them intimidate you demand the care that you deserve. They will be desperate to move you on as they will also be getting a hard time from those waiting for one of the few beds that they have.........
I do hope that you find a solution soon............
The major issue appears to be that there simply are not enough NHS in-patient beds for brain injured patients in the UK and it is worse in some regions that others. This is shotsighted of the NHS as brain injured patients sent home before they are ready have all sorts of issues that often result in more treatment for injuries/mental health problems etc............
My husband was kept in an acute hospital until there was a place available on the NHS and we had been told in advance that the maximum stay in the NHS centre was 12 weeks at which point social services have to step in and provide and alternative.....yet the alternatives are few and far between in some regions. We live in Worcestershire and the NHS offering is next to zero - so we had to travel to Birmingham
In the time that we waited for the NHS bed to become available we secured a place in a private neuro rehab centre - where the average stay is 6 months, many stay longer as required some are lucky enough to leave earlier!!! However this was not cheap and it took a good deal of our savings - having said that we were lucky enough to be able to do this and the right care was provided at the right time.
On leaving in-patient care we were advised to seek ongoing out-patient treatment from a neuro psychologist. We found ourselves paying for this again as the waiting list for this on NHS was 17 weeks yet the care was required immediately if recovery was to be maximised. Ironically the psychologist we paid for was the very same psychologist that we would have been referred to on the NHS if we had been prepared to wait 17 weeks - by paying we were seen immediately.
UK government really needs to review this situation - the cost of not looking after brain injured patients properly probably exceeds the cost of looking after them properly immediately after the accident/incident.........
It is frustrating to say the least. Don't let them intimidate you demand the care that you deserve. They will be desperate to move you on as they will also be getting a hard time from those waiting for one of the few beds that they have.........
I do hope that you find a solution soon............
The major issue appears to be that there simply are not enough NHS in-patient beds for brain injured patients in the UK and it is worse in some regions that others. This is shotsighted of the NHS as brain injured patients sent home before they are ready have all sorts of issues that often result in more treatment for injuries/mental health problems etc............
My husband was kept in an acute hospital until there was a place available on the NHS and we had been told in advance that the maximum stay in the NHS centre was 12 weeks at which point social services have to step in and provide and alternative.....yet the alternatives are few and far between in some regions. We live in Worcestershire and the NHS offering is next to zero - so we had to travel to Birmingham
In the time that we waited for the NHS bed to become available we secured a place in a private neuro rehab centre - where the average stay is 6 months, many stay longer as required some are lucky enough to leave earlier!!! However this was not cheap and it took a good deal of our savings - having said that we were lucky enough to be able to do this and the right care was provided at the right time.
On leaving in-patient care we were advised to seek ongoing out-patient treatment from a neuro psychologist. We found ourselves paying for this again as the waiting list for this on NHS was 17 weeks yet the care was required immediately if recovery was to be maximised. Ironically the psychologist we paid for was the very same psychologist that we would have been referred to on the NHS if we had been prepared to wait 17 weeks - by paying we were seen immediately.
UK government really needs to review this situation - the cost of not looking after brain injured patients properly probably exceeds the cost of looking after them properly immediately after the accident/incident.........
It is frustrating to say the least. Don't let them intimidate you demand the care that you deserve. They will be desperate to move you on as they will also be getting a hard time from those waiting for one of the few beds that they have.........
I do hope that you find a solution soon............
Went up to London yesterday, did contact Headway, but they didnt get back to me til I got home from the meeting. so went in a bit blind! They want to move him out under the "Renablement Team" - he will have specialist carers 3 times a day to support cooking, medicine, washing, shopping, as well as receiving therapy at home from OT, Speech, Psychiatrist. I did seem happier, but have said that he is not going back to his flat unless the cooker is changed, the toilet is fixed, the security entry is fixed even if this means a keypad on his own flat door. Also I said I wasnt moving him until his benefits were in place and they had sorted out emergency funding (otherwise no point someone helping him to cook INDEPENDANTLY if there is no food!!!!) I also said he woulnt be going home til we had sight of the care plan in writing. They said they will be continually assessing him for 6 weeks, if he doesnt make significant progress, he will be attended to by Adult Social Services who will need to put a long-term care plan into place. Thank you for the comment about the housing issue, he is on the 3rd floor, there are four steps at a time in a twist till you get to his flat. Trouble is he wants to go back to his flat. He is amongst much older stroke victims and looking around the ward yesterday, I could see why he wanted out and he got upset when I said just a few more days til I can get everything sorted out for him.
The trouble is you know once he moves on he is someone elses problem. I have probably spoken to every single person in Adult Social Services and have all there names!!!!! If anyone dares put a foot wrong I will be sighting Safeguarding. I can see that he would be better off in his flat as long as he is safe, and he gets the care they are promising - one missed visit and I will be waiting.
His sister has already started a complaints procedure, seeing as the ambulance didnt turn up for 2 1/2hrs when he had the fit, then with blood pouring out of his eyes they made in walk down the 3 flights of stairs!!!! I wont go on cos Im worn out with it, Im on half term from school and already 5 of my days have been spent fighting bureaucracy - think there might be a few more days spent like that.!!!
Thank you all so much for the support and good luck to you all. Fight the good fight and dont let the b******s grind you down. x
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