Hi everyone.
My brother (51) has secondary stage MS and is in his own home but is bedridden. He has a hoist but the carers will not use it and is currently in nappies as no one can take him to the toilet. ( he can spend 2 hours trying to go) He has liquids thickened so he does not choke on them but is ok to eat most food. His movement is limited. He can speak and uses Alexa to control his environment. He can turn lights on and off, control the tv, answer phones, open the front door and see who is there. Up to now his wife has been coping with one carer in the morning but she is now suffering severe depression and is also ill so she has gone to stay with her daughter as she cannot cope with his care any more. There are now 4 carers coming in ( after a respite care disaster that couldn’t meet his needs) each day but he never ever leaves his bed even though there is a single person use hoist. The changing of his mattress is left to my 81 year old dad and 85 year old mum( who is suffering from dementia) who visit once a week. Can we get funding for someone to take him out of his bed for a walk so he doesn’t die from lack of movement? Do we ask for different carers? Will some agree to a single person use hoist so he can have a shower? Should we be looking for care homes to meet his needs or can we provide for his needs in his own home? On top of this - how do we pay for it all? I have been gradually looking for advise but I would love to hear from other people as it does feel like we are alone in all the tricky decisions that surround it all.
Absolutely need to be talking to your local OT’s (Occupational Therapists) in County or Unitary authority. It comes under Adult Social Care and they will be committed to maintaining independent living rather than residential care if it is still viable.
Hi, there. Your post really incensed me and my hubby. I am paraplegic and have 2 ceiling hoists at home, which are usable with I carer. I have some upper body strength so can assist.
Your brother’s situation is appalling to say he does have carers.
Yes, you must INSIST his carers see to all his needs. I dont understand why this has got so bad.
Has he had a care assessment from Social Services? Even if it was some time ago, he needs a new. Please get on to them ASAP.
Boudsx
Thank you so much for your reply. I have emailed the social worker again today to explain his needs. It really helps hearing from you. My brother has some upper body strength and can hold on and also instruct them. I have phoned the care company but they refuse to use a hoist without 2 people and there is not space in his tiny room for 2 people. Your reply has encouraged me that I have the right to keep fighting this until they can provide the correct care. Unfortunately my brother doesn’t have the energy any more to fight his own case and I hadn’t realised quite how bad it had got. He has deteriorated significantly in the last year and now suffers from some memory loss. I live 4 hours drive away and don’t go down much but will be fighting his corner now as best as I can.
If you want to start getting really militant with them, start quoting the care act 2014. It spells out their duty of care to their service users (public sector-speak for customers).
Read Care Act - Easy Read or the Full-on version - Care Act 2014
In short: they’re not measuring up 
Thank you. It is so useful having advise like this as it gives me a little bit more sway when talking to them.
I do have another question ( may need a separate post for this )which may help with his care and this is the use of a profiling bed. Has anyone used one? He does have a bed very similar to this which is wider but the mattress is too hard for the carers to change. How do other people make sure the sheets stay on the mattress when someone is turning about on them?
Anne
Your brother’s “care” sounds appalling. No one should be left in those circumstances. I understand that resources are limited but social services need to step up to protect vulnerable people. If they don’t there will be even higher additional costs involved when other family members are “broken”
If you can make a fuss I would do so, I would want to share these issues with the press & local politicians. Just not good eough in this day and age.
I really hope that things can be improved for you & your family.
Mick
Thanks Mick. It is absolutely awful just now - I hadn’t realised how bad it was. I am fighting his case quite hard just now and starting to understand the system. I will ask for a different care package if they can’t offer the correct care. In the meantime his life is still so bad. He never ever leaves his bed at the moment. I am also asking for social care like someone to take him out in a lie down wheelchair. Is this also something that should be offered?
Anne
Anne,
Sadly I have no knowledge of what is or should be offered, so I would be hammering questions into the GP / Neuro team /Social services. If none of these have info I would try Citizens Advice or even just looking at the MS society page https://www.mssociety.org.uk/care-and-support
Good luck
Mick
Hi
I realise I haven’t clarified that until now his wife had been coping with the hoist alone and due to difficulties with toileting he could be 2 hours trying to go and it could be in the middle of the night as he didn’t have a lot of control and couldn’t quite tell when he needed to go. He had one carer in the morning and didn’t get any more because his wife didn’t like them in the house. She has left to stay with her daughter because she couldn’t cope and is suffering from her own illnesses and depression. This was the reason they tried to get respite care at a care home and this didn’t meet his needs ( draughty louvered windows and emergency button out of reach) The social worker is trying to get the current carers to use the hoist as my brother is now alone but they won’t use it unless 2 people are there and social work say that they can not pay for 2 people when it is a one man hoist. It’s all so complicated. I am now working closely with the social worker but until then his situation has become awful. He previously had the same care team for his morning care but they would not feed him as he is poor at swallowing ( his drinks need thickening) - they were afraid of chocking him. He is able to tell people what is ok and what is not though. We are looking at care home but there are no beds and also looking for other care options. I am also trying to see if someone can also take him out ( social care?) as I now realise none of this was happening with his wife being the prime carer as she was not coping. It is absolutely awful and so hard to try and make everything right. Lots of added complications as well. It is good for me to share this as it helps to message with people who have an understanding of MS and the impact it can have. He has deteriorated quite a lot in the last year.
Hi again. Hopefully the social worker will be in touch soon.
I have had 4 different care agencies…all ended badly, with no shows, late arrivals and requested jobs not done.
When I first interviewed them, they said 2 carers for hoisting were needed. I said no, if that’s their rule then I wouldnt employ them…they had to agree with my request or not get the work.
Fight the good fight.
Boudsxx
Thank you. I think the social worker may be looking for another agency but due to covid none are currently available. I think I probably have the right to ask, in the meanwhile, for them to provide 2 carers so the hoist is used and the bed is changed as his needs still need to be met despite the extra cost. What do you think?
Anne
Hi Anne
I refer you back to my earlier answer. The Care Act 2014 is their bible. It’s not what could or should happen but what happens in practice and hence the quality of care. In assessing for independent living, the OT’s should take account the capability of the informal / unpaid carer as well as the theoretical performance of a certain piece of equipment in isolation. They may need reminding of that.
Graeme
It is useful knowing about these documents and helps having this knowledge of the care that should be provided.
Thanks
Anne
Yes, you do have every right. Tell them what you have said here. Your brother has right to all the services the agency offers.
Have you thought about trying to find carers directly employed by your brother? They can be hard to find, but are so much better than agencies.
Boudsx
Another useful site, designed for informal carers such as you:
https://www.elder.org/
If the care does not improve we may need to do this. Thanks for the suggestion. I am worried that doing this would be hard to organise as the payment is only partially paid by my brother and he is no longer able to organise things himself as his memory is going. He is generally quite reliant on what the social worker is organising and she is trying to do a good job but I think the services are just not available. I will definitely bear it in mind if we can’t sort it out though. Thanks
Anne
Thanks. These links are really useful.
Anne