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Alig2014
3rd September 2014, 16:20
Hi we are really having problems with Jeans OT. Since she lost use of her legs in December 2013 we have been using a toileting sling which is easy to get on without pulling her about too much. We have been in a constant battle with her OT as he insists she should be using a full hoist and has twice tried to take it away from her. Luckily the care agency has stepped in and so has her GP and we have been able to keep it so far.

Now Jean is showing weakness in her neck it has all kicked off again. I know there is a toilet sling with a high back that will support her neck but he is insistent.

Jeans lack of mobility means she has painful joints and on the occasions they have used a full sling in hospital it has been an ordeal for her. She can't lie flat on her back without screaming in pain. I can't see the benefit at all. He basically wants me to hoist her from chair to bed and remove her undergarments which would mean she would lay down. Then hoist back onto commode bearing on mind a full sling will sit under her bottom and then have to be pulled out against her bare skin. Then put hoist back on against bare skin (surely this will cause damage or create sores) hoist back on bed to lay down and put undergarments back on and then hoist back onto chair.

Am I just being stupid. I feel this is an impossible situation and Jean really doesn't need to keep battling against the world worst OT.

Feeling so mad right now.

Any advice would be much appreciated.

Alison

Terry
3rd September 2014, 17:28
Hi Alison;

Don't let OT's take any equipment away that works until you have another that does a better job and works. So often they take gear away on health and safety reasons and leave nothing, then carers go out and buy similar equipment and use it safely for another year.

Quite often OT's don't look at the real world, it sounds a days work just to go to the loo. It is always good to have access to two or more OT's and there should be a different one in the hospice. I would ask the hospice for help and advice.

I can understand your frustration, careering can be a time consuming business and some people think we have all the time in the world to fight for things whilst we sit in a chair drinking coffee with our feet up.

See if hospice can help or see if you can change your OT.

Good luck and be firm, love Terry

Alig2014
3rd September 2014, 18:18
Thanks Terry,

Will see what happens Monday and see if she is referred to hospice care or mnd care team. Once I know what's on the table I can ask for things.

I know it might upset Jean but I really think it would be good to go to hospice for weekend once a month or something so they get to know her rather than waiting until it's necessary. Would be nice to have a weekend off now and then. I feel a bit selfish wanting it but eight months is a long time without a break and I'm sure things are going to get tougher

Alison x

willsandco
3rd September 2014, 18:47
I think hospice is the answer. They are so kind there, so compassionate. Jean might well benefit from the change of environment,
See if you can persuade her to go, irrespective of the diagnosis. x

Alig2014
3rd September 2014, 19:01
I did mention it this morning, but bless her whenever I say things like this she takes it that I don't want to look after her any more which isn't he case. I love her a lot and promised her she would be home until it was medically necessary for her to be somewhere else.

My mother spent her last few days in a Sue a Ryder hospice (lung cancer) and it was the most wonderful place. Jean hasn't had a bath or shower for two years. It would be great to think she would get pampered a bit while she's there.

We did get a call today to say they are starting her wet room on Monday which is great, after an eight month wait.

Why does everything take so long

willsandco
3rd September 2014, 19:04
well, Alison, that is really good news. Things might be looking up for you and her now. x

Terry
3rd September 2014, 19:36
You can ring the hospice and get a connection now. They might not be able to do a weekend a month but I know they will help in many ways and probably take her in either for day care and/or provide her with accommodation for a while.

Terry

Alig2014
3rd September 2014, 20:19
Thanks for the advice . Really appreciate it x

Jackie
4th September 2014, 07:08
Hi Alison
My Mum is now needing a hoist . We had a OT come last Friday. mum needs a toileting sling as you described because of her neck. We were told the wait was 12 weeks. So we have purchase the sling ourselves ,I ordered it on Monday it's coming tomorrow ! The coast was 180.00 .
It's a terrible you can't get what you need as and when you need it ! Especially when there has been so much money raised recently ! It makes my blood boil.
Hope you get thing sorted soon . If it's not bad enough to see our loved ones suffering this awful disease , that getting help and the equipment we need is so very difficult !!!
Jackie x

Alig2014
4th September 2014, 07:54
I know what you mean, but the money raised is going straight to MNDA/ALS where the OT is getting things through NHS.

In this day and age with emails and online shopping it's ridiculous that wait times are so long. You would think someone would assess you email through to whoever orders the equipment and then they go online and order it. It should take a week tops. With this disease there isn't time to wait. There is a toileting sling with head rest in stock on the NRS website where all her equipment has come from so far. There really is no excuse for it.

Makes you wonder if that's why they hold back so we just pay it ourselves and save them money

Alison

miranda
4th September 2014, 13:14
Jackie and Alison - you could contact your local mnda branch for financial help if NHS do not supply equipment or there is an unacceptable delay (12 weeks is unreasonable). I suggest you contact MND connect to check the procedure. This is why branches raise money - to help support people with MND .

Barry52
4th September 2014, 14:44
Miranda's comments hit the nail on the head. I am a committee member of the Lincolnshire MNDA group and we use the money raised by the branch to meet the equipment needs of families living with MND. Ring or email your local branch with your request. You can find the contact details on this website.
Good luck and best wishes.
Barry

Alig2014
4th September 2014, 19:25
Thankyou, that information is really helpful. OT is visiting a week Monday so if he digs his heels in I will give them a call

Alison x

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