The OT has been here again today assessing John's needs ready to come home she had never heard of PSP when she visited last week. She does not want us to have a hospital bed and certainly not one where the sides go up as she said it is a 'deprivation of his liberty'. Has anyone one else had this problem? Pauline x
Hospital bed'. : The OT has been here again... - PSP Association
Hospital bed'.
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Dickenson2
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Hi Pauline
When I was bringing my lady home from a hospital stay for treatment of UTI, her Social Care Assessor told me that I couldn't use "bedsides" for that reason. As she had gotten used to them whilst in hospital and I was staying with her overnight, I couldn't see what the problem was!! My arguement was that it was safer for her and we finally agreed to just using the side furthest from the bathroom door. However, the very first night at home she requested that both sides were up!! He was not very happy when I told him but it was at her request and she had ALL her faculties so he couldn't argue!
If John has been used to having the bedsides up in hospital, he NEEDS to have them available at home. The sides are also useful to aid the person in bed to turn over and can be put up and down as required.
Ask the OT if she is prepared to accept full responsibility for any falls caused by John trying to "do" by himself? Explain that you are NOT trying to deprive him of his liberty, but you have a duty to keep him safe!
Ask if the use of the bedsides in hospital is considered to be a "deprivation of liberty"? If not, what is the difference?
Best of luck!
Xxx
Unfortunately there is a lot of this.
Deprivation of Liberty is poorly understood by many professionals who don't use it regularly and who haven't had training in it. A person only comes under the Dep. of Lib. Safeguards if they are in a care/nursing home or hospital... It does not apply to home settings.
However you can always ask that the check with the local 'Best Interest Assessor Team' Who are there for consultation amongst other things. They are usually part of the Social Services.
I think I shall do a post laying out the law on this in the next week. It seems to be so common.
Hi Pauline
Oh, that OT's response makes me cross!
We had a nursing home who refused to put the bed sides up when my wife asked for it. They then made an emergency application under the Safeguarding procedures to ensure they were not breaking the rules - Damned silly. The next home just asked Liz what she wanted and when she said bed sides up for safety they just did it. I would ask the OT why she thinks the beds come with sides!
If John has the mental capacity to make that decision then no Deprivation of Liberty is taking place - Simple.
If he does not have capacity to make that decision and you have an LPA for Health and Welfare then following a test for him making a capacitous decision and failing, that could be activated and you then can make the decision. However this is very disempowering for him.
Having mental capacity is merely, "him understanding *whatever* and retaining the information long enough to agree or disagree." That is the 'mental capacity test' under the Mental Capacity Act (2005) . He can convey his answer in any way that works - even eye blinks. The test is only for that decision and cannot be used for any other decision which needs to be made, so it is not a declaration og being mentally incapacitated for other things.
If he does not have the capacity then she should be seeking a capacity test for that decision only and if he is unable to make the decision then a 'Best Interest Decision' needs to be made and that is just about certain to be the decision you choose. (That is written into the Act).
She has walked away with the job half done.
His safety is crucial - If John is able to make that decision I would telephone the OT and say that you believe he has capacity within the meaning of the Mental Capacity Act and he has decided he wants a hospital bed with sides. Otherwise you want a Capacity Test with a 'Best Interest Decision' made if required.She will understand this language and it should hit home in terms of reminding her of her professional duty.
Personally I would also request that she reads the article for OTs on the PSPA website so that she is informed about the persons condition whom she is assessing!!!
pspassociation.org.uk/app/u...
She cannot assess his risks (another key word) without being aware of the danger he might present to himself with regard to PSP impulsiveness and other risks.
I have made quite a few assumptions here about John's condition, but I hope some of this is useful.
Do come back to me if you want any further info. or clarification.
Yes, you have probably guessed, I used to assess Deprivation of Liberty and Mental Capacity under the Act as one of my areas of work.
Best to you
Kevin
Thank you so much Kevin, you always amaze m with your knowledge xx
Thank you.
I do my best. 
And I do have horrendous blank spots on all of this too.
I'm so sorry you have to deal with this on top of PSP and caring.
Do come back if you want as it progresses.
Good luck.
xx
I second that! Good info - even for another country with different legislation 
Anne G.
Dear Pauline
How immensely frustrating!!!!
My husband has a hospital bed and I do find it really helpful and backsaving for me. I can raise the bed and sit him up to give drinks meds etc and it helps him to get out of bed.
We tried the bedsides and they didn’t work for my husband (tried to climb over them) so we pushed the hospital bed against another bed which protects one side and we use a curved bedpeg ( u shaped bar that goes under the mattress and sticks up as a grab handle) OT told me this was unconventional but conceded it worked for my husband we have used this system for 15 months without mishap.
Stand your ground and use all of Kevin’s pointers. I would hope the OT has gone away and looked up PSP poor show that she hadn’t done that before visiting you!!
So sorry to hear of this hurdle
Take care of yourself, hope the hand physio is going well
Love Tippy
No physio Tippy but actually have hospital appointment Sat, o lay waited since Jan . Did you get your CHC sorted xx
Good luck for Saturday.
My husband’s CHC application was submitted last week .........
Love Tippy
An example of bureaucracy gone mad !!!
A hospital bed solves so many issues. Let her try to nurse at home without one. Once you are alone who knows what goes on ? Why do we have so many battles ?
love Jean xx
Jean she does not even want me to have a hospital bed. Said there is no reason he cannot sleep in our bed and I use a slip sheet to move him !! Xx
As folk here are saying - A hospital bed makes moving and handling so much easier. I used to raise the bed up vertically and Liz would be half standing when she put her legs over the side. That made transfers so easy compared to lifting her up from a normal bed height. When she became less able being able to raise her head end for drinks or to watch telly made her life better.
They are a must have.
xx
( I see another string in the future...when is it time for a hospital bed?...)
Again a simple answer, when you can't cope without one. Steve never had one, i know life would have been easier if I had requested one, but that was one battle, I refused to give in to. I wanted my husband in my bed, regardless of the hassle and one I will never regret.
Lots of love
Anne
Does he have incontinence issues ? Most with PSP have that sooner or later.
I don't understand. They offered me a hospital bed as soon as I wanted one. Don't have him home without one.
You also need to be able to raise the bed and raise him up. What planet is she on ? xxx
There is a very good reason for having a hospital bed. It prevents pressure sores and a possible admission to hospital! My husband got pressure sores in the space of 24 hours from using our bed!! So tell the stupid woman that. If you can print off the PSP advice and highlight the important issues, hand it to her and ask her to read what they suggest! God these people make me so angry! Why if you work in the NHS does it make you an expert on everything? It just isn't the case. It's arrogance pure and simple!
Good luck with this.
Marie x
ask for a visit from a district nurse [long term conditions nurse] as soon as she saw us she ordered a hospital bed with rails its been a godsend I even use it to help get my husband if he falls in the bedroom she also had no knowledge of psp so I gave here the paper work we get from the association she has been a star and she listens hope this helps
Oh my god Pauline can’t believe this, you need to insist on a hospital bed, you have hurt yourself a few time, had your arm in plaster, this is totally unfair, so many of us have hospital beds. You need to keep on about them being unpredictable, you need the sides up in case he falls out. Kevin is our lifeline on here, what would we do without his advice. Stay strong Pauline, don’t bring John home until everything is in place. Yvonne xxxx
Sorry but i totally disagree with your OT. A hospital bed with sides and an airflow mattress is essential for Johns needs. The bed side rails can be kept down while he has someone with him and the airflow mattress will help stop bedsores and is more comfortable than a plain mattress. I feel you should strongly insist on these items and as your OT has never heard of PSP she/he needs to be made aware of how unpredictable and complex this illness is. Jxx
I insisted on full length bed rails after Ben wriggled out of bed with the three quarter length rails and ended up having to call the paramedics to get him up. He has suffered one broken hip through a fall and certainly doesn't want another. How do they expect you to get an sleep worrying about him falling out of bed Pauline!
Sending lots of love
Kate xxx
Do I gather it's the community OT who has assessed you as not needing it? If so perhaps you could ask for a second opinion. Or get the opinion of the hospital OT. Surely one of them will see sense.
If you win the fight for the hospital bed what you do with it in your own home is up to you.
Not one person on this site is going to see it as a deprivation of liberty to use the rails.
If you get discharged with a hospital bed without rails that can be rectified later.
I had no problem. Jon was discharged in September with a bed with sides and nobody ever mentioned DoL.
As for an OT visiting you at home, are they going to take you to court? Are they going to come out every evening to ensure you don't put the sides up? No way.
Good luck with the fight. It breaks my heart reading of the struggles everyone is going through.
Rosemary Rx
I think I would ask her to come back and re-assess, after she has had full training about the ins and outs of PSP. Whatever happened to safe guarding and duty of care?
I use to get so cross, all these so called professionals, telling US about a disease they had never heard of!
Lots of love
Anne
During my husband’s last 6 weeks of life,in hospital and nursing home, most of the medical professionals I encountered had no knowledge of PSP. It was a constant frustration having to explain things to them.
Hi Pauline
I bought my own hospital bed with cot sides and it is one of only two places that I feel truly safe, the other being my special reclining chair which I also bought. I have CBD and have absolutely no balance so I can fall very easily. Andrew has to follow me and assist me with every move I make. It gives him a better nights sleep knowing that I am safely tucked up in bed. So few professionals understand that being and feeling safe is far more important than restriction of liberty. John would be far worse off if he fell out of bed and broke his hip or arm. Why not ask him if you are able to see how he feels. Sometimes you have to be firm with the professionals and let your common sense override their “expert” opinion and PC rules and regulations. I hope this helps coming from the patients poin of view. Good luck.
Jackie C
My husband recently stayed for the first time, in our local hospice ward for a few days of respite. Whilst he was in there, I noticed that there were no bedrails on any of the beds.At home we have a hospital bed with bedrails that go up or down, I need them to make it safe for my husband when I turn him on the bed, for changing, couldn't manage without them actually.
Unfortunately, whilst in the hospice, my husband fell out of bed and banged his head! I don't know how it happened because he doesn't move about normally whilst in bed, except for a few jerks, now and then. I asked why there were no bedrails on the beds and was told that, they were seen as a constraint!!!
The only way they could make him safe in bed after the fall, was to put him in a tiny room, with a low bed against a wall and a foam mattress on the floor next to the bed!
Dx
The hospice lowered my husbands bed to the floor too.
It seems strange to me that its deemed better on the floor than bed rails !!
He was ok with it , fortunately.
Jean x
As I said, I wouldn't be able to manage changing my husband, washing and dressing him without, bedrails. I did notice though,that it took at least 2-4 nurses to change him on the bed, 2 either side of him and yet with bedrails at home, I do all of his care on my own!
X
You must have a bed with rails and a caring package in place, Pauline. xxx
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