Has anyone any experience of replacing the mattress on an NHS profile bed?
My wife can’t get comfortable on her bed, gets up several times during the night and eventually goes to the riser chair about 6 am,
I wonder if it’s the cheap mattress the NHS provide or just the PSP.
I don’t mind buying a new mattress if it will help, but don’t want it to be another item that’s a waste of money.
The NHS won’t provide an airflow mattress at this time.
Thank you
Hi,It's tricky, the NHS provided mattress is supposed to prevent pressure sores; not quite as "cheap" as it seems.
My husband always preferred his own (shared) bed and the orthopedic mattress he had chosen, but the OT and district nurses were recommending the profiling bed with its standard NHS mattress and we were told not to replace the mattress or use mattress toppers.
Unfortunately the sleep issues might not be related to the mattress at all - failing to settle, and getting up during the night and getting up early is fairly typical in PSP.
That said - you might be able to buy an airflow mattress yourself and it could be beneficial. My mother-in-law who had Parkinson's used one (privately funded) for many years and it meant her carer wouldn't have to help her turn multiple times a night.
Best wishes
Bergenser 🌻
Thank you. Interesting what you say about airflow. I think one of the problems might be that she can’t change position once in bed.
Strangely, our OT did suggest a better mattress might help, but it must be suitable for a profile bed
If the OT suggested an upgrade, it might be worth getting them back to review the situation and impress on them how the current situation is affecting sleep and wellbeing. I've been surprised more than once at what the OT can achieve if they understand the need of the patient. If you're comfortable doing so, you could also contact the district nurses and express your concern that she's not able to change positions. Your expressed concern could sway their decision. Never feel guilty about highlighting what the "worst nights" are like rather than focusing on the positives like we all tend to do.
Best wishes
We had the OT here on Monday, where she said the mattress that came with the bed is the only one they will supply. Yes, I have learnt to emphasise the worst and not do the ‘ it’s alright, we can manage’.
So far we have had no contact with district nurses, I don’t even know how to. I have been trying since September to get someone to talk to my wife about Advance care management.
You mentioned your MIL had an airflow mattress, are they noisy?
Thank you so much for replying to me when you must still be grieving yourself
The airflow mattresses make sounds at regular intervals. I would say you get used to it.
If you’ve not already done so, notify your energy supplier that there is someone vulnerable in the household. Apparently they can prioritise who gets power back first in case of a power cut.
Have you been refered to pallative care by your doctor? Once under them it makes it easier/opens up access to district nurses, SALT and hospices as they all report back to pallative care team.
We still share our standard double bed and my husband complains about being uncomfortable. He mentions that there is a lump in the bed when there isn't and at times has severe back pain. He isn't able to change sides but will stand up for a while during the night.
We were told by a nurse at the Practice that the GP will need to put in a request for a pressure mattress. This is because, besides having CBD, he is also a diabetic and has quite bad pressure wounds on both heels.
In the meantime I contacted Age Care and they will send someone out to do an assessment but couldn't tell me how long the waiting time is.
We also recently spoke to our GP about being registered for Palliative care but he told us that is only possible when about 6 months of life is probably left. However reading many other comments this time frame doesn't seem to apply.
It's just difficult all round knowing what to do.
Hello Pspuser, my experience of mattresses was stressful to say the least. My husband had a medical bed with a standard mattress (cheap in appearance) designed to prevent pressure sores. He complained it was uncomfortable. Bergenser is right that PSP causes sleep issues. His doctor prescribed an airflow mattress. The chief pharmacist said it would be "complicated" and didn't order it. Pressure sores began to develop on his heels and the bottom of his spine. The district nurses said he should have an airflow mattress. The doctor changed his mind that it would be an improvement as they are noisy (a constant hum, I was told) and might have made sleep more difficult. Also that as the airflow mattress functions by electricity, and so did the bed (rise and fall) did we have enough power points because extension cables were out of the question.In short, we kept the basic mattress, luckily, as some months later we had a 22 hour power cut due to storms. In this time the airflow mattress would have completely deflated.
I hope you make the right decision as it's a tricky one.
from experience with my Dad ... we went through the same journey as he gradually had to move from his own bed, to an NHS bed then downstairs. Once his mobility became affected he needed an airflow mattress to prevent pressure sores. It's been a necessity for his care. My parents could not do without it.
He is advanced CBD and cannot reposition himself.
He developed category 1 pressure sores on his sacrum and heels ... the airflow bed together with the wendylet sheets have been a must have for dad to ensure his skin remains in tact and that he can be repositioned by carers.
Its doesn't make too much of a noice albeit there is a hum that you get used to. Also having tested it the mattress even if the power is off it turns into a softer mattress so doesn't deflate to nothing.
Personally I would contact the GP / OH and push this. I am sure the DNs would support you on the basis of mobility / pressure sores and comfort.
How nice to read another 'oldie's'concerns. I am male 83, PSP diag 6-7 yrs, about to move to flat with partner in over 55's residential outfit. Have just bought new 'med-firm' mattress for my crappy sprung frame, and likely to need NHS? edition in a few months or more. Never checked out profiling beds/mattresses. at all. Anyy suggestions please welcome.
Best wishes all! TimbowPSP
Thanks. Need to move to new resi home first, then check bed availabiliy, etc............ later! Tim
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