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Specialist air mattress advice - UK

Discussion in 'General ME/CFS Discussion' started by will.syd, Dec 21, 2015.

  1. will.syd

    will.syd

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    Hi

    Apologies if i'm posting this in the wrong place - I couldn't find a suitable forum and this seemed the most appropriate.

    We're looking for help obtaining a specialist air flotation mattress outside of the NHS for my severe ME-suffering mum. We live in Surrey, Southeast England. She has suffered with severe ME for 15 years, bedbound for the last 13 years, and her condition has worsened significantly this year to the point where she is currently unable to feed herself and needs an air mattress because of build-up of pressure pain. She does not have surface sores, but pressure pain particularly around the coccyx due to lack of tissue to protect her bones, leaving her currently needing strong painkillers.

    She has tried two different air mattress types recently but neither have succeeded in relieving her pain. We believe that she needs an air flotation mattress, which she has had in the past; however having engaged with the local district nurse and a specialist tissue viability nurse, this does not appear to be an option through local NHS provision. The most recent type we have been offered is a new type of foam mattress (Dyna Foam Mercury) which my mum fears will not be suitable. We are willing to pay the cost in order to obtain such a mattress; however we are unsure what the process or mechanism is to do so and engaging with local NHS professionals or searching the internet has not yielded any results.

    I wondered if anybody in the UK has had experience of going through the process of being seen by a private specialist and supplied with such a mattress?

    If anybody has advice that can help us resolve this solution, in terms of the process and who we need to contact, we would be hugely grateful.

    Many thanks

    Will
     
  2. Invisible Woman

    Invisible Woman Senior Member

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  3. Lynne B

    Lynne B Senior Member

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    sydney, australia
    Hi, will.syd,

    Sorry to hear about your mother's difficulties. Have you tried a sheepskin rug to go between her body and the mattress you already have?

    My mother was in hospital with a broken leg for about two months. She was on an air bed yet she still needed something softer under her right heel. My sister blew just a little air into a hospital rubber glove so it was a soft balloon to put under her foot. However, Mum found the specially-made small piece of sheepskin worked better.

    In the case of your Mum, because it's her coccyx that needs protecting, you could start with a small piece of sheepskin and see if that helps, although she may need a larger one to lie on to keep her spine comfortable. The rugs are washable, though I'm not sure if they can be tumble-dried, as wool shrinks with heat.

    Anyway, hope this helps. Lynne
     
  4. Skippa

    Skippa Anti-BS

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    Hi, I know the NHS can still get hold of these, just had to get one for a Parkinson's patient.

    Try and find the social workers for old people at your local council, they get these all the time, hopefully they can put you in touch with an occupational therapist who knows :)
     
  5. Valentijn

    Valentijn Senior Member

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    I think gel mattresses are typically used for people at risk for pressure sores or related problems from being bed-bound? Expensive though.
     
  6. will.syd

    will.syd

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    Thank you very much for your helpful replies and my apologies for not responding sooner, I've been away for a few weeks. Following my message in December we did some additional research and are working with the local tissue viability nurse who is carrying out a trial of three products, including a low air-loss type, which we are hopeful will be suitable and offer and improvement.

    @Invisible Woman - yes, I contacted the MEA and it was them who suggested I try this forum. I have now contacted the 25 Group for advice as we're a member. Thank you.

    @Valentijn - That's interesting, we hadn't heard of gel mattresses and from a doing a little research it seems there is a typoe that is suitable for fibromyalgia patients, who often suffer from pressure pain. So seemed a possible option for my mum. However the company we contacted supplied them only in the US and not the UK. We have shared this info with the local specialist but she does not appear able to source one.

    Again, thank you all for your kind support.

    Best wishes

    Will
     
    Invisible Woman likes this.

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