Beds & Mattresses
The muscle weakness caused by your SMA may mean that you need a specialist bed and / or mattress to keep you comfortable and safe at night. You may have always needed a specialist bed but your current one is getting very old or not working as well, or this might be new for you. An example is an electric profiling bed that’s divided into sections to allow areas of the bed to be positioned at different heights and angles, depending on what’s needed for posture, comfort and activities. Some adults use a profiling bed which can be programmed to offer ‘side tilt’ during the night which may mean that they don’t need a carer to turn them.
There are also devices available which can be fitted to standard profiling beds which assist carers to turn someone in a safe manner.
Mattresses need to be compatible with the bed provided and different ones suit different preferences and needs. Some adults use memory foam mattresses, others are assessed as needing electric pressure-relieving mattresses, which give some change of movement (and pressure areas) throughout the night.
Some people also find a sleep system (which uses wedges and rolls to support the body) helpful. Your OT (Occupational Therapist) can advise you what’s available and what may best suit your needs. If you don’t have an OT, you can ask your GP to make a referral. This website may well be useful: www.dlf.org.uk/factsheets/beds
Some people find it useful to buy a portable electric pressure relieving mattress to take on holiday or for when they stay away from home. These however, cannot be funded via statutory services.
Those of you who’ve always required help to move or turn may be familiar with the possibility of having satin or cotton ‘slide’ sheets on top of the mattress, which can make it easier for whoever’s helping you. If you are experiencing any difficulties with night time positioning / turning you can ask for help with this from an Occupational Therapist.
Funding For Single And Double Profiling Beds
Generally, if you have a health or medical need, there should be no issue with a suitable single profiling bed being supplied by the NHS via a District Nurse. It may not be so straightforward if you need a double one – which is not at all unreasonable if you share your bed with a partner.
If you need a double bed, your first step should be to ask your District Nurse if this could be funded. Make sure to get supporting letters or information from your OT, physio or social worker.
If you get turned down, talk with your District Nurse about the reasons. You may at this stage want to work with them to apply for funding for the bed via your Clinical Commissioning Group. You can find contact details here: www.england.nhs.uk/ccg-details
The reasons for being refused at either point may be because positioning of a double profiling bed will compromise moving you safely – for you and / or your PA (Personal Assistant). It’s hard to argue with that one.
If safety won’t be compromised, some options you might propose are:
- Seeing if a ‘twin’ single can be attached to the offered single to effectively make a double. If it can, propose that the NHS supplies the single and you fund the twin (see below for help with this)
- If a twin isn’t possible, propose that the NHS part funds to the value of a single bed that they would be prepared to supply. Then with the support of your OT/physio/district nurse look at what suitable options you can find. Ask them for a supporting letter to confirm that the bed you’ve chosen will work for you and is safe for both you and any PA.
Beds are very personal and ideally you will want to try before you buy. If the supplier won’t allow this, make sure you have an assurance that it can be returned if it’s ‘not suitable’ – establish what reasons they understand would make it ‘not suitable’ and that you agree these are reasonable.
Help With Funding
If you need help to fund the option you’ve chosen, Support Services at SMA UK may be able to suggest charities that may provide a grant. Most charities won’t fund retrospectively, so it’s important you don’t place an order or pay any deposit until all funding has been secured or pledged.
Most charities will need:
- a letter from your OT / physio / district nurse to say that the bed / mattress you’ve chosen is suitable, safe and meets your needs and that the NHS won’t fund it
- your quote from the supplier detailing costs, including any extra accessories and delivery
You can find related information in the Living With SMA section:
Funding For Equipment.