Standing

If you’re unable to walk, it’s still important to maintain activities like supported standing for as long as possible. Standing’s good for many things including:

• posture and range of motion
• preventing contractures
• breathing
• blood circulation
• bladder and bowels
• bones and joints.

Your physio or OT will provide equipment to support your standing and positioning. This may include a standing frame. They will tell you how often, when and where you should use any equipment.

Sitting

You should be seen by a specialist occupational therapist (OT) or physio if you can’t sit comfortably and safely because of your muscle weakness or any breathing difficulties. They should recommend comfortable seating for you. If you’re not being seen regularly by an OT or physio, talk to your parents about contacting your GP or neuromuscular consultant. Ask for a referral to an OT or physio.

Funding

Your OT should supply some seating free via the NHS or the Local Authority. Usually they can only supply what’s needed at your main home address. If your parents are separated or you spend a lot of time with grandparents or other relatives, it might be good to have more than one seating option. Your family will probably have to find the money for this.

If you’re finding it hard to get out and about with your friends and family to do the things you enjoy, talk to your OT or physio. If you don’t see one regularly, talk to your parents about contacting your GP or neuromuscular consultant. Explain what’s going on and ask them for a referral so you can get advice.

This section looks at a variety of options, not all of which will be right for you. But, it will hopefully give you some ideas about what to think about.

Read More >

The muscle weakness caused by your SMA may mean you need powered mobility equipment to get around. You may have had powerchairs before or this might be the first time. We hope these pages will help you get the chair that best suits you.

Read More >

You may find that the muscle weakness caused by your SMA means the current set up you have in your bathroom no longer works for you. You may need some equipment to help.

Washing and Using the Loo

Let your OT know what the problems are.  They’ll do their best to sort out equipment to make things as easy and stress-free as possible. If you don’t have an OT, your parents can contact your GP or neuromuscular consultant and ask for a referral. In many areas you can self refer to your local authority Occupational Therapy service for Equipment and Adaptations.

There’s a wide variety of equipment and new products coming onto the market all the time. These include:

• Using the bath: bath chairs, lifts, cushions, inserts and portable baths
• Showering: multi-function shower and commode chairs, mobile and wall-mounted shower cradles and trolleys, shower chairs and stools
• Using the loo: toilet seats, cushions, frames and rails, urine deflectors, junior and travel urinals, wash and dry facilities.

Your OT should be able to advise what would work best for you. They should be able to provide most items of equipment and / or tell you how to get assistance to pay for them.

Managing days out

Days out and travelling away from home can bring extra challenges.

Changing Places toilets > provide a height adjustable changing bench with a hoist and plenty of space. Visit their website for more information and a map > of where Changing Places can be found. 

The National Key Scheme > for accessible toilets that can be found in shopping centres, cafes, department stores and in bus and train stations around the country. To unlock the toilets, you will need to buy a RADAR key >

Clothing

You may find that it helpful to have clothing that fits easily over your head, legs and arms. You may find it hard to get comfortable footwear. If you’re a wheelchair user, you may want something that fits over both you and your wheelchair when you’re going out.

The muscle weakness caused by your SMA may mean that the bed you have now is no longer comfortable and safe for you. A different mattress or pillow may be more comfortable.

Some people find a sleep system which uses wedges and rolls to support the body is helpful. Your OT can advise you what’s available and may work well for you. If you don’t have an OT, your parents can ask your GP to make a referral or self- refer to your Local Authority Occupational Therapy service.

Some families find it useful to buy a portable electric pressure relieving mattress to take on holiday or for when you stay with friends or relatives.

Living Made Easy / Profiling Beds > are specialist ones you might discuss with your OT. You need to tick the boxes on the left hand side of the website page for what’s appropriate for you.

If you need to be moved or turned at night to keep comfortable, having satin or cotton ‘slide’ sheets on top of the mattress can make it easier for whoever’s helping you. Alternatively, there are products available such as Wendylett sheets and other devices which can be attached to a hoist. These can assist in turning you safely and comfortably.

Funding

The NHS should fund a suitable bed and mattress for you at your main home address. If your parents are separated or you spend a lot of time with grandparents or other relatives it may not be possible for a second bed to be funded. It’s also unlikely that a portable pressure relieving mattress would be funded, but it’s worth your parents asking your OT.

If you do need additional sleeping options, your parents may want to apply for help to buy them.  See: Tab 9. Funding For Equipment below.

Once you’re taller and heavier, your parents, carers and PAs (Personal Assistants) must avoid injuring their backs. They also need to lift you safely.

Your physio and OT can give advice on safe lifting and equipment that will help.

Read More > 

This includes smartphones and iPads or tablets. There may also be other Assistive Technology (AT) that you would find helpful. There’s a huge range:

• Computer software and hardware, such as voice recognition programmes and screen readers.
• Adaptive switches for computer gaming
• Communication aids, for example, an ‘eye-tracking’ device to operate a computer
• Environmental control systems

Read more >

The sections above mention a lot of the possible equipment to support you in your day-to-day life. Other items and accessories, sometimes small, can also make a difference. They can help you participate fully at home and school. For example:

• Automatic page turners, book holders and adapted pencil grips
• Ramps and grab bars
• Specialised handles and grips to help with eating and reaching

You can talk to your OT or physio about what help you need. They may be able to provide it. If you don’t have an OT or physio, ask your GP to make a referral for you. If you need something for a medical reason, the health authority should fund it. If you need equipment to help with personal care or daily living, your Local Authority should fund it via Social Services. Your OT should guide you.

These budgets are limited and may not cover every item that your OT suggests and there can be delays. Also, new products are coming on to the market all the time. If you want to see what the range is, and potentially buy anything yourself, do ‘try before you buy’.

If the health or local authority can’t fund an item, you may be able to get help with funding. Your OT or another professional must confirm you would benefit from it. See Tab 9. Funding for Equipment below.

Check Health Or Local Authority Funding

Your OT or physio or specialist should be able to advise you. Funding for equipment for your daily use at your main home and school, should broadly be as follows:

Buying used disability equipment

If the NHS or Social Services can’t provide you with an item, this can be a good way to save money and get the products you need for daily living.

• Scope gives a summary > of things to think about and where to look.
• Skiggle > a charity that provides a place for people to turn to if they urgently need a piece of equipment or disability care product.

Selling used disability equipment

If you have disability equipment that you no longer need, you may be able to sell it.

• Scope gives a summary > of suggestions for how to go about it.

Donating and recycling used disability equipment

There are several charities that accept donations of used disability equipment.

• Scope gives a number of suggestions >.
• Skiggle > charity that runs an online marketplace where people can safely give away and distribute disability care products and equipment

If you’re keen to try to pass on your equipment to other people affected by SMA, it might be worth checking if this is possible through one of the SMA online communities >.

These organisations also offer advice and hire equipment; others may be available:

British Red Cross > – to borrow or hire a wheelchair – age 5 years upwards.

National Mobility Hire > – for children’s lightweight wheelchairs as well as mobility aids for adults.

The Mae Murray Foundation Resource Library >in Northern Ireland has a wide range of equipment and resources which members may borrow. This may be possible for a holiday. They also have an inclusive beach loan scheme >.

Equipz > – Disabled Living’s services which relate to the provision of information and advice about equipment and services.

Naidex > – The UK’s leading trade and consumer event for disability, accessibility, and independent living .

Kidz to Adultz exhibitions > – Organised by Disabled Living, these are five of the largest, free UK exhibitions focused on the needs of children and young adults aged up to 25 years.