Wheelchair Support Service

The Wheelchair Support Service aims to support everyone living with Motor Neurone Disease (MND) and Kennedy's Disease with their wheelchair needs.  This could be in the form of advice, advocacy with local services or financial support.

It is estimated that 80% of people with MND will need a wheelchair and we believe it is very important to have an appropriate posture and mobility assessment as early as possible.  This will identify your individual requirements and what type of mobility equipment you may be entitled to from your NHS wheelchair service. 

Getting a wheelchair

You can be referred to the Wheelchair Service by asking your GP or health and social care professional to refer you for an assessment.  This assessment will consider how you will use the wheelchair, your environment, your posture and function and how the chair will be transported.

The wheelchair assessment is not a financial assessment.  Getting a wheelchair through the NHS depends on your needs and not your income.

Each wheelchair service is different.  What your local service can offer will vary.

Types of wheelchairs that may be discussed are:

Manual folding wheelchair - if there is a delay in getting a chair or you need a short term hire of a manual wheelchair the Red Cross branches may hire on a weekly basis and some shopping centres have a Shopmobility scheme where wheelchairs and scooters can be borrowed while you are shopping.

Powered wheelchair - These wheelchairs are compact and narrow, fitting most homes.  They are agile outdoors and have all-wheel suspension for safety and stability.

Manual tilt in space wheelchair - is the first choice for postural support and comfort.

The NHS powered and/or the manual tilt in space wheelchairs are designed to support your mobility needs both in and outdoors and will address your changing needs.  However, they cannot be lifted into the boot of a car and do not fold.  If this is required, you may wish to seek specialist advice on alternative options available, for example a folding powered wheelchair.

You can also visit NHS England for more information about getting a wheelchair.

The following video provides a guide to the Powered Neuro Wheelchairs and demonstrates how they may be of benefit. You can watch the full video or select from the individual chapters.

Wheelchair add ons

The add on features mentioned in the video may be over and above what your NHS wheelchair service will provide.  These features may include; 

• Seat riser - this feature could have physical, psychological and functional benefits for the wheelchair user.  It can enhance the user's independence with the ability to actively participate in other life experiences and situations without needing help from another person and without the risk of injury. 

Of all features of a power wheelchair, the riser is the one that takes me from being below a conversation, to being on equal standing with other people, meeting their eyes and hearing their words without their having to shout. The contribution to dignity alone is enormous. Then of course there's the importance of reaching shelves and cupboards in the kitchen especially when I'm on my own

 

• Powered elevating leg rests - these allow the wheelchair user to change the leg and/or foot rest angle relative to the seat in order to flex or extend the knee.  This can help maintain and improved leg position.
• Attendant control - this is an extra controller mounted on the rear of the wheelchair and designed for the attendant or carer to take over control when the wheelchair user is fatigued and can prolong wheelchair independence.

this adaptation will be helpful as my condition progression goes forward, if and when I lose the ability to control my electric wheelchair, my wife or caregiver will be able to let see the world

 

• Powerpacks for manual wheelchairs - this provides support when managing a manual wheelchair, making this task less physical for caregivers.

My wife found the wheelchair too heavy to push outside but now with the powerpack I am hoping I will be able to get out more often

 

This add on list is not endless and there may be other things which may come to light in conversations with wheelchair services.  You may be able to pay for these extra features using a personal wheelchair budget.

Personal Wheelchair Budget (PWB)

A personal wheelchair budget scheme was introduced in England in 2019.   This provides a wider choice of wheelchair provision and aims to increase choice to support well being goals.  The provision must be clinically safe and appropriate and can come from either within or outside of the NHS-commissioned services.  You may be eligible to access a PWB whenever you require a new wheelchair, either because your clinical needs have changed, or if your existing wheelchair is no longer fit for purpose. 

PWBs can be used to purchase equipment or add on features for wheelchairs that are not provided through statutory services.  For people living in Wales and/or Northern Ireland please do consult with your wheelchair service should you wish to add these features to your wheelchair.  If you are living in Scotland referrals to the wheelchair service should be made by your GP or healthcare professional for example a physiotherapist.

The MND Association can consider providing financial support for wheelchair related items wanted through a PWB and this option may be worth discussing with your wheelchair therapist or appropriate healthcare professional.

After the powered wheelchair

There may come a time when you are no longer able to independently drive your powered wheelchair, the local wheelchair service may be able investigate other driving technologies to support your independence. If this is not possible, then a more specialist manual tilt in space wheelchair maybe provided to you.

This is a wheelchair which allows the whole chair to tilt up to 30-60 degrees while maintaining hip and knee angles at 90 degrees allowing for more comfort.  However, the main disadvantage of this type of wheelchair is that they are very heavy and do not fold.

A powerpack can be fitted tot he wheelchair, the main benefit of this is to provide support when managing a manual wheelchair making this task less physical for the carers and reducing the risks of carer injury.  You must also ask the wheelchair service for permission to fit one to your wheelchair.

Wheelchair Accessible Vehicles (WAVs)

A wheelchair accessible vehicle (WAV) is a vehicle that has been modified by increasing the interior size of the vehicle and equipping it with a means of wheelchair entry such as a ramp or powered lift.

Some wheelchairs cannot fold and therefore will not fit into the boot of an average car , this means they have to be transported in a WAV.  These can be got through the Motability Scheme, purchased or leased privately.

If you are over 65 and therefore ineligible for the scheme but still want further information about choosing the right vehicle for you and your wheelchair or understanding more about vehicle adaptions then visiting your local Driving Mobility center is essential.

The Wheelchair Alliance

During 2024 the MND Association partnered with The Wheelchair Alliance, they are committed to hearing the voice of wheelchair users and providing information to empower those who use a wheelchair, their families and carers.  They work hard to ensure the right voices are heard by the right people, and drive forward lasting positive change.  

The Wheelchair Alliance believes that knowledge is a powerful enabler of change.  By studying various aspects of wheelchair use, accessibility and technology they hope to create positive change and innovation for wheelchair users.  Their latest report builds on previous research and provides a set of concrete, actionable recommendations to be implemented in the wheelchair sector.  Read more about that here. 

If you are a powered wheelchair user the Wheelchair Alliance would very much like you to complete the following survey  https://bit.ly/3NZNNd8  They would like to ask you questions to understand what kind of powered wheelchair you have and where you use it.  They particularly want to explore your awareness and understanding of the guidance which regulates where you can use your powered wheelchair in outdoor areas.

Further information

The MND Association has a wealth of information and other resources that can be downloaded as you require, this includes information about Equipment and Wheelchairs which contains other mobility information. Click here to go to our full list of information resources.  

Information for professionals

Our Information Sheet for health and social care professionals on ‘Wheelchairs for people with motor neurone disease’ provides further details on: access to wheelchairs; types of wheelchair for people with MND; and Powered Neuro Wheelchairs.  you will also be able to find other resources including information sheets, booklets and webinars in our professionals pages.

To contact the Wheelchair Support Service

If you have any questions or experience any problems with access to a wheelchair for yourself or a person living with MND please email [email protected] or call 01604 611694.  Or for more information on MND please contact our help line MND Connect at [email protected] or by telephone on 0808 802 6262