Social Information

Many AKU patients tell us that they feel alone and isolated by their disease. We try to help, but when we cannot, this page should list available sources elsewhere.

Community Nurse

There should be a community nurse attached to your GP practice. You will probably have to ask to be referred to them but they are very useful for home support, organising repeat prescriptions, carrying out oxygen level monitoring and sleep studies should your consultant require them. They can also give emotional support and advise you of any local services which may be beneficial.

Contact a Family

Contact a Family are a charity based in London that produce guidance documents to families with a disabled child. There guides are of good quality and may be of help to older disabled people, so worth a look through. The list of the publications are available online at Publications.

Disabled Living Centres
A Disabled (or Independent) Living Centre (DLC) is a place where you can get free and ethical information and advice about products which can increase disabled or older people's choices about how they live. At a DLC you can see and try out products and explore other solutions. Centres provide free information to people in person, by telephone, letter or email. They are also a good source of information in terms of internet facilities and magazines for example. They facilitate roadshows and sometimes can carry out driving assessments. www.dlcc.co.uk

Community transport

Community transport services are provided by local councils. The services that might be available include door-to-door transport and services offering trips to shopping centres. Services vary by local area and there are often fewer services in rural areas.

The following link takes you to a page where you can enter details of where you live and then be taken you to your local council website, where you can find out more about community transport schemes in your area. This search only covers England.

Find out about community transport schemes locally

The a2b info website lists community transport services in England. It has a searchable database.

a2b info - Community Transport Network

Shopmobility

Shopmobility schemes hire out or lend manual wheelchairs, powered wheelchairs and powered scooters to anyone who needs help with mobility to get around. Centres are usually located in a town centre or shopping centre, enabling people to go shopping and to visit leisure and commercial facilities.

All schemes operate independently but you can find out whether there is a scheme near you by contacting the National Federation of Shopmobility. As each scheme varies, it is important to contact the scheme you wish to visit before you go.

There is sometimes a charge for using the service, though most centres provide it for free.

Hospital Transport

Some hospitals provide transport but this is only available for those who have a medical reason for it. Please ask your Doctor if this may be available for you.

Blue Badge Scheme

The Blue Badge scheme provides a range of parking benefits for disabled people who travel either as drivers or as passengers. The scheme operates throughout the UK. The concessions apply to on-street parking and include free use of parking meters and pay-and-display bays. Badge holders may also be exempt from limits on parking times imposed on others and can park for up to three hours on single yellow lines as long as they are not causing an obstruction. Go to the website www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport for details of how to apply. Please note that there have been recent changes to the scheme so it is best to check the website.

Blue badge parking map. The Directgov Blue Badge parking map is being significantly improved from February 2008.The Blue Badge parking map provides information on blue badge parking bays. There will be a large increase in the number of locations featured as well as additional information on accessible toilets, train stations, Shopmobility sites and much more.

Driving and disability

Having a medical condition or disability does not necessarily mean you cannot or will not be allowed to drive. Whether you are a new or an experienced driver, you must let the Driver and Vehicle Licensing Agency (DVLA) know about any medical condition or disability that may affect your driving.

You must tell the DVLA if you have, or have ever had, a medical condition or an impairment that may affect your driving.

If you hold a current driving licence and have a 'notifiable' medical condition or disability, you must tell the DVLA right away. You should not wait until your licence is due for renewal.

You must also tell the DVLA if your medical condition or disability has become worse since your licence was issued or if you develop a new medical condition or disability.

Sometimes the best option can be to surrender your license, and reapply for its restoration at a later date.

'Notifiable' medical conditions and disabilities include epilepsy, strokes and other neurological conditions, mental health problems, physical disabilities and visual impairments. There is information about how to tell the DVLA in the general motoring section of Directgov.

The research charity Ricability publishes booklets aimed at motorists with particular needs, including motoring after amputation, receiving a brain injury or having a stroke, and motoring with arthritis, cerebral palsy, multiple sclerosis or restricted growth.

Medical conditions that could affect your driving (motoring section)

Medical rules for all drivers (motoring section)

Mobility consumer reports by Ricability Opens new window

Wheelchairs

NHS Wheelchair Services are run by local health authorities. They are responsible for allocating funds to the Wheelchair Service and Primary Care Trusts who are responsible for providing the service itself. This sometimes includes contracting the running of the service to an outside company.

It is important to note that the way services are organised and provided varies between locations. This includes the 'eligibility criteria' used to decide what type of wheelchair - if any - to provide, how soon to provide it, and the way in which wheelchairs are funded. The basic process is as follows:

you are referred to a local NHS Wheelchair Service
an assessment of your needs takes place
timescales and funding options are discussed
the wheelchair, and training in its use, is provided
a maintenance and repair plan is arranged

Wheelchairs can be manual or powered and may be provided with accessories such as cushions, armrests and trays.

NHS directory of wheelchair services

If you want more information on financial support, please get in touch with our Patient Liaison, Duncan Batty at duncan@akusociety.org. Duncan is an AKU patients who has had experience with most of the above scheme and happy to help out.