AKU is a debilitating disease. It can leave patients unemployed, immobile and in need of care. If you are worried about the financial implications of living with AKU, this page will list where to find help, with useful information and links to official websites.
Please see below for more information and useful links:
- Turn2Us – You can use this website to find appropriate sources of financial support, quickly and easily, and based on your particular needs and circumstances. If you need any help call us, and we can fill out the online form for you.
- PIP Toolkit – Disability Living Allowance (DLA) has been replaced with Personal Independence Payment (PIP). This toolkit from the Department of Work and Pensions provides clear information about the changes.
- PIP Fact Sheet – A fact sheet from Disability Rights UK about the Personal Independent Payment (PIP), including how people will be assessed and information about the activities test.
Department of Work and Pensions (DWP)
Contact the Department of Work and Pensions (DWP) to see if you are entitled to any benefits including:
- Carers allowance
- Disability living allowance
- Attendance allowance
There have been major changes to the Welfare system affecting benefits. For the most recent information check the DWP website.
Citizens Advice Bureau: My benefits have stopped
If you have any problems with receiving your benefits and want further advice check the Citizen’s Advice Bureau website.
If you receive certain benefits, you may be able to claim admission, discharge and outpatient fares for public transport for yourself and one adult. You will need to show proof of receiving benefits within three months of your appointment or admission. Talk to the transport office or department of your hospital for advice.
Discount Rail tickets
The disabled person railcard allows you to buy discounted rail tickets. You can get 1/3 off adult rail fares for travel on the National Rail network in Great Britain.
If you’re travelling with another adult they will also get 1/3 off their rail fare, so you can save money for a friend or family member too!
There are no time restrictions on the Disabled Persons Railcard, so you can use it to get a discount on tickets at any time of the day.
The card currently costs £20.00 and is valid for 12 months or £54.00 for three years.
More information can be found here.
Personal Independence Payment
Personal independence payment (PIP) is a new benefit for people who need help taking part in everyday life or who find it difficult to get around. It replaces disability living allowance for people between the ages of 16 and 64 inclusive.
The Motability Scheme enables anyone in receipt of a higher rate mobility allowance (such as the Enhanced Rate of the Mobility Component of Personal Independence Payment or the Higher Rate Mobility Component of Disability Living Allowance) to use their mobility allowance to lease a car, scooter, powered wheelchair or Wheelchair Accessible Vehicle. For more information please go to the Motability Scheme website.
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 other available sources. Please note this information is only relevant to those living in the UK.
Contact a Family
Contact a Family is a charity based in London that produces guidance documents to families with a disabled child. Their guides are of good quality and may be of help to older disabled people.
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.
Independent Living provide free impartial information and advice about products and services to help with mobility and independence. They have a weekly newsletter which highlights the latest developments of interest to health and social care professionals, family carers and disabled individuals, including new products and services and changes in legislation.
Community transport services are provided by local councils and Royal Voluntary Service (RVS). The services include door-to-door transport and trips to shopping centres. Services vary by area and there are often fewer services in rural settings.
National Federation of 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.
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. More information can be found here.
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.
Some people can get a blue badge automatically. This is called being eligible without further assessment. You fit into this group if one or more of the following applies to you:
- you receive the War Pensioners’ Mobility Supplement
- you receive the higher rate of the mobility component of Disability Living Allowance (DLA)
- you receive the mobility component of Personal Independence Payment (PIP) and you scored at least 8 points in relation to the ‘moving around’ activity in the PIP assessment, or least 12 points in the mobility activity for planning and following journeys
- you have been awarded a lump sum benefit from the Armed Forces Compensation scheme (tariffs 1 to 8). You have also been certified as having a permanent and substantial disability which means you can’t walk or find walking very difficult
- you have been awarded a lump sum benefit from the Armed Forces Compensation scheme at tariff level 6 for a mental disorder
- you receive a government grant towards your own vehicle.
If you were on the higher rate mobility component of DLA, but you had to claim PIP instead and didn’t get enough points to be eligible for a blue badge, you can continue to use your badge until it expires.
If none of these apply to you, you may still be eligible. This is called being eligible subject to further assessment, and will apply to you if you meet one of these criteria:
- you have a permanent or substantial disability which means you can’t walk or find walking very difficult
- you are a driver and have severe upper limb disabilities
- as a result of a mental disorder you are unable to follow the route of a familiar journey without the assistance of another person. Anyone aged over two years can be eligible under this condition, including people over 65.
- you are applying on behalf of a child over two with a permanent or substantial disability which means they can’t walk or find walking very difficult
- you are applying on behalf of a child under three with a medical condition that requires them to be close to a vehicle for emergency medical treatment or transporting bulky medical equipment.
If you have any queries about whether you’re eligible for a blue badge, you can contact your local council or visit the website.
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 straight away about any medical condition or disability that may affect your driving.
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 notifiable medical condition or disability.
‘Notifiable’ medical conditions and disabilities include:
- other neurological conditions and mental health problems
- physical disabilities
- visual impairments
RiDC (Research Institute for Disabled Consumers) is a national research charity dedicated to providing independent information of value to disabled and older consumers.
RiDC publishes booklets aimed at motorists with disabilities. They also offer unbiased information and consumer guides on home and technology products.
If you struggle with mobility and need a wheelchair, you may be eligible to get an NHS one. Ask your GP or physiotherapist to refer you to your local wheelchair service for an assessment. They will decide if you need a wheelchair and what type. You may also be able to get a voucher to pay towards the cost if you want a different kind of wheelchair to the one they suggest. These services often have long waiting lists for assessment appointments so you may have to wait several weeks once the referral has been made.
The British Red Cross offers a wheelchair service at various locations across the UK. The minimum hire period is two weeks and can be extended up to 20 weeks. Hire charges are £15 per week with a delivery charge of £10 if you are unable to collect the chair in person. Bookings can be made online or by calling 0300 456 1914.
If you are eligible to join the Motability Scheme, you can get help to hire or buy an electric wheelchair.
Since April 2017, all clinical commissioning groups (CCGs) in England have been expected to start developing plans to offer personal wheelchair budgets, to replace the wheelchair voucher system. Your local CCG should be able to provide more information about what’s available in your area.
Find your local commissioning group (CCG)
Access to Work
The Access to Work scheme can help you if your health or disability affects the way you do your job. It gives you and your employer advice about and support with extra costs that may arise because of your needs.
Find out more about the Access to Work scheme.