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.

Fare reimbursement

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.

Disability living allowance

There is a benefit provided to those under the age of 65 with a long-term health problem which affects everyday activities. It is not means-tested and not affected by any other benefits. It is split into mobility and personal care and each is assessed separately with a different rate of allowance for each.

There is a lengthy form to complete followed by a doctor’s visit to your house. The amount awarded can be up to several hundred pounds paid every four weeks. It is tax free.

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.

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.

Motability scheme

This is a means of purchasing a new car without the worry of things such as servicing, tax, and insurance. Applications can be processed through accredited dealerships. Eligibility to use the Motability Scheme is based on receiving one of the following benefits:

  • The Higher Rate Mobility Component of DLA
  • The Enhanced Rate of the Mobility Component of PIP

For existing Scheme customers, eligibility to remain on the Motability Scheme will therefore depend on the outcome of their assessment for PIP.

If you are awarded the Enhanced Rate of the Mobility Component of PIP you should not experience any disruption to your Motability Scheme lease as you move from one benefit to the other.

If you are not awarded the Enhanced Rate of the Mobility Component of PIP you will not be eligible to use the Motability Scheme even if you previously received the Higher Rate Mobility Component of DLA. Having to leave the Scheme will be difficult and because of this The Motability Scheme has decided to provide a one-off package of transitional support to those customers who can no longer use the Scheme as a result of their initial PIP reassessment.

If a person is not awarded the Enhanced Rate of the Mobility Component of PIP and is challenging the decision DWP will not continue to make DLA payments while a decision is being challenged. The Motability Scheme will therefore not be able to leave a vehicle with the customer. If after returning the car you are informed by the DWP that you have been awarded the Enhanced Rate of the Motability Component of PIP, and have not received the transition support package, you will not be eligible to return to the scheme for 6 months. If you want to rejoin the scheme within these timescales you need to contact Motability direct to discuss your options.

For more information go to the Motability 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.

If you are at all concerned about AKU, please contact Lesley Harrison at [email protected].

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

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.

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. More information can be found here.
Hospital transport can be arranged for the most in-need patients attending the National AKU Centre (NAC). Please contact [email protected] if you would like to discuss travel to the NAC.

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:

  1. you receive the War Pensioners’ Mobility Supplement
  2. you receive the higher rate of the mobility component of Disability Living Allowance (DLA)
  3. 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
  4. 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
  5. you have been awarded a lump sum benefit from the Armed Forces Compensation scheme at tariff level 6 for a mental disorder
  6. 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:

  1. you have a permanent or substantial disability which means you can’t walk or find walking very difficult
  2. you are a driver and have severe upper limb disabilities
  3. 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.
  4. 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
  5. 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 the national blue badge helpline on 0844 463 0215 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:

  1. epilepsy
  2. strokes
  3. other neurological conditions and mental health problems
  4. physical disabilities
  5. visual impairments

Ricability

Ricability is the trading name of the Research Institute for Consumer Affairs (RICA). It is a national research charity dedicated to providing independent information of value to disabled and older consumers.
Ricability publishes booklets aimed at motorists with disabilities. They also offer unbiased information and consumer guides on home and technology products.

Wheelchairs

NHS Wheelchair Services are run by local health authorities and NHS Trusts. They offer assessments to determine what type of wheelchair or mobility equipment you may be entitled to on the NHS.
In most cases, you’ll be referred to the service by a hospital, doctor, consultant or occupational therapists. In general, wheelchair services are available to people of all ages who have a long-term need for mobility help. However, the specific criteria for whether you’re eligible are decided locally and will vary depending on where you live.
Before you can be offered a wheelchair, you’ll have to undergo an assessment. This will determine if you’re eligible and, if so, what type of mobility equipment is most appropriate. The assessment is normally carried out at NHS wheelchair services centres or clinics.
There is no one-size-fits-all policy, which means you will be assessed according to your individual needs. The assessment should take into account your physical and social needs, as well as the environment in which you live and work.
Many wheelchair services have a waiting list for assessment appointments, so you may have to wait several weeks after being referred to have an assessment.
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.