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 note that this financial information is only relevant to those living in the UK.
Please see below for more information and useful links:
Contact the Department of Work and Pensions (DWP) to see if you are entitled to any benefits including:
There have been major changes to the Welfare system affecting benefits. For the most recent information check the DWP website.
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.
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.
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 (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.
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:
For existing Scheme customers, eligibility to remain on the Motability Scheme will therefore depend on the outcome of their assessment for
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.
The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more
Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more
This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more
Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people o.. ...more
Our annual ‘Stand Up to AKU’ night is rapidly approaching and here at the AKU So.. ...more