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@example.com.
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.
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.
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.
Hospital transport can be arranged for the most in-need patients attending the National AKU Centre (NAC). Please contact firstname.lastname@example.org if you would like to discuss travel to the NAC.
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:
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:
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.
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:
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.
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.
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