Family Support

Family Support


Helpful Hints and Tips

This information is part of a series that we will be producing to help individuals and families. Please let us know any topics which would be most helpful for you and your family and we will compile information onto our website and in each newsletter. You can do this by either emailing Catherine at or calling 01803 613117. We are always pleased to hear from you.

The first one we have produced is:

The Care Act 2014 – are you getting what you are entitled to? and this can be downloaded here

Please share this document or print it out for any family members and/or professionals who are involved in supporting people who are affected by Alström Syndrome.

You are welcome to use this series of helpful hints in any training or presentations, all we ask is that you acknowledge ASUK as the source.

Our dedicated and passionate Family Support Team offer personalised family support across the UK

If you would like to share your own experience of the assessment process, please email us. It is helpful to share ideas, especially about how people have argued their case and obtained a good care package. We know it is easier in some areas of the country than others and we can all learn by sharing.

We hope you find these resources useful.

Please find below a collection of links to other resources on the internet. Please let us know if you have any suggestions.

Links to websites with information about Alström-related conditions. Most of these are not specifically for medical professionals.

Information about Cardiomyopathy
Please note that people with Alström Syndrome are much more likely than average to recover from this condition.

Wikipedia entry – Nystagmus
Nystagmus (wobbling eyes) is common in people with Alström Syndrome.

Genetic Alliance
Genetic Alliance UK is the national charity of patient organisations supporting all those affected by genetic disorders.

Rare Disease UK
The National Alliance for people with rare diseases & all who support them.

The voice of rare disease patients in Europe.

Counselling Directory
The Counselling Directory enables you to a suitable counsellor, and they are dedicated to making the process as simple as possible, providing individuals in need with all of the information they require to make the most well informed decisions.Counselling Directory aims to be the leading service for providing counselling advice and information – connecting those in distress with the largest support network in the UK. They understand how important it is to find the right counsellor, the one that is exactly suited to your individual situation, have a look on their website for further information of the counselling services available in your local area, as a general rule counsellors with more experience will be accredited with the BACP.

Help with special needs education, disability allowances and further information

New College Worcester
New College Worcester is a co-educational residential special college for blind and partially sighted pupils aged 11 – 19 who are able to access the full range of the National Curriculum and progress to study post 16.

The Royal National College for the Blind
Further Education College for those aged 16 plus with visual impairments, located in Hereford

Queen Alexandra College
A National College for Learners with Disabilities, located in Birmingham

WESC Foundation
Specialist day and residential centre for visual impairment, located in Exeter, South Devon

Scottish Sensory Centre
For everyone who is involved in the education of deaf children, deafblind children and visually impaired children and young people, the young people themselves and their families.

Contact a Family
Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability.

Sense provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. We also support people who have sensory impairments with additional disabilities.

Irwin Mitchell Solicitors and Sense
Irwin Mitchell Solicitors have teamed up with the deaf-blind charity Sense, to offer a range of services, fact sheets and template letters for families. These are in conjunction with part 3 of the Children and Families Act 2014 .

Visual impairment is typical in people with Alström syndrome.

Great Ormond Street have published a Resource for Children and Young People who have a visual impairment and their families it is full of lots of useful information. Including practical and emotional support, recreational groups, career advice, technology and support services. You can download a copy here.

Action for Blind People
Action for Blind People is an expert national charity that provides practical support to blind and partially sighted people through work, housing, leisure, benefits and support. Actionnaires Clubs provide sports activities for children. Action have some excellent hotels for blind and partially sighted people.

Deafblind UK
Deafblind UK offers comprehensive services to deafblind people, their support assistants and other professionals. These include training in communication and rehabilitation skills; a free 24 hour helpline; a regional network of staff and volunteers; a varied leisure programme and a range of publications in different reading formats.

National Blind Childrens Society
Large print book service, activities, holidays and support.

The UK’s leading charity offering information, support and advice to over two million people with sight problems.

RNIB Library
Access to free Braille and Audio books to borrow and enjoy

Living Paintings
Access to free tactile books for you to borrow and enjoy

The Guide Dogs for the Blind Association
Providing guide dogs and buddy dogs for the visually impaired.

Alström Syndrome can cause hearing loss, and occasionally deafness.

Hearing dogs for the Deaf
Train dogs to alert deaf people to specific sounds, whether in the home, workplace or public buildings.

RNID supports deaf and hard of hearing people at home and at work, providing help, advice, equipment and even supported housing.

The world of benefits can seem a maze of information, complex form filling and how do you know what you are entitled to?  There are many organisations who can help, offering advice, support and information. ASUK also has a team of Support Workers who offer personalised support to individuals and families affected by AS, so please get in touch.

The following organisations offer support, advice and useful information:

Provide resources on a range of topics including benefits, financial support and a useful benefits calculator to see how much you could be entitled to. They have also produced comprehensive resources about Personalised Independence Payment (PIP) including a PIP toolkit which includes a useful FAQ section. This useful information can be found here. The RNIB offer a helpline 0303 123 9999 and these resources can be requested in alternative formats including a CD.

Provide guidance on benefits and support which should be available for people who are deafblind.
Councils across England and Wales must follow guidance on how services should be provided for people who have dual sensory loss. This guidance was produced to ensure people who are deafblind receive the support and services they need by their local authority. Information about the deafblind guidance can be found here.

Contact a Family
Provide support and information for families, no matter what their condition or disability. This includes information about benefits, welfare rights, local services and support, activities and education.  You can also call their freephone helpline for parents and families on 0808 808 3555.



Media Reviewed: March 2017
Next Review: March 2019