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Further Support and Helpful Hints

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 Catherine.lewis@alstrom.org.uk 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.

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.

Further Support

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

Medical links

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.

EURORDIS

The voice of rare disease patients in Europe.

Counselling Directory

The Counselling Directory enables you to find the perfect 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.

Resources for parents and carers

Help with special needs educations, disability allowances, etc

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.

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

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 .

Resources for blind and partially sighted people

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.

RNIB

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

The Guide Dogs for the Blind Association

Supply guide dogs for the visually impaired.

Resources for the hard of hearing

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

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

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Media Reviewed: August 2015
Next Review: August 2017