In this section you will be able to find useful resources and links to other organisations who may be able to offer further support and guidance.
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 firstname.lastname@example.org 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.
Please find below a collection of links to other resources on the internet. Please let us know if you have any suggestions.
The organisations below campaign on behalf of people who are affected by rare conditions, to improve services for all.
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.
Driving research and treatments for the rare disease community.
Help with special needs education, disability allowances and further information
Provides free resources on their website for families to download to help get the support they need for their children and young people who are affected by special educational needs and/or disability (SEND). They also provide an advice line which offers, legally based information on any educational issue that is the result of your child’s special educational needs or disability. This could include problems with schools, requesting statutory assessment, statements and Education, Health and Care Plans, annual reviews, disability discrimination and exclusion. You can book an appointment to speak to one of their advisors via their website or call 01799 582 030
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
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 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.
Access to free Braille and Audio books to borrow and enjoy
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.
Provides useful resources about children and young people up to the age of 25 who are affected by disabilities and special needs. They offer information resources from parents perspectives and useful SEND information to download.
Click here to read more about the changes to SEND provision for early years children and how this may affect you.
Links to websites with information about Alström-related conditions. Most of these are not specifically for medical professionals.
Offering information and support for people affected by Cardiomyopathy.
Please note that people with Alström Syndrome are much more likely than average to recover from this condition.
A UK charity offering support and information for people affected by nystagmus (wobbly eyes).
Offering support and information to people affected by Diabetes including useful resources such as living a healthy lifestyle, recipes and research developments.
Preparing for Adulthood
Providing resources and information for young people who are affected by disabilities as they move into adulthood. They offer specific expertise and support with paid employment, good health, independent living options and friends, relationships and community inclusion.
The Counselling Directory enables you to find 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.
Please find below resources and useful organisations who offer a range of activities. Please see the links below to find further information and please get in touch if you have any suggestions you would like to add:
British Blind Sport
The aim of this charity is to ensure people who are blind or visually impaired have opportunities to enjoy sport and recreational activities in the UK. They have recently launched ‘Find a Guide Database’ where anyone over the age of 18 can look for guide runners in their area. The guides are fully trained and DBS checked.
The Outlook Trust
Provide adventure sports, activity week-end breaks and holidays for children who are blind or visually impaired.
RNIB offer a range of activities to get involved in.
Currently they are offering three residentials for young people aged between 14 – 17 years old who have a visually impaired. This project will aim to increase self-confidence and independence, to gain new friends and to develop skills of working with others. There will also be an opportunity to gain the John Muir Award through discovering, exploring and looking after the natural surroundings. Those taking part in the project will have the chance to agree the activities that are undertaken which may include; team games, low ropes courses, climbing, canoeing, wildlife walks, bushcraft, an overnight camp out and a conservation activity. Closing date to apply is the 31st May 2017
The Calvert Trust
Providing three activity centres two in the North and one in the South of England where anyone affected by a disability can explore a range of accessible adventure activities. ASUK have used the Calvert Trust centres a number of times and we have always been very impressed with the range of activities, accessible accommodation and welcoming staff, who believe it is what you can do that counts!
The Bendrigg Trust
Offering a residential activity centre for people, of any age or ability in Cumbria.
Offering 5 venues across the Midlands, offering accessible accommodation and acticvities for all abilities.
Media Reviewed: March 2017
Next Review: March 2019