Guidance, support and how to stay healthy, active and thrive!

Please find below information and website links to further organisations who can give specific advice and guidance regarding some of the specific areas which can affect those who have been diagnosed with Alstrom Syndrome.

Don’t forget that your Family Support Worker can also advise, get you in touch with the right people and make contact with the Alstrom Syndrome specialists in Birmingham if you have any specific questions relating to Alstrom.

If you have an immediate health concerns please visit your GP or Consultant in your local area and for all emergencies your first point of call should be your local A&E department or to call 999.

All about the eyes

The eyes are often the first indication that you may be affected by Alström Syndrome.
Children who are affected may have an involuntary rapid movement of the eyes, which is referred to as Nystagmus or wobbly eyes and extreme photophobia which is a extreme sensitivity to light.

Eyesight can often deteriorate during childhood but the progression of vision loss is different from person to person. Often dark glasses are used both indoors and outdoors to combat photophobia. We support the need to teach IT and Braille at an early age as possible.

Some of the organisations below provide further information and advice:

NHS

The National Health Service (NHS) provide information about vision loss and organisations which give you information and support.

Nystagmus Network

A UK charity offering support and information for people affected by nystagmus (wobbly eyes).

SeeAbility

Are a charity who provide specialist support, accommodation and eye care help for people with learning disabilities, autism and sight loss. They also provide useful eye care fact sheets.

RNIB

The Royal National Institute for the Blind (RNIB) charity offer a wide range of services and information relating to sight loss, including an online community and help-line.

RSBC

The Royal Society for Blind Children charity provide a range of services in London and across England and Wales for blind and partially sighted children and young people, their families, and the professionals who work alongside them.

Sense

The charity sense offer a wide range of services for those who are affected by both vision and hearing loss. Including information, support, family events and sense colleges and day centres.

Visualise

Visualise work with organisations to increase awareness of the accessibility challenges faced by employees and/or customers with disabilities. Founder, Daniel Williams, who has an eye condition called Retinitis Pigmentosa which causes gradual sight loss, established the business in 2014 in order to share his knowledge, skills, experience and expertise in this field. Click HERE for the Visualise resource pack designed to help people facing sight loss – it provides lots of useful information about support services and suppliers of assistive technology and equipment.

All about hearing

Hearing loss can occur for people affected by Alstrom. This varies greatly from person to person and should be checked regularly. Hearing aids can help considerably and a small number of adults have been treated successfully with cochlear implants.

Action on Hearing Loss

The charity support people across the UK to manage their deafness, tinnitus and hearing loss. Providing information and community-based care and support services and campaigning for equality. They also offer comprehensive factsheets about cochlear implants and how to get hearing aids and how to adjust them, click HERE to view these.

BID Services

Are a charity who offer support for children, young people and adults and their families and carers, who are deaf, hard of hearing, visually impaired or have a dual sensory loss. Their services include advocacy, employment and housing advice and specialist equipment advice and mobility training.

All about dual-sensory loss

Deafblind UK

Offer support for people affected by dual sensory loss, both hearing and sight loss. they offer a comprehensive guide to both hearing and sight loss, getting the benefits you are entitled to and also provide a range of services such as activities and events.

Sense

The charity sense offer a wide range of services for those who are affected by both vision and hearing loss. Including information, support, family events and sense colleges and day centres.

All about the heart

Alstrom can cause the heart muscle to pump less efficiently. This is known as cardiomyopathy. This often occurs in infancy but the heart often recovers, although not completely, and can reoccur or present for the first time in later life. It is important for all people affected to have an annual cardiac review.

Cardiomyopathy UK
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.

British Heart Foundation (BHF)

Offering advice and support regarding different types of heart conditions, including healthy recipes to try.

All about Diabetes

Insulin resistance is often present from infancy, but progression to type 2 diabetes is influenced by lifestyle. This can be impacted by increase in appetite, gaining weight more rapidly and restrictions around exercise due to dual-sensory loss. A healthy lifestyle including a healthy diet and exercise is very important in the overall management of Alström.

Diabetes UK

Offering support and information to people affected by Diabetes including useful resources such as living a healthy lifestyle, recipes and research developments.

All about our wellbeing and mental health

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.

Counselling Directory

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.

There are many charities who offer support, advice and information to support our mental wellbeing some of these charities are:

Mind

Mind offer support and information including useful guides on support and services available, you can view these here.

Young Minds

The charity Young Minds offer support and information for young people experiencing mental health challenges and their parents. They offer guides around support which can be found here as well as a beginner’s guide to the NHS’s Child and Adolescent Mental Health Services (CAMHS) for young people and parents, this guide can be viewed here.

All about Living Well

Often people affected by Alström gain weight rapidly and in some, increased appetite (hyperphagia) is a factor. Considerations are also needed to find the right exercise programme takes into account the person’s dual sensory loss . Help from a dietitian is recommended from an early age as possible for specific help and advice.  In our experience, adults have been seen to benefit from modest restriction of carbohydrate as well as calorie control and exercise.  Diet and exercise are very important in the overall management of Alström and ASUK encourage healthy lifestyle choices by providing grants for exercise equipment or specific exercise programmes such as gym or swimming membership.

The NHS has advice and guidance on their ‘Live Well’ website. Follow the link here to find out more.

What are you entitled to?

ASUK have brought together some useful ‘Hints and Tips’ around the Care Act and how to receive a specialist assessment which should take into account your daily support needs. This can be downloaded here

Implementing the Care Act – The charity Sense also provide guidance on Deafblind assessments. Click here to read about how you can request and evidence your requirement for a specialist deafblind assessment.

Direct Payments and Personal Budgets

A direct payment is one of the ways you can receive money from your local council to help you pay for your support needs. Choosing to have a direct payment gives you more control over the services you use and who provides these.

Each local authority will have their own guidelines around Direct Payments, but we have gathered some general advice to follow:

The charity Sense offers a comprehensive guide around how to pay for your support:
https://www.sense.org.uk/get-support/information-and-advice/paying-for-your-support/direct-payments/

Carers UK, provide an easy-to-read guide including what you can and can’t use Direct Payments for:
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments

Age UK provide detailed factsheets about Direct Payments and Personal Budgets:
https://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs24_personal_budgets_and_direct_payments_in_social_care_fcs.pdf

The NHS provide useful information about Personal Budgets and Direct Payments:
https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/personal-budgets/

Carers Assessment

Generally when a person asks to be assessed for direct payments, a carers assessment will also be needed.

Carers UK offer practical support and information about these assessments:
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments 

Care and Support for Deafblind Children and Adults – DoH Policy Guidance

Useful information issued by the Department of Health, it provides policy guidance in relation to the Care Act 2014. To read the document in full click here.
You have the right to ask for a Specialist Deafblind Care Assessment from social care if you have sight and hearing loss of any level. You do not need to be profoundly deaf or blind for this request to apply to your own circumstances.

Blue Badge; Disabled Parking Permits

The charity, Contact for families with disabled children offer comprehensive information about the blue badge scheme and how to apply. This is usually done through your local authority.
A blue badge costs up to £10 in England and £20 in Scotland, it is free for people residing in Wales. They usually last 3 years before you need to reapply.
New rules will come into force from the 30th August 2019 which will take into account hidden disabilities as well as many people now being able to automatically qualify if they meet specific rules. You can read the full information here
The Government have also announced a new online system which means applicants can complete the whole process online, hopefully making it easier and quicker to apply.

To apply online you will need a photo or scan of your:

• proof of identity (such as a birth certificate, passport or driving licence)
• proof of address (such as a Council Tax bill or government letter)
• proof of benefits (if you get any)

You will also need to provide a recent digital photo showing your head and shoulders.

You’ll also need to know:

• your National Insurance number (if you have one)
• the details of your current Blue Badge (if you’re reapplying)

You can find further information and apply online here

Challenging a decision 

The local authorities don’t always make the correct decisions, so just in case this happens we have provided some useful links about what to do next. But please don’t forget your ASUK Family Support Worker is here to help and support you through this process.

Your local authority should have a complaints process in place to resolve your complaint. If you feel your complaint hasn’t been resolved then your next step will be to make contact with the Social Care Ombudsman Service.

A useful link in challenging social care decisions around Adult Social Care can be found at CASCAIDr  which stands for the Centre for Adults’ Social Care – Advice, Information and Dispute Resolution
https://www.cascaidr.org.uk/

The Local Government and Social Care Ombudsman
This is a free service, which is often the final stage for complaints about councils, all adult social care providers (including care homes and home care agencies) and some other organisations providing local public services.
‘We investigate complaints in a fair and independent way – we do not take sides.’ (quote from the IGO website)
https://www.lgo.org.uk/

Please also refer to the resource section ‘All about Support from your Local Authority’ which will also give guidance about your rights and benefits.

What are you entitled to?

ASUK have brought together some useful ‘Hints and Tips’ around the Care Act and how to receive a specialist assessment which should take into account your daily support needs. This can be downloaded here

Implementing the Care Act – The charity Sense also provide guidance on Deafblind assessments. Click here to read about how you can request and evidence your requirement for a specialist deafblind assessment.

Care and Support for Deafblind Children and Adults – DoH Policy Guidance – Useful information issued by the Department of Health as it provides policy guidance in relation to the Care Act 2014. To read the document in full click here.

Blue Badge; Disabled Parking Permits
The charity, Contact for families with disabled children offer comprehensive information about the blue badge scheme and how to apply. This is usually done through your local authority.
New rules will come into force from the 30th August 2019 which will take into account hidden disabilities as well as many people now being able to automatically qualify if they meet specific rules. You can read the full information here
The Government have also announced a new online system which means applicants can complete the whole process online, hopefully making it easier and quicker to apply. You can find further information and apply online here

Working Families
Supports working parents and carers and their employers find a better balance between responsibilities at home and work. They offer a legal help-line to give parents and carers advice on employment rights, benefits and entitlements.

They also offer resources for parents of children who are affected by disabilities including knowing your rights, choosing childcare, entitlements and information about the ‘Waving not Drowning Network’ project. This project provides a helpline, newsletter, e-bulletin and occasional events and publications for parents of disabled children and carers of adults who want to combine paid work with their caring responsibilities.
You can find out more about these resources here

Renaissance Legal

Renaissance Legal specialise in working with families and carers of disabled and vulnerable individuals, helping them plan effectively for the future.

Office for Disability Issues (ODI)

Part of the Government Department for Work & Pensions. The ODI supports the development of policies to remove inequality between disabled and non-disabled people. Read the latest policy paper on disabled people’s rights following the UK’s first periodic review here: Disabled people’s rights: info following the UK’s 1st periodic review

Local Government and Social Care Ombudsman Service 
This is a free service, which is often the final stage for complaints about councils, all adult social care providers (including care homes and home care agencies) and some other organisations providing local public services.
‘We investigate complaints in a fair and independent way – we do not take sides.’ (quote from the IGO website)

Information and services should be in a format which is accessible for you and your needs.

The RNIB have useful resources on their website on many topics including accessibility. Click on the link HERE to find out more about accessible information, your rights, TV accessibility and talking ATM’s.

RNIB also offer a reading service called ‘Talking Books’. This is a free service and the RNIB Library website offers all these reading services in one place.  This includes Audio, Braille, Giant Print, Music – there is so much to access, borrow and enjoy. They also have a library helpline you can call on 0303 123 9999.

Living Paintings design, create and publish tactile and audio books for blind and partially sighted people.  They call these Touch to See books. They publish titles suitable for anyone from pre-school to adult. The range is designed to provide education and life-long learning, enhance lifestyle and support leisure interests.

RoboBraille allows users in 4 easy steps to covert files into an accessible format, the converted file is then emailed to you.

Educational Health Care Plans (EHCP)

IPSEA (Independent Parental Special Education Advice)
IPSEA is a registered charity offering free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). They also provide training on the SEND legal framework to parents and carers, professionals and other organisations. They have some useful sample letters and information for families and professionals alike.

Noddy Guide by David Wolfe– relates to different aspects of EHCP

SOS!SEN The Independent Helpline for Special Education Needs. Offer a free, friendly, independent and confidential telephone helpline for parents and others looking for information and advice on Special Educational Needs (SEN).

Council for Disabled Children – A guide to what an EHCP should contain can be found here

The School Run – A website for primary-school parents who want to help their children with their education and make sure they stay healthy, have fun and get the best possible start in life.

EHCP Journeys – This site provides real-life examples of what it is like to go through the EHC process from the perspective of children, families and young people who are going, or have gone, through it. It also discusses ways for services to get feedback on their local delivery.

Contact are a charity for families with disabled children who provide support, guidance and information.

Early Years

Technology has come a long way since tape recorders and mobile phones the size of bricks!

It can often be tricky to keep up to date with the most useful technology for your needs, so we have brought together some resources and useful organisations who can support you to be techno savvy!

Smartphones and tablets

Many of the mobile phones and tablets that are on the market today have in-built accessibility features such as voice activation, magnification and text-to-speech features. This means that you can make your device easier to use simply by adjusting the settings.

To keep up to date with emerging technologies in a fun blog for people with visual impairment Cool Blind Tech offers news, views and interviews on the best assistive technology.

AppleVis is a community-based website that offers support for people who are visually impaired and use Apple products.

The Perkins website Paths to Technology has been designed to assist educators, families and students with visual impairments and blindness who are in learning and to enable them to stay up to date in the ever-changing technology world.

There are so many different types of equipment, it is often good to go along to a support centre to try out different types in your local area. Here are a few examples of useful equipment and organisations who can support in your search.

Braille Devices

The Perkins website, Paths to Technology gives an overview of the different types of Braille devices such as; Braille display, smart display or a notetaker. It gives examples of each and tips to ensure the product you choose is right for you.

A braille display puts exactly what is on a computer, phone or tablet screen into braille on a device. It works alongside screen-readers such as Jaws, NVDA and Apple VoiceOver. Braille displays come with a Perkins style keyboard so users can either type using the computer keyboard or the braille display keyboard.

A braille note taker is like a laptop but instead of it having a screen, everything is displayed in braille and also has a built in screen-reader. There are two types of braille note-takers: a Perkins-style keyboard and one with a QWERTY style keyboard.

ClearReader, uses text-to-speech software to read printed documents out loud. For example, books, newspapers, magazines, letters and so much more. There are many different interpretations of these from various developers and companies.

RNIB offers technology support, including finding the right accessible technology and software for you. They also have an RNIB shop which offers various accessible products including the:

RNIB PenFriend is a labelling tool, it allows people to create personalised audio labels of things around the home. Stick a label on a product, record an audio clip of what it is and next time you need to know, scan the pen friend on the label and it reads the audio message out loud.

Apps

There are lots of apps on the market which are designed to help people with sight and/or hearing loss. Why not get in touch and tell us which apps are your favourites too:

Prizmo Go – an easy to use text-to-speech app
Seeing AI – narrates the world around you!
TextHear – real time text to speech translation
Spuble – turns spoken words into text
Aipoly Vision – identifies objects and colours
TapTapSee – photographs objects and reads aloud what they are
Visor – a magnifier and LED torch
Blind Square – GPS navigation
Boop Light Detector – tells you whether lights are on or off
Sound Alert – vibrates and flashes to alert you to household sounds like the doorbell, microwave, alarm clock etc.
NGT Lite – translates speech calls to text
Welcome – lets participating venues (shops, restaurants etc) know how best to help you

Voice activated technology

Through funding, in 2019/20 ASUK was able to provide youngsters with a Google mini-assist – which is one of a growing market for voice-activated devices, such as the Amazon Echo, or you may know her as Alexa! These are small internet-enabled speakers which will play music, search the internet, set alarms, tell you what the weather is like – and much more – all using voice activation. For people with dual sensory loss these products are extremely accessible and open up a whole new world of information.
The RNIB article ‘How does the Amazon Echo help people with a visual impairment’ offers some insights into why the Amazon Echo is benefiting many people, particularly those with vision loss.

GPS assistants

Google Maps on your own smartphone is a great way to get to where you need to be. For example with some configuring, it might vibrate once to tell you to turn right and vibrate twice to tell you to turn left. There are other devices too you could try such as a personal GPS device, like the Trekker Breeze.

Home safety

It is important to think about how to stay safe in your home. Many options and devices are available online such as  a vibrating or flashing smoke detector, doorbell and security alarm to give extra piece of mind.

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.

Victa
Provide support for children, young people and their families. They offer fun family activities throughout the year. You can view the 2017 list of activities here and the 2018 calendar of activities can be viewed here

The Outlook Trust
Provide adventure sports, activity week-end breaks and holidays for children who are blind or visually impaired.

RNIB
RNIB offer a range of activities and family events to get involved in. Including Actionnaires Clubs for 4 – 16 year olds. The clubs are provided throughout the UK and offer a range of activities including music, drumming, ten pin bowling, art,dance. swimming, athletics, basketball, goalball, judo, skiing, climbing, pizza making and attraction visits.

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!

Climbing Out
Climbing out is based in the Lake District and offer fully funded activity breaks

Over the Wall
Providing fully funded activity breaks for disabled children.

The Bendrigg Trust
Offering a residential activity centre for people, of any age or ability in Cumbria.

ACUK Centres
Offering 5 venues across the Midlands, offering accessible accommodation and activities for all abilities.

Aerobility
Aerobility enables disabled and profoundly ill adults and children to share the magic which flying light aircraft brings – rediscovering smiles with the awakening experience of flight.

There are so many sports which are accessible for all, why don’t you have a go at trying something new.

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.

Accessible Sporting Organisations

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 offer ‘have a go’ events, information and the links below will also help you find activities and running guides in your own area.

They have an ‘Activity Finder’ on their website where you can find accessible sporting activities in your local area. Head across to the British Blind Sport Activity Finder page to find out more.

If you are looking for a guide to support you with your running, British Blind Sport also offer a ‘Find a Guide’ resource where you can enter your postcode to find support near where you are. You can find more information HERE

British Paralympics Association

In need of inspiration – head across to The British Paralympic Association (BPA) website. This is where you will find all about the Paralympics and find out more about the Paralympics GB team British Paralympic Association website.

Metro sport

Metro is a London based Sports and Social Club for blind and partially sighted people of all ages. Members include many of the UK’s top international sports men and women, as well as those who are new to sport or who want to enjoy less competitive activities. For further information visit the Metro blind sport website.

Disability Sport Wales

The Disability Sport Wales National Community Development Programme is a joint initiative between Sport Wales, the Federation of Disability Sport Wales and the 22 local authorities across Wales. The scheme is aimed at developing quality community based sporting and recreational opportunities for disabled people throughout Wales. For more details visit the Disability sport wales website.

Archery

British Blind Sport Archery

Archery is accessible for all and there are many levels of archery, from being a recreational archer to being local, regional, national and international competitors. You can find out more on the Archery pages of the British Blind Sport website.

Blind cricket

The main difference between standard cricket and blind cricket is the ball. A size three football is used in UK blind cricket to help the partially sighted players to see it. It’s filled with ball bearings to allow the totally blind players to hear it.

Blind Cricket England & Wales (BCEW)

The BCEW have been working in partnership with British Blind Sport and the England and Wales Cricket Board since 2006 to deliver competitive cricket for those who are blind or partially sighted running national and international competitions. Find out more about blind cricket from youth development, the national league and cup competitions to the England team. Head across to their website to find out more BCEW website.

Cycling

By using specially adapted trikes or a tandem you can have a go at cycling which is accessible for you.
ASUK started a bike club in 2012 to fund adapted trikes and tandems to those who wanted to experience the joy of cycling in an accessible way. This was a great opportunity for families to cycle together and get fit in a fun way.

Wheels for All provide cycling events around the country and have centres to support individuals and families to cycle together. They can also help source suitable equipment. There are 50 centres across England and Wales; you can find your nearest centre HERE

Blind Football

Blind Football is a fast paced 5-a-side football played by athletes who have visual impairments using a ball with a noise-making device inside. It is played on a smaller pitch surrounded with a rebound wall. The sport is played with no throw-ins and no offside rule, which ensures non-stop action. Matches are played over two halves of 25 minutes each, plus 10 minutes for half-time. Blind football matches involve two teams with four outfield players and a goalkeeper. The outfield players are visually impaired (VI) and wear eye-shades to ensure fairness. The goalkeeper may be fully or partially sighted.

The game was only introduced as a Paralympic event in 2004. There is more dribbling and short passing than in the mainstream sport, and crowds remain quiet during play to ensure that players can hear the ball, their team-mates and opposition players.

British Blind Sport runs the national 5-a-side football league for visually impaired players. It also hosts football development days throughout the country and an annual national schools tournament (for under 18’s).

The FA run both an England Partially Sighted team and an England Blind team football. These teams compete at the European Championships and the World Cup.

You can find out ore on the Disability Football Directory

You can watch footage of David Beckham playing blind football on the YouTube clip above.

Going to the football?

‘Level Playing Field‘ work with those who provide live sporting events to ensure that sports fans with disabilities have a positive inclusive experience.

Bowls

The Scottish Association for Blind Bowlers – SABB

By the use of minor variations, blind and sighted people are able to play together as these variations do not infringe upon, or alter in any way the basic rules of the game. But they certainly do improve the standard of bowling.

Visual Impaired Bowls England is made up of 25 member clubs, and nearly 300 members.

The Scottish Association for Blind Bowlers (SABB) has 12 clubs in the association at the present time, and all are seeking new members and volunteers (bowling assistants). A full list of clubs and contacts will be found on the Scottish Association of Blind Bowlers website.

Goalball

What is goalball?

Goalball is an exciting Paralympic, indoor, 3-aside team sport, of attack and defend – with a unique twist! The sport was originally devised in 1946 to help rehabilitate soldiers who had lost their sight during the war. It has been played throughout the world ever since, at the highest level, by people who are blind or partially sighted.

Goalball is a truly inclusive sport in that fully sighted players can also play domestically. This is because everybody is required to wear eye shades so that nobody can see. Players therefore have to rely entirely on their other senses.

The ball contains internal bells so players are able to track its movement by its sound, whilst the court is marked out with tactile lines so players can feel where they are. The idea of the game is quite simply to score goals by bowling the ball along the floor, past the opposing team.

Where can I play?

To find your nearest Goalball club, please visit the club teams section of the Goalball UK website or register your interest by calling 0114 223 5670 or emailing enquiries@goalballuk.com.

There are 3 levels of play within the Goalball UK National League (Novice, Intermediate & Elite) with competitions at all levels, throughout each season regionally and nationally.

Goalball UK also runs a number of individual entry tournaments that allow players to play with players from other clubs across the country.

For information about the domestic league and competitive playing opportunities, please contact Goalball UK on 0114 223 5670 or email enquiries@goalballuk.com.

Golf

England & Wales blind golf is a registered Charity, providing people with visual impairments the opportunity to participate and compete in the game of golf. Blind Golf is played strictly to the Royal & Ancient Rules of Golf with the exception that players are allowed to ground their club in a hazard.

The Scottish Blind Golf Society is a registered charity which provides competition and training in golf for registered blind and visually impaired people in Scotland, recognised as a governing body by The Royal & Ancient Golf Club of St Andrews.

Sailing

East Anglian Sailing Trust provides opportunities for sailing for people with visual impairments. Head across to their website to check out their latest events and sessions.

Blind Sailing is a Registered Charity, which aims is to help blind and partially sighted people sail at all levels. They organise regular training sessions, racing events and provide coaching and help to enable novices learn to sail.

Sailability 

Sailability is the Royal Yachting Association (RYA) national programme enabling people with disabilities to try sailing and take part regularly.  Sailing is open to anyone, no matter what age or disability.  You don’t need to be able-bodied, or even a strong swimmer.  The network of approved Sailability sites will have boats and facilities to cater for everyone.

The Visually Impaired Sailing Association of Great Britain is a membership organisation run by blind and partially sighted sailing enthusiasts to help others enjoy the freedom of sailing. Get in touch with them on their website to find out more VI-SA-GB

Having a complex condition can sometimes make living independently and traveling a challenge but with the right support and planning this can be overcome. In this section we have brought together useful resources to support you to stay independent.

Many local authorities have their own specific information about independent living services in your local area. This is often a good place to start if you would like to know what services are available locally for you.

Please feel free to contact your Family Support worker who will also be able to offer support and guidance.

All about Independent Living

Disability Rights UK offer a range of factsheets about independent living. These can be viewed here.

 Guide Dogs for the Blind provide guide dogs which have been trained to help people affected by visual impairments to live independently. Guide dogs can benefit both children and adults, by increasing confidence, self-esteem, independence and mobility. Guide Dogs for the Blind also offer a range of services such as family events, family grants, mobility training, education and family support and offer a sighted guide service for adults. They also offer CustomEye books which can be produced specifically to suit your child or young person.

All about Rail Travel

National Rail offer assistance to enable passengers with disabilities to travel. You can book to get help at any station for any train journey.

The train company can organise for someone to:

• meet you at the entrance or meeting point and accompany you to your train
• provide a ramp on and off your train if you need one
• meet you from your train and take you to your next train or the exit
• carry your bag (up to three items of luggage as per the National Conditions of Travel)

You can book help at short notice, but some companies may ask for up to 24 hours’ notice. You only need to contact one train company and they will organise assistance for your whole journey. You can book assistance by phone or online with the company directly or centrally via the links and numbers below:

You can get a 1/3 off with a Disabled Persons Railcard for travel on the National Rail network in Great Britain. If there is another adult travelling with you, they can also get 1/3 off their rail fare. You can use your rail card to get discounts any time of day and costs £20 per year. Further information can be found here

If you don’t have a disabled rail card but are blind or visually impaired and need to travel with another person, you can get the following discounts:

• First Class or Standard – Anytime Single or Return – 34%
• First Class or Standard – Anytime Day Single – 34%
• First Class or Standard – Anytime Day Return – 50%

These discounts won’t apply if you travel on your own.

Season Tickets for blind or visually impaired people

This is often a topic, which we choose to leave for another day, but planning for the future is important. We hope some of the resources below will support you with this:

The charity Mencap, offer an array of resources about planning for the future.

They also provide seminars about Wills and Trusts and how to plan for the future for your loved ones when you are no longer around. Their approach is jargon free, impartial advice and a solicitor will be available to answer any questions.

You can also register with Mencap to download their Trusts and Wills guide.

Renaissance Legal specialise in working with families and carers of disabled and vulnerable individuals, helping them plan effectively for the future with Wills, Trusts, Powers of Attorney, Court of Protection applications and Inheritance Tax Planning.

They offer a wide range of fact sheets on their website to help with planning, including:

Renaissance Legal offer a fact sheet about ‘Guide to Decision Making’

Renaissance Legal also offer a fact sheet about ‘Trusts for Disabled and Vulnerable People’

Coping with loss and grief

Your first thoughts when you hear the words, loss and grief is the thought of the death of a loved one, which is often the most intense form of grief. But any loss can cause grief, the loss of your job, divorce, health or even the loss of your dreams and aspirations. Whatever your loss, it is personal to you and there are ways you can cope and in time move on with your life in a positive way.

The NHS provide information about seeking help with grief after a bereavement or loss.

Cruse bereavement support offer support, information and advice to all ages when someone dies.

The Good Grief Trust

The Good Grief Trust exists to help all those suffering grief in the UK. They aim to find the bereaved, acknowledge their grief and provide reassurance and a hand of friendship and ongoing support. Their vision is to bring all bereavement services together around the country, to ensure that everyone receives the support they need.

Child Bereavement UK supports families when a child sadly dies or is dying and when a child is facing bereavement.

Mind offers information and support for those bereaved, including blogs of personal stories.

Young Minds support young people and their parents to cope with grief, including information on ways to work through your grief and showing personal real stories of how people have come to terms with their grief and moved on positively.