The National Neurology Patient Experience Survey showed that more than half of the respondents with ataxia felt that their mental wellbeing needs were not being met and over two-thirds were not asked about their mental wellbeing by health or social care professionals. We have gathered resources on mental health for you to have a look at or share with those that need it.
Ataxia UK are here to offer support, information and advice to anyone affected by ataxia. You can call Ataxia UK's helpline on 0845 644 0606. Opening hours are 10.30-2.30, Monday to Thursday. The helpline is closed on Fridays. You can also email us at firstname.lastname@example.org
What can help in living with ataxia?
Although there is currently no cure for ataxia, there are a number of treatments available to help with the symptoms people experience. We recommend that people with progressive ataxia be seen regularly by a neurologist (at least annually) who can monitor the condition and provide help with any new problems that may have emerged. It also gives you a chance to benefit from any new medical advances. Ataxia UK supports the opening of Specialist Ataxia Centres around the UK. Based within the Centres are specialist neurologists and nurses who have expertise in ataxia investigation and symptom control.
Physiotherapy and exercise such as swimming may prevent loss of strength and preserve mobility. A speech and language therapist can help with problems involving speaking, swallowing, coughing, choking and, if needed, communication aids, such as some computer programs. An occupational therapist can also be helpful, for example with home adaptations, teaching strategies for daily activities or wheelchair assessments.
Many people with ataxia say it really helps them to meet other people with the condition and realise they are not alone in what they’re going through. Ataxia UK’s network of local Branches and support groups helps by running events, trips out, fun activities, and providing the opportunity to meet up and socialise. Others keep in touch with one another through our online health community forum, Health Unlocked, or virtual support group.
Going on Holiday
Organising and taking holidays can be stressful when you live with ataxia; airports, accommodation and facilities... what if your accessibility requirements aren't met? Plenty of organisations exist to take the stress away, guaranteeing the quality of holiday everyone deserves.
You can read a bit more about travel insurance in the section below this one.
Know any great accessible holiday services that we've missed? Get in touch so we can spread the word! Email us at email@example.com.
Euan's Guide is a fantastic blog that showcases and reviews accessible places across the UK and abroad to visit for an hour, an evening, or a week. Highly reputed by members of our community and known among accessible companies, charities and organisations, Euan's Guide is the perfect place to begin.
Disability Horizons's travel section is updated regularly with news and case studies concerning all aspects of accessible travel, from adapted camping sites in the UK to discounts on Uber for people with disabilities.
Sheila Stamp is an accessible travel specialist at Travel Counsellors. She will be able to advise travelers on what services are best suited for their individual needs, specialising in accessible accommodation and providing any equipment needed. "Whatever your additional access, mobility, sensory or cognitive requirements might be... and wherever in the world you wish to go."
Specialising in accessible accommodation, Enable Holidays pride themselves on ensuring everyone has somewhere suitable to stay, with such in-depth knowledge as ramp gradients, number of steps and door widths. The company seem to be mostly working within Europe, but are expanding further abroad.
The UK's largest accessible holiday specialist and official suppliers to Make a Wish foundation, Disabled Holidays know what they're doing. Unlimited locations are covered, but cruises and travelling in the UK are specialisms.
If your ideal break is to explore the beautiful landscapes of the British Isles, then The Ramblers can ensure ataxia won't get in your way. They not only put their own routes together after researching accessibility, but advocate for further accessibility improvements to be made.
One of our very own Friends has enjoyed a fantastic trip to see big cats in South Africa with Access2africa Safaris, and wholeheartedly recommends it.
Getting insurance can be more expensive if you have a disability as insurance companies will see this as carrying a greater risk. If you would like to find out more information about purchasing life insurance, take a look at Ataxia UK's general insurance guide or Genetic Alliance UK's leaflet on life insurance.
In addition, as ataxia can be relatively unknown in some foreign countries, it is always a good idea to prepare your travel insurance beforehand and make sure that your provider has a proper understanding of your condition and what it entails. To find out more information on getting travel insurance with a medical condition, take a look at Genetic Interest Groups tips and our insurance guide above.
The Equality Act became law in 2010 and replaced the Disability Discrimination Act which had been in place since 1995. The act continues to make it unlawful to discriminate against disabled people in various areas of their lives, including work, education, travel and leisure. Sex discrimination and race relations are also covered by the Equality Act.
Under the Equality Act, disabled people are protected against direct and indirect discrimination in access to goods and services, as well as in employment. The Act also protects people (whether or not they themselves are disabled) from harassment or victimisation arising from disability. Service-providers are required to think ahead and make reasonable adjustments to improve access for disabled people.
If you or someone you know feel you have been treated unfairly or discriminated against because of disability, you might want to make a complaint or take legal action. How you proceed will depend on when the event/s occurred. If it was before 2010, the Disability Discrimination Act will still apply.
The Equality Advisory Support Service can give information and advice on
- making a direct complaint
- seeking help from a mediator to resolve any dispute
- making a claim in a court or tribunal.
You can also contact the Ataxia UK Helpline for guidance.
A sibling, or child of an individual with ataxia can easily fall into the role of carer. Knowing and caring for someone with ataxia allows children to develop key skills such as loyalty, understanding and patience, all of which are valuable throughout life. On the other hand, it is important to be aware of how a sibling or child can be affected, how they are feeling and offer help and advice on ways to cope. It may be the case of simply being there to listen when they need someone to talk to.
Every child and family is different. Here are a few general pieces of advice offered by parents:
- Give information about the child’s condition to the sibling
- Don’t be negative - your children can learn from the experience
- Support groups can help
- Give information to your child’s school
- Link up with other families who might be facing similar challenges
- Use generic help like children’s centres
- Allow children to speak their mind even if it’s difficult
- Don’t put pressure on them – try not to have too high of an expectation of your non-disabled child
Contact a Family is a charity for families with disabled children and has an excellent selection of resources on its website www.contact.org.uk (Helpline 0808 808 3555).
Carers Trust runs a dedicated website for siblings/young carers www.youngcarers.net (0844 800 4361).
Sibs (www.youngsibs.org.uk or 01535 645 453) is a group working to help siblings of those with additional needs.
CarersNet (www.carers.net.org) is a website for the Coalition of Carers in Scotland. It has information on young carers’ projects in Scotland.
Sibling Support Project (www.siblingsupport.org) is an American-based siblings information website. The resources are applicable to the UK.
There are also a number of books available specifically for siblings, parents and professionals. Check online or with your local bookshop.
Preparing For Adult Life
There is a range of approaches when considering how someone with ataxia will live in adult life. Some parents redesign the family home to enable an element of independence, other young people with ataxia prefer to live completely independently (ie: separately from their families) and employ personal assistants to enable them to do so.
If you or someone you care for gets help from social services, you can apply for direct payments. These let you choose what services to buy and engage people to supply them, either yourself or through an agency, instead of getting them from your council.
Contact a Family has produced a detailed guide on ‘Preparing for adult life and transition’ that discusses formulating a transition plan, which ideally should start around a child’s 14th birthday (Year 9). It is an inclusive process and can cover issues such as:
- Making friends and having a social life
- Sexual relationships
- Financial implications of leaving home
- Getting enough help at college or university
- Ageing parents
- Personal care
The Transition Information Network is an alliance of organisations and individuals who come together to improve the experience of disabled young people’s transition to adulthood.
Our 16-30's area is designed to help young adults prepare for their futures with advice, information on support services and blog articles written by young people themselves.
Many people with ataxia have successful careers and offer excellent role models to younger people. They can be encountered at our conferences and events or through our social media (see below)
A Disability Employment Adviser (DEA) at the local Jobcentre can help find a job or gain new skills and tell you about disability friendly employers in your area. They can also refer people to a specialist work psychologist, if appropriate, or carry out an ‘employment assessment’.
Welfare, Benefits and Daily Living
Citizens Advice Bureau
The Citizens Advice Bureau (CAB) website contains free, confidential information and advice to assist people with money, legal, consumer and other problems.
Turn 2 Us
Turn2Us is a national charity that helps people in financial hardship gain access to welfare benefits, charitable grants and support services. You can also get help in finding an adviser for specific information.
The National Key Scheme (NKS)
offers disabled people independent access to locked public toilets around the UK, using a Radar NKS key. www.radar-shop.org.uk
is an independent consumer research charity providing information for older and disabled people on products such as family cars, mobility scooters and washing machines. www.rica.org.uk
Euan's Guide is a highly-regarded and up-to-date accessibility guide to the accessible UK, including accommodation and things to do. You can search for accessible areas, and read and write reviews of said areas, on the Euan's Guide website. You can also follow Euan's Guide on Twitter (www.twitter.com/EuansGuide).
is a website that provides detailed information about access to local healthcare, education, jobs, services and places of interest. www.disabledgo.com
Family and Children
Contact a Family
is a UK charity that campaigns to improve the circumstances of families with disabled children and for their right to be included and take part in society. www.cafamily.org.uk
The Council for Disabled Children
brings together a range of organisations including the Transition Information Network which aims to improve disabled young people’s transition into adulthood.
Counselling and Mental Health
The Counselling Directory
is a comprehensive database of UK counsellors and psychotherapists, with information on their training and experience, fees and contact information. www.counselling-directory.org.uk
Living with a rare and progressive condition can be difficult to come to terms with; Alcohol Concern is a national charity that works to help reduce the problems that can be caused by alcohol and support people affected by it: www.alcoholconcern.org.uk/Pages/Category/help-and-support
Genetic and Neurological organisations
Genetic Alliance UK
is a national charity which aims to improve the lives of parents and families affected by all different types of genetic conditions. They have a vast selection of information resources for both children and adults affected by a genetic disorder. www.geneticalliance.org.uk
The Neurological Alliance
are the only collective voice for 80 organisations working together to make life better for millions of people in England with a neurological condition (of which Ataxia UK are a member). www.neural.org.uk
The Brain Charity
The Brain Charity offers national support for all neurological conditions. The website offers practical help and information, A-Z of conditions, a newsletter, Q&A forum, news and events: www.thebraincharity.org.uk
St Mary's Hospital, Isle of Wight
The St Mary's Hospital on the Isle of Wight run an 'Island Neurological Network', and is also connected to the Hampshire Neurological Alliance. The service is voluntarily run, but offers a lot of support to some of our Friends living in both the Isle of Wight and Hampshire. Read more about their organisation here: www.facebook.com/IslandNeurologicalNetwork/
Visit Carers Trust to access advice on different aspects of caring, including self-care, benefits and work assessments, legal rights and accessing support. Caters to young and adult carers. https://carers.org/
Hobbies and interests
is a disability-led arts organisation that develops opportunities for disabled artists, and works to improve access to arts and culture for disabled people. www.shapearts.org.uk
Disability Arts Online
Take a look on DAO to find organisations, artists or film that are accessibility-friendly www.disabilityartsonline.org.uk/home
Planning A Family
Many people with inherited types of ataxia have children. Some people develop ataxia after they have had children, and others may do so while knowing that they have ataxia. Every person with ataxia will have a different view on whether to have children. It is always a deeply personal decision.
If someone has a known recessively inherited ataxia (e.g. Friedreich’s ataxia) and they wish to start a family, it is possible for their partner to be tested to see if they are likely to be a carrier of the same type of ataxia. If he/she is not a carrier, then their child is highly unlikely to develop that type of ataxia.
See also the leaflet: Ataxia: a parents' guide
If you're a parent of someone with ataxia, why not request to join our closed Parents Facebook group to access specialist peer advice and support? You can request to join the group by sending an email to firstname.lastname@example.org
Sport and Leisure
Many sports can be adapted to allow people with conditions like ataxia to take part. This is reflected by the increase in the range of sports at the Paralympics. Wheelpower is the national organisation for British wheelchair sport.
The English Federation of Disability Sport can give you information on local events. Alternatively, contact the local council for clubs in your area specialising in disability sports, or ask individual venues about their accessibility and if they have sessions especially for disabled people; for example, many swimming pools offer this service.
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