Specialist Huntington's Disease Advisers
Our Specialist Advisers are just on the other end of the phone if you have any questions or require support.
If you have tested positive the one thing to remember is you are not alone.
How can we support you
As well as our Specialist Huntington's Disease Advisers, we have volunteer-run branch and support groups across England and Wales which are a great way to access peer support. We also have many ways that we offer support online through video resources and social media channels.
Social media channels
We have a Facebook, Instagram, Twitter and TikTok channel each are updated frequently with news, stories, tips and advice.
Branch and support groups
Speaking to other people in a similar situation helps to spread the load and get peer to peer advice and support.
Video support
We have a wide range of videos to help you understand different ways of managing the disease.
Helpline Adviser
You can call our helpline between 9am - 5pm Monday - Friday and speak to Kim for advice.
WhatsApp support group
Join our young adults WhasApp group.
NHS psychological therapies service
Talking therapies, such as Cognitive Behavioral Therapy (CBT), counselling, other therapies, and guided self-help.
Young adults guide
Huntington's research
The best place to keep up to date with research news is through HDBuzz. This is a great source of information that has been written in a way that is easy to understand.
Taking part in research
Although taking part in research may sound daunting, research and studies come in many forms. Some may require you to speak to them about your experience, others may want you to help them develop something such as an app that may help people living with Huntington's further down the line. You can find out more about current studies in this section of the website.
There is also the opportunity to register with Enroll-HD - the largest research platform for people affected by Huntington's disease. They aim to accelerate the development of therapies for Huntington's disease by collecting more uniform clinical data and biological samples to better understand the natural history of Huntington's.
You can find out more about Enroll-HD on the link below.
Stories from the community
My positive result lit a fire in me - Rebecca's story
Thrive. Suvive. Repeat - Poppy's story
Acceptance and Commitment Therapy: A different mental health approach for Huntington’s
Further reading
Living well
Modern day life is busy. Most of us have to juggle many things – long work hours, relationships, family commitments, social lives.
Most people will have heard of the following mantras:
- eat healthily
- get enough exercise
- use your brain
- sleep well
- take time for relaxation
Healthy living can benefit everyone, leading to improved mental health, a greater sense of control over life and a better ability to cope when the going gets tough. It’s very important to take time out for relaxation and ‘me time’. These principles can be especially relevant for people who are at risk of or living with Huntington’s disease.
Building up reserves in the brain
Another well-known phrase: ‘use it or lose it’. A less familiar term is ‘neural reserve’ or 'brain resilience'. The use it or lose it principle refers to doing things now, so you build your capacity up to be stronger in the future.
Imagine a man who has a go riding a unicycle. His first try is not good; he manages just two rotations of the pedals before falling off. This difficult action of unicycling has, however, resulted in different cells throughout the brain firing, which leads to a kind of circuit of neurons activating together.
He then decides to have a go the next day. Again, this network of neurons fire together and this time, connect a bit more strongly. After this he then decides that he will train in unicycling and does it for an hour each day. By doing this, he strengthens his neuronal network every single time.
How is this man’s unicycling relevant to Huntington’s?
- An increasing number of studies have shown that an ‘engaged lifestyle’ - one that includes different activities that exercise the brain - has considerable long-term benefits.
- The fun part is that ‘engaged lifestyle’ refers to anything that uses the brain, from unicycling to seeing a new film, playing XBox, travelling, having a good laugh with a friend, doing a new dance class - the list goes on.
- Every time you do something that activates your brain, you are training it to be stronger. There is a connection between how we engage our brains now and the strength of our brains in the future.
- Knowing this can empower us to make changes to our lives today that will help us later on down the track.
Exercise and physiotherapy
Exercise has been shown to have many benefits for people of all ages and every level of fitness and health. Some of these benefits can include improved mood, concentration, cardiovascular conditioning and improved strength, balance and coordination.
- If you are at risk for Huntington’s, or in the early stages of the disease, these benefits can significantly improve your quality of life.
- Taking part in exercise is one of the few ways that individuals at risk of Huntington’s can have some control over the potential effects of the disease process.
Currently research is underway in Europe and the U.S.A, with people with early-mid stage Huntington’s, to determine the possible benefits of various types of physiotherapy-led exercise programs.
Physiotherapists are trained in understanding the effects of movement disorders such as Huntington’s. They can help you to understand the potential physical motor symptoms and progression of the disease, and can prescribe exercises and activities that are appropriate for your own specific needs.
The Physiotherapy Working Group of the European Huntington’s Disease Network (EHDN) has made the following recommendations for people who are at risk of Huntington’s, or at the early stages of the disease:
- See a qualified physiotherapist who can provide advice on physical activity and potentially help with difficulties related to posture and muscles. Your GP can refer you.
- Participate in a regular exercise routine (see recommendations below). Structure your day to encourage ongoing physical and mental activity (e.g. daily stair climbing, walking to work, playing cards, doing puzzles)
Basic guidelines for a recommended fitness programme:
- Trunk mobility and flexibility exercises (e.g. yoga, pilates exercises)
- Endurance/cardiovascular training (recommended 30 minutes three to five times a week; e.g. walking, swimming, cycling training on a stationary bike)
- Balance exercises
- Strength training/core stability
If you have any questions, you can contact members of the Physiotherapy Working Group of the European Huntington’s Disease Network, who are specialist experts in physiotherapy for people with Huntington’s disease.
Employment
Looking for work
At the stage of a job interview, it is important to remember that you only have to give information about a health issue if an employer asks you. You should answer all questions honestly, but you do not have to offer information if the question isn’t asked.
Most people feel they don’t want to voluntarily offer information about a health condition as they are worried that they might be treated differently. Also, in relation to Huntington’s, people are often concerned about telling others as there is so little awareness of the disease.
Managing at work and your rights
People often worry most about work if they are concerned that they are showing early symptoms. Each person will have a different relationship with their employer and their colleagues, and this will affect how they feel about sharing personal information. All employers, however must comply with the Equality Act 2010, which addresses unfair treatment and helps achieve equal opportunities in the workplace and in wider society.
If you decide the time is right to talk to your employer about Huntington’s, it is worth thinking things through first. Consider how much information you are comfortable disclosing at this time, and what they most need to know.
If you are struggling to cope at work, and say so, then it might be difficult for them to see how they could help you. If, however, you give specific issues that are causing you problems, and come up with some possible solutions, this will be more constructive.
For example, if you are in a noisy office, with phones ringing all the time, emails constantly coming in and colleagues making requests, you may struggle with doing all these things at once. You could look at structuring your day differently, for example so you only get calls at certain times, only check your emails twice a day or move to a quieter area in the office. Perhaps your employer could support you to do this.
If you find you are exhausted by the time you get to work because your journey during rush hour is stressful, you could ask for more flexible working hours.
There are possible solutions to a number of issues and employers are usually happy to work through these to keep a good employee.
For support and advice in relation to work, the Brain Charity’s employment support service has useful information for both employees and employers. ACAS also runs a helpline and there is some information about Access to Work for people with a disability.
Your local Specialist Huntington’s Disease Adviser can also help you talk to your employer about your diagnosis and what it means for your employment.
Getting the most out of life with Huntington's
Keeping active and doing things you enjoy can help you cope with the big challenges of Huntington’s, whether you have the disease yourself or you’re caring for someone who has it. It can help to combat feelings of anxiety and stress, provide opportunities to make new friends, and bring more joy and fun into your life.
Hobbies and sports
- Children and young people with Juvenile Huntington’s may find that activities such as sports, gymnastics, horse riding, dancing and music help them to feel independent and give them a sense of achievement. Contact a Family has a helpline giving information about leisure activities.
- Hydrotherapy can help to relieve certain symptoms such as stiffness, rigidity and muscular aches and pains. Your GP or physiotherapist can advise if it’s available in your area.
- Swimming is a great way to be more active if movement is becoming tricky, and can give a feeling of freedom and relaxation. It’s also good for keeping the muscles in the arms, shoulders, chest and back strong, as well as for developing stamina.
Travel
Having Juvenile Huntington’s doesn’t need to stop you from visiting places and going on holiday.
- You can get help and assistance from transport staff when travelling by train or plane. Find out what help you’re entitled to on the Transport if you’re disabled section of the government’s information website.
- The Motability Scheme can help you to lease a car if your child is aged three or over and is entitled to either the: higher rate of the mobility component of the Disability Living Allowance or the enhanced mobility component of the Personal Independence Payment.
- You may also be eligible for a Blue Badge if your child meets certain requirements. This allows you to park near to your destination, often for free. You can find some useful information about applying for a Blue Badge on the Citizens Advice website.
- Disabled people are usually entitled to free or discounted bus travel in the UK, although the offer and eligibility criteria vary slightly between UK nations. You can find out more information and apply online here: England; Scotland; Wales; Northern Ireland.
Holidays
Some organisations provide holidays and short breaks for children with disabilities, either with or without their families. Your social services department, GP or health worker can give you a list and may be able to make a referral to some of the organisations for you.
Some useful organisations:
- The Calvert Trust runs outdoor adventure activities in the countryside for disabled children and their families. The trust has three purpose-built centres with full-board or self-catering accommodation around the UK, offering a range of sports and recreational activities designed to help people fulfil their potential.
- The Holiday Homes Trust provides affordable breaks in specially adapted accommodation at popular holiday sites for families, carers or groups who have a member with a disability.
- Contact a Family gives advice and information on getting charitable grants and other financial help towards the cost of a holiday. The charity has produced a useful guide called Holidays, play and leisure (PDF, 1.03Mb).
- The Disabled Holiday Directory is an online directory of organisations and venues that cater for children and adults with disabilities, both in the UK and abroad.
- Tourism for All is a national charity that provides information on accessible holiday venues and places in the UK and abroad for disabled people, their carers and family.
- Revitalise is a national charity that specialises in short breaks throughout the year for adults and children (aged six and older) with physical disabilities, dementia or sight impairment, and their carers. The charity has holiday centres around the UK, and also offers holidays in Spain and Germany. All Revitalise centres are registered as personal care centres and most are also registered as nursing care centres. However, the charity does not have the resources to provide holidays for people who are bed-dependent, or who have uncontrolled epilepsy, learning difficulties, or mental health problems.
- The Disaway Trust is a registered charity that organises group holidays internationally and in the UK for people with physical disabilities aged 16 to 80 years and their carers.
- Holidays for All is an umbrella website for various specialist tour companies and disability charities. It lists a range of holiday providers who specialise in breaks for people with sensory and physical disabilities, their friends and carers, around the UK and abroad.
Emotional support
Even if you have no symptoms, it can be difficult to cope with having the Huntington’s disease diagnosis.
If you’ve just found out you have the faulty gene, you may be feeling in a state of shock and have lots of fears and worries about what the future might hold. You should get follow-up support from a genetic counsellor at the clinic that did your test to help you come to terms with the news. Your local Specialist Huntington’s Disease Adviser can also give you information and support.
Many people in this situation worry that a stumble or fall, a moment of forgetfulness or an argument may be the start of symptoms, and this can cause a lot of anxiety.
Whether or not your ‘symptom’ is a result of Huntington’s, it is probably better to seek support, than to avoid it. That way you take control of your health and tackle any issues head-on, rather than avoid them. Talking to someone else about your concerns can also be helpful.
Seeking support
People – in any challenging situation - can find it useful to talk to someone about their feelings, and it doesn’t always seem appropriate to talk to friends and family.
- Your local Specialist Huntington’s Disease Adviser can help and answer questions.
- You can ask your GP to refer you for counselling, or you can contact your closest specialist clinic to see if there is support they can offer.
- Many people find that talking to others who are in a similar situation can really help. We have local branches and support groups that enable people affected by Huntington’s to support each other.
- Our social media channels are another great way of speaking to other people going through the same thing. Some of our followers go on to create dedicated Huntington's disease profiles to share their journey with others.
- If you are under 25, our dedicated youth workers are very to talk to about anything that’s worrying you or any questions you have about Huntington’s. Our youth workers also run the Youth Engagement Service - HDYES.
Insurance
Any serious health condition or disability can affect you in terms of certain types of insurance, so it makes sense to find out the facts and make sure you are adequately covered. There are also legal matters to consider if you have Huntington’s disease or are caring for someone who has it.
Insurance
The insurance industry is based on risk. It aims to offer a fair service based on the risk level of any applicant. The amount you pay for insurance is affected by many factors such as your age, whether you smoke and any other known risk factors, including your family history.
When applying for insurance, all questions need to be answered honestly, otherwise a claim will not be valid in the future. While insurers do ask about family history, there are rules in relation to asking about genetics.
In 2019 the Association of British Insurers issued a new code which insurance companies have to follow in relation to genetics and insurance.
The key obligations of insurance companies during the moratorium are that no insurer will request an applicant to take a genetic test in order to take out insurance and, in relation to Huntington’s disease, they can only ask for a test result if you are applying for:
- Life insurance in excess of £500,000
- Critical illness in excess of £300,000
- Income protection in excess of £30,000 per annum.
Very few people wish to take out insurance at these high rates.
This means that people who have a family history of Huntington’s are likely to have to pay higher premiums than someone who doesn’t. If someone has a positive test, the rates will continue to be high but if they have a negative test they will be able to take out a new policy and benefit from the lower premiums. If you have had the test you do not have to tell your insurers this – they only need to know your situation when you took out the policy.
In relation to mortgages, while some providers may recommend that people take out life cover when taking out a mortgage, this is not usually a compulsory requirement.
Insurance webinar
Travel insurance
If you have a heath condition or a disability – a ‘pre-existing condition’ – you need to take particular care when shopping around for travel insurance.
If you don’t tell your insurers about having Huntington’s when asked if you have any ‘pre-existing condition’, your insurance could be invalid.
You should also check that the policy covers any equipment you need to take with you.
More information on this issue and other aspects of purchasing insurance if you are ill or disabled is available from the Money Advice Service.
Financial support
Living with Huntington’s can have an impact on your finances, which can add to the challenge of what is already a difficult situation. It may become increasingly difficult for you, and members of your family who look after you, to work or study. Meeting your care needs can sometimes be costly, too.
There are different forms of financial help available to people living in England and Wales, from the Department of Work and Pensions (DWP), your local council and other sources.
It’s important to be aware of all the help you’re entitled to and to apply for any help that could make life easier.
Finding out what you are entitled to
The charity 'Turn2us' have an online benefits calculator which is free to use to see what benefits you might be entitled to: https://benefits-calculator.turn2us.org.uk/AboutYou
If you would prefer to speak to someone over the phone or Face to Face contact the Citizens Advice Bureau England: www.citizensadvice.org.uk or Wales:www.citizensadvice.org.uk/cymraeg/
Disability benefits
Personal Independence Payment (PIP)
If you’re aged between 16 and 64, you may be entitled to claim Personal Independence Payment (PIP). This is intended to help with some of the extra costs caused by long-term ill-health or disability. You can get an idea of whether you’ll qualify for PIP, and which components and which rates you might get, on the c-App website.
If you need extra help because of the symptoms of Huntington’s disease and you are aged between 16 and 64 you may be entitled to claim Personal Independence Payment (PIP). You don’t need to have worked or paid National Insurance to qualify for PIP, and it doesn’t matter what your income is, if you have any savings or you’re working.
We have produced documents on PIP specifically for people with Huntington's:
- Top Tips – A guide to give you some helpful hints when applying for PIP / filling in the forms.
- A guide to categories – This may give you some helpful suggestions when filling each section of the form.
All of this information has been created based on the experience of our Advisers or of families; we have had support from the PIP assessors in writing it but it doesn’t replace advice that is available directly from the DWP at gov.uk.
The DWP have made a series of videos which can help you when thinking about applying, or going through the application process:
- Claiming for PIP – This video looks at how to apply for PIP. Watch here
- Supporting Information for PIP – This video looks at the supporting information you will need and why it’s important. If you are in touch with your local SHDA they can often write a supporting letter at this stage. Watch here
- The face-to-face assessment – Most people who apply for PIP will have a face-to-face assessment, this video gives more information about what will happen at that assessment. Watch here
- The PIP decision – this video explains how you will be informed if you have been successful and any next steps. Watch here
More information on PIP is available on the gov.uk website
Employment Support Allowance (ESA)
If you have a long-term illness, you may be entitled to Employment Support Allowance (ESA), whether or not you are currently working.
Help with Transport
- The Blue Badge Scheme
A Blue Badge lets you park in places other drivers can’t, so that you can park closer to the places you want to reach. With a Blue Badge you can usually (but not always) park for free. Some private car parks, e.g. at hospitals, may still expect you to pay.
You can apply for a Blue Badge online. - Train travel
A Disabled person’s railcard costs £20 per year and entitles the holder and a carer or friend to one third off train tickets.
In Wales, you can also travel on some train lines for free if you have a Concessionary travel pass (see “Bus travel” below). - Motability Scheme
The mobility element of your PIP can be used to lease a car, scooter or motorised wheelchair via the Motability Scheme. - Bus travel
Disabled people are usually entitled to free or discounted bus travel in the UK, although the offer and eligibility criteria vary slightly between UK nations. You can find out more information and apply online here: England; Wales.
Help with equipment and adapting your home
- Disabled Facilities Grant
If your home needs to be adapted to meet your needs, you may be able to get a Disabled Facilities Grant from your local council to help with the costs. Usually, your occupational therapist will help you figure out what adaptations will work best for you.
A Disabled Facilities Grant won’t affect any benefits you get. - Council tax reduction
If your council tax increases as a result of adaptations to your home, for example the building of an extension, you can apply to your council to have the increase removed, as long as the adaptation is as a result of your disability. - VAT relief
People with a long term illness can get certain products, services and pieces of equipment they need without being charged VAT on top of the cost of the items.
The types of items covered include certain types of stairlifts, wheelchairs, adjustable beds, alarms, motor vehicles and building work.
Your supplier can advise you which items qualify for VAT relief, and will ask you to complete an ‘eligibility declaration’ form.
Financial help for carers
See also Carers/Financial help for carers.
Other grants
A wide range of grants are available, depending on your specific needs and situation.
- Turn2us offers a simple tool to search for grants that you may be able to apply for.
- The Huntington’s Disease Association offers small grants for specific needs. Please contact your local specialist Huntington’s Disease advisor (SHDA) for more information.
Help with nursing home fees
If you need residential care, your local authority may help you with the cost of this. As this is means-tested, they will carry out a financial assessment to see if you are entitled to this kind of help, and if so, how much. This assessment will take into account your income and assets, such as any property you own. This includes the value or your home, unless your partner or other dependent lives there.
The Care Act 2014 is changing how people are able to pay for their own care, introducing the right for you to ask for the local authority to pay for the cost of your care while you try to sell your home. This is known as a "deferred payment scheme".
If your care is fully funded by your local council, they may also select your nursing home. You are free to make your own arrangements, but you might need to bear some or all of the cost yourself. It is worth asking the local authority for a financial assessment in any case, because they might pay some or all of your care costs.
Help with nursing home fees through NHS “continuing care”
If your medical needs are very high, they may meet the criteria for fully funded NHS care. This means that you will receive the care and support you need at no cost to you, including the costs of residential care if needed, or care in your own home.
This is known as NHS continuing healthcare or continuing care. It is a package of care that is arranged and funded solely by the NHS for individuals who are not in hospital and have been assessed as having a "primary health need".
You can find out more about NHS continuing care here: http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/nhs-continuing-care.aspx
NHS-funded nursing care
If you live in a residential care home or nursing home, but are not eligible for NHS continuing healthcare, you may still be eligible for NHS-funded nursing care.
This is nursing care provided to you in your care home by a registered nurse. The NHS will pay a flat rate contribution directly to the home towards the cost of this nursing care.
You may be eligible for NHS-funded nursing care if:
- you are not eligible for NHS continuing healthcare but have been assessed as needing care from a registered nurse
- you live in a care home registered to provide nursing care
You can find out more about NHS-funded nursing care here: http://www.nhs.uk/chq/Pages/what-is-nhs-funded-nursing-care.aspx
While coping with Huntington’s can be expensive at times, there are lots of different sources of help available. It’s important to make sure you get the support that you’re entitled to. Your local specialist Huntington’s Disease advisor (SHDA) can help and answer questions, and Citizen’s Advice can also provide, support, advice and advocacy.
