There are many ways to get help with the symptoms and challenges of living with Huntington’s disease.

Your local Specialist Huntington’s Disease Adviser can advise and support you throughout your illness, as well as supporting the other healthcare professionals involved in your care, if they lack knowledge or experience of Huntington’s.

We also have information for GPs about Huntington’s care, which you can ask us to send to your doctor on request. Just contact us for more information.


Below we will take a look at each symptom and what relevant care and support you may need as well as what lifestyle changes you may want to think about in order to have the best quality of life.

Please remember that not everyone will experience all of these symptoms and there is still no way of telling in what order the symptoms may start to progress but the aim is for us to cover all possible symptoms and the different types of care that you made need to help manage them.

Cognitive symptoms

Below are some of the symptoms that you or the person you care about may start to notice.

  • Difficulty in switching attention
  • Inability to concentrate on more than one thing at a time
  • Delayed processing skills
  • Loss of drive, initiative and spontaneity
  • Problems with recognition and recall
  • Impulsive behaviour
  • Inability to read facial expression
  • Impaired executive functioning

Who can help?

There are lots of different people who are helpful at this stage of your Huntington's journey including the Huntington's Disease Association and your GP. Please look at 'getting the care you need' further down this page for further information on how to access this help.

  • Psychologist
  • Counsellor
  • Neuropsychologist
  • Psychiatrist
  • Specialist Huntington's service
  • Social care

Symptom management

  • Medication 
  • Cognitive Behavioural Therapy (CBT)
  • Support worker/care package
  • Aide memories
  • Alarms
  • Complementary Therapies
  • De-escalation techniques

Motor symptoms

Below are some of the symptoms that you or the person you care about may start to notice.

  • Chorea or other involuntary movements
  • Slowness of movement
  • Muscle spasms
  • Rigidity
  • Problems with speech
  • Difficulty swallowing

Who can help?

There are lots of different people who are helpful at this stage of your Huntington's journey including the Huntington's Disease Association and your GP. Please look at 'getting the care you need' further down this page for further information on how to access this help.

  • Neurologist
  • Speech and language therapist (SALT)
  • Dietitian
  • Physiotherapist
  • Occupational therapist
  • Wheelchair services
  • Specialist Huntington’s disease services
  • Social care

Symptom management

  • Medication
  • Aids and adaptations
  • Specialist seating, beds and mattresses
  • Care package
  • Massage and complementary therapies
  • Continuous assessment

Behavioural symptoms

Below are some of the symptoms that you or the person you care about may start to notice.

  • Irritability
  • Aggression
  • Obsessive-compulsive disorders
  • Anxiety and apathy
  • Depression

Who can help?

There are lots of different people who are helpful at this stage of your Huntington's journey including the Huntington's Disease Association and your GP. Please look at 'getting the care you need' further down this page for further information on how to access this help.

  • Community mental health team
  • Psychiatrist / Community psychiatric nurse
  • Psychologist
  • Specialist Huntington's service
  • Social care

Symptom management

  • Medication 
  • Structure and routine 
  • Environmental enrichment 

'I have Huntington's disease' ID cards

Did you know that we provide 'I have Huntington's disease' ID cards that we can personalise with your name and emergency contact details? The card can be kept in your purse or wallet or put in a card holder on a lanyard (not provided). Please email with the following information:

  • I would like an ID card
  • Your full name
  • Emergency contact name
  • Emergency contact mobile number
  • Emergency contact landline number
  • Your address (to post the card to)

ID cards for England and Wales only.

Huntington's ID Card (6)

Keeping active with Huntington's disease

This resource provides information and tips and hints on how to make a physical activity plan that is unique for a person with Huntington’s disease. The resource was developed by researchers at Cardiff University, the Huntington’s Disease Association of England and Wales, Carer’s Trust Wales and carers and people with Huntington's disease. You will need to download both the booklet and the cards.

Exercise workbook
The exercises are based on the 'Move to exercise' resource that you can find below.

Download booklet (English)  Download cards (English)

Download booklet (Welsh)  Download cards (Welsh)

Types of care

There are different types of care that you might need to access at different times.

These include:

  • Social care
    Help with things like washing and dressing, which is arranged privately or through the adult social services department of your local council.

  • Medical care from healthcare professionals
    The involvement of neurologists, neuropsychiatrists, dieticians, speech therapists and other professionals can also enable you to manage your symptoms more effectively and positively.

  • Care in a nursing or residential home
    Should this at some stage be the best option for you or the person you are caring for.

Getting the care you need

You can find out more about the different types of care below.

Citizens Advice

Citizens Advice is an independent, free source of advice and support on services and facilities available at a local and national level. Its advisers can help you resolve problems with benefits and other services and speak to service providers on your behalf.

Vist the Citizens Advice website

Social care

If you find it difficult to look after yourself, or the person caring for you needs extra help, your local authority may be able to provide you with some assistance. The best way to start the process is to contact your council’s adult social services department and ask for a ‘care and support needs assessment’.



Social care assessment

During your assessment, you will have the opportunity to discuss with a social worker your needs and how they affect you. You can also talk about how you wish to live your life and whether there are certain things you would like to achieve but are unable to because of unmet care and support needs. The assessment should be done in a way that ensures your involvement and gives you enough time to capture all your needs.

If you have a friend or family member looking after you as an unpaid carer, they can have a carer’s assessment to see if they need support to carry on their caring role.

Sometimes it can be difficult to think about the type of support you need. It can be helpful to involve someone you trust when talking to social services. If you like, you can ask your local Specialist Huntington’s Disease Adviser to help. If the social worker who is assessing your needs doesn’t have experience of working with people with Huntington’s, your adviser can help them understand more about the disease and talk about the type of care that might suit you.



Social care plan

When the care and support needs assessment is completed, as a minimum you should receive information about other services and ways that you might find funding to pay for them.

However, if your needs meet the national eligibility criteria, your local authority will have to meet your care needs directly. The social worker carrying out your assessment will then start to consider how this should happen. The first step will be to draw up a care and support plan. This could include:

  • simple aids (such as devices to open jars and tins more easily)
  • adaptations to your home (such as handrails)
  • help in your own home
  • care in a care home


Social care is not free and you may have to pay something towards the cost of your care. Your council will do an assessment to see if you have to contribute anything, and if so how much.

Care at home

Types of home care

There are different types and levels of home care, ranging from long-term 24-hour care, to short regular visits or emergency care, and it is usually adapted to meet each person’s individual needs.

As well as helping with washing and dressing, paid carers can provide companionship, and support around the home with cooking and cleaning. Sometimes they also provide nursing and health care.



Finding home care

Your local Specialist Huntington’s Disease Adviser might know of home care agencies or professionals that have experience working with people with Huntington’s. Your adviser can also offer training on the disease to care agencies at a small cost to the agency. There are some simple things agencies and carers can do that can make things easier for people with Huntington’s. For example, they can provide the same staff for all visits, and those carers can follow a set routine.




Funding home care

If you are eligible for homecare services, this can either be provided or arranged by your local authority, or you can arrange it yourself, funded by your local authority in the form of direct payments or a personal budget. These schemes enable you to manage your own care services and are intended to give you more control over your care. However, it’s worth noting that by taking on direct payments or a personal budget you become your carers’ employer, and have responsibilities such as arranging holiday pay, sick pay and National Insurance contributions. It’s important to make sure that you can manage this, or have someone who can manage it on your behalf. You can use a ‘broker’ to help with these responsibilities, but there will be a charge for that service.

Visit the NHS website

Care from the NHS

Continuing healthcare (CHC)

If you need medical care on an ongoing basis outside of hospital, you may be eligible for NHS continuing healthcare (CHC), also known as NHS continuing care or 'fully funded NHS care'. This is arranged and funded by the NHS, so you don’t need to pay anything towards it.

It includes any medication, for example there is medication that can help with involuntary movements and to help control mood and anxiety. Different people respond to different medicines, so ask your GP or specialist clinician for advice.



Continuing healthcare assesment

To be eligible for NHS continuing healthcare, you need to be assessed as having a 'primary health need' - in other words, your main need for care must relate to your health. The term 'primary health need' is a key concept in deciding whether any nursing care that you need outside of hospital is paid for by the NHS, or whether it falls under social care, which you may have to pay for in part or full, (depending on your means, as assessed by your local council). The NHS describes a primary health need as meaning that you have a complex medical condition and substantial and ongoing care needs.

For most people, there is an initial checklist assessment of your eligibility for NHS continuing care, to see if you meet the criteria to have a full assessment. The purpose of the checklist is to enable anyone who might be eligible to have the opportunity for a full assessment.

If you meet the criteria for a full assessment, this will be done by a team of healthcare professionals organised by your local NHS clinical commissioning group (CCG). The assessing team must be “multi-disciplinary”, meaning it includes different types of healthcare professionals. At least two of these professionals must already know you and be involved in your care.

It is the level and type of care you need that determine whether you are assessed as having a primary health need, and not the fact that you have Huntington’s. If your needs change, then your eligibility for NHS continuing healthcare may also change. Your eligibility is assessed by looking at all your care needs and relating them to:

  • what help is needed
  • how complex these needs are
  • how intense or severe these needs can be
  • how unpredictable they are, including any risks to your health if the right care isn't provided at the right time.


You should be fully involved in the assessment process and kept informed, and have your views about your needs and support taken into account. Your carers and other family members should also be consulted where appropriate.

A decision should usually be made within 28 days of it being decided that you need a full assessment for NHS continuing healthcare. If you aren't eligible, you can be referred to your local authority who can discuss with you whether you may be eligible for support from them. If it is decided that you have some health needs, then the NHS may still pay for part of the package of support. This is sometimes known as a "joint package" of care.

If you disagree that you are not eligible, you can make a formal appeal, either after an initial checklist assessment or after a full assessment. Care to be Different provides some helpful information on how to go about this.

Visit Care to be Different




What happens next?

If you are assessed as eligible for NHS continuing healthcare, the next stage is to arrange a care and support package which meets your needs.

Depending on your situation, different options could be suitable, including support in your own home and the option of a personal health budget. If it is agreed that a care home is the best option for you, there could be more than one local care home that is suitable.

Your CCG should work collaboratively with you and consider your views when agreeing your care and support package and how and where it will be provided. However, they can also take other factors, such as the cost and value for money of different options, into account.




What if you are not eligible?

If you are not eligible for NHS continuing healthcare, but you are assessed as requiring nursing care in a care home (in other words, a care home that is registered to provide nursing care) you will be eligible for NHS-funded nursing care. This means that the NHS will pay a contribution towards the cost of your registered nursing care. This is known as NHS-funding nursing care and is available irrespective of who is funding the rest of the care home fees.

Find out more about NHS care.

Visit the NHS website




Find out more about continuing health care assessments



Care in a care home

There are lots of different types of care homes to choose from and it’s important to think about the sort of environment that will work best for you. Some homes are large and look a bit like hotels, while others seem more like a family home. Some cater mainly for older people and others mainly for younger people. Some are privately owned, while some are run by charities or local councils.

Some homes may have a number of residents with Huntington’s and staff who are experienced in looking after them, while others may have no-one there with the disease. It may be tricky to find a home in your area that has other people with Huntington’s, in which case you will need to weigh up the benefits of being around others with the condition, versus being close to home.

If you need nursing care as well as general personal care (meals, bathing, toileting and taking medication), you need to find a home that is registered to provide this. Care homes that offer nursing are often referred to as 'nursing homes'. Some homes will provide people with personal care but if a time comes when they need nursing care too, they can also provide this. It’s important to ask about this and think about your future care needs.

Your Social Worker will be able to tell you about care and nursing homes near to you, and your Specialist Adviser can tell you about homes which have experience of working with people with Huntington’s.

More information is available on the NHS website.

Vist the NHS website



Huntington's Disease Association - Quality Assured homes

It is a difficult decision choosing the right home for you or your loved one.


Choosing a care home that meets both current and future care needs is one of the most challenging decisions that people with Huntington's disease, their families and carers may have to make. Often people move to care homes that don't understand the condition and people tell us interaction with the care home can feel like a battle. We want that to change.


Quality Assured is a programme that identifies the behaviours, cultures and specialist services required for a care home to specialise in caring for people affected by Huntington’s disease.


The accreditation scheme involves a comprehensive system of self-assessment, observation and evidence gathering. This is combined with feedback opportunities for the people with Huntington's in care homes, their families and other stakeholders to build a clear understanding of whether the care home operates to the standards identified.


Visit our Quality Assured care home directory

Specialist clinics

Throughout England and Wales there are specialist clinics for people with Huntington’s where you can find healthcare professionals with particular experience and understanding of the disease. These clinics all run in different ways but they all have a neurologist available. They may also have a neuropsychiatrist, a nurse and some have other members of the multidisciplinary team such as physiotherapists, speech and language therapists, dieticians or occupational therapists. At the clinic, appointments will be arranged for you to see the professionals relevant to you.

Your Specialist Adviser will be able to tell you if there is a clinic close to you and your GP can refer you. If there is no specialist clinic in your area, you may prefer to see a local neurologist. Clinics often ask your GP to prescribe medications for you or refer you on to services such as physio and occupational therapy that you can access locally.

Many clinics are also research sites and give you the opportunity to sign up to research studies linked to Huntington’s.

Coordinated care from healthcare professionals

Your GP

Your GP is usually the ‘gate-keeper’ to your care. A GP is a ‘generalist’, meaning they know a little bit about a very wide range of health issues, but generally lack in-depth knowledge and experience of rare illnesses. You may be the only person on their caseload who has Huntington’s. They often need to learn with you and many are happy to take advice from specialist Huntington’s clinics and Specialist Advisers. 


It is important to talk to your GP about any health problems or Huntington’s symptoms that you may have, as he/she will be able to access support and make referrals to other specialists such as speech therapists and dieticians.





Neurologists provide medical care for people with all kinds of neurological diseases (those affecting the brain, spinal cord and nerves). A neurologist who specialises in Huntington’s disease will have developed knowledge and experience in treating the disease, and will usually be attached to a specialist Huntington’s clinic.

Your neurologist will assess your symptoms and talk to you about ways to manage and treat them including both medication and support from other professionals such as physios and dieticians. They may also be the person who highlights that some care at home would be a good idea.




A neuropsychiatrist can help when the behavioural or emotional side of Huntington’s is causing challenges. They often work as part of a specialist clinic and will look at symptom management, including the possibility of medication and lifestyle adaptations.




Your dietician will assess your nutritional needs and give advice. Many individuals with Huntington’s disease require a high-calorie intake to maintain their body weight. Dieticians can offer help and advice on getting an adequate and nourishing diet. This may include information on ways to increase calories without eating large amounts of food. Take a look at our Eating Well guide for further advice on diet and nutrition. 


You can be referred to a dietician by your GP or through a specialist Huntington’s clinic.



Mental Health Services

Mental health workers can include community psychiatric nurses, counsellors, psychiatrists and psychologists. They provide people with opportunities to talk through issues and difficulties and find ways of coping better. Some kinds of mental health professionals may also prescribe medication to help with emotional and behavioural symptoms.

 You can be referred to a mental health professional through your GP or a specialist Huntington’s clinic.

We do hear of situations where Community Mental Health Services (CMHT) say that they aren't going to accept a referral. If this happens to you we would suggest:

Speak to the person who originally referred you to mental health services (normally your GP, Neurologist or Specialist clinic) to find out more and see if they can re-refer (perhaps with more information)

  • Ensure that you access support while you are waiting. Use the website to find where you can access urgent support Where to get urgent help for mental health. You might want to look at this now and write the number down to have somewhere safe for the future.
  • In a crisis call 999

Please do contact our helpline of the Specialist Huntington's Disease Adviser in your area, so we can support you in accessing services, and also so we can understand how often this is happening. We are campaigning to improve these services and hearing your experience is really important to us.

You can be referred to a mental health professional through your GP or a specialist Huntington’s clinic.



Speech and language therapists (SALT)

Speech and language therapists help people who have difficulties with communicating, eating, drinking or swallowing.

You can be referred to a SALT through your GP or a specialist Huntington’s clinic.




Your physiotherapist will show you how to keep as active as possible to maintain muscle strength and minimise potential problems of falling. They can also give advice to your family or carer on how to help you move around. You can ask your GP to refer you to a physio. If your physio has not worked with someone with Huntington’s before, you can refer them to the professional pages of our website where there is information to support them in creating a treatment plan for you.



Occupational therapists

Occupational therapists (OTs) can advise on equipment or alterations to your home that may help you carry out normal everyday activities and do the things that matter to you. This might include specialist seating and bathing equipment, for example. You can ask your GP to refer you to an occupational therapist. If your occupational therapist has not worked with someone with Huntington’s before, you can refer them to the professional pages of our website where there is information to support them in creating a therapy plan for you. Your Specialist Adviser may also be able to advise them.

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:

If you would prefer to speak to someone over the phone or Face to Face contact the Citizens Advice Bureau England: or


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.

    Download here

  • A guide to categories – This may give you some helpful suggestions when filling each section of the form.

    Download here

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

The DWP have made a series of videos which can help you when thinking about applying, or going through the application process:

  • Thinking about PIP – This video focuses on the steps before the claim and who might be eligible. Watch here

  • 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 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
    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: EnglandWales.




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.




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:

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:

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.