Getting the care you need

People with Huntington’s and their families may need a lot of support to help them at different stages. As the disease progresses, symptoms and needs change too. There are different types of care that you might need to access at different times.

You’ll find a lot of information in this section about the different kinds of help and support available and what types of care needs they meet.

If you are caring for someone with Huntington’s, see our information for carers.

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’.

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 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 advisor (SHDA) to help. If the social worker who is assessing your needs doesn’t have experience of working with people with Huntington’s, your SHDA can help them understand more about the disease and talk about the type of care that might suit you.

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

There are different types and levels of homecare, 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.

Your local specialist Huntington’s Disease advisor (SHDA) might know of home care agencies or professionals that have experience of working with people with Huntington’s. Your SHDA 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.

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 to enable you to manage your own care services 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.

More info is available on the NHS website.

Care from the NHS

If you need medical care on an ongoing basis outside of hospital, you may be eligible for NHS continuing healthcare, 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.

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 health care 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.

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.

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.

Further information on NHS care is available on the NHS website.

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 local SHDA can tell you about homes which have experience of working with people with Huntington’s.

More information is available on the NHS website.

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 local SHDA 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.

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 SHDAs. 

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

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 will have developed knowledge and experience of treating the disease, and will usually be attached to a specialist Huntington’s clinic (see above).

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.

Neuropsychiatrists

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.

Dieticians

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.

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.

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.

Physiotherapists

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 OT. If your OT 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 SHDA may also be able to advise them.

Dentists

It’s really important to keep up good dental hygiene and there may be reasons why this is harder if you have Huntington’s, for example you may find it tricky to handle your toothbrush. Your dentist can talk to you about how to help you care of your teeth including guidance on toothbrushes and toothpastes. If you have any problems with swallowing, it’s important to let your dentist know this as they may adapt the work they do because of it. If your dentist has not worked with someone with Huntington’s before, your SHDA may be able to advise them.

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.

Medicines

There are medications available that can help with some Huntington’s symptoms, such as involuntary movements and anxiety or changes in mood. Different people respond to different medicines, so ask your GP or specialist clinician for advice.

Complementary therapists

Individuals with Huntington’s and their carers may benefit from using complementary therapies such as aromatherapy and massage. These can help with relaxation, stress management and relieving muscle ache and tension. It is usually necessary to pay for these types of therapies.

Specialist Huntington’s Disease advisers (SHDAs)

As Huntington’s disease is relatively rare, yours may be the only family impacted by the disease that some healthcare professionals have encountered. It’s very important for professionals involved in your care to get specialist help and advice from your local SHDA.

SHDAs acquire much of their extensive knowledge and understanding of Huntington’s from the shared experiences of families and healthcare professionals across the country. Their key role is to:

  • Provide a listening ear
  • Help families receive support, care and advice that they want and need to enable them to cope
  • Access information on benefits, specialist equipment, respite, holidays and so on
  • Increase families’ knowledge and skills
  • Help to coordinate care through contact with health and social care professionals and non statutory services

While living with Huntington’s can be very challenging at times, the right care and support can make a huge difference. We’re here to help you get the care you need. Contact us if you need more information or can’t find what you are looking for.