Juvenile Huntington’s - getting the care you need

Young people with Juvenile Huntington’s and their families need plenty of support to help them at different stages. As the disease progresses, symptoms and needs change too.

You’ll find a lot of information in this section about the different kinds of help and support available.

Types of specialists that may be involved with your child’s care:

  • Neurologist
    A neurologist is a doctor who specialises in conditions that affect the brain, spinal cord and nerves. Having a paediatric neurologist who specialises in Huntington’s disease can be a huge help.
    Children and young people with Juvenile Huntington’s are usually referred by their GP to a paediatrician, and then to a paediatric neurologist.
  • Physiotherapist
    Physiotherapists or ‘physios’ help people to maintain and restore movement and function in their muscles through things like massage, exercises, and advice. Most physios won’t have met someone with Juvenile Huntington’s before, but they will look at your child’s symptoms and decide how they can be managed.
    A physiotherapy programme for children with Juvenile Huntington’s should focus on keeping the range of motion in the joints and on supporting independent mobility. It should also help to prevent the muscle contractions that cause the stiffness many young people with Juvenile Huntington’s experience.
    You can ask for a referral to a physio via your family GP or social services.
  • Occupational therapist (OT)
    An occupational therapist will help your child to move around, carry out normal everyday activities and do the things that matter to them. They will identify any difficulties they are experiencing and provide practical solutions.
    As the disease progresses, you may find that equipment and mobility support become necessary. This is where an occupational therapist can help.
    You can ask for a referral to an OT via a specialist clinic or your family GP.
  • Speech and Language Therapist (SALT)
    Speech and language therapists help people who have difficulties with communicating, eating, drinking or swallowing. A SALT can help to keep up speech and swallowing ability for as long as possible and introduce tools to improve on-going communication abilities.
    Young people with Juvenile Huntington’s tend to perform much better with speech when they have an early referral to a speech therapist.
    You can ask for a referral to a SALT via a specialist clinic or your family GP.
  • Dietician
    Dieticians provide advice about diet and nutrition.
    Many people with Juvenile Huntington’s start to lose weight. If eating becomes difficult, a dietician will help by setting up a high-calorie diet to keep weight up. They can also help with advice around foods that are easy to eat.
    You can ask for a referral to a dietician via a specialist clinic or your GP. Take a look at our Eating Well guide for further advice on diet and nutrition. 

Other types of care available

  • Your local council
    Councils have a duty to provide certain services to families with disabled children, under the Children Act 1989. Some services are free of charge, but your council might ask you to contribute towards others.
    The sort of help you may be able to get, includes care at home, short breaks, holiday playschemes, financial help, e.g. money towards travel costs for hospital visits, and some equipment and adaptations to your home.
    To get this help, you should contact the social services team at your local council. A social worker should then assess your family’s needs, including health, social care and education, and give you advice on what to do next.
  • Support groups
    Living with Juvenile Huntington’s can feel quite isolating at times for young people affected and for their families and carers. Connecting with other families in your area with disabled children can be a big help. Your council can tell you about local support groups near you.
    Forums like the Huntington’s Disease Youth Organisation and the HDA Message Board can also help you connect with others going through similar experiences.
  • Your home
    If your home needs to be adapted to meet your child’s 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.
  • Residential care for children
    Some care homes specialise in providing residential care for children with physical disabilities, learning disabilities or emotional problems. Residential special schools focus on education and provide teaching on-site. Some care homes for children offer "transition" support for young people until they reach their early 20s.To find out more about long term residential care options, speak to your local council, or to your social worker if you have one.
  • NHS funding - “continuing care”
    If your child’s medical needs are very high, they may meet the criteria for fully funded NHS care. This is known as NHS continuing healthcare or NHS children and young people’s continuing care. This means that your child will receive the care and support they need at no cost to you. Because this only applies in situations where a child’s medical needs are too complex to be met by existing universal or specialist services alone, the care given is likely to involve residential care. You can find out more about NHS continuing care here.
  • Respite care
    Having a break can be very important for people living with Juvenile Huntington’s, and their families. Depending on your situation, funding for respite care may be available through social services, potentially using direct payments. Your social worker should be able to advise if you are eligible for funding.There are different kinds of respite care options, varying from activity-based holidays to more traditional care in residential care homes. Your local specialist Huntington’s disease adviser (SDHA) or our special adviser on JHD can help you find out what’s available near you.
  • Carers’ Assessment
    If you are a parent of a disabled child aged under 18, your family can be assessed by your local authority to find out what your needs are as a family unit, and see how best to support you. See Juvenile Huntington’s - getting financial help for more information.
  • GP carers register
    If your GP’s surgery has a carers’ register, ask to be included on it. If your GP knows that you’re a carer, they can keep an eye on your own health and you’ll have someone you can speak to in confidence about how you’re feeling. They can also advise on local organisations and carers services that may benefit both you and your child now and in the future.
  • JHD weekends
    We run weekends for families affected by Juvenile Huntington’s, which offer practical advice as well as an opportunity to meet other families in a similar situation. Please contact us for more information.

Living with Juvenile Huntington’s disease can be very difficult for children and young people and their families, but the right care and support can make a huge difference.

HDA’s specialist adviser on Juvenile Huntington’s, Helen Santini, is happy to help you find what you’re looking for and answer any questions you have. You can reach her on [email protected] or 01279 507656.