Services & Supports
Your Local Health Office is your entry point to community health and personal social services. Services provided through Local Health Offices and from Health Centres include: general practitioner (GP) services, public health nursing (PHN), community welfare, speech therapy, social work, physiotherapy, occupational therapy, chiropody, psychiatric services and home help. See: https://www.hse.ie/eng/services/list/
It is important to talk to your GP about any changes to your health or any worries you may have relating to the onset of symptoms. If you have a diagnosis of HD your GP can help you manage symptoms and can make referrals to other specialists such as physiotherapists and dieticians. If you are at risk of HD and believe that you are experiencing symptoms but do not have a diagnosis your GP can refer you to a neurologist to carry out a diagnostic test.
A neurologist provides medical care for people with neurological illnesses (those affecting the brain, spinal cord and nerves) at hospital based clinics. A neurologist will assess your symptoms and talk to you about ways to manage and treat them including both medication and support from other professionals.
Public health nurses
Public health nurses (PHNs) provide a range of health care services in the community. They provide advice and assistance in accessing other care services. You may be referred to your local PHN by your family doctor (GP), or you may contact the service yourself through your local health centre or Local Health Office. Info at : http://www.citizensinformation.ie
Your dietician will assess your nutritional needs and give advice. Many individuals with HD require a high calorie intake to maintain their body weight. Dieticians can offer help and advice on getting an adequate and nourishing diet. You can be referred to a dietician by your GP, PHN or through a neurology clinic.
Your physiotherapist will show you how to keep as active as possible to maintain muscle strength and minimise potential problems of falling. You can ask your GP, PHN or Neurologist to refer you to a physio.
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 eating aids, for example. You can ask your GP or PHN to refer you to an OT.
Speech and language therapists (SLT)
Speech and language therapists help people who have difficulties with communicating, eating, drinking or swallowing. You can ask your GP or PHN to refer you to an SLT
A neuropsychologist can help with the cognitive and behavioural challenges of Huntington’s disease. You can ask your GP or neurologist for a referral.
A neuropsychiatrist can help when the behavioural or emotional side of Huntington’s is causing challenges. They will look at symptom management, including the possibility of medication and lifestyle adaptations.
Mental Health Services
Mental health services can include support from community mental health nurses, counsellors, psychiatrists and psychologists. They provide people with opportunities to talk through difficulties relating to mood and emotional wellbeing and help find ways of coping better. You can ask your GP to refer you to a mental health professional.
It is very important to keep up good dental hygiene. Your dentist can talk to you about how best to care for your teeth and offer guidance on toothbrushes and toothpastes. If you have any problems with swallowing or sudden movements it is important to let your dentist know and ask them to adapt the work they do for your safety and comfort.
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, neurologist or psychiatrist for advice.
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.
The Department of Employment Affairs and Social Protection provides up to date info on the supports and services they provide including Illness Benefit, Disability Allowance, Carer’s Allowance, Carer’s Benefit, Carer’s Support Grant etc. See: www.welfare.ie
The HSE provides information on carer supports. If you are caring for a person with a disability you can find information on supports at: https://www.hse.ie/eng/services/list/3/carerssupport/
Citizens Information provides information, advice and advocacy on social services online and at local Citizen Information Centres: www.citizensinformation.ie
National Advocacy Service
The National Advocacy Service provides an independent, confidential and free, representative advocacy service for People with Disabilities. Contact details: National Telephone Number: 0761 07 3000, Email: firstname.lastname@example.org http://www.citizensinformationboard.ie/en/services/advocacy/
Sage Advocacy is a support and advocacy service for vulnerable adults, older people and healthcare patients https://www.sageadvocacy.ie
Money Advice and Budgeting Service (MABS)
The Money Advice and Budgeting Service (MABS) is a free and confidential service for people with debt and money management problems. They have offices throughout the country, website: www.mabs.ie
Tax relief for drivers and passengers with disabilities. There are a range of tax reliefs linked to
the purchase and use of vehicles by drivers and passengers with disabilities.
See HDAI services here.
Family Carers Ireland
Family Carers Ireland provides supports to family carers throughout Ireland
Careline 1800 240724