Election Asks
The Huntington's Disease Association of Ireland (HDAI) continues to advocate for a Huntington's Disease Care Pathway in order to have integrated care for the physical, cognitive and psychological symptoms associated with Huntington's disease. We ask family members to join us in advocating for this service.
Our flyer has a number of Election Asks you can share.
Please speak with or email your election candidates and share some facts below to highlight the need for improved HD services.
Some Facts
Huntington’s disease (HD) is a severe, progressive, hereditary, neuro-degenerative condition which impacts the whole family. HD requires multi-disciplinary integrated care across services, from diagnosis to end of life. The complexity of the disease arises from changes to thinking, decision making, perception, psychological and mental health wellbeing, increasing physical symptoms and the risk to other family members.
There are about 700 people with symptoms of HD in Ireland and an estimated 400 who have the gene, but are not currently symptomatic and will develop HD at some point in their lives. Each child of a person with the altered HD gene has a 50% chance of inheriting the disease. An estimated 3,000 people live with a genetic risk for HD in Ireland. Many patients and family carers are left without the support needed to cope with the psychological burden of HD.
HD affected families face significant barriers accessing necessary multi-disciplinary services. About three quarters of people with HD experience mental illness but have huge challenges accessing mental health services. The enormous unmet need of the HD community in Ireland is still waiting to be recognised.
The National Clinical Programme for Neurology has led out on a Huntington’s Care Pathway and service proposal for over two years, working with stakeholders across many services, but this work is now at a standstill due to a lack of commitment from policy makers and shifting priorities for the health budget.
There are overwhelming health inequalities facing people with Huntington’s disease in Ireland. The high level of unmet need and the numbers of people affected over generations warrants urgent attention. Compared to Northern Ireland, Scotland and England Ireland has little specialist provision.
Ireland’s only HD neurology clinic at Beaumont hospital is under resourced. It requires a dedicated multi-disciplinary service with psychiatry, psychology, physiotherapy, speech and language therapy, dietetics, occupational therapy expertise and research capacity. The appointment of a specialist HD nurse at Beaumont hospital demonstrates the need for such posts in other regional neurology centres. Dedicated HD multi-disciplinary clinics are needed regionally.
A specialist community outreach service is a critical element of care for HD affected families. A family based approach to recognise the impact on young people is also essential. Patients, carers and family members at risk need much more support than is currently available and this should include better access to information and advice, emotional support, home care support and access to respite care.
Very few long-term care facilities provide appropriate support to people under sixty-five and even fewer provide care to people with HD who have complex needs. Bloomfield Hospital offer a specialist MDT service for a limited number of patients. There is a lack of options for continuing care for most people living with HD.
The current lack of early intervention and multi-disciplinary support is leading to crisis admission to hospital and long-term care which is ultimately much more expensive.
Umbrella Organisation Asks
The Huntington's Disease Association of Ireland is a member of national umbrella groups who also call for improved health and social care services.
Rare Diseases Ireland RDI-Manifesto-2024-09.pdf
Deliver faster diagnosis (with improved counting, coding and healthcare planning), better coordination of care, improved access to health and social care, including mental health care, and improved access to specialist care and treatment, including care and treatment available internationally.
- Leadership, governance and accountability across HSE and department of health
- Earlier, faster and more accurate diagnosis
- Integrated coordinated care pathways within and between health regions and expert centres
- Timely equitable access to innovative treatments and tools
Neurological Alliance of Ireland Campaigns | www.nai.ie
Make Brain Health a priority in the upcoming general election. The Neurological Alliance of Ireland is asking all parties and candidates to commit to making neurological care a political priority, and pledge their support.
- Implement existing national strategies for neurological conditions
- Deliver on Ireland's commitment under article 26 of the UNCRPD to provide comprehensive rehabilitation services
- Ensure the current and future sustainability of the Neurological Care Services provided by voluntary sector organisations
Disability Federation of Ireland DFI General Election Manifesto
The Disability Federation of Ireland identifies six key issues:
- Removing barriers so people can realise equality and inclusion.
- End poverty for people with disabilities and ensure an adequate standard of living.
- Reducing the extra Cost of Disability and recognising that disabled people face higher expenses.
- Improving health and wellbeing for disabled people.
- Increasing opportunities to participate in community life. This includes access to education and decent work.
- Access to disability community supports and services.
