Our members report the following concerns:
 

Expense: The expense regarding extra dietary requirements needs consideration. The person with HD may require 5000 calories daily.

Medical Card: This is a long-term illness yet the medical card can be difficult to obtain and is subject to annual review.

Entitlement to services: Community care support and Home Help Assistance are required to enable the family to care for the person with HD in the home for longer. Also people with HD require Physiotherapy, Occupational Therapy, Speech Therapy and dental care to enable them to maintain their abilities for longer.

Practical help: Families can require practical help in the form of specialised chairs and beds, communication aids and so on which can enhance the quality of life for the person with HD as well as the family.

True cost: The true cost of the illness over time needs to be ascertained and factored into service provision and funding allocations by Health Boards.

Respite care facilities: Respite care and long term facilities are very limited for people under 65 years old, this situation needs to be rectified.

Improvement in legislation: Potential genetic discrimination by insurance brokers, mortgage brokers, employers must be legislated against.

Counselling: Counselling is needed by those at-risk to the disease, those diagnosed with HD and those who wish to take the predictive test.

Information and Support: Information and support for family members is needed, particularly in times of crisis.

Additional Neurologists: Ireland needs an increased number of Neurologists so as to ensure that each person diagnosed with HD is given regular check-ups.

The Association feels that the position of HD families could be greatly improved with work on any or all of the issues raised above.