Huntington's disease supports
Deputy Lawless highlighted the severe impact of Huntington's disease and the work of local campaigners. The Minister of State said she had met the support group and consultants and was working through their recommendations.
I am sure the Minister will be aware of the awful affliction that is Huntington's disease. It is a rare disease but in actual fact, it is all too common and extremely serious. It affects not only the individuals but their families in terms of care. As a genetic disease, it also tends to run in families.
I acknowledge the work in my constituency of councillors Bernard Caldwell and Íde Cussen, who have been to the fore in campaigning on this issue and have brought it to my attention on a number of occasions. A Huntington's disease support group has been formed, bringing together key clinicians and families who have been affected.
They are looking for co-ordinated support services. They have two asks in particular. The first is to establish a working group under the joint auspices of the National Dementia Office, NDO, and the integrated care programme, if possible. Separate to that is to provide funding for supports for dedicated Huntington’s disease nurses, ideally one in Dublin and one on the west coast, to support the immediate care that they need. I know that the Minister of State, Deputy Butler, has been working with the group. I think that the Minister of State, Deputy Rabbitte, has also. There are two specific requests that they would put to the Government. I would appreciate any comment on that.
Comment on this
I recently met with the Huntington's group and I met with some of the consultants who provide care for them. The office of the Minister of State, Deputy Rabbitte, was also involved in the meeting. We are currently working with them and we are looking at the recommendations they have made.