Sorcha McGuinness is Chief Executive of the Huntingdon’s Disease Association Northern Ireland, which provides information, advice and support to patients and carers impacted by Huntington’s disease in Northern Ireland.
Huntington’s disease currently affects more than 150 patients and their families in Northern Ireland, causing a gradual loss of control over movement, behaviour, thoughts, feelings, communication and their ability to swallow.
There is no cure yet and people normally start to show signs of the disease between the ages of 30-50 and experience symptoms for five to 20 years before they die, having been dependent on others for every aspect of their care.
Huntingdon’s disease (HD) is one of the cruellest and most complex diseases known and with a 50% risk of inheritance it tears through entire families, generation after generation. Those without symptoms themselves are left to care for parents, siblings, children and grandchildren.
In 2008, a comprehensive impact assessment of HD services was conducted by a Health and Social Care multidisciplinary advisory group, which included patients and carers, and a plan was agreed.
This would provide a regional nursing service led by a HD specialist nurse coordinator who would manage a HD nurse in each Health and Social Care Trust area and work with auxiliary teams.
This would be combined with the Regional Genetics Service, and a regional HD specialist neurology and psychiatric clinic.
In addition, non-medical support, information and advice services would be provided by the Huntingdon’s Disease Association Northern Ireland (HDANI).
This was agreed to provide the best model of care for HD families. However, almost 10 years later and this has still not been implemented.
What exists instead is an overworked regional HD clinic and a HD nurse coordinator with no nurses to coordinate. Only patients living in the Belfast or South Eastern Health and Social Care Trust areas are entitled to access a HD nurse service.
This one nurse, however, has been left to manage an unacceptable caseload of 65 patients and their families. This postcode discrimination cannot be allowed to continue.
Despite the evidence base of need collected, best practice research provided, and the collaborative engagement of patients, carers, advocates and clinicians, patients feel that the Department of Health, and the Health and Social Care Board have failed in their duty of care towards families affected by HD.
Every week more families dealing with the trauma of diagnosis, progression of symptoms or struggling with the financial, social and practical burdens of disability and caring reach out to HDANI.
These families rely on HDANI to connect them, teach them, support them and fight for their services because no one else can.
Health and social care professionals also reach out to HDANI for information, advice, training and support because there is nowhere else for them to turn.
In the absence of statutory funding HDANI can no longer carry this burden. It is time for the Department of Health to deliver on the notion of co-production and collaboration.
They must work in genuine collaboration with HDANI and the people it supports to devise and implement a service that will have real and lasting impact for people living with HD.
For more information visit www.hdani.org.uk
If you are a carer for someone with HD, how do you get your support and what would make a difference?
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