Sorcha McPhillips Sat 01 May 2021
For too long families in Northern Ireland have lived with the stigma of Huntington's disease and been deprived of the services they so desperately need.
Services for those affected by Huntington's disease are disjointed with no joint up working and a postcode lottery of care exists with specialist services, completely overstretched and largely limited to those who live in the east of the province. This means that patients and their families are left to cope on their own with symptoms getting unnecessarily worse at times leading to avoidable hospitalisations and psychiatric stays. Suicidal ideation and self-harm as well as addiction issues and family breakdown are not uncommon.
We want the Department of Health to commission the design of a regional Huntington's disease strategy and the creation of a health and social care pathway from the point of predictive diagnosis to end of life which takes account of physical and mental wellbeing, the impact of Huntington's on the whole family and is truly consistent, accessible and equitable to all regardless of where in the province they live.
We have a vision where every person diagnosed with Huntington's gets access to the same information regardless of where they live and are connected to services immediately to help them and their loved ones understand and cope with the diagnosis. They are linked to a multidisciplinary team including genetics, neurology, psychiatry, HD nurse specialist, mental health practitioners, social work, speech and language, dietitian, occupational therapist, physiotherapist and HDANI who work together to provide disease appropriate information, advice and support throughout their Huntington's journey.
Unlike other parts of the United Kingdom and Ireland, there is no opportunity for local families to engage in research or access clinical drug trials. Information about specialist fertility services to avoid passing on the faulty HD gene are not promoted and if couples do find out about PGD they need to apply for Trust finding to attend clinics in London. In the absence of a regional strategy, families in Northern Ireland are at risk of missing out on timely access to emerging treatments that others across the UK and Ireland will have access to.
We are asking you to sign this petition to show your support for Huntington's disease families and call on the Minister, Department of Health and others to commit to working with HDANI to design and deliver a Regional HD strategy and care pathway.
End the postcode lottery of care by following the link below