Equal Services for Huntington's Disease Families in Northern Ireland
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What is Huntington’s Disease?
It is an inherited brain disease: if either parent has it, his or her child has a 50-50 chance of getting it. Huntington’s disease is caused by an overproduction of certain proteins in the brain as the result of a faulty gene. Symptoms, which usually appear after age 30, generally include a form of early-onset dementia, chorea (jerky, random movements of the body), poor coordination, cognitive issues, depression, memory loss and behavioural issues. People with adult-onset Huntington's usually live for 15-20 years once physical symptoms begin to appear but by then they may have been dealing with cognitive and psychiatric issues for as much as ten or fifteen years. It is possible to get a predictive test for Huntington's by engaging in the regional genetics service that provides genetic counselling and a blood test to those over eighteen who meet the criteria. The test can predict if a person will get Huntington's and it could be as much as twenty years before signs start to show. Rates of suicidal ideation among people with Huntington's are more than 200 times than in the general population and eight times higher than any other neurological condition. There is a rarer, more aggressive, form of Huntington's which affects children known as Juvenile Onset Huntington's Disease and those with JHD rarely live beyond their late teens or early twenties.
Is there a treatment or cure?
Although there are a number of clinical trials underway there is currently no cure for HD and no specific treatment. Care management is complex and requires a range of disciplines and skills. It is possible, via a form of IVF called Pre-Implantation Genetic Diagnosis, to have children without passing on the genetic risk of inheritance, though this is not available in Northern Ireland and there is little awareness of it, people may be able to access Trust funding to undergo treatment in London or Scotland.
How many people in Northern Ireland are affected?
There are no official statistics as there is no HD registry and the five Trusts do not keep data on the number of people with Huntington's that receives a health or social care service. Researchers estimate there are 285 people with Huntington's and another 1035 people at risk of inheritance. We at HDANI, have 774 service users of which 133 have Huntington’s disease (the others are at risk of inheritance, tested negative or status unknown and generally perform an informal caring role inc. young carers).
Who is HDANI?
HDANI (The Huntington’s Disease Association Northern Ireland’s) mission is to secure the best quality of life for sufferers and their families and to work with others towards the effective management and eventual eradication of the disease. Our small, dedicated team work throughout Northern Ireland providing support, information, advice and social connections to those living with the impact of Huntington’s Disease. HDANI run regional support groups, provide telephone/online and face to face advice, practical and emotional support as well opportunities for families to connect through our events and befriending services. We develop disease-specific resources, run a website and social media channels. We also work closely with medical professionals to advocate for the most effective care for our families. We provide training and awareness-raising events and keep our families informed of the latest research and medical advances in the quest for effective treatments and ultimately a cure.
How can you help?
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
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