Are you an experienced health or social care professional who has a passion to improve the quality of life and experience of those living with a neurological condition? Then this challenging and extremely rewarding role offers the opportunity to share your expertise, develop your clinical practice and work with a team of like-minded individuals who support the Huntington’s disease community.
You would join our Lothian Service as a full-time Huntington’s Disease Specialist, in a role funded by Lothian’s Health and Social Care Partnerships.
About the role
Our Huntington’s Disease Specialists facilitate quality care for those impacted by Huntington’s disease and their families throughout the Lothian area. You will focus on case management, specialist assessment, anticipatory care planning, and coordination of support. This requires partnership working with, and signposting to, appropriate professionals/agencies. Previous experience of working with Huntington’s disease is preferred but not essential. We will provide you with all the condition-specific knowledge you need in addition to funding your place on Stirling University’s CPD course ‘Huntington’s Disease: An enabling approach to supporting families’, delivered in collaboration with Scottish Huntington’s Association.
About you
What we offer
About us
People impacted by Huntington’s disease need specialist services to cope with a severe and complex disease, the impact on families and a lack of awareness amongst health and social care providers and the wider public.
Scottish Huntington’s Association is the only charity in the country exclusively dedicated to providing expert and personalised support for those impacted by Huntington’s disease.
Our personalised support reduces unnecessary hospital admissions; supports carers and other family members; lowers household poverty; and alleviates wellbeing risks to children and young people living in Huntington’s families.
The successful candidate will join Scottish Huntington’s Association at an exciting time as we prepare to launch Standing Tall: A Strategy for Growth 2023 – 28 to transform the care and support for Huntington’s families throughout Scotland. We are an ambitious and hard-working organisation, recognised at national and international levels for our expertise and approach.
About Huntington’s disease
Huntington’s disease is caused by an inherited faulty gene that damages the brain over time. People with the disease can eventually lose the ability to walk, talk, eat, drink and care for themselves, requiring specialist support from those who understand the condition.
The disease is genetic, meaning it is passed down from one generation to the next. It therefore impacts entire families over generations rather than individuals alone. Anyone with a parent who has Huntington’s has a 50% risk of inheriting the condition from them.
Generally speaking, symptoms begin to develop between the ages of 30 and 50 and can take between 10 and 25 years from starting until the end of life. However, each case of Huntington’s is unique and can vary dramatically both in terms of age of onset, speed of advance and range of symptoms.
Around 800 people in Scotland are living with the symptoms of Huntington’s disease right now. A further 3,200 are estimated to be at risk of developing Huntington’s disease as a result of inheriting the faulty gene.
For an informal chat about the role, please contact Linda Lucas (Team Leader) or Trevor Law (Senior HD Specialist, Lothian) on 0141 848 0308.
For further information and to apply, visit hdscotland.org/volunteering/vacancies for your downloadable application pack or email Morgan Connelly, Facilities and Admin Officer, at sha-admin@hdscotland.org. Completed applications should be sent to sha-admin@hdscotland.org
Closing date for applications: Monday 11 September 2023
Interview date: Tuesday 19 September, venue tbc (Edinburgh area)
SHA is a registered charity and is committed to promoting equal opportunities in employment. Scottish Charity No: SCO10985.