Huntington’s Disease Specialist (Lothian)

Region:             Lothian

Base:                 Longstone Resource Centre, Edinburgh EH14 2DA (office and homebased)

Salary:              £32, 880 – £36,375

Hours:              36 full time (job share would be considered)

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

  • You will have an allied health profession, nursing or social work background and current professional body membership
  • You will be a skilled communicator with good listening and inter-personal skills
  • You will be enthusiastic and motivated to have a positive influence on the quality of life of the individuals on your caseload
  • You will have a current UK driving licence and access to a car
  • You will have experience of managing the conflicting priorities of a complex, community-based caseload
  • You will be able to demonstrate your ability to work autonomously as an integral part of a small team

What we offer

  • Salary of up to £36,375 per annum
  • Generous 32 days annual leave plus 5 fixed public holidays on appointment
  • Increasing annual leave days to recognise long service (after 5 years)
  • Contribution pension scheme
  • An extended and thorough induction period with ongoing commitment to your training and CPD opportunities
  • A flexible, hybrid approach to work
  • Regular clinical supervision
  • Attention to facilitating peer support with the HD Specialist team throughout Scotland

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.

To apply, please complete the application form and equality monitoring form and send to mailto:sha-admin@hdscotland.org. You will also find the person specification/role description document below.

Application form

Person specification/role description

Equality monitoring form

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.

Admin/Resource Worker (part-time) Highland

Region:          Highland

Based:           Hybrid working model (office and home-based), successful applicant must be within reasonable travel distance to Raigmore Hospital.

Salary:           £20,528 – £21,070 (pro rata)

Hours:          24 hours per week (part-time). Specific days/times to be negotiated.

Are you looking for a role in which you will help to improve the lives of families in your community and beyond? One that encourages you to share your expertise, build new skills and feel valued by colleagues, clients and the organisation you work for?

We are looking for a part-time Admin/Resource Worker to join our Highland service.

This is an exciting time to join Scottish Huntington’s Association with the launch of Standing Tall: A Strategy For Growth 2023 – 28 to transform the care and support of Huntington’s families.

It follows two years of expansion in specialist teams, increased funding, a rise in media engagement, growth in parliamentary support for our work, and the success of our ground-breaking Dance 100 event in Glasgow.

Providing support to the Senior Huntington’s Disease Specialist (SHDS) in our Highland Service, the part-time Admin/Resource Worker has a key role to play in the specialist team which provides care management, specialist assessment and regular emotional support to individuals, and their families, throughout the Highlands. The service works in partnership with, and provides training and education to, local Health and Social Care teams, professionals and voluntary agencies involved in all aspects of Huntington’s disease care.

We invite applications from candidates with administration experience and excellent communication, IT and interpersonal skills. You will be competent in using databases and spreadsheets and have working knowledge of NHS IT applications and audio typing. You will also be able to carry out basic budgetary tasks, manage the Senior HD Specialist diary and take minutes of team meetings.

We are looking for someone who is enthusiastic, motivated and takes great pride in the work they do.

About Scottish Huntington’s Association

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.

We are commissioned by NHS Boards and Health and Social Care Partnerships throughout the country to share our expertise with front line staff and build support for improved services and higher standards of care for every family impacted by this devastating disease.

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.

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.

What we offer

  • Generous annual leave entitlement
  • Increasing annual leave days to recognise long service (after 5 years)
  • Contribution pension scheme
  • An extended and thorough induction period
  • A flexible hybrid approach to work
  • Regular supervision

Please note: Hybrid working means a lot of our staff work partially from home however it is expected that the post holder will travel to the office based in Raigmore Hospital as required during their work week.

For further information and to apply, please visit https://hdscotland.org/volunteering/vacancies/ and complete the downloadable application form and equality monitoring form and send to sha-admin@hdscotland.org. You will also find the person specification/role description document below.

Application form

Person specification/role description

Equality monitoring form

If you have any questions please telephone: 0141 848 0308 or email sha-admin@hdscotland.org

Closing date for applications: 12 September 2023

All posts are subject to a Disclosure Scotland PVG Check.

SHA is a registered charity and is committed to promoting equal opportunities in employment. Scottish Charity No: SCO10985.