Project information

Shine Health Service

Providing specialist health advice and support to people living with spina bifida and hydrocephalus

Ongoing

Charity information: Spina Bifida ● Hydrocephalus ● Information ● Networking ● Equality - SHINE

Spina Bifida ● Hydrocephalus ● Information ● Networking ● Equality - SHINE logo
  • Need

    Need

    Spina bifida and hydrocephalus are little-known conditions, yet they severely affect over 750 lives in Wales. The conditions can affect almost every part of the body, including learning and behaviour, as well as physical disability and mental health. This can have a life-changing impact and yet, due to lack of understanding and awareness, many people are still not getting the appropriate support to enable them to live well with their condition.

    Solution

    Shine’s Health Service will provide specialist support and advice to people affected - from newly diagnosed expectant mums, to teenagers transitioning to adulthood, to those ageing with the condition. Every person is on a different journey and our health team is trained to provide bespoke advice through online platforms, telephone conversations and face-to-face meetings. Holistic, personalised support will help people manage their condition better and live their life to its fullest potential.

  • Aims

    Aim 1

    People with spina bifida and/or hydrocephalus will feel more confident in managing their condition


    Activities

    » Give expert health advice and respond to all queries we receive regarding health and wellbeing
    » Produce and distribute information leaflets for individuals with the condition, parents, schools and healthcare professionals

    What success will look like

    Sharing formal feedback, testimonies and case studies from patients, members and carers to understand and assess the difference in confidence in managing complex conditions

    Aim 2

    People with spina bifida and/or hydrocephalus will have improved wellbeing


    Activities

    » Complete holistic health checks and action plans with our members, covering physical health, mental wellbeing and independent living skills

    What success will look like

    Sharing formal feedback, testimonies and case studies from patients, members and carers to understand and assess the difference in wellbeing in managing complex conditions

  • Impact

    Impact

    *People with spina bifida and hydrocephalus will have improved life chances and well-being,
    *Increased participation and engagement for patients and members in their communities, at school and in work
    *Reduced reliance on NHS and outpatient services

    We will measure this as part of our ongoing monitoring of our Shine Health Service in Wales, using patient feedback and individual studies to understand and demonstrate how improved confidence and wellbeing bring about these long-term changes

    Risk

    Lack of funding - approaching a diverse set of fundraising activities beyond grants and trusts.
    Lack of staff resources - ongoing education and training for staff, hiring experts and keeping informed and updated on medical breakthroughs. Robust hiring and vetting conditions.

    Reporting

    Report when required or on twice yearly basis. The reports include impact reports, case studies, annual report, challenges encountered, KPI's, measure reports and newsletters. Invitations to special events with other funders of said project which include recognition and transparent reporting.

  • Budget

    Budget - Project Cost: £86,493

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      Amount Heading Description
      £82,497 Salaries Salaries and on costs for Health Manager, Health Advisor and part-time Occupational Therapist
      £3,000 Travel Estimate for journeys to meet with patients and members face to face
      £372 Telephone For consultations via phone
      £300 Printing For materials
      £324 Subscriptions For relevant health publications
  • Background

    Location

    Shine provides support services to people of all ages in England, Wales and Northern Ireland. Funding is sought specifically to deliver the Shine Health Service across Wales.

    Beneficiaries

    Shine has been providing information and support to individuals (babies, children, teenagers and adults), to parents and parents-to-be, to grandparents, to sisters and brothers, to aunties and uncles, to friends and to future generations whose lives have been or will be affected
    by Spina Biida and Hydrocephalus or associated conditions (Spina Biida Occulta; Anencephaly; Encephalocele; Intracranial Hypertension; Normal Pressure Hydrocephalus) across England, Wales and Northern Ireland.

  • Why Us?

    Why Us?

    Founded in 1966, Shine has over 50 years experience and are the experts in the field of Spina bifida and Hydrocephalus. Shine is the 'go to' charity for those with the conditions, parents, professionals and future parents who have heard the news at the 20 week scan that their baby has the condition(s).

    Read more about the Charity running this project.

    People

    Health Manager

    Delivering expert, tailored health support and advice for all those with the condition(s) in a way that helps them get the best out of life.

    Health Advisor

    Delivering expert, tailored health support and advice for all those with the condition(s) in a way that helps them get the best out of life.

    Occupational Therapist

    Delivering expert, tailored health support and advice for all those with the condition(s) in a way that helps them get the best out of life.