Normal Pressure Hydrocephalus (NPH)/Dementia Coordinator 

Job Title: Normal Pressure Hydrocephalus (NPH)/ Dementia Coordinator
Reports to: Director of Services
Hours: 35 hours per week (willingness to work outside of office hours, evenings and weekends when required)
Location: Home Based or Hybrid *
Salary: £31,672 pa

Closing date: 11pm on Sunday 21st July

Interviews: Monday 12th August in our Head Office, Peterborough

*(dependent on proximity to our Head Office in Peterborough, with travel across England, Wales & Northern Ireland as required)

Click here to read an introduction to the role.

Purpose of the role

To provide the foundations for improved health, social and emotional outcomes for adults living with NPH and to support their families/carers.

To focus primarily on delivering 3 of Shine’s 7 Strategic Goals all of which drive Shine’s ambitions:

  •  Goal 3: Adults of all ages with spina bifida and/or hydrocephalus have the choices and opportunities to live healthy and independent lives
  • Goal 4: A connected community
  • Goal 7: Transforming attitudes and improving access to health and care services through engagement, partnerships, research and campaigning   

And contributing to delivery of other strategic goals as appropriate.

Staff management
  • Shine is committed to providing quality advice and support. As service lead you will provide supervision, training, guidance and support in line with Shine’s HR processes and procedures to other members of staff who are involved in the delivery of work for the NPH service.
Project management 
  • Evaluate existing support for members living with NPH and their families/carers within Shine
  • Develop and grow the service based on the needs and voice of our members
  • Lead the support of members living with NPH and their families/carers across England, Wales & Northern Ireland
  • Develop annual work plans, which will enable continued development and delivery of the NPH service
  • Create a framework for the service and develop Shine colleagues to support delivery in key areas
  • To provide training to upskill colleagues in dementia
  • Create greater consistency across all Nations by developing strong working relationships with key colleagues in England, Wales and Northern Ireland
  • Drive collaborative working with the National Programmes and Engagement Manager and the National roles – particularly Health and Benefits
  • To manage any specific project budgets, ensuring spend is planned, within budget and allocated to the appropriate cost centre
  • Maintain an oversight on data capture and data management for the work on NPH, alongside the Director of Services develop outcome measures to demonstrate impact
  • Work in line with GDPR, maintaining confidential member records providing clear and accurate record keeping for monitoring and evaluation
  • Identify new potential sources of funding as the project develops and contribute to funding bids as requested.
  • Working with colleagues in Services, Fundraising, Marketing, Trust and Foundations colleagues and Shine’s membership to identify opportunities for long-term sustainability of the work.  



To manage all enquiries from our members living with NPH and their carers, providing direct one to one support and advice including:

  • Welfare benefit/income maximisation advice
  • Condition specific support to enable the person living with NPH to have choice and control over their current and future care needs.
  • Signposting/referring to more specialist information and support, internally or to other local, regional or national organisations 

You will also:

  • In collaboration with Shine’s National Programmes & Membership Engagement Manager, Health and Services colleagues and external partners, lead the delivery of the NPH awareness week once a year
  • Review existing and develop new resources for members with NPH alongside the Health team
  • Develop and deliver an annual programme of events and peer support groups for members with NPH and their families and carers
  • Oversee social media, Facebook and WhatsApp support groups
  • Organise steering groups, providing opportunities for Shine members to guide the development of the service, and engage in consultations and research 
  • Develop partnership opportunities and closer working relationships with health professionals, statutory organisations and charities
  • Identify key campaigns to improve the rights of members with NPH, improving access to statutory services, access to NHS care, awareness regarding diagnosis and treatment.
Other core requirements of working for Shine: 
  • To work with Shine’s national and regionally based colleagues to ensure that all work is complementary, coordinated and beneficial to our members
  • To maintain the high standards of respect, communication, professionalism, empathy and sensitivity conducive with working for an organisation that represents 13,500+ members living with spina bifida and/or hydrocephalus or associated conditions.
  • To ensure that Shine’s safeguarding policies and processes are followed, and are ‘everyone’s responsibility’
  • To actively take part in the annual staff residential

To undertake any other duties in line with the job role.  

Person Specification

Experience – essential

  • A minimum of 3 years' experience of working with older people living with dementia
  • Experience of project management and delivery
  • At least two years’ experience of delivering support and advice services for older people.

Knowledge, skills and abilities – essential

  • Excellent verbal and written communication skills
  • Ability to build strong relationships both with internal and external stakeholders
  • Ability to develop and deliver professional presentations and training in a variety of settings 
  • IT literate with a good knowledge of Microsoft 365 and confident in the use of CRM Database systems
  • A non-judgmental approach to working with people 
  • A good knowledge of adult safeguarding policy, procedures and reporting 

Qualification- essential

  • Relevant qualification in health or social care

Experience – desirable

  • Welfare benefits: Experience of supporting older people to maximise their income
  • Experience of providing supervision, guidance and support to others as a lead
  • Developing and delivering opportunities to enable and empower disabled people
  • Organising information sessions and social events 
  • Multi-disciplinary working and advocacy  
  • Evidence of successfully developing a base of local, regional and national contacts/partners who can provide specialised support to our members/ families
  • Working in the third sector in a paid or unpaid capacity 
  • Working with, and supporting, volunteers 

Qualifications - desirable   
Relevant qualification in:  

  • Information, Advice & Guidance
  • Management
  • Project management 

In return, Shine will offer you:

  • A competitive salary
  • 35 hour working week
  • 25 days annual leave plus additional discretionary leave between Christmas and New Year
  • Support to learn and develop
  • Opportunity to purchase additional annual leave
  • Additional annual leave due to length of service
  • Defined contribution pension

To apply, please submit your CV and supporting statement* (your statement should be no more than 2 pages A4), which should outline your interest and explain how you meet the role criteria to 

*CV's without a supporting letter will not be considered.

Closing date: Sunday 21st July at 11pm

Interviews at Head Office, Peterborough: Monday 12th August 2024

Shine is a Disability Confident employer and will offer guaranteed interviews if a disabled applicant meets the minimum criteria for the job.

Please note we reserve the right to interview suitable candidates before the closing date, therefore we encourage applications as soon as possible.

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