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Page 4 of 21
MK9, Milton Keynes (Hybrid)
£32,400 per annum (FTE £40,500)
Part-time (28 hours per week)
Permanent
Job description

PSPA is the only national charity offering support and information to people living with the rare, incurable, degenerative brain diseases called Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). Our purpose is to create a better future for everyone affected by PSP and CBD.  We provide much needed support to people and their families living with these devastating neurological conditions. We also invest in research to deepen our understanding of the conditions with the goal of reducing the time to accurate diagnosis and discovering treatments and an eventual cure. Since 2024 we have increased our investment in awareness raising of these relatively unknown diseases.

Since the charity was formed 31 years ago, we have made significant progress in raising awareness and supporting people living with these devastating neurological conditions.  Research estimates there are 10,000 people living with PSP and CBD in the UK.  PSPA currently supports around 2,100 people living with PSP, 415 people with CBD and a furter 3,000 people who are supporting someone with these conditions.  Alongside this we provide education and advice to over 2,000 Health and Social Care Professionals.

Helpline & Support Services Manager

Reports to: Director of Service Improvement and Development

Responsible for: 6 Helpline Care Navigators (HCNs)
Location: Hybrid – minimum one day per week in Milton Keynes office, remainder from home
Hours: 28 hours per week (some evening and weekend hours may be required)
Salary: £32,400 per annum (FTE £40,500)
Contract Type: Permanent, Part-Time
Benefits:

  • Employer contribution to a workplace-defined pension scheme
  • 28 days annual leave plus bank holidays (pro rata)
  • Employee Assistance Programme (UK Healthcare)

Make a Difference Every Day

At PSPA, we support people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD)—two rare and complex neurological conditions. As our Helpline and Support Services Manager, you’ll lead a small, passionate team dedicated to providing high-quality support to individuals and families at critical moments in their lives.

This is more than a management role—it’s a chance to drive real change, improve lives, and lead a service that’s a lifeline for many across the UK.

What You’ll Be Doing

  • Lead and Inspire: Manage and support a team of 6 Helpline Care Navigators (including posts based in Scotland and Wales), and a team of volunteers providing out-of-hours support.
  • Deliver Impact: Ensure people affected by PSP & CBD receive timely, empathetic, and accurate support and information.
  • Enhance Support Services: Design and deliver tailored support groups, including groups for carers and people who are newly diagnosed.
  • Champion Service Quality: Monitor performance, gather data, and use insights to shape and improve service delivery.
  • Promote Inclusion & Safety: Ensure all services are accessible and comply with safeguarding and equality standards.
  • Lead in Safeguarding: Act as Deputy Safeguarding Lead, maintaining a safe and supportive environment for all service users.
  • Collaborate & Influence: Work with internal teams to ensure service user voices influence policy, communications, and PSPA publications.

Key Responsibilities

  • Line manage, develop, and support the helpline team and volunteers.
  • Lead the planning, delivery, and evaluation of support services.
  • Work with the Volunteer Coordinator to deliver evening helpline services.
  • Develop and implement policies to ensure safe, effective, and evidence-based service delivery.
  • Ensure all work reflects the lived experience of people affected by PSP & CBD.
  • Support the creation of new services and resources based on community need.
  • Contribute to the editorial direction of PSPA’s magazine, ensuring it reflects service users' perspectives.
  • Deputise for the Director of Service Improvement and Development, including leadership responsibilities and safeguarding oversight.

Person Specification

Essential Skills & Experience

  • Proven experience in managing a helpline, support, or care service.
  • Strong people management and team development skills.
  • Excellent communication and interpersonal skills—empathetic, clear, and confident.
  • Experience working with people affected by complex health or neurological conditions.
  • Sound understanding of safeguarding responsibilities and procedures.
  • Ability to use data and insights to monitor and improve services.
  • Skilled in designing and facilitating support sessions or groups.
  • Comfortable working independently, flexibly, and across remote/hybrid teams.
  • Confident IT user, including case management and reporting systems.
  • Familiarity with equality, diversity, and inclusion best practices in health or care settings.

Desirable

  • Experience of managing volunteers or out-of-hours services.
  • Knowledge of PSP, CBD, or rare and neurological conditions.

Personal Attributes

  • Compassionate and person-centred in approach
  • Strong leadership presence, able to motivate and empower others
  • Detail-oriented and organised, yet flexible and adaptable
  • Committed to continuous improvement
  • Collaborative and open to feedback
  • Passionate about making a difference for people with rare conditions

If you’re looking for a meaningful role where your leadership can directly improve lives, we’d love to hear from you.

Posted by
PSPA View profile Organisation type Registered Charity Company size 21 - 50

CREATING A BETTER FUTURE FOR EVERYONE AFFECTED BY PSP & CBD.

PSPA logo Play
psp_association_cover.jpg
Posted on: Wednesday, 16 July 2025
Closing date: 06 August 2025 at 23:30
Tags: Helpline

The client requests no contact from agencies or media sales.