Patient experience volunteer volunteer jobs in Seaford, east sussex

Help Change the Future of Polycystic Kidney Disease Research

Patient & Public Involvement and Engagement (PPIE) Manager

PKD Charity
Remote (UK-based) | Part-time (22.5 hours / 3 days per week)
Salary: £33,000–£35,000 FTE pro rata (£19,800–£21,000 actual)

The PKD Charity is looking for an exceptional communicator and relationship-builder to lead patient involvement in groundbreaking PKD research.

This is not a standard engagement role.

You will help ensure that the voices, experiences and priorities of people living with polycystic kidney disease directly influence research, clinical studies and future healthcare decisions across the UK.

PKD affects around 70,000 people in the UK. It causes kidney failure, lifelong health complications and reduced life expectancy. There is currently no cure.

We believe research is stronger when patients are genuinely heard — not consulted as an afterthought.

That’s where you come in.

The Opportunity

As our Patient & Public Involvement and Engagement (PPIE) Manager, you’ll lead and shape involvement activity through the PKD Research Hub, working alongside patients, researchers, clinicians and partners to make research more inclusive, meaningful and impactful.

You’ll:

• Lead and support our Patient Involvement Panel
• Facilitate high-quality patient engagement and focus groups
• Work directly with researchers and industry partners
• Champion authentic lived experience in research decision-making
• Support awareness of clinical studies and research opportunities
• Create compelling patient stories and engagement content
• Help influence the future direction of PKD research in the UK

We’re Looking For Someone Who:

• Understands the power of meaningful patient involvement
• Can confidently manage relationships with patients, researchers and stakeholders
• Has experience in PPIE, health research, healthcare or the charity sector
• Is an excellent facilitator and communicator
• Brings empathy, professionalism and initiative
• Wants to make a tangible difference every single day

Experience in rare disease, kidney health or long-term conditions is welcomed but not essential.

Why Join Us?

At the PKD Charity, you’ll join a passionate national charity working to improve lives through:

• Research
• Advocacy
• Support
• Education
• Patient voice

This is a rare opportunity to shape a growing area of work with real national impact — while working flexibly as part of a supportive, mission-driven team.

What We Offer

✔ Fully remote working
✔ Flexible part-time hours (3 days / 22.5 hrs)
✔ 25 days annual leave pro rata + bank holidays
✔ Pension scheme
✔ Meaningful, purpose-driven work
✔ Opportunity to influence national research activity

Apply Now

For details on how to apply, please see the application pack.

Deadline 9am Monday 1st June. Interviews will provisionally be held online on Wednesday 10th June. However we will monitor applications on a rolling basis and may approach for interview at an earlier date. If we find the right candidate we may close the recruitment campaign at an earlier time, so we encourage you to get your applications in at the earliest opportunity.

Bowel Cancer UK is the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. We support and fund targeted research, provide expert information and support to patients and their families, educate the public and professionals about the disease and campaign for early diagnosis and access to best treatment and care.

We currently have employees working across four nations in England, Wales, Scotland and Northern Ireland. Thanks to the generosity of our community, we’re in a privileged position to be able to deliver our ambitious new strategy, On a Mission. There are huge challenges facing bowel cancer patients across the UK and our community needs us now more than ever. We’re building a strong and united team to bring us closer to a world where nobody dies of bowel cancer.

Job Summary for Senior Health Information Officer

This role is ideal for someone passionate about creating high-quality, evidence-based health information and making complex medical topics accessible to all audiences. You will play a key part in developing engaging content, maintaining information standards, and ensuring patients, professionals and the public have access to accurate, up-to-date resources.

You’ll work collaboratively across teams, manage a wide range of digital and print resources, and help drive innovation in how health information is delivered and used.

Key Responsibilities

• Develop, write and review high-quality, evidence-based health information content
• Maintain and update digital and printed resources in line with latest evidence
• Translate complex medical and scientific information into clear, accessible language
• Create engaging content across multiple formats (web, social media, publications)
• Monitor research and sector developments to keep information accurate and current
• Work with internal teams, clinical experts and external partners to ensure quality and consistency
• Support evaluation, impact measurement and continuous improvement of information services
• Contribute to innovative approaches to reach diverse and underrepresented audiences
• Assist with funding applications and provide insight on service impact

About You

• Experience in health information, medical communications, or research translation
• Strong writing, editing and proofreading skills
• Ability to interpret and communicate complex evidence clearly
• Skilled in digital content creation and multi-channel communications
• Highly organised with strong project management abilities
• Collaborative, proactive and committed to high-quality, patient-focused work

​Please note this is a summary of the role. For a comprehensive outline of responsibilities and requirements, please refer to the attached job description.

Safeguarding is everyone's responsibility and at Bowel Cancer UK we are committed to safeguarding children, young people and vulnerable adults and we expect all staff and volunteers to share this commitment.

Successful candidates may be subject to either a satisfactory basic, standard or enhanced DBS check from the Disclosure and Barring Service (DBS) dependent upon the role.

Senior Stories Officer

Bowel Cancer UK is the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. We support and fund targeted research, provide expert information and support to patients and their families, educate the public and professionals about the disease and campaign for early diagnosis and access to best treatment and care.

We currently have employees working across four nations in England, Wales, Scotland and Northern Ireland. Thanks to the generosity of our community, we’re in a privileged position to be able to deliver our ambitious new strategy, On a Mission. There are huge challenges facing bowel cancer patients across the UK and our community needs us now more than ever. We’re building a strong and united team to bring us closer to a world where nobody dies of bowel cancer.

Job Summary for Senior Stories Officer

The Senior Stories Officer is responsible for sourcing, developing and sharing powerful lived‑experience stories that bring Bowel Cancer UK’s mission and impact to life. The role leads the ethical gathering, crafting and distribution of case studies across channels including media, digital, social media, fundraising materials, campaigns, partnerships, and internal communications.

The postholder will work closely with people affected by bowel cancer, ensuring their experiences are represented sensitively, accurately and in an informed way. They will also support colleagues across the charity to use stories effectively, maintaining a central story and assets bank, and safeguarding processes.

Safeguarding is everyone's responsibility and at Bowel Cancer UK we are committed to safeguarding children, young people and vulnerable adults and we expect all staff and volunteers to share this commitment.

Successful candidates may be subject to either a satisfactory basic, standard or enhanced DBS check from the Disclosure and Barring Service (DBS) dependent upon the role.

Money & Energy Advice Service Lead

Pro rata salary: £39,825 (35 hour week)

Home-based, with travel as required

Up to 35 hours per week with occasional evenings and / or weekend work will be required

Permanent (subject to external funding)

Responsible for: 2.0 FTE Money & Energy Advisers

About the role

This is an exciting opportunity for an experienced welfare benefits practitioner with a passion for sharing knowledge and enabling teams to deliver above and beyond.

With around 4 in 10 beneficiaries, we support seeking help with financial difficulties, this is a pivotal role for Kidney Care UK.

We are seeking a knowledgeable and confident specialist income maximisation activities for a role with three key parts: to lead a small team delivering benefits and energy advice and support directly to clients; to play a key role in upskilling and supporting our outstanding Patient Support team across the country; and to be the subject matter expert within Kidney Care UK.

Our external partners – British Gas Energy Trust have committed to fund our Money and Energy Service until March 2027. We are advertising this position as ‘permanent’ – we anticipate confirmation by December 2026 whether funding will be extended beyond March 2027.

This role is made possible thanks to the support of British Gas Energy Trust.

About Kidney Care UK

Around 3.5 million people in the UK live with chronic kidney disease, and one million of them don’t know that they do.

Since 1975, Kidney Care UK has been at the forefront of supporting people with kidney disease. From our early days when we campaigned to introduce donor cards in the UK, we have worked hard to support and represent the interests of everyone affected by kidney disease. 

About the Money & Energy Advice Service

The Money & Energy Advice Service (MEAS) provides information and support for welfare benefits and income maximisation and promotes awareness of efficient energy use. Working closely with Patient Support officers, MEAS provides specialist knowledge and directly supports clients to achieve sustainable financial outcomes. The service was established in 2023 with the support of British Gas Energy Trust and is embedded as a valued element of the many ways Kidney Care UK supports people affected by kidney failure.

What we offer

Working at Kidney Care UK is incredibly rewarding and you will see the life-changing impact that the charity has on kidney patients and their families:

• Flexi-time – we are flexible about start and finish times, and flexible about your location.
• Annual and Christmas leave – we offer 25 days annual leave for full time employees plus bank holidays. We also close for three days between Christmas and New Year, and you don’t need to take this from your annual leave allowance.
• Pension – you’ll be eligible for and auto-enrolled into a pension scheme where your employer will contribute 8% of your salary.
• Health cashback plan – ability to claim back a wide variety of routine medical treatments.
• Employee Assistance Programme – access to a wide variety of support including counselling, health resources and advice.
• Cycle2Work scheme

Bowel Cancer UK is the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. We support and fund targeted research, provide expert information and support to patients and their families, educate the public and professionals about the disease and campaign for early diagnosis and access to best treatment and care.

We currently have employees working across four nations in England, Wales, Scotland and Northern Ireland. Thanks to the generosity of our community, we’re in a privileged position to be able to deliver our ambitious new strategy, On a Mission. There are huge challenges facing bowel cancer patients across the UK and our community needs us now more than ever. We’re building a strong and united team to bring us closer to a world where nobody dies of bowel cancer.

Job Summary

This role forms a key part of a new Strategy & Insight Team at Bowel Cancer UK, which seeks to build core capabilities to enable us to be as effective as we can be for people affected by bowel cancer. The Audience Insight Specialist will be an internal leader, building our capability to understand our core audiences and the people we need to reach to achieve our strategic goals. You will support a cultural shift in how the charity takes an audience-led approach to planning, decision-making, and communications, as our CRM, data infrastructure, and Strategy & Insight functions continue to develop. Making best use of internal and external sources, you will distil data into meaningful insight, tailored to different audiences. You will support a consistent approach to audiences across the organisation, while flexing to meet the needs of different teams, ensuring that any understanding of audience is rooted in evidence.

Safeguarding

Safeguarding is everyone's responsibility and at Bowel Cancer UK we are committed to safeguarding children, young people and vulnerable adults and we expect all staff and volunteers to share this commitment.

Successful candidates may be subject to either a satisfactory basic, standard or enhanced DBS check from the Disclosure and Barring Service (DBS) dependent upon the role.

This role will support the development and delivery of our services and resources for young people born with a cleft lip and/or palate. Working closely with the Engagement & Services team to help us achieve our mission. 

The Youth Engagement Coordinator will sit within the Engagement & Services Team. They will join a friendly and supportive team of seven colleagues who, together, are responsible for the delivery of CLAPA’s adult, family, children and young people and involvement services. The post holder will develop and deliver services for eight- to seventeen-year-olds, which will enable the young cleft community to connect, share experiences and access guidance and emotional support. Shaping what support looks like, creating positive impact and strengthening reach, this new role for CLAPA will make a real difference to the lives of children and young people born with a cleft.

If you think you have the talent, passion and experience to help us ensure we can always meet the needs of the community we serve, we want to hear from you.

Relationship Manager (North and Scotland)

Full-time (37 hours) | permanent

c£36,000 depending on experience | Home-based | Hybrid

At the Bone Cancer Research Trust, we exist because families refused to accept a world where primary bone cancer had no hope, no answers and almost no research. Today, we’re the UK’s leading bone cancer charity and every supporter you engage helps push vital research forward and provides comfort to families who need us.

About the role

As Relationship Manager, you’ll build genuine, lasting connections with our Special Funds - our named funds created in honour or memory of someone affected by primary bone cancer, community supporters and local businesses. Your relationship-led approach will help create the family feel connections we’re known for, inspiring long-term support and raising vital income for people affected by primary bone cancer

You will:

• Grow and manage Special Funds, our named funds created in honour or memory of someone affected by primary bone cancer.
• Build strong, meaningful relationships with all our supporters, ensuring every person feels valued and connected.
• Secure and steward regional corporate partnerships
• Meet a regional income target of approx. £300,000
• Represent BCRT in your region, strengthening awareness and community connections at meetings and events.

About you:

• A natural relationship builder with 3+ years’ fundraising experience and a genuine passion for supporter care.
• Compassionate and professional, especially when working with families personally affected by primary bone cancer.
• Organised, proactive and confident working independently, able to balance a varied workload.
• A clear and engaging communicator, bringing warmth and positivity to every interaction.
• Able to travel across the region (car required).

Why you’ll love working with us

You’ll join a small team that works collaboratively and keeps our community at the centre of everything we do. We’re supportive, friendly and you’ll have the flexibility to manage your work while seeing the direct impact of the relationships you build.

What we offer

· Flexible approach to working hours

· 30 days annual leave per year plus bank holidays

· Private Health Insurance (following successful probation)

· 6% employer pension contributions

· Life Assurance of 4x annual salary

The Pepper Foundation is a local charity funding children’s hospice care at home, specialised play and family days for children living with life-limiting and life-threatening conditions in Hertfordshire and Buckinghamshire. 

The Trusts & Foundations Fundraiser will be joining Pepper at an exciting time as we launch our new three-year fundraising strategy. Backed by committed investment and with full Board approval, we are delighted to be growing the charity to deliver sustainable income that directly supports local children and families with hospice care in the comfort of their own homes.

Working closely with the Head of Trusts & Foundations, you will play a pivotal role in increasing income from trusts and foundations by developing and managing a strong pipeline of funders, securing new grants, and building long-term relationships that lead to increased and multi-year support. You will research and prepare compelling applications to both new and existing funders, alongside producing timely, engaging reports that clearly demonstrate impact.

This role requires a highly organised and motivated individual with a passion for writing, strong attention to detail, and the ability to deliver exceptional cultivation, stewardship and relationship management of trusts and foundations aligned with our mission.

Your work will directly support hospice at home care, specialist play services, and meaningful family days out for children with life-limiting and life-threatening conditions – making a tangible difference to families during the most difficult of times.

Hours: 22.5 hours per week working from home – applicants must live within Hertfordshire or Buckinghamshire (or surrounding counties)

Salary: £19,800 per annum for 22.5 hours per week (£33,000 FTE per annum)

Key requirements:

• Work with the Head of Trusts & Foundations to agreed income targets and growth.
• Build and maintain a strong pipeline of small and medium trusts and foundations (giving up to £10,000).
• Produce high-quality, tailored applications to prospective funders aligned with agreed criteria.
• Prepare meaningful update reports, demonstrating the impact of a funder’s support, whilst ensuring all reporting requirements and deadlines are met.
• Deliver excellent relationship management and stewardship through regular reporting and tailored communications.
• Conduct prospect research to identify and prioritise new trust funding opportunities aligned with The Pepper Foundation’s work.
• Maintain accurate and up-to-date records of all communications on the Donorfy CRM database whilst keeping abreast of GDPR.
• Stay up to date with current trends in trust fundraising.
• Ensure compliance with relevant regulations, including the Fundraising Regulator Code of Practice, and internal Safeguarding Policies.
• Represent The Pepper Foundation at events as required.

How to apply: For further details about the role, please download our recruitment pack. Please send your CV with a cover letter explaining why you would make a great candidate for this role and how you meet the job description. 

Closing date: 1st June 2026 at 5pm

Interview dates: First-round interviews on 10th and 11th June and second-round interviews on 15th June 2026.

Interviews will take place at our office in Berkhamsted. Please let us know if you have any accessibility requirements or need any adjustments for the interview.

If appointed, an enhanced DBS check will be required.