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About the role
We’re seeking a PPIE Manager to lead and strengthen patient involvement across mitochondrial disease research. As an equal partner in the LifeArc Centre for Rare Mitochondrial Diseases, The Lily Foundation leads the programme’s patient and public involvement strategy.
While the initial priority for this role is delivering the PPIE strategy for the LifeArc Centre, as a permanent member of the team, you’ll be responsible for building a sustainable involvement infrastructure that extends across all Lily Foundation research workstreams.
You’ll become a ‘patient expert’ who can bridge the gap between the patient community and the scientific world. You’ll be proactive in upskilling and empowering both patients and researchers, ensuring that lived experience remains the compass for future research.
Key responsibilities
- Lead LifeArc Centre delivery: Work closely with LifeArc leadership and researchers to embed meaningful patient involvement across research activities and work packages.
- Develop the IMPACT network: Grow and support our national patient involvement network, identifying opportunities for families to contribute to research design and documentation.
- Deliver training and capacity building: Develop and deliver training, guidance and workshops to upskill patients, families and researchers in effective PPIE practices.
- Translate and communicate research: Work with our Marketing Team to provide content for the promotion of research news and medical information through social platforms and web-based materials.
- Facilitate focus groups and webinars: Organise patient focus groups to develop a strong knowledge of community needs and lead our quarterly online ‘Zoom Room’ sessions.
- Evaluate and report impact: Measure and share the ‘real world’ impact of PPIE activity to demonstrate its value to LifeArc partners and funders.
- Shape future strategy: Support the development of the UK Mitochondrial Disease Research Institute, ensuring lived experience remains central to the future direction of mitochondrial research.
Person specification
We’re looking for someone who blends a professional background with a genuine heart for our cause.
Essential knowledge and skills
- Professional background: A background in science, nursing or research, with the proven ability to digest complex medical concepts and ‘translate’ them into accessible, jargon-free content.
- PPIE expertise: A deep understanding of Patient and Public Involvement and Engagement best practices and the different stages of the research cycle.
- Training and facilitation: Confidence in designing and delivering workshops or capacity-building activities for audiences ranging from families to senior researchers.
- Exceptional communication: Confidence in building relationships with families, senior academic leads and industry partners.
- Organisational drive: High levels of organisation and the ability to work independently to manage multiple priorities within a ‘small but mighty’ remote team.
Essential experience
- Direct engagement: Substantial experience working directly with patients, families or the public within a charity, research or healthcare setting.
- Delivering PPIE: A proven track record of delivering involvement activities that have influenced research or service design.
- Impact reporting: Experience in measuring and demonstrating the ‘real world’ value of patient engagement to stakeholders and funders.
We reserve the right to close the application window early and advise candidates to apply in good time to avoid disappointment. We particularly welcome applications from people with lived experience of mitochondrial disease or other rare conditions.
Closing date: Monday 11th May 2026
Interviews: W/c 18th May 2026
Registered Charity 
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The client requests no contact from agencies or media sales.
Thank you!
Do you want to work with a leading advocacy charity organisation supporting those in need?
Do you have experience of working or volunteering in welfare, support or health and social care and are looking for a new challenge?
Are you keen to make a difference to people who want to be heard?
Then come and join us here at VoiceAbility.
Due to the success of our delivery we are looking for Advocates to join our team in the North Ayrshire area. We are seeking applicants who have transferable skills, a willingness to learn and a desire to help those in need of support.
About us
VoiceAbility is an independent charity and one of the UK’s largest providers of advocacy and involvement services. We deliver a wide range of service contracts funded by local authorities, health trusts and other voluntary and private sector organisations.
We’ve been supporting people to have their say in decisions about their health, care, and wellbeing for over 40 years. We make sure people are heard when it matters most. For more information on what Advocacy is and the services offered then please visit our website.
About the role
This is an exciting opportunity for Advocates to join and shape this service covering North Ayrshire area. Your role will require you to travel to locations such as clients’ homes and within community settings across the area to meet with clients and professionals. You will be home based for administration; therefore, access to your own transportation and a suitable home internet connection is essential.
About you
Desirably you will have some experience of working in advocacy, or providing welfare, supporting, or caring for Adults who have support needs, ideally for those with a variety of communication needs, mental ill health, physical health issues, or barriers to accessing support.
You should have worked or volunteered in health, social care, welfare, support services, education or young person’s services, or advice and guidance.
How will you make a difference?
You will be responsible for ensuring the individual’s wishes, feelings, beliefs, needs, and values are met to create positive outcomes for the people you support.
You will support people to speak up for themselves and grow in confidence, equip them to understand and exercise their rights and options, and will assist them in the decision-making process relating to their care, treatment, and support.
You will work resourcefully and collaboratively with the individuals you support.You’ll be creative in your approach to empower our clients by ensuring you meaningfully explain people’s options and rights to them.You’ll support individuals to fully participate in decisions affecting them and will make sure they have their voices heard.
Benefits
28 days annual leave plus bank holidays (pro-rata for part-time colleagues) rising to 30 days upon 5 years’ service
5% employer pension & minimum 3% employee contribution
Salary sacrifices pension scheme
Separate Life Assurance Cover (equivalent of two times your annual salary)
Staff discount scheme including retail discounts, entertainment, holidays, gym membership etc
24/7 Employee Assistance programme
Access to remote counselling service
Paid Disability Leave
Paid compassionate Leave
Home Working Allowance
Flexible working
How are staff supported to work remotely?
VoiceAbility has a small number of offices. Employees including Team Leaders are homebased for Administration and meetings will be held online as well as in person in the relevant community.
When you need to travel for work, expenses will be paid (mileage or public transport costs).
VoiceAbility offers the usual regular manager one to ones, Staff forums and communities of practice depending on role. Team meetings with a mix of virtual and in person approach.
Equality and Diversity
VoiceAbility believes in fostering an inclusive workplace which welcomes, values and celebrates the diversity of its staff and partners, treats all on a basis of equality and encourages all to meet their maximum potential.
VoiceAbility are a Disability Confident employer, any applicant that identifies themselves as having a disability and can demonstrate that they meet all the essential criteria for the role will be offered an interview. If you need to apply in a different way, please contact HR for further options.
How to apply
To apply for this role please sign up for a recruitment account by clicking the apply button on this page. Follow the instructions to create your account, upload your CV, and complete our short application form.
Important Dates:
Closing date for applications; Midnight on 14 May 2026, however, VoiceAbility reserve the right to withdraw this vacancy before this date.
Don’t forget to read the person specification so you can tell us about yourself and how your skills, abilities and experiences match the criteria outlined in the person specification.
Hint: you can use work, personal and/or voluntary experiences, and examples to tell us why you should be our next Advocate.
