Patient advocacy and policy officer jobs in edinburgh, scotland
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Role: Healthcare Partnerships Lead
Hours: 22.5hr hrs per week, (3 days)
Location: Homebased within the UK with a requirement to travel and support in person events, conferences and meetings
Reporting to: Director of Programmes and Partnerships
Benefits: Flexible working arrangements, 28 days of annual leave (FTE) + 1 day for your birthday, pension scheme
Key relationships: Managing external relationships with key healthcare professionals and partners and working closely with our Medical Advisor and Information and Research Manager
Salary: £38,000 per annum (FTE)
Essential: Access to own car and full clean driving licence
About The Role
Do you have experience in working collaboratively, establishing meaningful partnerships within the healthcare sector and are looking to make an impact at the world’s leading multiple sclerosis healthy lifestyle charity?
We’re looking for an experienced Healthcare Partnerships Lead to continue to steer the delivery of our Healthcare Engagement Strategy and build upon our Program expertise. With a strong focus on reducing health inequalities, you’ll lead, develop and deliver activities that meet our strategic ambition to ensure that as many people as possible understand that there is hope after an MS diagnosis.
We need to engage with healthcare professionals as, for many people with MS, this group are the first people they seek credible information from and will potentially have a life-long relationship with, given the incurable nature of the condition.
About Us
Overcoming MS is the world’s leading multiple sclerosis healthy lifestyle charity established in 2012. We are unique in our whole person approach and practical evidence-based focus upon self-management of MS, formulated as a holistic program. At Overcoming MS, we are here for everyone with MS who wants to take control of their health and wellbeing.
Although there is currently no cure for MS, we help people with MS to live well by making informed lifestyle choices. They have clear, practical actions to take, by following an evidence-based self-management program. This program uses substantial scientific evidence of how holistic self-care, alongside medical therapies, benefits people’s physical and mental health. Knowing people can change their risk of deterioration through lifestyle choices gives hope to us all.
Our vision is that people with MS feels empowered to take control of their health, are making informed lifestyle choices and living a full and healthy life.
Overcoming MS Strategy
Our strategy for 2024 to 2026 establishes five key objectives:
Raise awareness within the global MS community of the importance of healthy lifestyle and the Overcoming MS Program.
Deliver world class information, tools and support to the Overcoming MS community, empowering them with the confidence and knowledge to follow, understand and share the Program, wherever they start.
Build the authority of Overcoming MS through developing team expertise, communicating the existing evidence base, building new evidence, and through influencing and working in partnerships.
Grow a collaborative, knowledgeable, passionate and sustainable team of staff, facilitators and volunteers.
Develop financial growth and independence through reducing our cost base, increasing fundraising via diversified activity, and generating income through other sources.
Job Description
The Healthcare Partnerships Lead will be responsible for the delivery of our Healthcare Engagement Strategy, through the development and delivery of projects and activities which embrace collaboration, raise the profile and credibility of both the Overcoming MS charity and Program, and extend supported self- management of MS within the health and social sector. We want to be the go-to charity for lifestyle and living well with MS and to demonstrate the added value we bring through education, resources, community and partnership working.
The past 12 months have seen the laying of a strong foundation for both increasing credibility and collaboration. This has included identifying barriers to supporting self-management in MS, developing education, piloting projects and resources to overcome some of those barriers in partnership with healthcare professionals. Honing datasets and presenting these meaningfully, has added credibility and demonstrated value. We want to see that foundation built on further, and shared more widely, taken forward by the new Healthcare Partnerships Lead.
Key Responsibilities
· The successful delivery of the Healthcare Engagement Strategy, identifying and prioritising engagement with our key audiences and stakeholders.
· Working closely with both our Medical Advisor, Information and Research Manager (new role) and with the existing HCP Advisory Group and wider engaged healthcare partners, to facilitate the development of the relationship, profile and reach between the charity and the health and social care sectors. Around information sharing, service design, and understanding of the role of lifestyle in holistic management of MS.
· Identifying and attending key healthcare events and conferences, building networks, partnerships and other resources to increase knowledge and awareness of how the charity and Overcoming MS Program, benefits people with MS and maximise opportunities for signposting.
· Building frameworks for data gathering and evaluation to effectively review benefit of collaborative interventions and report outcomes widely and meaningfully, in partnership with the Information and Research Manager.
· Maintaining understanding of policy and priorities of healthcare agencies to ensure mutual or aligned priorities from both, in addition to people living with MS, are all factors taken into consideration when developing plans and pathways.
· Identifying opportunities for collaboration and partnership working through engagement with HCP professionals and organisations.
· Lead on healthcare education through our existing partnership with the British Society of Lifestyle Medicine, marketing the education widely, evaluating its benefit to HCPs and strategically reviewing the format, vehicle and content as appropriate.
· Providing clear, responsive and consistent educational content around the importance of lifestyle choices and behaviours to healthcare professionals based on the current evidence-base and the Overcoming MS Program, working closely with the Information & Research Manager to ensure up-to-date and validated content.
Other Responsibilities
· Creating meaningful engagement with the MS community and healthcare professional partners, widening our reach to support more people with MS.
· Mapping local assets and services to target and test appropriate resources and support to MS clinics, to help HCPs share information and support their patients to self-manage, tracking success.
· Empowering people affected by MS and their healthcare professionals to discuss lifestyle modification and the Overcoming MS Program with confidence, improving self-management and health outcomes.
· Engaging new HCP audiences, reducing barriers and perceptions of lifestyle modification in the treatment of MS.
· Leading on the delivery, monitoring and evaluation of key programmes, considering key insight, collecting and analysing data to measure impact against project and charity targets.
· Supporting the delivery of key products, services and events both in person and online that reach multiple audiences and budgeting accordingly.
· Identifying opportunities for accessing funding streams, working with Fundraising colleagues to diversify our income base.
· Raising our profile within the healthcare environment so that they recommend the charity and will advocate on our behalf.
· As we are a small, busy charity, all staff help with the general running of the organisation in addition to their specific role activities.
About you
Education or experience in a related field e.g. healthcare management, public health, you’ll have a strong understanding of the NHS, Public Health and the UK health care policy landscape. Knowledge of the global health care landscape would be an advantage but not essential.
You’ll have previous experience as a senior healthcare lead or similar role for example within the NHS or similar medical field or will have experience leading community or public health related engagement programmes.
With excellent communication, presentation and influencing skills, including working with stakeholders at very senior and professional levels, you’ll have strategic analytical skills, able to frame problems and solutions in a logical fashion and demonstrate a high degree of empathy and compassion for health-related issues.
You’ll have intellectual flexibility, able to embrace and deal with ambiguity, complexity and to be open to creativity in leading and bringing about effective change.
You are comfortable working remotely and attending events during evenings and weekends, with a full UK driving licence and access to a car.
What can we offer you?
Our staff benefits include:
• 28 days annual leave (FTE) plus a day off for your birthday and bank holidays
• Flexible working
• Remote working
• Pension
• Employee Assistance Programme
How to apply
Please send your CV and a covering letter by midnight on Sunday 8th June.
In your covering letter, please let us know:
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Your motivation for applying for the role
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Why you feel your skills are suitable for the role
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Your notice period
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Your current location.
Please respond ASAP, as we will start screening candidates as soon as we receive applications.
First stage interviews will be held online on Tuesday 17th June.
Second stage interviews will be held online on Friday 20th June.
We are an equal opportunities employer, committed to diversity and inclusion in the workplace. We make hiring decisions based on merit. If you fill most or all the requirements, please apply.
No agency contact, please.
Registered Charity
11 - 20
We're here for everyone with MS who wants to take control of their health and wellbeing.
The client requests no contact from agencies or media sales.
Thank you!
Using Anonymous Recruitment
This organisation is using Anonymous Recruitment to reduce bias in the first stages of the hiring process. Submit your application as normal and our system will anonymise it for you. Your personal information will be hidden until the recruiter contacts you.
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
Job Title: Community Engagement Officer
Location: Remote with frequent travel (must be UK-based)
Reporting To: Advice and Support Lead
Hours: Full-time
Salary: £26,000 - £28,000
Contract Type: Permanent
About Us
Metabolic Support UK (MSUK) are the leading organisation for Inherited Metabolic Disorders (IMDs), supporting thousands of people worldwide through providing individual support, building communities, and continually advocating for and empowering those living with IMDs.
We are a small but mighty team providing individual support, advice and connection to the over 40,000 living with an IMD in the UK and more across the world. We have a strong interest in rare disease policy and campaign for the rights of our rare disease community for better healthcare services, access to treatment and to be able to live well everyday.
Role Overview
MSUK are seeking a passionate and proactive Community Engagement Officer to strengthen and grow our patient and family community. There are over 1500 IMDs and many of our community use social media, other patient groups and in-person events to connect and learn. This role is central to how we engage with the people we support — through social media, community groups, events, and collaborative partnerships. You’ll be the bridge between our charity and the people we serve, helping to build a supportive, inclusive, and informed community.
Key Responsibilities
Engagement & Social Media
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Manage and monitor all online patient communities responding to community messages and comments with empathy and timeliness
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Moderate relevant support online community groups, ensuring they are safe, active, and welcoming spaces
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Identify themes and areas of interest to advocate internally for MSUK response to meeting community need
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Signpost our Individual Support service, identify and flag individual enquiries to the Individual Support Lead
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Working with our Campaign & Comms Lead, grow the charity’s presence across social media platforms (e.g., Facebook, Instagram, LinkedIn, X, TikTok)
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Develop content that resonates with patients, families, and supporters, amplifying community stories and voices
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Build and manage our lived experience co-production group ‘Metabolic Advisory Council’
Community Insight & Advocacy
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Functioning as the ‘internal expert’ on IMD communities for all MSUK team members
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Using our Contact Record Management system to log and manage community database to provide timely, relevant insight to team members when required
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Work with Head of Insight & Advocacy to engage and support communities in relation to timelines for insight work
Events & Campaigns
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Plan, organise, and execute online and in-person community events (support groups, awareness days, family meetups, annual conference)
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Collaborate with the team to deliver campaigns around awareness, fundraising, and education
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Work with Virtual Support Assistant to coordinate speakers, logistics, communications, and follow-ups for all events with
Relationship & Partnership Management
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Build and maintain relationships with other patient advocacy groups, charities, and health organisations
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Represent the charity at external events, meetings, and forums relevant to the rare disease space
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Seek opportunities for collaboration, knowledge sharing, and joint initiatives
Community Fundraising
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Work with Fundraising lead on community support for individual and events fundraising including event research, donor journey support and online promotion
Person Specification
Essential
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Experience managing online communities and/or social media platforms in a professional or volunteer capacity
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Excellent written and verbal communication skills
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Strong organisational skills and event planning experience
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Empathetic and sensitive to the lived experiences of patients and carers
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Ability to work independently, from home, and as part of a small, dynamic team
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Confident, keen to travel and enjoys in-person events and networking
Desirable
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Personal or professional experience within the rare disease, health, or charity sectors
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Experience managing partnerships or external relationships
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Familiarity with tools such as Canva, Mailchimp, Eventbrite, or similar
What We Offer
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A supportive and flexible working environment.
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Opportunities for personal and professional growth.
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The chance to make a tangible impact in the lives of people affected by rare diseases.
Thank you!
Job purpose
This is an exciting time to join Action for ME. With developments in research and policy alongside delivering services which are in high demand, you will enjoy working in a fast-paced and continually changing environment. You will be responsible for overseeing operational programme design and delivery, reporting of progress, and measuring the impact of all Action for ME work to improve the lives of people affected by ME. Better meeting their needs today while taking action to secure change for tomorrow. You will also assist the Chief Executive in implementing the organisational strategy, and by adapting and evolving delivery models on the ground. As you will have operational management and oversight for our Healthcare Services and hold the Designated Safeguarding Lead role for the organisation, you will bring considerable services-related experience at a management and leadership level. The Chief Executive will focus predominately on external matters and therefore you must have experience of managing an organisation to achieve high quality programmes with evidenced impact and motivated teams. You will act for the Chief Executive on topics, as agreed, and deputise during their absence.
Key duties
1. Leadership
- Ensure that children and adults with ME are at the heart of everything we do through meaningful engagement and participation to influence all aspects of our work.
- Deputise for the CEO and represent and promote the Charity at national meetings and events.
- Deputise for the CEO during periods of absence, and in relation to specific matters, issues or elements of operation as delegated from time to time by the CEO, ensuring a consistency of approach and decisions aligned with the organisation’s objectives.
- With the CEO and HR Business Partner, lead on implementing the People and Culture Strategy and ensuring our Equity, Diversity, Inclusion and Belonging plan is achieved.
- To provide support, leadership and coaching to the Management Team to ensure the smooth running of the organisation and development of the Charity.
- Contribute to the development of the overall strategy for Action for ME, ensuring that the best use is made of available resources within agreed priorities. Ensure that agreed strategy is delivered to target and in line with agreed budgets.
- Work closely with the Chief Executive and Trustees to ensure effective reporting to the Board and sub-committees.
2. Operations & management
- Manage the day-to-day operations of the Charity ensuring high quality service provision that meets all best practice, legal and regulatory frameworks and internal policies and procedures.
- Hold overall management responsibility for our Healthcare Services including the role of the CQC Nominated Individual, ensuring all regulatory requirements and compliance are met.
- Manage the staff and volunteer team, including holding regular meetings and ensure the efficient running of the office ensuring a culture that supports, inspires and motivates the team while ensuring required standards and quality are met at all times through effective performance management.
- Act as the organisational Designated Safeguarding Lead (children and vulnerable adults), working closely with the Designated Safeguarding Officers, colleagues and the Safeguarding Lead Trustee; facilitate the annual safeguarding audit (led by the Lead Trustee) and ensuring safeguarding standards across the organisation are maintained.
- Contribute to the learning and development of key personnel including coaching support (either directly or through the identification of external coaches) to enhance performance.
- Establish (where not already in place) and maintain a clear performance outcome-focused management system driving positive change and improvement across all teams.
- Ensure that policies and procedures are effectively implemented and kept up-to-date to enable the effective management of operations and support growth.
- Take the lead role for data protection, health and safety, compliance and risk management across the organisation and act as the Designated Safeguarding Lead.
3. Finance & income generation
- Hold financial leadership responsibility, working closely with the Finance Manager and the Fundraising Director to ensure sustainability for our work.
- Ensure effective financial management with procedures in place which are kept up-to-date and implemented accordingly.
- Provide support and engagement, where appropriate, to actively grow our income.
4. Working with others
- Lead, nurture and develop relationships with key stakeholder groups and partner organisations, both locally and nationally, supporting Action for M.’s place as the ‘go to’ organisation for people affected by ME
- Lead on new business ideas and pilot projects in line with the strategic objectives; with colleagues, develop the business case, identify and manage risks, lead implementation across teams, evaluate success and learning and make recommendations for future development.
5. Other key accountabilities
- Be proactive in keeping up to date with developments affecting operations and maintain and improve personal competence through continuous professional development.
- Take direction on projects and priorities from the CEO, which may vary from time to time.
- To ensure best value in all service delivery.
Person specification
Experience and Knowledge
- Proven experience in an operations, leadership, or senior management role, ideally within the charity service delivery or healthcare sector, with the ability to develop and implement strategic plans that drive organisational growth and reporting that demonstrates impact delivered. If you come from outside a support services background, you must demonstrate sound understanding of the regulatory and best practice requirements related to delivering support and/or healthcare services.
- An understanding of ME and associated/overlapping illnesses, the impact on people affected by it or a commitment and ability to understand the illness and lead services to meet the needs of children and adults with ME
- Experience managing multi-disciplinary teams, including remote workers, and fostering a supportive workplace culture where change is a constant.
- Safeguarding understanding at a management/decision-making level.
- Proven experience of building and nurturing strong relationships internally and externally at all levels.
- A sound understanding of outcome-focused, effective performance management, quality assurance and risk management.
- Strong financial acumen, including budgeting, financial planning, and resource management in the voluntary sector.
Skills and Behaviours
- Experience of governance, risk management, and compliance, including within regulated services, ideally within a charity and/or service delivery setting.
- Proven ability to think strategically, balance competing demands, use initiative to solve problems and actively seek innovative approaches to problem solving and delivering results.
- Strong interpersonal skills including motivational, negotiating influencing and networking skills which build strong internal and external relationships.
- An ability to understand, analyse and make effective use of data across all of our work.
- A proven ability to coach and motivate staff and to build and lead teams reflecting organisational culture and values, a respectful, constructive and energetic style.
- Proven, strong MS Office skills that supports writing, email, internet and database use.
- Demonstrable ability to work within our organisational values
Registered Charity
21 - 50
Our mission is to improve the lives of people affected by ME. Better meeting their needs today while taking action to secure change for tomorrow.
The client requests no contact from agencies or media sales.