Patient engagement officer jobs

Senior Families and Professionals Advisor

Fragile X Society

Salary: £40,000 to £46,000 depending on experience
Hours: Part-time  (22.5hours per week)
Location: Great Dunmow, Essex, with some flexible and hybrid working considered
Contract: Permanent

Help change lives for families affected by Fragile X

The Fragile X Society is the UK’s leading charity supporting individuals and families affected by Fragile X syndrome and associated conditions, including FXTAS and FXPOI.

For more than 35 years we have provided trusted information, emotional support, and practical guidance to families across the UK. Our work connects families with clinicians, researchers, and services while helping professionals better understand Fragile X.

We are now looking to recruit a Senior Families and Professionals Advisor (Adult Enquiries) to join our small and dedicated team as part of a planned transition when our long serving advisor retires later this year.

This is a rare and rewarding opportunity to take on a respected specialist role supporting families navigating complex health, social care, and life transitions.

About the role

This is a senior advisory role supporting adults, families, carriers, and professionals affected by Fragile X conditions.

You will provide information, guidance, and emotional support to individuals and families across the UK, helping them navigate services such as adult social care, benefits, housing, health services, and transition into adulthood.

The role also plays an important part in ensuring that the Fragile X Society continues to provide trusted, accurate, and meaningful information for families and professionals.

A structured handover and training period will be provided by the current postholder to help transfer specialist knowledge.

Key responsibilities

You will:

• Lead the handling of adult and carrier enquiries including those relating to Fragile X associated conditions such as FXTAS
• Provide emotional support and practical guidance to families navigating complex situations
• Maintain up to date knowledge of adult benefits, legislation, and social care services
• Work with clinicians, services, and professional networks supporting people with Fragile X
• Ensure the Society’s information resources and website content remain accurate and relevant
• Support colleagues through mentoring and case discussion where appropriate
• Contribute to the continued development of the Society’s information and support services.

About you

We are looking for someone with experience in complex advisory or support work within areas such as:

• disability services
• adult social care
• learning disability
• health services
• rare disease charities
• advocacy or advice organisations.

You will also have:

• strong knowledge of UK benefits systems and adult social care
• excellent communication and listening skills
• high levels of emotional intelligence and resilience
• experience supporting people in complex or sensitive situations
• the ability to work both independently and collaboratively within a small team.

Previous knowledge of Fragile X is not required, but an interest in learning about rare genetic conditions and the lives of families affected by them is essential.

What we offer

Working at the Fragile X Society means being part of a values driven charity where your work genuinely changes lives.

We offer:

• Salary of £40,000 to £46,000 (pro-rata) depending on experience
• 25 days annual leave plus bank holidays (pro-rata)
• Pension contribution
• Flexible and hybrid working options where possible
• Professional development opportunities including rare disease and clinical learning
• A supportive and collaborative team environment.

The role also includes the opportunity to work closely with leading clinicians, researchers, and national rare disease networks.

About the Fragile X Society

The Fragile X Society supports thousands of families across the UK and works closely with clinicians, researchers, and policymakers to improve understanding and support for Fragile X conditions.

Our mission is to ensure that every family affected by Fragile X has access to reliable information, compassionate support, and a community that understands their journey.

How to applyTo apply, please send:

• your CV and supporting statement explaining your interest in the role and relevant experience.

Further information about the Society can be found on our website.

Are you an experienced Legacy Administrator or Assistant Legacy Officer looking for your next opportunity?

Great Ormond Street Hospital Charity are hiring for a permanent Legacy Executive, a critical role within our Legacy Management team.  The successful candidate will be responsible for some of our core administrative duties and a blend of legacy casework beyond just pecuniary gifts, working with the team to manage risk and maximise the value of our legacies.

The team are supportive, collaborate and work closely together to manage and honour gifts left in Wills. It's a detail focused environment, but one where you can share knowledge, offer guidance and celebrate success together. 
 

Salary
The salary for this position is £35,023 per annum and we operate a hybrid working policy of a minimum of 2 days per week in the office. 
 

In line with our EDI strategy and Total Reward policy, we calculate our salaries based on benchmarking data across the charity sector.  To ensure fairness for existing staff and new joiners, we do not offer salaries above the advertised rate.

Key Responsibilities

• You will manage your own varied caseload of legacy gifts, playing a key role in ensuring income is received efficiently while balancing legal responsibilities with sensitivity and care.
• You will be at the heart of legacy operations, setting up and maintaining accurate records across systems, giving you real ownership of high-quality data that informs decision-making and drives performance.
• You will build meaningful relationships with executors, families and professional contacts, using every interaction as an opportunity to show appreciation and strengthen long-term supporter connections.
• You will collaborate across teams on engaging projects such as legacy events and the Book of Remembrance, helping to celebrate supporters’ stories and bring their impact to life.
• You will use your attention to detail to track income, review estate valuations and ensure compliance with legal and regulatory requirements, helping to maximise the value of every gift. 
• You will play an active role in improving processes and shaping how legacy management works, with opportunities to contribute ideas and enhance the team’s effectiveness.

Skills, Knowledge and Expertise

• Experience managing detailed, process-driven work where accuracy and organisation are essential within legacy, legal or estate administration environments.
• A clear understanding of how Wills and probate work, and confidence applying this knowledge in a practical setting.
• Strong communication skills, with the ability to explain information clearly and handle sensitive conversations with empathy and professionalism.
• Ability to manage your own workload, prioritise effectively and keep multiple cases progressing at the same time.
• Confidence working with databases or record systems, maintaining accurate information and using data to support decision-making.

Do you want to join an organisation committed to addressing low literacy levels amongst people in prison?
Shannon Trust are delighted to be working with His Majesty’s Prison & Probation Service (HMPPS) to provide peer-led learning programmes at HMP New Hall. Working closely with the prison and their staff, people in prison, Shannon Trust volunteers and mentors, this post will lead the delivery and development of our prison-based reading and numeracy programme, maximising opportunities for people in prison to learn to read.  

Ideally you will have some experience of prison settings underpinned by the ability to build relationships and personal qualities that include resilience, determination and a problem-solving approach. 

This role is a fixed term role until 31st March 2027 with the opportunity to be made permanent subject to contract renewal.

The role will be prison-based. Employee benefits include a company contribution to pension scheme of up to 5%, 30 days holiday plus bank holidays, life insurance, paid volunteering days, discounts via Reward Gateway and an Employee Assistance Programme. The biggest benefit though is our culture – our people really want to work for the organisation.

?We welcome job applications from people with lived experience of the criminal justice system and do not routinely ask for details of any criminal convictions. These roles do require prison security clearance, so we will need to ask for details of any relevant criminal convictions before an offer of employment is finalised.

Please note this role is subject to contract award

Closing date is 23rd April 2026.
Interviews are planned for 29th April 2026.

REF-227 632

Healthwatch Brent, Westminster and RBKC

Healthwatch was set up in 2013 to champion the rights of health and social care users, and hold the health and social care system to account for how well it engages with the public. During 2026/27 these services are preparing for transition while continuing to build on their legacy.

Healthwatch’s remit covers all publicly funded health and social care services for adults and children.

Healthwatch Brent, Healthwatch Westminster and Healthwatch Kensington & Chelsea are three of 152 local Healthwatch organisations. The Advocacy Project Hosts three services. We’re building on the important work that’s been done to date,  planning for the future while bringing new insights from the voices of seldom heard and hard to hear groups.

About the role

Are you an accomplished Health and Social care manager looking for a new exciting challenge?  Are you adept at managing teams and services through change? Passionate about the role of independent voice and the value of lived experience in the NHS?  The Healthwatch senior manager role is for you.

As Healthwatch senior manager for The Advocacy Project you will play a central role in shaping the strategic and operational management of our Healthwatch services. This includes direct support to Healthwatch managers in Westminster, Kensington & Chelsea, and Brent, ensuring that the services are inclusive, effective, and of high quality.

Key responsibilities

• To Provide strategic management for effective, inclusive and high quality local Healthwatch.
• Supporting the 3 advisory boards to be at their most effective during this period.
• Working with the CEO to engage with the ICB and other stakeholders to plan for next steps
• Make sure the work of HW Westminster (HWW), HW Kensington & Chelsea (HWRBKC) and HW Brent (HWB) conforms to all required principles, objectives and statutory obligations, and meets all contractual requirements between The Advocacy Project (as host organisation) and the local authorities.
• Line management of HW managers in each borough.
• Provide leadership to make sure the patient and public voice is heard across health, social care, in a continuously changing external environment.
• Working with managers in each borough, make sure HWB, HWW and HWRBKC involve the local community, particularly seldom heard groups, in influencing local and national policy and are responsive and sensitive to the needs of community groups with protected characteristics.
• Be available to represent The Advocacy project, HWB, HWW and HWRBKC at all strategic governance and external meetings with key stakeholders, liaising with nominated Board leads regularly.
• Support local managers to develop the services to respond to emerging trends and needs, while keeping abreast of Healthwatch England best practice to continually enhance the quality of the service.
• Develop effective partnerships with key staff in health and social care services.
• Work with local managers in each borough to ensure all projects are informed and influenced by local communities and strategic partners.
• Support the effective planning and resourcing of project work, working to Healthwatch England best practice guidance.
• Ensure that project plans and intended outcomes are clearly communicated to key stakeholders.
• Work with the shared Insight and Outcomes Analyst to make sure quality systems are effective and used to demonstrate the Healthwatch service is achieving outcomes and impact,and meeting key performance indicators.
• Ensure that lived experience and service user involvement is embedded in all evaluation.
• Provide reports to key stakeholders, including The Advocacy Project Trustees,  Commissioners, Advisory Boards, Health and Wellbeing Boards and Healthwatch England demonstrating our impact.
• dentify funding opportunities and work with The Head of Business Development to support funding bids.
• Work with the borough Communications leads to make sure all relevant internal and external stakeholders receive relevant, timely and up-to-date communication about all Healthwatch projects.
• Keep up to date with current trends in health policy, service provision, current practice and matters concerning people as citizens, by reading, attending courses and networking.

General responsibilities

• Participate in team meetings, training and organisational development.
• Contribute to monitoring reports.
• Keep to our policies, including health & safety, safeguarding and risk regulations.
• Work to our mission, vision, and values.
• Work flexibly to meet the needs of the service, in line with the changing local and national landscape and carry out other projects and tasks as needed.

Person specification

Essential

• Excellent knowledge of and experience of working at a high strategic level with the health and social care system and the voluntary and community sector, in particular Healthwatch.
• Thorough understanding of user engagement, community development, user involvement, and co-production principles and practice.
• Comfortable and capable of engaging with senior leaders in Health and Social Care both on a one-to-one basis and at strategic meetings such as scrutiny boards.
• Experience of managing through periods of change and uncertainty
• Experience working with diverse communities and tackling discrimination and inequality.
• Relevant experience in project delivery and evaluation, including data gathering and analysis, or training in research methods, statistics, or data analysis.
• Significant leadership or line Management experience including managing, developing and motivating a staff team.
• Experience in contract management and compliance.
• Excellent communication (written and verbal) and interpersonal skills. Effective in working with a wide variety of stakeholders ranging from trustees, commissioners, partners, colleagues, and local residents.  
• Excellent organizational skills; ability to work on own initiative and plan and prioritize own workload.
• Experience managing a budget.
• Commitment to working within The Advocacy Project and Healthwatch code of conduct, equality and safeguarding policies.
• Willingness to attend further training as appropriate and to adopt new procedures.
• Willingness to promote Healthwatch and The Advocacy Project in line with our mission, vision and values.

Desirable

• Experience working with volunteer boards and high caliber volunteers.
• Evidence of ongoing personal development and training related to the role.
• Detailed knowledge of NHS systems
• Understanding the public health challenges in Westminster, RBKC, and Brent.
• Experience working with senior managers in public sector bodies.

Benefits of working for us

We’re committed to providing an empowering, flexible and supportive working environment for all our staff.

Our employee benefits include 30 days annual leave (including up to 3 days between Christmas and New Year), participation in a pension scheme with 6% employer contribution, access to a free confidential counselling service, and an interest-free travel/bike loan.

All our staff are supported to learn and develop in a variety of ways, including a monthly lecture series where we invite sector experts to talk to our staff on topical issues.

Do you want to join an organisation committed to addressing low literacy levels amongst people in prison?

Shannon Trust are delighted to be working with His Majesty’s Prison & Probation Service (HMPPS) to provide peer-led learning programmes at HMP Leeds. Working closely with the prison and their staff, people in prison, Shannon Trust volunteers and mentors, this post will lead the delivery and development of our prison-based reading and numeracy programme, maximising opportunities for people in prison to learn to read.  

Ideally you will have some experience of prison settings underpinned by the ability to build relationships and personal qualities that include resilience, determination and a problem-solving approach. 

This role is a fixed term role until 31/03/2027 with the opportunity to be made permanent subject to contract renewal.

The role will be prison-based. Employee benefits include a company contribution to pension scheme of up to 5%, 30 days holiday plus bank holidays, life insurance, paid volunteering days, discounts via Reward Gateway and an Employee Assistance Programme. The biggest benefit though is our culture – our people really want to work for the organisation.

?We welcome job applications from people with lived experience of the criminal justice system and do not routinely ask for details of any criminal convictions. These roles do require prison security clearance, so we will need to ask for details of any relevant criminal convictions before an offer of employment is finalised.

Please note this role is subject to contract award.

We reserve the right to withdraw this role early if a suitable candidate is found  

?Interviews are planned for week commencing 27th April 2026.

REF-227 633

Do you want to join an organisation committed to addressing low literacy levels amongst people in prison?

Shannon Trust are delighted to be working with His Majesty’s Prison & Probation Service (HMPPS) to provide peer-led learning programmes at HMP Bullingdon. Working closely with the prison and their staff, people in prison, Shannon Trust volunteers and mentors, this post will lead the delivery and development of our prison-based reading and numeracy programme, maximising opportunities for people in prison to learn to read.  

Ideally you will have some experience of prison settings underpinned by the ability to build relationships and personal qualities that include resilience, determination and a problem-solving approach. 

This role is a fixed term role until May 2027 with the opportunity to be made permanent subject to contract renewal.

The role will be prison-based. Employee benefits include a company contribution to pension scheme of up to 5%, 30 days holiday plus bank holidays, life insurance, paid volunteering days, discounts via Reward Gateway and an Employee Assistance Programme. The biggest benefit though is our culture – our people really want to work for the organisation.

?We welcome job applications from people with lived experience of the criminal justice system and do not routinely ask for details of any criminal convictions. These roles do require prison security clearance, so we will need to ask for details of any relevant criminal convictions before an offer of employment is finalised.
?Interviews will be held on a rolling basis.

REF-227 635