Hearing the views of our communities is crucial in ensuring that NHS and social care services are right for our local populations in Sussex. Volunteers play a vital role in helping us put the views of our communities front and centre. We want to share the stories of some of these volunteers.

Community Ambassadors

Community Ambassadors are part of an exciting new way of helping the Sussex Health and Care Partnership to understand what is important to local people and make sure local health and care services are what local people need. Jason Grant and Harriet Vogt describe below their experiences of being volunteer Community Ambassadors.

Jason Grant (Community Ambassador – Equality, Diversity and Inclusion)

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“I started working on the Black, Asian and Ethnic Minority (BAME) disparity programme as a Community Ambassador in the aftermath of the death of George Floyd and the Black Lives Matter protests. Being a black man, it was painful to watch the inequalities being played out over the news and I wanted to do something about it.

“I was able to meet with high level decision makers from across the Sussex system and was able to share my thoughts and views for a number of different workstreams. I became an active voice within the online meetings I attended and kept on being invited to speak at other meetings. I was supported really well by my coordinator and had regular catch ups with other community ambassadors to share our collective experiences.

“I would recommend others to sign up to become Community Ambassador if they have a keen interest in health and social care, want to ensure the voice of the public feed into services, and are committed to making a difference for their local communities”.

Harriet Vogt (Community Ambassador – Strategic)

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“One of the projects I have found most rewarding is the transformation of Cardiology and Ophthalmology services in East Sussex, collaborating with clinical leads, NHS strategists, service managers, GPs, volunteer organisations and patients.

“Working in partnership, we developed and shaped a questionnaire that captured rich data about Sussex residents’ experiences and perceptions of these services. We immersed ourselves in the data together, analysing and reporting back on the findings.

“The next stage of the project was a series of 3 x 4 hour ‘Options and Appraisal’ workshops per service, during which I worked with service users and all other stakeholders to co-design and appraise strategic options that addresses patient needs, as well as the needs of the service to enable high quality staff recruitment, financial sustainability, and address health inequalities.

“This is the patient-centric groundwork that will transform our local Cardiology and Ophthalmology services from their current state of excellent to enviable and outstanding”.

Patient Participation Groups

A Patient Participation Group (PPG) is a group of people who are patients of the surgery and want to help it work as well as it can for patients, doctors and staff. Wendy Blunden describes below her experiences of being involved in a PPG.

Wendy Blunden

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“I began volunteering for the NHS in 2012, since then I have been a member of my local PPG – working with patients and practice staff to ensure the views of the patients were heard.

“In December 2021, I became involved in the Communications and Engagement Advisory Group for COVID-19 Immunisation Programme as Patient and Participation Group Lead for West Sussex.

The Advisory Group met virtually, every fortnight, throughout the winter months and continued until the end of April. A range of stakeholders were invited to the join the Group including PPG Leads, Community Ambassador, Healthwatch, voluntary, community and social enterprise organisations and NHS Staff.

“I feel that my main contribution, apart from helping to cascade information to the communities across Sussex on the COVID-19 Immunisation Programme and provide feedback to improve communications’ effectiveness, was to draw the Group’s attention to people who have a needle phobia. As a result of input from the Group’s members alternative images are being used as well as the “Jab-o-metre”.

“It was a privilege to be part of the work. I am certain that taking an active part in community issues has played a vital role in my feeling of wellbeing”.

Kevin Katner

Hear from Kevin about his experiences as a PPG member at his local surgery in East Sussex in this video, in conversation with Anj from the Public Involvement team.

Experts by Experience

An Expert by Experience is someone who is a current or recent service user of mental health services or carer of someone who has/is accessing mental health services, drawing on their lived experience shape local mental health services in Sussex. Victoria Hill and Catherine McGill describe their experiences of being an Expert by Experience below:

Victoria Hill

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“I have been an Expert by Experience (EBE) with Sussex Partnership NHS Foundation Trust since May 2019. I chose to be an EBE because I wanted to give something back to the NHS, and because I wanted to have the opportunity to get involved and make a difference in mental health services.

“My route into EBE work was through Working Together Groups (WTGs). I attended a meeting as a service user, and enjoyed it so much I started attending meetings in Chichester regularly. I was then appointed the new Chair of that group.

“When the WTGs moved online as a result of the pandemic, I was involved in supporting my fellow WTG Chairs in their use of online platforms. We have managed to run WTGs on an increased frequency throughout the last year, and service users have found these sessions a real lifeline. I have now stepped back from chairing a WTG, but I remain connected with their work, managing the WTG Twitter account and recently acting as digital host for the Sussex-Wide WTG Conference, which was attended by over 60 people and raised the profile of WTGs within the Trust.

“Outside of WTGs, I have sat on interview panels, ensuring that the voice and viewpoint of service users is represented during the recruitment process. I have also been involved in the ongoing development of the online EBE Induction for new EBEs, where I use my experience as a Peer Trainer, my understanding of what it is to be an EBE and my digital skills to ensure that new EBEs get the best possible introduction to the role. We have run several of these online EBE Inductions now, training up new EBEs who can now go on to get involved in projects of their own, and empowering them to make a positive difference in the Trust.

“I am proud to be an EBE, and have learnt so much from my involvement and have had so many new opportunities as a result of this role. If I had never attended that first Working Together Group, I would not be where I am today”.

Catherine McGill

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“I chose to become an Expert by Experience after the loss of my sister-in-law to suicide and my husband was hospitalised for a mental health crisis a few months later.

“My mental health had been deteriorating beforehand, and the shock and stress of these two events made it seem impossible that I could ever return to work. I decided to use the experiences of those few months – where services had been good as well as where they had caused issues – to help enhance mental health services in Sussex.

“I initially worked on suicide prevention, but after a while became involved in additional work with a domestic abuse steering panel – due to my own personal experiences in an earlier relationship. I also participated in steering groups, interview panels, projects, focus groups, and the implementation of the new Health and Care Records for service users.

“A significant piece of work I have been involved in was a project which saw the creation of a compassionate call service, contacting people within 3 days who have presented at Emergency Departments with an episode of self-harm or suicide ideation. I worked in collaboration with clinicians and service users to review documentation and sought people’s views.

“As a result of being an Expert by Experience, I have been able to come off the anti-depressants, and over time increase the number of hours I am involved with Sussex Partnership NHS Foundation Trust”.

Healthwatch Volunteers

Healthwatch volunteers play an important role in hearing the views of our population. Paula and Les below describe their experiences of being volunteers.

Paula

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“In a normal year, I would have visited care homes and hospitals and talked to residents and patients about their experiences of health and social care services.

“Despite the pandemic I have still be able to make a contribution through phoning patients after their return home from hospital to see how they were doing and whether they needed signposting to services. I was also involved in a project to find out about how dentists were providing information about services during the pandemic. I also attended meetings of the East Sussex Healthcare Trust on improving the patient experience on being discharged from hospital.

“Most latterly, I undertook a scoping exercise on what services are being provided locally for people with long COVID and what other Healthwatch groups are doing in relation to long COVID. It was good to be able to do something to help whilst staying at home, but I am very much looking forward to being able to meet and talk to patients in person.”

Les

People Bank

The People Bank in East Sussex is a way local people in the county can get their views heard and help to influence the way that social care for adults is provided in East Sussex. Jacqui describes her experiences of being a member of the People Bank.

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Jacqui

Jacqui, 75, from St Leonards has been a member of the People Bank for ten years.

During her retirement, Jacqui is keen to stay involved in the local community and give back where she can. As well as volunteering for local charities, she signed up to get involved with the People Bank.

“The variety of involvement is good with the People Bank and I’ve been able to choose what I get involved with. You can do as much or as little as you want and everyone’s very friendly. There are no rights or wrongs.

“From interviewing in care receivers’ homes and care homes, to giving feedback on posters and website navigation, I’ve learned a lot about what goes on in Adult Social Care.”

Aside from contributing to and learning more about services, Jacqui has found other benefits from being a member.

“It’s a great opportunity to meet different people and understand their views. It’s also great for keeping your brain alert.”

Jacqui recommends that to join the People Bank: “You need to feel confident to challenge people if necessary. Observation and listening skills are a must, and over time you develop these abilities and build your confidence.”