Involvement Matters

Public Engagement in health and social care

Nobody understands what we need from the next generation of health and social care staff more than the actual patients and carers themselves. We have a wealth of expertise in using research to develop our curriculum - but this is not enough. A mountain of expertise exists within those who actually use the services on a regular basis. Learning from these real life experiences is essential in training future generations of health and social care staff.

Public engagement is paramount to success in ensuring our curriculum is relevant and forward-looking. So, for the past ten years, we‘ve been working with patients and carers to capture their unique insight into services to help improve and develop how we teach our health and social care students. We want our students to become the nurses of the future who fully understand how to deliver the best and most appropriate care and support for patients and carers.

Here, Dr Danny Taggart explains how the Service User Reference Group (SURG), at the University’s School of Health and Social Care, is playing a key role in developing our teaching so our students become nurses more in tune with the needs of patients and carers.

For over ten years, members of the Essex community have been contributing to the education and development of health and social care students at the University. This public engagement was founded on a recognition that people with disabilities and long-term health conditions, who use services regularly, have a unique perspective on what future generations of health and social care staff need to understand about the patient and carer experience.

This public engagement happens in a wide variety of ways. The Service User Reference Group (SURG) meets every three months and coordinates involvement across all the programs in the School of Health and Social Care. The group is co-chaired by a nominated service user and an appointed academic. All meetings focus on each person being given every opportunity to contribute in a way that fits with their needs and values.

Sharing knowledge and experience

It is the chance for academic staff and service users to come together to share experiences and organise teaching priorities to fill student knowledge gaps.

Our members are contributing to the development of a new nursing curriculum. We know from epidemiological research that many people with long-term physical and mental health problems have suffered severe adversity in childhood and this can make trusting and engaging with services more complicated.

By involving members who have suffered trauma in their lives, we are reshaping how we teach our student nurses to understand and take account of the ways in which adversity impacts health and engagement with services. By doing this complex, but important, engagement between trauma survivors, academics and students we hope to develop nursing practice across the region to be sensitive to the needs of this group.

The model of engagement we employ is based on the disability rights activist principle of ‘Nothing about us without us’. We have just finished a process of consultation with a disabled people’s user-led organisation Shaping Our Lives, who developed with our members the following mission statement:

"Involving people with lived experience of impairments and long-term health conditions, and using health and social care services, provides experiential knowledge that is valuable and cannot be substituted by traditional classroom study. The expertise that is shared by people with lived experience is vital in developing student understanding so they are able to develop person centred and inclusive practices as a professional. People with lived experience offer a unique insight that provides the fundamental basis for academic study."

- Shaping our Lives

The model is currently being evaluated by a doctoral clinical psychology student and the research is being supported by our members, who are taking part in interviews and offering consultancy.

We had the first Involvement Matters event last year to recruit new members who also provided us with an opportunity to celebrate the diverse ways in which our members have contributed to teaching and research excellence for many years. As the Centre for Public Engagement develops across the university we hope to make an ongoing contribution to the development of different models of engagement and hope that the longstanding public engagement carried out, often voluntarily, by our fantastic membership can be recognised as an important foundation for future innovation.

Dawn's story

We asked Dawn - a newly-recruited service user and carer colleague - to explain why her experience is so important to the SURG group.

“I am a carer for my son, who has Asperger’s and who developed a multitude of physical disabilities as he evolved into adulthood. During my career I served in the Army and worked in many care environments working with people with dementia and Alzheimer’s. I have also worked as a support worker within the mental health and learning disabilities sector. I joined the prison service in 1993, taking medical retirement in 2010 due to fibromyalgia ME and mental health issues. Whilst working as a manager within the prison service I found many prisoners were suffering extended periods of mental health problems without the relevant help, support and understanding they desperately needed in prison and on release.

“Over the years I have gained the understanding and experience of working with a multitude of personalities who need to navigate the healthcare system, some with experience and others with the ability to fail at every opportunity. I have found that with every good intention to help, there is a person who just doesn’t understand what you are telling them. There are those who don’t want to and those who just can’t. It really is not what you say to people, it comes down to how you say it.”

Please keep up to date with the work of the SURG by following their blog.