Shaping Our Lives and University of Essex Involvement Matters report launched

Beginning in 2017, the School of Health and Social Care commissioned the disabled people’s user led organisation Shaping Our Lives to develop the school’s strategy for involving patients, carers and members of the public in all aspects of education.  Becki Meakin, co-director of Shaping Our Lives led the consultation process which involved attending service user reference group meetings at both campuses and talking with academic staff from across the school.

As part of the consultation what became clear was that current service users, carers and volunteers felt they had made important contributions to the education of students and that this was meaningful for them, but that often they had more skills, knowledge and experiences to offer that were being under-utilised. This fits with other research undertaken by Shaping Our Lives which highlights the importance that meaningful involvement in health and social care services has for people who access those services as patients, and that done in a truly collaborative way can have benefits both for the organisations commissioning involvement and people with lived experience.

The consultation culminated with the University hosting an Involvement Matters event in November 2018 which showcased examples of collaborative practice between people with lived experience and academics, as well as using the event as a recruitment opportunity to invite new interested people to contribute to the education of our health and social care students. This recruitment drive has been a great success and we have expanded the range of involvement activities in the school to include service users and carers contributing to program development activities.

The Shaping Our Lives authored summary report of their consultation, including a list of recommendations, has just been published and can be accessed here.

A key message that has been developed and ratified by our Colchester Service User Reference Group which exemplifies the importance of involvement for all health and social care education is:

“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.”

The School fo Health and Social Care would like to take this opportunity to thank Becki Meakin, Eamon Andrews, Peter Beresford and Shaping Our Lives for sharing their many years of experience with us to enhance the range and quality of involvement across the school. We hope to continue to work with Shaping Our Lives and other user led organisations in the future.

A journey of discovery through collaborative working

In 2016, whilst undertaking my Master’s studies, I was offered a fantastic opportunity to extend my recent involvement of working with a local registered stroke charity.  In January 2017, the Stroke Research Group was formed and included; stroke survivors, their carers, a local occupational therapist, charity representative and academic occupational therapists.

The focus of this group was the next phase in a collaborative scoping project proposed by Tendring Specialist Stroke Service and the School of Health and Social Care, University of Essex. This scoping review aimed to explore relevant literature and current practice for younger adult community stroke provision.  Over the ten planned monthly meetings we worked together to review relevant literature, shared knowledge, experiences of stroke and local service provision. Wenger et al (2002) suggests the group offered a community of practice; bringing together specific knowledge, experiences and interests towards a shared understanding of local needs of younger stroke survivors.

As an academic occupational therapist and masters’ student with experience of working with survivors and families, I was invited to facilitate the meetings, including source relevant articles to discuss.  This was an opportunity to enhance my own research skills and professional knowledge, whilst working collaboratively with group members.  From the first meeting, the dedication, commitment and valuable unique experiences of each member was clearly evident.  A sense of responsibility for ensuring the group meetings took place as planned and ran smoothly with opportunities for all to participate, was at times overwhelming.  However, the engagement and encouragement within the group was invaluable to the ongoing sustainability of meetings.

Each meeting took place in a local, accessible venue for approximately 1.5 hours a month with refreshments funded by the charity.  Prior to each meeting, a clear structure with an agreed agenda and access to articles/literature between meetings was needed due to the limited time frame.  Opportunities for sharing local knowledge, resources, articles and invited guests were also discussed.  Records of meetings were maintained to capture discussions from reviewing the literature in relation to local needs including any shared resources and identified next steps.  These were circulated to members with accessible links to literature for review and agreed, which informed the report findings.

All members engaged in reading the information provided, shared their views in relation to local knowledge and own experiences of stroke.  Although there were some changes to attendance from the second meeting, seven members remained consistent throughout. As the meetings progressed we continued to collate an ongoing list of shared resources and discussed how we could share this with the stroke community.

During the last meeting we continued to add to the resource list and worked together with an attempt to map local stroke pathways from hospital to community including longer-term needs.   We applied an underground tube mapping principle suggested by one experienced group member, but soon realised stroke pathways were complex process due to individuals’ unique experiences.  Members brought a range of practical resources to this session; paper, string, post it notes, card, scissors.  Findings were discussed and were related to known resources with active engagement from all.

As the group came to an end, it was agreed we would share the findings in writing initially and arrange a further meeting at a later stage to discuss any next steps.  Members were keen to remain in contact.  Approximately, six months later a follow-up meeting was arranged within 3 days of undertaking a doodle poll and involved all group members.  This demonstrates the dedicated commitment of the group towards their involvement and sharing our findings.

While awaiting this meeting, I started writing our journey of the experience in an accessible report style. This drew upon our findings and was shared with group members to review, with ongoing feedback to achieve the final report.  In June 2018, I discussed the work undertaken by the group with a visiting lecturer from Canada.  Professor Mary Egan was impressed with the collaborative approach to this work and kindly wrote a preface supporting our work.  The final report has now been approved in collaboration with the stroke research group, Tendring Specialist Stroke Service and the School of Health and Social Care.  This is now available with the compiled shared resource list via Tendring Specialist Stroke Services website: http://tendringstroke.org.uk/essex-university-and-tsss-research.

Earlier this year, Tendring Specialist Stroke Services have taken forward the findings from the stroke research group organised a free half day conference in association with the School of Health and Social Care.  This took place on 16th April 2019 with a number of speakers and delegates who shared an interest in reshaping community stroke rehabilitation services for survivors.

About the author: Nikki Williamson is a Lecturer in Occupational Therapy in the School of Health and Social Care. Email: nwill@essex.ac.uk for more information about this topic.

Reference:  Wenger E, McDermott R and Synder W (2002) Cultivating communities of practice: A guide to managing knowledge Harvard Business Review Press

Welcome to the Involvement Matters Blog

This is the University of Essex’s first ever service user, carer and volunteer involvement blog. We will be using this blog to keep staff, students, volunteers and the wider public up to date on involvement work across the School of Health and Social Care. Following our collaboration with the disabled people’s organisation Shaping Our Lives , service user and carer involvement in the School was relaunched in November 2018. We started by organising and running the University’s first  Involvement Matters Event. The conference was a huge success and gave current members a chance to showcase the work they have been doing, while enabling us to recruit new members.

A short film showcasing four digital stories was played at the event. These stories were developed as part of the Digital Storytelling Project being run by the School of Health and Social Care in collaboration with the University’s Technology-Enhanced Learning Team.

The blog will updated every few weeks and will consist of staff, students and volunteers from both the Southend and Colchester campuses discussing various involvement activities including:

  • Teaching sessions;
  • Service user involvement in student interviews;
  • Curriculum development;
  • Research activity;
  • Any School activity where members of the public are involved.

We hope that the blog content will be informative, educational and entertaining. It is a sign that the involvement of service users, carers and volunteers is growing across the school and is a top priority for staff and students alike. We know that when it comes to improving the quality of health and social care education that involvement really does matter!

So please subscribe to the blog in order to get regular email updates when new content is posted. We hope to build up a regular audience both inside and outside the University. Also, feel free to get in touch with comments on blog posts or with suggestions for future articles—we want you to get involved too!

We wanted to finish our first blog with some material from the Involvement Matters Event. Suzi, one of our new members, kindly wrote us a poem that she delivered at the end of the day. It is about the importance of having a voice. We feel it is a stirring endorsement of why people engaging in health and social care is an important thing, both for the students and for themselves.

Today I ask you to join me
In a celebration of hope and truth
For healing and acceptance
Of someone’s distressing youth

We celebrate the opportunity
To challenge the spoken word
It does not mean it’s true
Just because it’s heard

We celebrate the joy of achievements
Though to others they are small
We celebrate those moments
Of feeling safe and standing tall

Of challenging deep seated beliefs
With patience and exploration
With the lesser feelings
Of hopelessness and isolation

We celebrate the teachers
Who have reached out their hand
To offer inspiration, hope and clarity
To heal and understand

Today I can truly celebrate
The beginning…
Of my freedom of speech
Anything is possible
Nothing is out of reach

Today I embrace opportunities
That once I would have feared
Because I am worthy, I am able
I deserved to be revered

I believe in the gift of safety
That these support groups can bring
To know you are not alone
As you search within

My mind is so much clearer now
As I end the speaking of my truth
I am no longer a victim
Of the traumas of my youth

I am hope, I am truth,
I am love, I am free
I am all the things I needed
And ever wanted to be

But I was them all along
I just never believed it to be true
Believe in who you are
There is no one better than you

Thank you for reading our first blog post. Expect another one soon.

Dr Danny Taggart
Service User and Carer Involvement Lead