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Being me again – life after brain injury

Co-producers ( service users ) Gillian Wilson, Lauren Vandall, Marieanne Morton who took part in the project.

This project looked at designing a new innovation to the Community Brain Injury Team where individuals who were further on the recovery journey would co-produce and co-deliver a course on this topic – “Being me again – life after Brain Injury ”. Service users were involved in the development, implementation and the evaluation of this project. Focus groups were held to explore common issues and themes following brain injury. A course programme was designed incorporating these and then delivered. Evaluation showed positive feedback from co-producers, service users and staff.

PPI helped the project to

  • Improve efficiency of a service;
  • Improve quality;
  • Increase ownership.

Background

“I just want to be me again” is a common comment from those recovering from a brain injury. Research shows that hearing stories told by those who have been on this journey and what has worked for them can help build self-efficacy and give hope for the future and support self-management (Bandura 1996). Co-production and co-delivery with service users has been evidenced and widely used in Mental Health with the Recovery College but has not been used with this client group. This is an innovation in service delivery and was supported by the South Eastern HSC Trust Recovery College.

Aim of involvement

The project aimed to involve service users affected by brain injury in developing a course about recovery after a brain injury and to deliver this co-produced course through the Recovery College to other service users and staff throughout the Trust.

Method(s) of Involvement

Challenges

1. It was a challenge for therapists to let the service users take the lead and develop the course into what they, rather than the professional, thought was important.
2. The complexity of brain injury includes cognitive, emotional, communication difficulties which influenced how the course was delivered.

Outcomes due to involvement

Evaluation of this project showed improved quality to the service.
1. Questionnaire responses showed the course to have improved individuals’ ability to cope and manage their own wellbeing and feel more confident about life after brain injury;
2. Staff attending the course reported being more aware of the issues an individual may experience and how this may be of use in their professional role;
3. Qualitative feedback from the co-producers highlighted benefits for them presenting their stories and recognising how far they had come;
4. The course has now been programmed regularly into the Recovery College prospectus using other service users in the co-production of it.

Feedback/quotes from service users/carers involved

“The personal stories have given me hope. Hope is key, along with determination and support from family and friends.”
“This course has inspired me, hearing other people’s stories and determination. This has been the kick start I needed. The only person that can get you there is yourself.”
“Though I am in the early stages of recovery, it was good to come and hear other stories from people going through what I am feeling. I’m not alone.”
“It has finally sunk in that I had a brain injury, in a positive way. So even though there are a few things I’m not too great at, just remembering the doctors expectations that first month that my mum had told me again made me thankful. I have surpassed each and every one of them.”

Timeframe

Current.

Further Information

For further information, contact:
Romayne Orr, Clinical Specialist Occupational Therapist (South Eastern Health and Social Care Trust)
Email: romayne.orr@setrust.hscni.net
Tel: 07525897317