Derek and Dot Bell
Senior Nurse and Lecturer from Solent wanted Patient Public Involvement for a study on ‘Enteral tube feeding’ for her NIHR research application. Contact had already been made with the national PINNT Group (a support/information group for people receiving artificial nutrition). The PPI Facilitator contacted the local branch of PINNT in Southampton and they agreed to send two representatives along to a PPI meeting with the researcher and the PPI Facilitator to explain about the research, get their thoughts, views and input into the proposal. Their experiences and preferences with care in hospital and at home were discussed, and as a result of this meeting the researcher was able to amend her research design following this valuable feedback from the group's lay representative. The National and Local Groups agreed to provide input and support throughout the project.
Held in April 2013 – and hosted by Solent NHS Trust in partnership with Research Design Service. This was attended by five research therapist staff from Solent and six lay people which included two carers and people with long-term health conditions. Some of the feedback is shown below:-
I feel I need to thank you for yesterday’s workshop. It was a fantastic day which I found very interesting and thoroughly enjoyed. The group were a great mix of people and the facilitator Jim was excellent. I felt his running of the workshop couldn’t have been any better presented to have got the best out of the group. Thank you so very much for organising this Francesca, I’d be up for another if you plan again in the future.
Many thanks for organising the course yesterday. I went into it with very few expectations and feel like I came away with a lot of enthusiasm and knowledge of PPI. I thought that the trainer did a really good job, and think that if you ran the same course again with a slightly different group the whole day would be very different. I also LOVED the fact that it wasn’t 'Death by Power Point'!
I really enjoyed the course and found it useful. Thank you for inviting me.
Congratulations on organising such a great event. You ended up with a well-balanced group and I think everyone really entered into the spirit of the day and got a lot out of it.
We wanted to make this ‘relevant’ to patients and ‘local’. The PPI facilitator visited the Solent NHS Trust Sexual Health Clinic by arrangement and stayed two hours in the clinic talking to patients about research by introducing research to them with a ‘research quiz’ using themes of healthcare such as diabetes, alcohol, children’s research. In the afternoon the PPI facilitator visited the GP practice in Adelaide Health Centre and spoke to patients, including children who enjoyed doing the quiz and asked questions!
Chantel Ostler, our research physiotherapist has recently worked with a team of researchers (led by Dr Claire Ballinger) to submit a grant application to the NIHR to carry out a feasibility trial looking at a falls prevention intervention for patients with learning disabilities. They have involved a service user throughout the development of this application. In addition, a carer of people with Learning Disabilities (LD) has also contributed to the research design and commented particularly on the practicalities of carrying out qualitative research with people who have LD.
The involvement of these two people has influenced the research in the following ways:
PPI facilitator met with researchers to talk about recruitment to the study. She suggested social stories to give children information before they visit hospital to take part with pictures of each stage, i.e. having blood pressure done, being measured, weighed, playroom in clinic etc. She advised on identifying support groups in the region and supported the research nurse to visit a Southampton support group to give information about study. This was so successful recruitment in the first week of opening the trial was at 10% of target.
This session was hosted by the PPI Faciliator with mixed tables of lay members and staff. Each table worked on a PPI case study and gave feedback during this interactive session.