The Collaboration for Leadership in Applied Health Research and Care Northwest London (NIHR CLAHRC NWL) awarded the inaugural Brian Turley Award for Patient and Carer Involvement to the PREPARE team from Imperial College Healthcare NHS Trust.
The award, named in memory of Brian Turley, a dedicated and committed patient advocate and disability rights campaigner, is given to teams or fellows funded by NIHR CLAHRC NWL who have designed and delivered programmes involving patients and carers. The judging panel were looking for activities that have been designed and delivered with the input of patients and carers from an early stage, attempted to involve and engage people who are less likely to be heard from such as children or those with learning difficulties, and included reflection and a desire to improve the process for patients and carers.
Based at St Mary’s Hospital in Paddington, the PREPARE team, who were announced as the recipients at NIHR CLAHRC NWL’s Spring Collaborative Learning Event, is a programme for patients undergoing oesophago-gastric surgery that aims to improve their surgical outcomes by improving their physical and mental well-being prior to and after their surgery. Each patient receives a personalised programme to match their individual needs, abilities and goals.
The programme provides coaching and tailored support in the areas of:
- Physical fitness
- Respiratory exercises
- Eating well
- Psychological wellbeing
- Asking about medications
- Removing bad habits
- Enhancing recovery
Patients are involved at a strategic level in the development of the PREPARE programme, working with the clinical team to co-design the structure and goals through formal workshops and informal interactions. An example of meaningful outcomes from patient involvement include the creation of a training clinic 1-2 weeks prior to surgery to teach patients and their carers on home jejunostomy feeds. This replaced post-surgery in-hospital training which patients described as too intimidating and did not involve carers.
Patients’ views have also contributed plans to develop a PREPARE centre where the whole programme can be delivered and patients can benefit from peer-to-peer support.
On announcing the award winners the judges said: “This is a superb example of integrated, meaningful, well planned patient involvement which is central to the project. While PPI is often an added afterthought to projects, collaboration with patients is at the
heart of PREPARE” As the winners of the award, the PREPARE team worked with graphic
illustrator Sandra Howgate to transform their written nomination into a visual image which will be printed into 3 A3 posters and 500 A5 postcards to share their experience and encourage others to work with patients. The final image demonstrates the value of bringing together ideas and knowledge from different perspectives.