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The RESPOND Programme logo
Funded by NIHR logo

By Clare Hoppe

Clare is a Patient Representative from Bowel Research UK. She participated in the co-designing of interventions for the RESPOND programme.

When you spend a lot of time in hospital as a patient you realise how amazing the NHS is.  You meet many wonderful health care professionals and support staff who not only deliver a fantastic service but also help to get you back on your feet again so you can get on with living your life outside of hospital.  However you are also well placed to observe and indeed experience difficult and challenging times. These can be caused by a plethora of reasons but they can include poor communication either between different departments or between the professional and the patient.

As in any organisation the need for policies and procedures to be reviewed and updated regularly is paramount for the NHS to keep on improving and providing an excellent service. This is not purely in a medical sense but also in terms of understanding the patient’s lived experience of time spent in hospital so that it can be made better.  

This is where a project such as RESPOND really comes into its own.  Many patients with long term health issues fight with a sense of loss of control of both their bodies and the way they have to live their lives.  This can include time spent in hospital too.  So having the opportunity to work on projects such as RESPOND is a fantastic and positive way of taking back some of that control.  It can help improve not only other patients lived experience in hospital but the very service they are accessing.  This is a huge motivating factor for patients becoming involved in this type of project.

What is fantastic about working on the RESPOND project as a patient is that there is ample space given to each individual to feed back personal experience of their stays in hospital.  Everyone has an individual experience but it is also evident through the open and transparent discussion that there are many commonalities and these can only be highlighted by these types of projects.  It is enormously gratifying to feel that others can empathise with you and also to know that healthcare professionals are listening, learning and most importantly striving to improve services in the future.

The project has been set up to include and learn from patient’s lived experience of hospital stays at every step of the process.  So after initial discussions on a multitude of communication issues both within the organisation itself and between the professional and the patient , the RESPOND team took time to reflect and learn from the patients experiences.  They then approached the patients again to share what improvements they were looking to implement to help improve the service for the patients. The patients in turn could feed back how they felt these changes would improve theirs and others experience in hospital and this was a fantastic way to work. 

Personally this was one of the most rewarding projects I’ve had the pleasure to be involved with. I found the conversation and movement towards improving the patients experiences in hospital exciting and forward thinking.  I feel very positively about the RESPOND project and appreciate all they are doing to improve services.