Debra Baxter, a very passionate patient-advocate shares with us her experience of working with Health Innovation Manchester to develop a patient information leaflet for people living with chronic pain.

My name is Debra Baxter, I was born in 1965 and diagnosed at 18 months old with cerebral palsy as the result of a prolapsed cord at birth. I have spent the last 40 years either employed or doing some form of voluntary work. My life has had many challenges especially as I have grown older and the chronic pain I endure has increased.

My involvement with volunteering work led me to be asked to join the Health Innovation Manchester (HInM) team as a patient representative. My first project, along with other members of the team was to co-design a patient information leaflet to support people living with chronic pain.

My pain has increased as I have got older, to help me manage this I have developed coping strategies rather than take large volumes of medications so I felt like I could add real value to this project.

My condition means that my gag reflexes are very uncontrollable, and this results in not being able to swallow medication. This is also the result of being forced to take medication as a child and therefore any type of medication liquid or solid is a challenge for me psychologically and with the increasing pain, taking large doses of painkillers is not a good idea for long term effects because your body gets used to the pain medication and therefore becomes immune.

Working with an established team can feel daunting at first as everyone knows everyone else and for the first session, I did feel a bit uncomfortable.  Although, I really didn’t need to as the HInM project team made me feel very welcome and valued my thoughts and lived experience.

The patient information leaflet took us some time to develop and progress because of our differing views on how the leaflet should be presented and what should/shouldn’t be included.

The one thing I was very impressed with was that everyone’s voices were heard, all our views were taken into consideration as we worked collaboratively to agree on how the leaflet should be designed. As an active equality trainer and consultant, I wholeheartedly welcomed this procedure because it is something that is very close to my heart.

When consultation is sought it is very important that everyone’s views are recognised, and everyone is made to feel that their views are valued.  The HInM team did that and I couldn’t have been prouder of not only the leaflet we collaboratively designed but the way it was developed in an equal and respectful way to include everyone which is what is missing in society and I wish this ethos could be taken more seriously amongst professionals everywhere.

Everyone has a gift to give no matter how small, but it is how we value those gifts that brings the human spirit together as one.

You can see the patient information leaflet located in patient resources that Debra co-designed and a case study about the experience-based co-design approach here: Greater Manchester Pain Management Resources Hub