Experts by Experience

What motivated you to become a Co-production Champion for Cambridge Children’s Hospital?

I feel passionately about co-Production. Our family life changed completely after my 11-year-old child was hit by a bus on their first day of secondary school. From the moment the paramedic arrived to the present day, almost ten years later, our entire family has needed support, from hospital to community care. My child suffered a severe traumatic injury which has required years of rehabilitation which had a significant impact on their quality of life and the collective health of my family. We learned early on that an equal partnership between our whole family and the professionals we worked with over the years is an essential component to recovery. When it works well, the child and their family stand a chance at a favourable outcome. When it doesn't work well, it puts the child and their family at risk of further, seemingly insurmountable challenges. I became a Co-Production Champion to be a voice for families and advocate for an improved care pathway in the hope that I might lend expertise by experience.

Why do you think co-production is important for the Cambridge Children's Hospital project?

The Cambridge Children’s Hospital needs children, parents and carers to fill in the gaps. Only they can highlight what works and what doesn’t because they never get to go home and brush it off. They live between appointments and take on the full-time work throughout the day and night. They are the ones that can tell you the difference between excellent and sub-standard care because they feel the ripple effect and deal with the positive and negative consequences. They are the ones who see and live with the final outcome.

What's it like being a part of the Cambridge Children's Hospital team?

Our team of Co-Production Champions have a rich, varied and solid knowledge base with unique expertise collected by each over years. That’s a great deal of collective experience in one room, including clinical and community care, mental and physical health, system integration, sibling impact, co-ordination challenges in health and social care, educational health care plans, long-term impact and carer burnout. If the Cambridge Children's Hospital project is to succeed in their plan for integrated care, they need this team. We have passion, conviction and are uniquely qualified to contribute significant and valuable knowledge. Our shared goal is to ensure that every child and family coming through the hospital is given the best chance at the best outcome.

As someone who's been involved in co-production on a number of different projects within the NHS, when do you think it works well?

When co-Production works well, every voice around the table is heard, respected and valued. Each team member contributes from their unique perspective to give a complete picture so that positive and meaningful change can happen. When it goes badly, in my experience, it’s because hierarchy emerges and expertise is given a rating. People are ignored, belittled, and left out of the conversation or the meetings entirely. There’s nothing worse than seeing your years of experience used as a tick-box exercise, with the full knowledge that you will go back to your unpaid caring role immediately after a meeting having not been heard while others who ignored you at the table have pay, power and a moment to pause.

As a Co-production Champion, what has been your key learning?

I have found the most value in my co-production role when I have managed to find common ground on a point of difficulty. When a member of staff allows their job title to fall away and the person behind it listens, these are the moments that mean so much to me. We are then able to connect and transform a point of contention into a common goal – even if it’s something small like an extra chair in the room so parent’s don’t have to take floor shifts during lengthy waits. If we can change minds on some of the little things that seem unimportant, the possibility that we can contribute to the high-impact decisions remains within reach. It is difficult to reconcile that there will always be some who see us as ‘just a parent’, so I continue to hope for change on that score.

What are your three wishes for the new Cambridge Children’s Hospital?

• Integrated physical and mental healthcare in hospital and beyond. So frequently, children are bounced between physical and mental health services with the consequence being no support at all which puts an enormous strain on both child and carer. This leads to more hospital admissions, longer stays, and intervention at crisis point only. I want to see physical and mental wellbeing and recovery treated together.
• Supporting the whole family throughout their child’s stay which includes signposting the right support for the carers and any other children. Life changes suddenly and in more ways than I can count when your child gets injured or sick. So often, families have no idea how to take on a role as a carer, let alone coordinate that care, apply for support, find the right service at the right time, seek support for themselves when they need it. Most don’t know what their rights are and are too busy managing everything, including their own grief, to find out. I want to see a significant change in that.
• Teamwork. I can’t understate the value of a multidisciplinary approach to care with communication, candour and trust between all members of the team that are working with a child. Parents and children should be considered as an integral part of the team. Carers find themselves repeating information, chasing people and duplicating emails to keep the lines of communication whilst simultaneously being left out of the loop, despite their own critical role in recovery. This needs to change. I hope my role as a Co-production Champion will influence this.

If you would like to join Cambridge Children's Network (opens in a new tab) and find out about co-production opportunities, we would be delighted to welcome you.