Children’s healthcare outcomes are often poor, and health care services can be confusing and frustrating for families. Patient and public involvement (PPI) is key to improving care, however it can be tokenistic. The Children and Young People’s Health Partnership (CYPHP) with local children and young people (CYP), parents, service providers and commissioners created a model of care to improve healthcare for CYP. In line with the NHS 5-Year Forward View, CYPHP uses the best available evidence and involves children, young people and parents. The aim is to improve health, as per the United Nations Convention on the Rights of the Child.
How have we included PPI in our work?
CYPHP developed and established an Involved Parents Group (IPG) to ensure that PPI is firmly and meaningfully embedded throughout the program. Parents were recruited to work alongside CYPHP clinical and evaluation specialists. The IPG:
- provide rapid and tailored input and feedback to design and delivery of CYPHP services;
- consolidate and disseminate feedback from other CYP involvement groups; and
- propose and explain CYP-led decisions to the CYPHP Programme Board.
This process continues to help the CYP and family voice to be heard throughout CYPHP’s work, and shapes the service to be meaningfully responsive to family’s needs.
What has the IPG contributed to so far?
Through the incorporation of IPG representatives in all our governance structures, evaluation and clinical processes, and by promoting public accountability, the IPG has successfully ensured key stakeholder involvement and meaningful involvement of parents, children, and young people in the CYPHP programme.
Using a doll’s house that mirrors the CYPHP model of care, CYP were asked to describe their patient journey and suggested ways to improve it. This information was fed back to our clinical teams, to inform the patient pathway.
Furthermore, CYP and parental feedback optimised the CYPHP Health Check, a bio-psychosocial screen, weighting the tool validity against the closest possible fit with patient perspectives. By working with our parents, responses have been very positive.
One parent said “This would be really useful for parents whose children have just been diagnosed with asthma.”
Another parent stated that “The General Wellbeing section is really useful and reassuring.”
We also found that 70% of family members said that they would recommend the Health Support Packs to a friend.
Additionally, the IPG has guided interview protocols and development for the CYPHP evaluation.
What the IPG mean to CYPHP and others?
The IPG is a novel means of ensuring that the CYPHP programme is relevant to the needs of the local population. The IPG ensures the patient voice is embedded at all stages of design, delivery, planning and commissioning services to achieve more effective healthcare. The IPG has highlighted the value of collaboration between families and healthcare providers and commissioners. By embedding the IPG in governance, the CYPHP programme ensures active meaningful collaboration towards improving child health outcomes.