Investing in Children is improving children and young people’s services by involving young people in care delivery. Felicity Shenton explains

Investing in Children is an organisation based in the north east of England with a specific remit to ensure that children, young people and their families are involved in decision making within public services.

The project was created in 1995 as a partnership between Durham County Council and the NHS. Although based in County Durham, Investing in Children has worked with partners across the UK.

In 2004 the Investing in Children Development Agency was established. It carries out commissioned work across England, as well as having contracts in Wales and Northern Ireland.

For the past 15 years, Investing in Children has been working alongside children and young people, and the adults who provide services to them, to create a range of ways to enable them to exercise their right to have a say, often resulting in improvements in the services themselves.

User reviews

This includes decisions about their treatment and care within health services. Young people have also been involved in staff recruitment and training and in reviewing some health services.

The programme’s work encompasses hospitals, including Alder Hey Children’s Hospital, the Royal Victoria Infirmary in Newcastle, University Hospital of North Durham, and GP practices, sexual health, diabetic and child and adolescent mental health services.

Investing in Children has also supported other accreditation processes, such as the implementation of the Department of Health’s “You’re Welcome” process, which ensures that health services are young people friendly.

One of the approaches developed is the “agenda day”. The idea is to give the opportunity to large groups of children and young people to meet in adult-free environments to express their views. The events are facilitated by young people and allow them to give their views without adults influencing what is asked and what is said.

Agenda days have been organised for a whole range of issues and topics. Young people discuss their ideas and then the young facilitators write up a report and make recommendations about what they think should happen next. This creates an agenda for action which is then taken to the adults to work on jointly with young people.

Children and young people are involved in carrying out research on a particular issue, agreeing a plan of action that needs to be taken forward with clinicians, planners and managers and then agreeing what will happen next.

The process of dialogue relies on there being adults within the service who are willing to listen and to respect young people’s opinions and to accept they have something valuable to say.

Where there is clear evidence that children and young people’s views are having an impact on services, there is a process of accreditation that recognises and celebrates good practice. The Investing in Children membership scheme is an annual award given to organisations and services where children can provide evidence that tangible changes have come about as a direct result of their involvement. The award is made annually and by the end of 2010 there were 396 services across the UK who had achieved Investing in Children membership status.

Case Study: diabetes

Since 2003 young people with diabetes in County Durham and Darlington have been working alongside the paediatrician and the nurse specialist to improve the services that they receive.

Young people held agenda days to identify the issues and worked with medical staff to implement the changes. They now have a fully funded insulin pump service for children and young people provided by The Diabetes Service at County Durham and Darlington Foundation Trust. County Durham primary care trust is now the UK’s biggest issuer of pumps.

Young people have produced a DVD, Connecting with U, which raises the issues for a wider audience and have produced a toolkit for teachers and support staff to help with the management of the condition in their schools, which was an area identified by the young people as needing improvement.

There is a quarterly newsletter for young people. Age-banded clinics mean young people can meet others of a similar age, and young people can now keep their own information files so that they can take control of things that they consider are relevant to their own diabetes care. Text reminders are also sent to young people for clinic appointments.

Case Study: oncology

A number of changes in the oncology unit at Alder Hey Children’s Hospital in Liverpool have come about as a direct result of the work done with young people on the unit supported by the unit manager and the Investing in Children project worker based at the hospital.

During agenda day sessions one issue raised was food on the ward. Young people had requested a tuck shop but this was not feasible. Instead the unit manager had two vending machines installed on the unit. While they are aware of the need for healthy eating this is also balanced with the need to encourage the children to eat food with extra calories.

New chefs have been brought in so young people can have their food cooked to order and parents can order food from the chef so that families can eat together, an important development for children and their families.

There is now a children and young people’s forum at Alder Hey, which is a platform for young patients to be involved in decision-making across the hospital.

Case Study: GPs and sexual health studies

A number of GP practices and young people’s clinics have been awarded Investing in Children membership status.

They are also working closely with us to achieve their You’re Welcome status, which recognises services that are young people friendly.

The work children and young people have undertaken has resulted in improvements to the following:

  • publicity about young people’s services (clinic times, leaflets, posters, website etc);
  • patient confidentiality - the creation of a confidentiality leaflet, posters in consulting rooms and waiting rooms;
  • website development - creating a facility for feedback from young people, a profile of the doctors and nurses that young people will meet at the practice/clinic;
  • a suggestion box in the waiting room for comments.

Case Study: paediatric cystic fibrosis

Changes to appointment times for the paediatric cystic fibrosis clinic at County Durham and Darlington Foundation Trust have improved attendance rates. Appointment times are much more flexible now and are at different times during the day and the evening as young people felt they were too restrictive before and many young people did not want to miss school.

Staff have also responded by trying to improve waiting times, particularly if young people have to see more than one person at the clinic, and also the waiting room’s look and feel. Young people are now offered refreshments when they visit and there are more age-appropriate toys and books available to make their visits less boring.

The team is now looking at introducing cough plates instead of cough swabs, which many of the children dislike and find uncomfortable.