Patients in focus awards 2010

By Dr Kathryn Bailey, on behalf of the West Midlands Paediatric and Adolescent Rheumatology Network, George Eliot Hospital, Nuneaton

Dr Kathryn BaileyPaediatric and Adolescent Rheumatology services are well recognised to be very variable, with inequity in the provision and the standard of care. In the West Midlands we have developed a Clinical Network to address these differences and work towards the provision of high standard and equitable services, which are accessible to all patients and their families irrespective of their locality.

The network has been established since 2004. It developed as part of a General Paediatric Network called 'Partners in Paediatrics'. The executive committee consists of clinicians providing paediatric rheumatology services both in the tertiary and district general hospital setting. The members are multidisciplinary including representation from medical, nursing, physiotherapy and occupational therapy. We recognise the importance of user representation, and have a parent sitting on the committee.

Steering groupOur objectives are to recognise and describe the inequities that exist in provision of paediatric rheumatology services across the network area; to generate standards of care, clinical guidelines and pathways to address these inequalities; promote and provide opportunities for all professionals to engage in Continuous Professional Development (CPD) whether providing services for children with rheumatic diseases or in other specialties where children may make their first presentation, and develop an effective method for peer review to ensure continued competence of services.

In order to ensure that our objectives reflect the concerns and needs of users of paediatric rheumatology services in the west midlands we have endeavoured to understand their views. This has been done in a number of ways:

Soon after the network was established a review of services by means of an outpatient questionnaire demonstrated that most patients were happy with the service they received but felt waiting times were long, services were often fragmented and the expertise from a multidisciplinary team varied enormously.

Education dayAn education day for parents was initiated in January 2007 and has become an annual event since. A varied programme is delivered primarily for parents of young people with Juvenile Idiopathic Arthritis (JIA) in the West Midlands. This is held on a Saturday at locations rotating around the West Midlands. The day is divided into three areas. The first part of the day is focused on those where JIA is a relatively new diagnosis, reviewing diagnostic criteria, treatment and approaches to therapy from a multidisciplinary team. There are then clinical updates and specific topics addressed; these often reflect the feedback from parent requests at previous meetings. Examples of topics discussed include issues in adolescence and the perspective of an adult rheumatologist for patients who have moved on to adult services. A further significant part of the day includes workshops where parents have an opportunity to share and express their views about the service they have received – what went well, what is particularly important to them and what could/should have been done better. We have endeavoured to address these views with activity in the network. We have tried to include young people at some of these meetings, arranging separate activities for them, with variable success. It is difficult to address the very different needs of young people to that of their parents in the same session. For the future, we are planning to work with Arthritis Care to support their involvement in developing group activities for young people, to address their needs in a more effective manner.

Parents from these groups have supported and reviewed documents such as the BSPAR (British Society of Paediatric and Adolescent Rheumatology) and ARMA Standards of Care for Juvenile Idiopathic Arthritis, both at the parents’ day and by email to those families volunteering their support. The development of these standards has been supported and adopted by the West Midlands Network.

We endeavour to consult users on activities and plans for service development wherever possible, and ensure user representation at committee meetings.

Photo of the teamThe theme for one specific piece of work evolved from one of the group workshops at a parents’ day. The point for discussion in the workshop had been to explore how Networks could address their needs. It became clear to families that there were discrepancies in provision of care and that the way services are commissioned made it difficult to eliminate these differences. Parents felt strongly that they would like to express their views to commissioners, to help those who decide where the money is spent to understand why expert, accessible multiprofessional services are so important. It was clear that it would not be easy for a group of parents to do this in person. At the meeting we had shown a DVD produced by young people talking about transition to adult services. From this the idea evolved to produce a DVD representing the views of families that could support any projects to develop services and raise awareness. The views expressed would be representative and succinct in a format that was brief and could be used in many forums, not only for commissioners but also other health care professionals such as those working in General Practice and Emergency Departments, and endeavour to raise awareness and reduce delay in diagnosis. This was recognised by all present to be a useful and worthwhile piece of work to take forward.

At Birmingham Children’s Hospital there is a group called the 'ART' group which works in many areas to involve children, young people and families in the provision of services. They were able to facilitate the work to produce a DVD for families of children with JIA. Money had been put forward by a number of Primary Care Trusts (PCTs) to support the involvement of users in the development of networked services for paediatric rheumatology. We felt this was a very worthy use of these funds. Families who had been at this and previous parents’ days were invited to participate. Flyers inviting families were provided to those attending any of the clinics in the network region. Initially the parents, and any young people who also wished to get involved, were invited to an informal meeting to discuss the project with representatives from the ART group. The objective at this meeting was to understand what the parents wanted to achieve and express in the DVD. A film producer was chosen who then worked with parents, young people and the ART group to produce a DVD which represented their views about access and provision of services for children and young people with JIA. We recognise that it is easy for professionals to influence the views of families when developing services, and that families have experienced life changing events – the focus of this DVD was therefore to ensure that families had the opportunity to represent these views in an impartial environment without clinicians exerting their influence! After the DVD was drafted some additional comments were added by a clinician and commissioner to add perspective to the message. 

Since the DVD has been produced it has been shown at a subsequent parents’ day, to empower other families to get involved, it has been used in a presentation outlining the ARMA standards of care for JIA at the National Council for Child health and Well Being, to support the need for the development of paediatric rheumatology networks and services at a national level. It has been shown at educational events for both the local network and doctors in training. The DVD will be used to support future local business plans and we aim for it to be available to other clinical teams nationwide through BSPAR to support service development.

The strength of families’ views about the care of their children cannot be underestimated. This together with the development of Standards of Care for JIA, both from BSPAR and the soon to be launched ARMA standards, outlining what all families should be able to expect from services, will be a powerful tool to support change. 

Application written on behalf of contributors to the DVD: 

Katharine, Megan and Eleanor Venter
Andrew and April Willis
Wendy, Ian and Katie Armstrong
Julia and Jack Huxham
David, Louis, James and Emma Haston
Steve, Anna, Jack, Joe and Katy Tudor
Tracey Malkin
Kathy Bailey on behalf of the West Midlands Paediatric and Adolescent Rheumatology Network
Anoushka Duroe and Janet Hetherington, ART Group, Birmingham Children’s Hospital
Andy Jones, film producer