Rheum for Improvement Parents Day  (Full report from day)

On the 27th January, a Parents’ Education Day was held at BCH.   The day was jointly organised by members of the Paediatric & Adolescent Rheumatology Network Group (Network Group) and PiP.

Parents of children and young people with Juvenile Idiopathic Arthritis (JIA) were invited to this event, which aimed to:  

• inform parents and carers about aspects of JIA  - the diagnosis, treatments available and recent advances in treatment  - and share ideas to support the issues around young people growing up with arthritis;
• explain the work that the Network Group is undertaking, and
• provide parents and carers with the opportunity to talk about their experiences and concerns, and involve them in developing services in the future.

The day was well supported, with 30 parents and carers attending from across the West Midlands. 

During the course of the day, a number of presentations were given:

Kathy Bailey, Consultant Paediatric Rheumatologist, explored the possible causes of JIA and explained how a diagnosis is made.  She described the various drug treatments available and the different classifications of JIA.  She highlighted the important roles that each member of the multi-disciplinary team plays – the clinical nurse specialist, the occupational therapist and the physiotherapist.

As many parents testify, the various types of medication that are available can be confusing.  Nicky Freeman & Pam Whitworth, clinical nurse specialists, described the ‘Cascade of Treatments’ available and clarified many of the confusing areas.

Clive Ryder, Consultant Paediatric Rheumatologist, explained how knowledge about why children get arthritis and the way the immune system works, influences the development of new treatments.  He described the new treatments that are being used in ‘difficult to treat’ arthritis and mentioned some of the research that is currently taking place at BCH. 

During the presentation given by Janine Hackett (Occupational Therapist) and Bernie Johnson (Physiotherapist), parents were encouraged to consider the stages of development that children & young people go through and what can and cannot be done – legally – at different ages!  They explained the issues that most young people face as they move through the transitional stage from childhood to adolescence, highlighting the additional problems that young people with JIA often face.  We were reminded that the young person with an illness is a teenager first and foremost and that their ‘condition’ is second to that.

Ruth Upton, a parent of a child with JIA, gave a personal account of how difficult it can be, as a parent, to see your child in pain.  One of the most important messages Ruth gave during her presentation was that each child is unique and each family’s perspective is important.  Families will have different priorities and these priorities will change as the child gets older and their needs change.

Karen Davies, Consultant in General Paediatrics and Paediatric Rheumatology, described the work of the Network Group since it was first established.  She explained that the Group are keen to have ongoing involvement of parents and families – in order to share information and to incorporate parents’ views on the shape of services provided in the future.

The parents’ participation in discussion groups was extremely useful and many important factors were raised.  One of the most important was delay in diagnosis, and concern about the lack of knowledge and ability to recognise JIA by other medial specialties.   This often led to prolonged symptoms prior to diagnosis, resulting in potential damage to joints, and unnecessary suffering and delay in the diagnosis of uveitis – which, in one instance, had led to significant damage being caused to the eyes.

The information received during the discussions will assist members of the Network Group to develop services which will meet the needs of families and children – irrespective of where they live.

A number of parents have offered to help in several areas of the Group’s work.  We look forward to working with them to improve services for children with rheumatological problems across the West Midlands.

Support Links for Parents

Children's Chronic Arthritis Association (CCAA)         www.ccaa.org.uk
Choices                                                                             www.kidswitharthritis.org
Kids unlimited                                                                   www.kidsunlimited.info
British Society of Paediatric and Adolescent               www.bspar.org.uk

            Rheumatology (BSPAR)      
Arthritis Research Campaign (ARC)                             www.arc.org.uk
Arthritis Care                                                                    www.arthritiscare.org.uk
British Society of Rheumatology                                    www.rheumatology.org.uk
Teenage Health Freak                                                     www.teenagehealthfreak.org
Paediatric Rheumatology European Society                www.pres.org.uk
Immunisations                                                                   www.immunisation.nhs.uk