Still living with JIA
25/03/05: Dr Carrie Britton Phd, MSc, Dip COT, SROT - In 1992 we were just getting used to the delights of our new baby Ruth when our other usually playful, giggly daughter, Bethany then aged two, began to change. She slowly lost interest in her toys, her food and even Thomas the Tank Engine. She grew withdrawn and easily upset over the smallest thing. She cried whenever we went out to the park or shops. It had to be more than just reacting to her new sister’s arrival.
She became generally miserable and other symptoms like night time fevers, swollen joints and weird rashes all seemed to clear up before the doctor arrived. The G.P. was generally unsympathetic and dismissive about such changeable symptoms, and about our concerns. So the eight month wait to see the Paediatrician was frustrating and lonely. We both felt exhausted and very anxious well before we got the diagnosis.
The Paediatrician took six minutes to examine Bethany before he turned to give us the diagnosis of severe systemic onset juvenile chronic arthritis. In 2005, what has changed for other families who find themselves coping with the same situation. Is it only the name of the illness that has changed?
What has changed?
Three changes have been especially important. When our daughter became ill, it was still an era of ‘doctor knows best’. Since then devastating scandals like the Bristol Royal Inquiry, and Alder Hey have forced a seismic change in how people in general and parents in particular, relate to doctors and other healthcare professionals. People in general, including parents, are more likely now to ask questions, they want to understand more, and expect more involvement in clinical decisions.
Valuing Service Users
Another important change is that service user views have emerged with renewed vigour to influence both policy and practice. The key organisations have the ‘insiders’ view’, with the practical experience of how services are actually delivered rather than just the theory of the well intentioned policy makers. Important service user organisations, like NRAS, Arthritis Care and CCAA (Children's Chronic Arthritis Association), are available to help with information and support.
The ARMA ‘Standards of Care’ guidelines, Disabled Child Standard, National Service Framework for Children and other key national strategies all emphasise the importance of listening to service-users, and involving them in every stage of service delivery. It will be interesting to see what changes actually materialise – get involved now if you want your experience to help shape services in the future!
The second change in rheumatology is the arrival of powerful new medicines (DMARDs like methotrexate and biologic medicines) which prevent or substantially delay devastating joint changes. The new drugs mean that a generation of children with arthritis can more consistently attend school while managing their arthritis, and are more likely to reach their educational potential. We can all celebrate these developments which mean that our children will have a better future but parents still have to constructively manage these new treatments. The drugs are scary for parents to give their children, and it can be a serious problem to arrange regular blood tests, prescriptions, collection of medicines, and disposal of sharps boxes full of used needles. Here in Sussex, parents have had to resort to keeping accumulating used needles in sharps boxes in locked garden sheds while professionals argue for months over whose responsibility it is to collect and safely dispose of them. Teenage children with arthritis have more need than ever for informed psychological support because there is a greater divide between themselves with their now largely invisible condition, and their fit and healthy friends.
Trust in doctors, nurses, therapists and the healthcare system in 2005 has to be earned rather than assumed. Partnership between parents and practitioners has to be actively built, with both sides communicating openly and effectively. Different charitable organisations and healthcare colleagues are working hard together to build partnerships in this new era. Progress is positive and promising, but patchy. CCAA, NRAS and Arthritis Care all continue to work hard to give timely, jargon free, impartial information and advice so that people can live positively with arthritis.
Is the experience of families seeking a diagnosis better today? In some places it is; in some places it is business as usual, despite the dedicated efforts of some healthcare professionals. But across the UK, more impartial support and information is now available free for families.
During the two days I have taken to prepare this article, I have answered five calls from across the UK, from families of newly diagnosed children. Arthritis in children remains a difficult condition to diagnose, but families report familiar problems. Long delays, duplicated assessments, dysfunctional team working, conflicting advice and little or no face-to-face support in the families’ home communities. Like the well known lager advertisement, we are still waiting for the new healthcare to reach those parts other changes cannot reach.