Reaction to Martine's Story with JIA (BBC Panorama)
Published: 3 Jun 2019
The first episode of a profoundly bleak but crucially informative two-part Panorama, Crisis in Care (BBC One, Wednesday 29th May at 9 pm), highlighted the adult social care system on the brink and in dire need of reform after years of austerity. A BBC social affairs correspondent spent a year in Somerset, a county with one of the UK’s fastest ageing populations. There, the council spends 42 pence in every pound of council tax on funding adult social care. One of the case studies highlighted was Martine, a 37-year-old mother of triplets with very severe juvenile idiopathic arthritis (JIA) since the age of two, cared for by her partner.
Martine’s story with JIA was very moving and powerful and we are glad to hear that she is now in receipt of some of the additional care she so badly needs, funded by the local authority. Martine’s story is unique, as are all our stories, however, we were concerned having watched this that parents of children under the age of 16, or young adults with JIA who are currently living with JIA might have found this film frightening and worrying in regard to the future of their own children or their own future. JIA is an umbrella term for a number of childhood forms of inflammatory arthritis and these are serious and complex conditions with no cure. However, the way in which JIA is treated today, together with the range of innovative drug therapies which encompass conventional disease modifying anti-rheumatic drugs and the newer biologic and biosimilar therapies, means that many children and young people are able to lead much more normal lives and do all the activities they want to. Not all children take JIA into adulthood and of those who do, again, the majority are able to lead a good quality of life. Of course there are those who can experience complications, and sometimes don’t respond to therapies which can reduce options to treat, leading to periods of flare which can cause damage, but fortunately today, those who are as badly affected as Martine, are much more rare than used to be the case many years ago.
NRAS Paediatric Rheumatology Advisor, Lucy Wedderburn, Professor and Consultant of Paediatric Rheumatology UCLH and GOSH, said “ Childhood onset arthritis (juvenile idiopathic arthritis, JIA) needs complex care from a team of specialist professionals. Some cases are mild and others more severe. However, with the modern drugs and management that are now available, the majority of children with arthritis and the young people they become, lead active lives, attend school or college, and take part in activities with their peers. Martine’s story is unusually severe, and fortunately is not typical of JIA in the modern era.
In partnership with charities including NRAS (JIA-at-NRAS), Versus Arthritis, and others, vital new research by the CLUSTER Consortium (https://www.jia.org.uk/news/new-study-of-over-5000-young-people-will-create-biomarker-tests-to-personalise-treatment-for-childhood-arthritis) is ongoing to try to ensure every child and young person gets the right treatment early to avoid serious complications of their arthritis.