Paediatric Rheumatology has become recognised within the last 20 years as a paediatric subspecialty. Previously the care of these patients was undertaken by interested adult rheumatologists. However, the National Service Framework for children recognised that children should be seen in child-friendly areas by staff trained to look after children. In the UK, there are not enough Paediatric Rheumatologists to see all of these patients, and many are still seen by adult rheumatologists or are seen by non-specialists. This is no longer an acceptable practice.
In the last 20 years, arthritis treatments have emerged which have brought fundamental improvements to the outcomes of children. These improvements can be measured not only in the number of adults who are not consigned to life in a wheelchair, but less demonstrably the even greater numbers whose functionality has been maintained through their school days, enabling them to fulfil their potential in life. However, the distribution of areas of best practice is lamentably poor, creating inequality of access to care. There is no overall grasp of the problems that the current lack of systems throws up. Specialist commissioning is, to a certain extent, addressing some of the issues, but is itself overwhelmed by the huge task it has been assigned.
As a paediatric subspecialty, Paediatric Rheumatology has 2 major drawbacks: paediatricians were not historically taught how to examine the musculoskeletal system, and many of the emerging drug treatments are more familiar to oncologists or immunologists than to paediatricians. Therefore, paediatricians are often unfamiliar with the skills to look after these patients and do not have a ready source of training to close the skills gap. At the moment, there is no added incentive for District General Hospitals (DGH) to provide paediatric rheumatology clinics, and many paediatricians are unwilling to take on the responsibility of caring for these patients.
The conditions that paediatric rheumatologists look after are chronic conditions that are considered to be rare: the commonest of these is Juvenile Idiopathic Arthritis (JIA) with an incidence of 1 in a 1000 children. DGH Paediatricians who start to see children with arthritis are often surprised by the number of patients (80 to 100 per DGH) they see. These children need to be seen frequently within the first year of their diagnosis (and when their arthritis flares), as well as every 3 months once their disease is under control to monitor their growth and ensure their joints are developing normally. Added to this cohort will be children with musculoskeletal aches and pains that mimic arthritis: most DGHs should be running a regular Paediatric Rheumatology clinic.
BSPAR (British Society for Paediatric and Adolescent Rheumatology), in conjunction with ARMA (The Arthritis and Musculoskeletal Alliance), have published Standards of Care for JIA which have been internationally recognised. These describe the support that children with arthritis need access to this includes access to physiotherapists, specialist nurses and occupational therapists. Paediatric musculoskeletal physiotherapists are needed for children with musculoskeletal aches and pains, whether they are due to arthritis or the more common biomechanical problems (such as a muscle imbalance). This care should be provided locally: at the moment, the specialist centres are trying to plug this gap and are being overwhelmed. Patients with difficulties in activities of daily living (due to disease or pain) should have the support of an occupational therapist to help with access to schooling or to help them maintain their independence at home. The patients with arthritis and other inflammatory diseases requiring immunosuppressant medication should have the support of a clinical nurse specialist to help them understand their disease, their medication and to oversee the monitoring of the medication.
At the moment, most of this care depends on Paediatric Rheumatology Centres that have developed in a haphazard way. Each centre has been built up by an interested doctor, with no regard to population numbers or geography. Each centre has developed its own model of care with varying levels of support local to the family. Not all patients have access to a specialist centre and these will often be looked after by adult rheumatologists. This inequality in care leads to a wide variation in outcomes: research has shown that delay to diagnosis is a poor prognostic factor for a good outcome in many inflammatory diseases. Arthritis is often viewed as an unexciting condition which is not life-threatening. Children with inflammatory diseases are at risk of life-threatening events, which are often poorly recognised until too late. Paediatricians, quite rightly, set great store in whether a child looks well or not. Unfortunately, these children often look relatively well, with only the blood tests indicating the severity of their underlying condition until they collapse and end up in intensive care. Though this only occurs in the smaller number of children with systemic illness (rather than illness restricted to just the joints), the early stages are eminently treatable. Even with children whose disease is restricted to just one joint, such as the knee, the joint damage caused by arthritis leads to an inability to walk, leg length discrepancy and secondary spinal deformity. Children with multiple joints affected used to end up severely disabled with stunted growth, often in wheelchairs and unable to lead independent lives.
The advent of better medication in the last 20 years (methotrexate and then biologic agents such as etanercept) has improved outcomes enormously by controlling inflammation and allowing normal growth and development to take place. Teams looking after these patients have seen a shift from struggling to keep these patients moving despite their joint problems, to supporting patients to regain normal strength and to maintain full access to their education.
There is a financial as well as a human cost in failing to provide proper care in the early years of the disease. Stinting on preventive treatment in early years multiplies exponentially the cost of support and care in the rest of life.
Existing Paediatric Rheumatology Centres are all oversubscribed and specialist commissioning aside, there is no attempt by the government or the NHS to address the lack of an overall strategy to save children from unnecessary lifelong hardship. Paediatric Rheumatology teams are keen to improve the care of the children but lack the time to train local teams to set up and maintain appropriate care. The tools exist, but we are failing our children by not enabling them to be put to use.
Rheumatology Department
Great Ormond Street Hospital
Tel: 020 7405 9200 ext 7887
Fax: 020 7813 8580
gos-tr.Rheumatology-Gosh@nhs.net
