‘Having a child with a chronic disease has a big impact on families’

I found rheumatology really interesting from the very first lecture. My final medical long case – a clinical bedside examination – was an older gentleman with severe rheumatoid arthritis on the old St Anthony’s ward in the then University College Hospital Galway (UCHG), I remember being instantly relieved when I realised what his diagnosis was.

As an undergraduate in training, the paediatrics department at UCHG was a dynamic, exciting place to be. Gerard Loftus was the head of department and a lot of graduates from my time went into paediatrics as a result of his enthusiasm for the specialty.

I knew I wanted to train in paediatrics very early on, and went straight to Temple Street Children’s Hospital after my intern year. Paediatric rheumatology services were non-existent in Ireland at the time. Children were managed as adults or sent to Britain for treatment and there was a dire need for a dedicated service to be developed.

I recall meeting an eight-year-old from Co Louth who had a really rare disorder called juvenile dermatomyositis, an inflammatory condition that affects muscle and skin in particular. Like many other children, he had to travel frequently to Britain as there was no paediatric rheumatologist in Ireland. That really was the deciding point for me and I applied for a registrar post in Great Ormond Street and moved to London a couple of weeks after getting married. I spent three years in the UK, moving to the Sick Kids Hospital in Glasgow before taking up my post in Crumlin just over nine years ago.

Working single-handed as the only paediatric rheumatologist in the country was daunting at the start, but also exciting in that it was a great opportunity to develop the speciality from the word go.

I started with just myself and my secretary, Noellen, and we now have a large multidisciplinary team of more than 12 people. My colleague Emma Jane Mac Dermott joined me in 2012 and that was a big highlight; it’s good to have that support both professionally and on a personal level.

Arthritis not just a disease of older people

Most people are stunned when they hear about a child with arthritis, as it’s generally thought of as an older person’s disease, but in fact most children are between one and three years old when they first get symptoms. There are approximately 1,100 children in Ireland with the condition.

The disease can present in different ways, but symptoms have to be present for longer than six weeks for a diagnosis of juvenile idiopathic arthritis. A child might regress from walking back to bum-shuffling or might start to limp, or they might be cranky or irritable in the morning.

There have been incredible advances in the treatment of arthritis in recent years. Fifteen years ago, all we were able to offer patients were disease-modifying drugs, but the development of biologic drugs has revolutionised treatment options for patients. It is an exciting area to be working in as there are always new biologics coming on stream, but with children, we have to be more cautious. There’s also a lot of exciting work going on in the area of stem-cell treatment, which could help children who are not responsive to other treatments.

Unfortunately, most of the biologics are available only as intravenous infusions, which have to be given in hospital every two weeks. It’s a full day between getting to hospital and home and it’s not easy on parents who have to take time off work.

Having a child with a chronic disease has a big impact on families. Parents have to take a lot of time off work for medical appointments and frequent blood monitoring, and the child may have problems tolerating the medication. Siblings are also affected, and psychological support is really important for these families.

Impact on child’s life

The impact of juvenile arthritis on a child’s life is huge; it affects everything from fine motor development to mobility and delay in reaching developmental milestones. There is also the social development side of things. A lot of teens with a chronic disease such as arthritis do not want their friends to know and medication compliance can be a big problem in this age group.

The advice about exercise and arthritis has changed totally in recent years. Where people with arthritis would once have been advised to avoid physical activity and rest, we now know that this is the worst thing they could do. Sport and exercise are crucial, particularly for younger people, and we encourage them to stay as active as possible.

I work over three hospital sites, but Crumlin is my headquarters. Monday morning is taken up with our adolescent clinic. We focus on the concept of transition from an early age, so that when our teens finally make the move to adult services, it’s not such a huge shock for them and their parents.

After clinic, my time is always pressurised. I do a quick ward round if there are inpatients, then head up to the day ward to see any urgent reviews and those attending for drug infusions, usually biologic infusions. I have another clinic in the afternoon, then usually a meeting after, such as our physician’s group, which I have chaired for the last few years.

Tuesday is very much a multidisciplinary team (MDT) focused day. I start either with another committee meeting or try to get some administrative work done before I head to our large general rheumatology clinic. This clinic always runs late into the afternoon as it is always overbooked. Children of all ages attend and most will need to go to phlebotomy or to meet other MDT members.

Team insight

I head from there to our weekly team meeting with lunch in hand and although it can be noisy at times, with 12 or more around a table, it is crucial in terms of planning any therapeutic changes or admissions. It also provides insight to the team about other aspects of care such as a patient’s psychosocial development or needs. I often head to the wards afterwards before heading home.

Wednesday can be a variable day. I have a commitment to the general paediatric rota and I have post-call rounds to do for general paediatric admissions some Wednesday mornings, in addition to my own subspecialty work, rheumatology day cases and infusion clinic on the day ward. I usually try to see inpatient consultations on this morning and any urgent new patients or reviews, as clinics are overbooked months in advance. Our speciality has no dedicated clinical area like that of other departments based in the medical tower, so the day ward functions as a drop-in unit for us.

I also have undergraduate teaching obligations on Wednesday, so I give either a lecture or a bedside tutorial. Once a month, I have a theatre list for joint steroid injections under general anaesthetic: a young child couldn’t tolerate this procedure under a local anaesthetic. Some of these children could have 10 to 15 joints injected at a time. If I am not in theatre, I try to bury myself in the never-ending paperwork and dictations, or triage referral letters. We receive a huge amount of post every week. I also meet my research fellow, who is researching arthritis in Down syndrome and is shortly starting a PhD in this area.

Transition clinic

Thursday is the day I probably enjoy the most. Twice a month, I go to St Vincent’s hospital for a young adult/teen transition clinic, which is the second component of our transition pathway, otherwise known as the Yard clinic (young adolescents with rheumatic diseases). Our department was awarded two Irish Healthcare Awards last year for this unique model of care, including the overall award, An Duais Mhór. I run the clinic at St Vincent’s University Hospital with my adult-medicine colleague, Dr Eamonn Molloy, and a multidisciplinary team.

There is always some banter and, being a smaller clinic, we get plenty of time with patients. Most of these adolescents have transitioned with me from my own unit so I have known them for years, and it’s great to see them evolve from monosyllabic teenagers to confident, chatty adults. They move into the full adult clinic at about 20 years. I regularly get a hard time for having trouble with finally cutting the umbilical cord. If I am not in Vincent’s, I have a theatre list again for steroid joint injections in Crumlin.

Friday starts with a departmental journal club or, once a month, musculoskeletal journal club. From there, I head to the wards. The day ward is very busy with children for reviews, infusions and occasionally the older child for a joint injection with entonox sedation. We have weekly hospital grand rounds at lunchtime and in the afternoon, I may have to finish the ward round, or attend a meeting or a case conference of a particularly complex case. I usually try to get some administrative work done if there is still time.