This blog is about one of my earliest interests: data.
My interest in data began as a kid with 20 sleeps to Christmas and the purchasing power of my pocket money. I had enough for two currant buns. But, how many buns could I have bought twenty years earlier and did they taste better? I also discovered that my brother, three years younger and four at the time, saw data differently. He counted coins and not the value of each. That meant I could make a tonne of profit…if only we had more than the jar of coins on the shelf.
It felt like this when we in the RCPCH Wales office looked at the data for waiting times in the paediatric population. StatsWales holds data for the ‘paediatric pathway’ as well as data for under 18s on the COVID-19 recovery plan targets. We were looking at this data to inform our new report, Worried and waiting: A review of paediatric waiting times in Wales.
RCPCH Wales had grand plans. We were going to cut the data in all sorts of different ways: track it across primary care, therapies, mental health and surgery, examine integrity and make various comparisons with postcode, staffing levels and across health boards. But, frankly, there isn’t the data. It is not accessible and potentially not even collated. That’s the story!
Is this the time to be brave and recognise an opportunity to challenge assumptions, improve data and run models of new systems of care?
Which is not to say we didn't find something. We did. In short, from November 2016 to November 2023, the overall number of paediatric waiting numbers increased by 62.3% from 7,096 to 11,514, a greater rise than trauma and orthopaedics (52.6%), ENT (57.4%) and rheumatology (6.7%). Paediatric waits peaked in May 2023 and are now recovering slowly. However, between November 2022 and 2023 the number of paediatric patients waiting over 36 weeks for treatment increased by 40.2%.
Waiting lists for children are disproportionately longer than other adult waiting lists. Now this is the point where we could over-egg our pudding and make too much of the trend we found. But we believe it is just another signal of the intergenerational funding gap (PDF) that means we are storing up problems for the future and not addressing the wellbeing of future generations. Unhealthy kids now mean poorer health later on and the potential for an even greater funding gap in 50 years (PDF).
This is the time to take stock and look at the data and healthcare expenditure as a whole. Do we just accept that as we age we demand more healthcare resource at the expense of an assumed healthy youth? (Ever since I went into rheumatology I’ve heard, “but kids don't get arthritis, do they”.) Or, is this the time to be brave and recognise an opportunity to challenge assumptions, improve data and run models of new systems of care? Could we top slice a slither from the considerable expenditure on the last two decades of life and reallocate to the first two decades of life - so that in fifty years we are spending far less time in ill health as we grow old?
Take a look yourself at the UK Government's own data on healthcare expenditure by age and see what you come up with.
So why do I pick the first and last two decades? This brings me to the second finding. There is much in the press and health literature about the importance of early years - the first 1,000 days - and expenditure on the last year of life has been long recognised. There’s the lost tribe of patients aged 16 to 18 years and, to my mind, representative of those 12 to 25 years.
While only 179 patients were recorded on the paediatric pathway waiting over a year for treatment (according to the COVID-19 recovery plan data), when filtering all pathways by under 18-year-olds, there were 6,785 waiting over a year for treatment, 1,229 waiting over two years and an additional 3,307 (and rising) waiting over a year for an outpatient appointment (as of November 2023).
We are advocating for a move toward ‘age-appropriate care’, away from the rigid barriers of age
While it could be that paediatric patients are being listed on other pathways - for example, cardio - it is more likely that the majority of the 10,000 or so under-18s are those 16- to 18-year-olds lost between services. This issue of ‘transition’ is only a drop in the ocean of the general problem for this age group. That's why we are advocating for a move toward ‘age-appropriate care’, away from the rigid barriers of age.
I’d recommend to anyone interested in data, or the state of paediatric referrals in Wales, to read the RCPCH Wales report and support our recommendations. We’re calling on the Welsh Government and partners to improve data quality and transparency, invest and expand in the child health workforce, reduce health inequalities and move towards age-appropriate care.
- A case study
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Over the last couple of weeks an 18-year-old patient has been using social media to share their experiences about a prolonged wait for a medication to help preserve their sight.
The health board communications team came to my team and me to ask what we could do. We had already negotiated with pharmacy and approached various nursing teams across different health boards to administer the intravenous treatment. Centred on patient empowerment, collaboration soon found a new solution.
However, the issue of “transition” is only a drop in the ocean of the general problem for this age group as shown in our 'Worried and waiting' report.