How much would be reasonable for the NHS to pay for a drug that extended life by 10 years? Difficult to resist, eh?
How much if associated with a five-year extension and increased earning potential to more than pay for the intervention? Or three years with decades of improved wellbeing thrown in? Still interested? And what if it needed a different way of working – say, cross boundary funding and collaboration – yet could be easily scaled across conditions and all of paediatrics?
Technology appraisals
We give new tech a lot of credit. I’ve been prescribing drugs approved by NICE (National Institute for Health and Care Excellence) for well over 20 years. They’ve cost £9,000 to more than £100,000 per year - until the patent runs out – and have complex names, adding to the mystique – Ikid-u-notumab! But they don't match up to the intervention posseted above and despite the vast sums spent.
In Oxford in 2011 we spent over £1 million per year on 200 children – 2% of adult budget - excluding the often considerable associated admin, day case infusion and blood monitoring [BSR abstract 2013].
NICE appraisals help to level the playing field for other drugs and ensure a degree of value for money. But they are less straightforward in children and young people – in part because the life tables used are from a population older than 16 years and assessment of impact on such activities as schooling, which have a huge bearing on life expectancy.
In fact, the Decision Support Unit, which informs NICE, has now just started to appraise the impact on schooling. In a recent paper it identified the key role of a whole school approach
So, why school?
Just as schooling is associated with greatly improved life expectancy, persistent school absence (PSA) of greater than 10% is associated with poor long term health outcomes and reduced life opportunities.
A significant percentage (ranging between 40-49%) of PSA is medically authorised and most of this is not, as might be assumed, down to minor illness or infection. PSA is typically associated with long term conditions, including asthma, epilepsy, IBD, anxiety, neurodiversity and persistent pain and fatigue.
What is more, PSA is high and has risen significantly since the pandemic in Wales. Between 2013 and 2019 the percentage of persistently absent secondary school age pupils in Wales stayed between 15.9-19.0%. However, following the COVID-19 pandemic, this more than doubled and in 2022-23 reached 40.1%. Of those secondary aged pupils on free school meals 64.3% were persistently absent (PDF).
This data is similar to that found by Parentkind (PDF), UK wide and in Europe and the United States.
It also appears to have a correlation with the recent marked rise in people signed off sick from work for ill health. By far the majority of this population is less than 24 years old and rates in those aged 16-17 years has more than doubled.
Taskforce
In response to the challenge of PSA the Welsh Government set up a ministerial-led school attendance taskforce. Dr Rowena Christmas, Chair for Royal College of GPs in Wales, and I sought to participate in the taskforce. Firstly, we wanted to ensure physical health was included, whereas typically only mental health is considered. We could then share our experience and learn from others how best we might interface at scale to improve outcomes. We know we are seeing the tip of the iceberg and in my case well downstream from when early intervention would have been simpler.
To help guide us I have sought others' opinions, especially from community paediatrics and primary care, plus guidance from RCPCH who are now developing a paper that may lead to a position statement similar to RCGP (PDF).
What can be done to improve attendance?
Addressing school attendance could be that low-cost intervention that improves outcomes to the extent cited in the opening paragraph. Furthermore school can be the safe place for medical management, with the right support for school, when parents find it difficult.
It’s my experience from caring for many patients with PSA (>100/y) that addressing it head on (phone or video calls with school and codesign of pathways of return) has considerable impact. Many return to school full time, and where seemingly intractable we’ve seen average attendance rates rise from 45% to 78%. As paediatricians, along with GPs and therapists, I believe we have a responsibility to address this.
My recommendations
To help guide us I have sought others' opinions, especially from community paediatrics and primary care, plus guidance from RCPCH who are now putting together a paper that may lead to a position statement similar to RCGP (PDF).
- Routinely record school attendance data - at the same time as height and weight - to ensure it is addressed by all of us where health is a concern. This data is usually easily accessible online to parents.
- Listen. This is a key proposal of the Taskforce and in the right clinical setting, patients and parents divulge the underlying difficulties and share the embattlement they often experience, whether from inadvertent assumptions or fear of teachers in providing support. In line with the INTOUCH team, in Leeds, typical difficulties for the patient include: “normality and difference''; “keeping up/catching up/missing out/looking forward"; "'identity'; “relationship with peers”.
- Make it easy to assess and support children and young people. A simple systemic solution is required to take the effort out of child health staff engaging with schools and vice versa. It should understand the needs of pupils, teachers and medical staff, and include an accessible interface between school and physical health services. This might be a youth worker or a health coach, as shown to great effect in India.
- Codesign individual solutions - to ensure effective engagement of the pupil. My experience is this is not difficult to achieve and ensures safety, and a focus on strengths of the young person.
Of course this will require some additional resource, offset by reduced child health appointments, but even when done on a shoestring can still be highly rewarding and effective.
- A case study
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A 7-year-old girl, referred with a two-year history of widespread pain, disturbed sleep and recurrent fevers, was too fearful of entering the clinic room. A clinic nurse and I started with toys and colouring in the waiting area, as I spoke to her mother. And with time and an abundance of questions from our patient we transferred into a clinic room.
After exploring the room and more questions, she settled to focus on her colouring and responded to praise. We completed a complex history and full examination.
This was a well child, whose processing of information had created a sense of distress which played out in school and in the evening. Reassurance, not a medical label, was key here and whether there was neurodiversity, trauma or another label, this child's needs were for structure to her day and activities and support of self-regulation at times of distress.Conversations with school and a couple of subsequent virtual "team around the child" meetings changed assumptions and approach of teachers and parents. This allowed the child to settle and flourish, although I am sure there would be other challenges. There seemed to be a light bulb moment that meant healthcare could step back.
It doesn't take much to be an advocate.... and its very rewarding.
*This is a composite case of several young people with similar problems and management