Can failing children’s services be the spark that ignites NI’s health transformation?

One in five children in Northern Ireland is on a health waiting list. A total of 17,000 have waited for more than a year for a first appointment with a consultant. That includes 24 kids with urgent red-flag cancer referrals.

Those are some of the findings from a report published this week by the Children’s Commissioner (NICCY). More Than A Number - A Rights Based Review of Child Health Waiting Lists in NI is based on research of waiting-time figures that are not normally made public.

It found that 1 in every 47 children in NI with conditions that require surgery or procedure are waiting for an in-patient or day case appointment.  In April 2021, 62% of them (6092 kids) were waiting over 1 year, and 197 over 4 years.

Overall, these waiting lists concern all aspects of health and social care – from cancer to autism, from physiotherapy to mental health.

Koulla Yiasouma, the Children’s Commissioner, said: “The report presents a concerning picture of the number and length of waits for services, this includes red flagged first consultant out-patient appointments which are either confirmed or suspected cancers where we found that 24 children were waiting over 1 year…

“While these hospital care statistics are shocking at least we get a clear picture. Worryingly, we have found a complete absence of regional monitoring or reporting of waiting times for community child health services which makes it impossible to get a clear understanding of the number of children waiting for these services.

“This review found that at least 26,818 (1 in 16) children in NI are waiting for a community-based health service and that figure is likely to be much higher given the limited data that was available.”

It should be noted that Health Minister Robin Swann has since said that, per the latest data, no children currently have been waiting more than a year for a red-flag cancer referral (NICCY's research covers the period until April). Mr Swann did not announce this as a rebuttal to the report - he accepts and understands the challenges perfectly well - but simply to provide a modicum of slightly better news by way of an update. The challenges highlighted by the Children's Commissioner remain.

On Tuesday, SDLP MLA Colin McGrath brought the NICCY report up in the Assembly. The short debate that followed featured, more or less, unanimity from the house.

Mr McGrath said: “We are supposed to live in the First World — not the Second, not the Third but the First World — and we leave children for one year to see a doctor when they have a suspected or even a confirmed cancer case… Let me be clear: if the system is not working, it is broken, and, if we know that it is broken, there is a duty on all of us here to do all that we can to fix it.”

Sinn Fein’s Caral Ní Chuilín said: “The system is broken. The system needs to be fixed. We have all said that we need to take politics out of health. We all agree on that.”

The DUP’s Pam Cameron said: “We need to promote lasting solutions that place the health and well-being of every child at the centre of acute elective and community-based health services. The much-needed health transformation in Northern Ireland extends to all aspects of our services, not least children's health and social care. The report is another stark reminder of the task ahead.”

The UUP’s Alan Chambers said: “To be clear, our waiting lists have been exacerbated by COVID, but they were not caused by it. The report makes it clear that the problem has been deep-rooted for several years…Many factors have contributed: a failure to have a workforce plan; a failure to identify and close the opening gap between demand and capacity; and a failure to transform services.”

Alliance’s Paula Bradshaw said: “This is the latest general failing of an unreformed service. Continuing just to throw money at a system that does not work will simply leave us with more appalling instances of non-care. Remember that there are other health services in Europe that simply do not have waiting lists… What will it take for us all in the Chamber to grasp the fact that transformation must proceed, and quickly?”

Except, as alluded to but mostly skirted around during this debate, politics has been and remains one of the biggest obstacles to reform.

Blockage

It is a decade since landmark review Transforming Your Care (TYC) called for sweeping structural changes, including: greater specialisation within those hospitals (and probably fewer hospitals overall), better social care to free up hospital spaces and allow people to live independently at home (or, perhaps, in social housing), greater focus on prevention and early interventions, a dramatic improvement in workforce planning, and more.

Since then, the findings of TYC have been reiterated in other official reviews, such as 2014’s Donaldson report and the Bengoa report in 2016, while the principles behind TYC were embedded in Health and Social Care planning in 2016 by then-Health Minister Michelle O’Neill, in her ten-year plan to enact the needed reforms, Delivering Together.

However, reform has been too slow to match the escalating crisis. This has little to do with Covid-19. While the pandemic has made everything much more difficult, reform of health and social care was not quick enough even before March 2020.

There are several reasons for this. These include:

Politics – the necessary reconfiguration of services does not involve cuts, or fewer doctors and nurses (in fact, it broadly calls for more), but it calls for vastly improved efficiency, via rationalisation of hospital services. Rationalisation here means a radical reconfiguration of NI’s hospitals. This will likely mean a big change in what is offered in the regional hospitals, perhaps even some full closures, while all remaining hospitals will better resourced and with increased focus on dedicated specialisations.

This all makes sense, but none of our politicians seems to want to make that case to their constituents when those constituents live near a hospital that could see its services reduce or disappear. That could include Lagan Valley, Daisy Hill, the Downe, Antrim Area, the Causeway and the South West Acute.

Sir Liam Donaldson, in his 2014 report, said: “Proposals to close local hospitals tend to be met with public outrage, but this would be turned on its head if it were properly explained that people were trading a degree of geographical inconvenience against life and death. Finding a solution should be above political self-interest.”

This has not happened. In fact, when issues like downgrading or closures of hospitals arise, NI’s politicians tend to campaign against health reform rather than for it.

It is tough to make subtle points about health service reform. The public values the health service, and is suspicious of change – especially if that change involves a loss of services near where they live. Brave and frank conversations need to take place between a united Stormont and the people they serve, to make the point that massive change is required.

Resources – transforming NI’s Health and Social Care system will cost a fortune. Does Stormont have a spare fortune? No. Can it afford for HSC to keep disintegrating? Also no.

Therefore, the money has to come from somewhere else. The problem is where. Health (in terms of the day-to-day running of HSC) and education dominate the block grant. Reform is unlikely without a chunk coming out of either or both of those budgets – even factoring in extra money allocated for Covid recovery, and Barnett consequentials stemming from the rise in National Insurance. 

This is not only a question of the costs associated with transformation. A new and sustainable health service will rely far more heavily on social care than NI does now, but social care is already overstretched and underfunded. To be sustainable, social care will need support through transformation and an ongoing, recurring investment.

Even without a reduction in funding of day-to-day health services, transformation will inevitably cause disruption and cause problems in those services. This could even lead to more pressure on waiting lists.

Politics, pragmatism, and the toughest choices imaginable

In a lot of ways, it is less risky politically to let HSC degrade more and more, rather than to explain and implement tough choices that could lead to huge challenges in the short term.

Successful reform with require politicians – the Health Minister, the Executive, the Assembly as a whole – to both direct those choices and sell them to the public. This requires real political bravery.

If humungous lists of sick children unable to access access services cannot ignite our representatives into action, perhaps nothing will.

The issue of resources, unfortunately, also comes with some political cost. Can local schools survive with even less money? The doors will still open, but what takes place in classrooms will suffer.

What about the health service itself? What would the effect be of reducing day-to-day financing at the same time as the disruption manifested by change? It seems likely that the waiting list crisis would increase, in the short term.

That would be unpopular. But the fact remains that the primary cause of the waiting-list crisis, and the single factor that will guarantee waiting lists continue to rise in the medium- and long- term, is the slow progress to date.

An ice-cold view might be that transformation has to be properly resourced, and that current waiting lists should be forgotten about, or written off, or accepted as the disaster they are. That dealing with the long-term weakness is the priority.

That attitude is better than inaction, but we can aim higher. Transformation must proceed, and proceed properly, but current waiting lists should not be ignored. Solutions might have to be creative, or desperate, and might lead to some bewilderingly difficult decisions – but these things can still be taken on, even if it feels like a scramble.

Because behind these waiting lists – for cancer services, for special educational needs, for wider physical health, for mental health, for absolutely everything you can think of – are people. Those 17,000 children on waiting lists are all actual children who need help. They are not a secondary concern.

As the Children’s Commissioner Ms Yiasouma said this week: “While the impact of waiting on a red flag or urgent appointment is clear, we know that delayed access to any specialist support, whether that be for autism diagnosis or support, CAMHS, physiotherapy or speech and language, can and does have a profound impact on a child’s health outcomes, emotional and mental wellbeing, educational attainment, relationships with family and friends and quality of life more broadly.

“The stress and pressure on parents and carers as advocates for their child, experiencing delays in accessing healthcare is significant. A clear message from them was that communication, co-ordination and emotional and practical support is inadequate and needs to be improved.

“These are the most basic expectations of these services and are particularly important when waiting times are as long as they are. Therefore, I have recommended an interim regional waiting list management process for child health services be established while overall reform is on-going.”

It really is over Stormont, and an Assembly where large swathes of MLAs are focused on other things (the Protocol), and many representatives are in election mode.

However, the health service is the biggest policy issue in Northern Ireland right now. There is cross-party agreement. Surely that means change can move up a gear, regardless of the coming election?

Yes, it’s tough. Agonising, even. But skirting the edges of health reform means the challenge only keeps getting tougher.