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Waiting in vain

22 July 2021

As waiting lists for NHS services reach record highs following the pandemic, journalist Juliette Astrup takes a look at what it means for children and families.

NHS waiting times have been hitting the headlines in recent months as the immediate pressure of Covid-19 recedes, and the longer-term impact on healthcare services begins to be understood.

The combined effects of routine work being halted, especially during the peaks of the pandemic, as well as staff redeployment, sickness and self-isolation, and changes to the delivery of service, have seen waiting lists lengthen significantly as demand has continued – or even risen – while activity dropped.

The figures are now huge. The latest data revealed that a record high of 5.1 million people were waiting for NHS treatment in England in April. Of those, 385,490 patients were waiting more than a year (NHS England, 2021a).

Five million is a ‘pretty terrifying number’, says Deborah Ward, senior analyst in the policy team at The King’s Fund. But as she points out, it was ‘already going in the wrong direction prior to the pandemic’. So in fact ‘what the pandemic has done has increased the pace’.

Within that headline figure were 245,699 children waiting to start treatment in paediatric services, with almost a third waiting longer than the target 18-week period. April was the first time data relating specifically to paediatric services had been pulled out and presented separately.

April’s data also showed that nearly 3000 patients, both adults and children, had been waiting for more than two years to start NHS hospital treatment – another figure captured for the first time.

‘The most pressing cases will be prioritised, but an operation considered non-urgent, such as a hernia treatment, will now have a longer wait’

Disrupted and delayed

But even this number doesn’t present the whole picture, even for England alone, focusing as it does on hospital-based and consultant-led care. The picture for community care services is far less tangible, but problems here have also been flagged.

A recent Ofsted/Care Quality Commission report explored the impact of the pandemic on children with special educational needs and disabilities (SEND). It highlighted the absence of essential services such as physiotherapy or speech and language support during the pandemic, and long waiting times for assessment and treatment (Ofsted, 2021).

Concern for children with SEND, including those with conditions such as autism, is echoed by children’s commissioner for England Dame Rachel de Sousa, who says: ‘Too many of these children weren’t getting the right therapies and support even before the pandemic and we know Covid has disrupted these services still further, and has had a lasting impact. Three-quarters of families surveyed by the Disabled Children’s Partnership were experiencing delays to routine appointments and treatments during the pandemic, and six in 10 families were still experiencing these delays in April 2021.’

Disruption has hit every facet of children’s healthcare. The British Dental Association (BDA), for example, revealed that from March to May 2020 more than 50,000 children in England had surgery postponed. It pointed out that tooth decay is the number one reason for hospital admissions among children aged five to nine in England (BDA, 2020).

Across the four nations

The picture of longer lists and lengthier waits is also repeated across the four nations. In Scotland, waiting times in general have risen for diagnostics, inpatient and outpatient appointments – there were 37% more new outpatients waiting for an appointment at the end of March 21 compared with a year previously. Of the 354,782 waiting, 51.9% had been waiting more than 12 weeks – double the percentage as at the same time in 2020 (Scottish Parliament Information Centre, 2021).

In Wales, the total number of patients referred but waiting for treatment has risen each month since May 2020, to 595,272 at the end of April 2021. This is the highest since comparable data was first collected in 2011, and 34.8% higher than in April 2020 (Welsh Government, 2021).

And Northern Ireland’s waiting lists are the worst of any UK region, with more than 330,000 patients waiting for their first consultant-led outpatient appointment; more than 110,000 waiting for inpatient or day case treatment; and some 130,000 waiting for a diagnostic test (Department of Health, 2021).

Again, children are being impacted: between March 2020 and March 2021 the percentage of children on the list waiting more than a year for their first consultant outpatient appointment doubled from 22% to 41% (Information Analysis Directorate [IAD], 2020a; 2021b).

And the proportion waiting more than a year for inpatient/day case appointments under a paediatric speciality increased from 40% to 69% over the same period (IAD, 2020b; 2021b).

Koulla Yiasouma, NI commissioner for children and young people, says waiting times are ‘devastating’ for families there.

She says: ‘With one in four people in Northern Ireland now on an NHS waiting list, the problem has become so big that children have got lost in it. A year on a waiting list is such a huge proportion of a child’s life in which all the things they are supposed to be doing are interrupted – their development, education, family life.

‘And when you think about conditions such as scoliosis, for example, there is a time-critical window in which children need surgery and treatment – it is a very big worry if children are missing that window because of the list. We have heard of families paying privately for scoliosis treatment, going to places like Turkey for surgery. We also know many parents are now paying privately for autism assessment because the wait is too long.

‘ENT and dermatology have long waiting lists too. When you have a child who is poorly, that impacts on the whole family too, siblings in particular.’

Professor Sally Holland, children's commissioner for Wales, says: ‘Neurodevelopmental [ND] waiting lists have also continued to be a real worry throughout the pandemic, and here in Wales a lower proportion of referrals are accepted for face-to-face assessments than in the rest of the UK.’

She continues: ‘While I’m encouraged by some recently developed and exciting new plans to transform our ND services, too many children are currently waiting for specialist assessments.’


A closer look at Child and Adolescent Mental Health Services (CAMHS)

With between one in six and one in seven UK children having a recognised mental health problem, pre-Covid-19 waiting lists had already been ‘unwieldy’, with ‘a lot of unmet need’, says Professor Steve Turner of the RCPCH. Covid-19 made things more difficult, as well as exacerbating anxiety for children during the pandemic.

But Steve indicated that children and young people had found remote video consultation and assessment ‘very acceptable and very successful at delivering socially-distanced care’.

NORTHERN IRELAND

Numbers waiting longer than the nine-week target period fell from over 700 in March 2020 to 174 in October, before beginning to rise again, with 374 patients waiting longer than nine weeks in January 2021.- Health and Social Care Board, 2021

WALES

In January 2020, less than 20% of patients were waiting for a first appointment over the four-week target, rising to 52.9% in Jan 2021 – but in March 21 that figure was down to 24%, compared to 31% a year previously.- StatsWales, 2021

SCOTLAND

The number of children waiting over a year to begin treatment was over 2000 at the end of March 2021, a record high and more than double the figure from a year before.

Of all the 11,007 who were on the waiting list at the end of March this year, more than half had been waiting longer than 18 weeks, compared to 44% a year before.- Public Health Scotland 2020; 2021

ENGLAND

Last year, just 20% of children referred to services started treatment within four weeks, with 6%34,550 children – waiting longer than 12 weeks.- NHS Digital, 2020

Over the past year both urgent and routine referrals have almost doubled for eating disorder treatment in England. The number of patients waiting more than 12 weeks to begin treatment is at a five-year high, having risen from 45 in the last quarter of 2019-20 to 278 in the same period in 2020-21.- NHS England, 2021b


What does it mean for children and families?

Professor Steve Turner, registrar at the Royal College of Paediatrics and Child Health (RCPCH), says that while the child healthcare community across primary and secondary adapted well during the pandemic – developing ‘very good systems of provision for ongoing care’ – ‘services have been substantially redesigned.’ This may have meant some patients met problems with gaining face-to-face access to services, and operations for children had been cancelled and delayed, as they have across the NHS.

Steve adds: ‘Surgical waiting lists are painfully long and it will take a long time to catch up. Additionally, specialist tests that children may need – a brain scan or endoscopy – things that would have been routinely done pre-Covid have been impacted too, which is terribly frustrating and worrying for parents.

‘Clearly the most pressing cases will be prioritised, but an operation considered non-urgent, such as a hernia treatment or a tonsillectomy, will now have a longer wait.’

While there would be ‘delay in some investigations and a likely delay for operations that aren’t urgent’ compared with pre-pandemic waits, he says parents ‘shouldn’t expect there to be an additional delay in getting a child seen by a senior decision-maker for a diagnosis’, and could be assured that ‘if investigation and treatment is needed to be done now it will be done’.

Flattening the curve

But as Barbara Evans, a community nursery nurse in the East Midlands, points out, it is not only waiting list delays that are a concern, but delays in referral and treatment due to changes in the way services were provided during the pandemic.

‘Anecdotally, we’ve heard about appointments being cancelled or delayed, and parents waiting a long time to see a paediatrician, and then it’s a phone call – which might be fine initially, but isn’t the best way,’ says Barbara.

‘There are subtleties you can only see face to face, and we are now seeing a lot of speech delay and some developmental delay that wasn’t picked up before.

‘Hearing tests also stopped for a long time, and we know hearing issues can impact speech, behaviour and many things.

‘For a child, any delay in diagnosis and treatment is significant. The right intervention early on can flatten the curve of that trajectory, but the longer you wait, the bigger the development gap gets and the worse it is in the long term.’

Janet Taylor, CHPVA Executive chair, also points to a temporary drop-off in referrals in some areas, as parents have stayed away, either through fear or a reluctance to burden the NHS at that time, which created a ‘backlog of things that haven’t been picked up’.

The other aspect, she says, is that ‘many of those people on the waiting lists for routine surgery, for example, or cancer treatment, are also parents and grandparents, and that unmet need creates a great deal of additional stress for their families too, which is important to be aware of’.

In addition, there is the increasingly well-documented impact of lockdown on the mental health of children and young people, with issues potentially going missed as children have been out of school.

Where do we go from here?

Moving forward, Steve says it is vital that paediatric waiting lists are factored into recovery plans. ‘Across the four nations, chief executives have very much encouraged a focus on adult cancer services and waiting lists for operations, but I think it is also important to make special mention of waiting times for children.

‘We’re not saying children are more important, but they are in a critical window for development and education, and a delay in being processed through health services will potentially have a much greater impact on a child than an adult, particularly if that child is missing school as a result.’

‘Children want to know how we can help them, not just to get back to normal, but to do even better in future. Improving services can be something we deliver to thank children for their sacrifices’

Deborah says: ‘We need resources to bring down the backlog, and it’s also an opportunity to innovate – we can’t catch up just by doing more of what we were doing before. But we must also be honest about how long it will take to get things better – it’s going to take several years. We need to acknowledge that and support people who will be on waiting lists for long periods of time.’

‘The pandemic has further exposed social and economic inequalities between children’s experiences and access to services,’ notes Sally. ‘There needs to be a focus on ensuring that children who may have missed out more during the pandemic are supported to access specialist services they need. This includes disabled children, those living in poverty, and children from black, Asian and ethnic minority backgrounds.’

Rachel adds: ‘We should thank all the NHS staff for their work over the last year, not just in fighting Covid, but in trying to maintain a health service for children and young people – from the paediatricians helping children manage long-term conditions as the world around them was turned upside down to the health visitors who continued to go into homes despite all the risks, to help protect children at risk.’

Rachel concludes: ‘As we come out of the pandemic, children will want to know how we can help them, not just to get back to normal, but to do even better in future. Improving services can be something we deliver for children to thank them for the sacrifices they have made over the last year.’

What Can CPs Do?

Janet says community practitioners have a vital role in that support for families: ‘You have the situation where a child might have significant behavioural issues, for example, and needs to be referred to the consultant paediatrician and the multidisciplinary team – but can’t be seen for six months, and there is nowhere they can go in the interim, which creates an enormous amount of stress for that child, their parents, their siblings.

‘That is where public health nurses – health visitors, nursery nurses, school nurses – are providing the glue in the system that holds these families together while they wait for that appointment.

‘They are someone that parents can go to for advice and coping strategies, who can help them understand what’s happening, and link them with sources of information and support, such as the NSPCC or local parenting groups. Even just listening helps.

‘We can’t wave a magic wand, but we can provide that therapeutic relationship and support families where we can.’


References

British Dental Association. (2020) We need urgent action on tooth extraction backlogs. See:  bda.org/news-centre/blog/Pages/We-need-urgent-action-on-tooth-extraction-backlogs.aspx (accessed 28 June 2021).

Department of Health. (2021) Oral statement to the assembly by Health Minister Robin Swann. See: health-ni.gov.uk/sites/default/files/publications/health/doh-min-statement-150621.pdf (accessed 28 June 2021).

Health and Social Care Board. (2021) HSC Board Performance Report – 2020/21 (Month 10 – January 2021). See: hscboard.hscni.net/download/PUBLIC-MEETINGS/HSC%20BOARD/board_meetings_2021/march_2021/ITEM-05-HSC-Board-Performance-Report-M10-2020-21-final-11.3.21.pdf (accessed 28 June 2021).

NHS Digital. (2020) Waiting times for children and young people's mental health services, 2019 -20. See: digital.nhs.uk/data-and-information/supplementary-information/2020/waiting-times-for-children-and-young-peoples-mental-health-services-2019---2020-additional-statistics (accessed 28 June 2021).

NHS England. (2021a) Statistical Press Notice, NHS referral to treatment (RTT) waiting times data, April 2021. See: england.nhs.uk/statistics/wp-content/uploads/sites/2/2021/06/Apr21-RTT-SPN-publication-version-54792.pdf (accessed 28 June 2021).

NHS England. (2021b) Children and Young People with an Eating Disorder Waiting Times Timeseries Q1 2016-17 - Q4 2020-21. See: www.england.nhs.uk/statistics/wp-content/uploads/sites/2/2021/05/CYP-ED-Waiting-Times-Timeseries-Q4-2020-21.xls (accessed 28 June 2021). 

Information Analysis Directorate. (2020a) Northern Ireland Waiting Time Statistics: Outpatient Waiting Times Quarter Ending March 2020. See: health-ni.gov.uk/sites/default/files/publications/health/hs-niwts-outpatient-waiting-times-q4-19-20.pdf  (accessed 28 June 2021). 

Information Analysis Directorate. (2020b) Northern Ireland Waiting Time Statistics: Inpatient and Day Case Waiting Times Quarter Ending March 2020. See: health-ni.gov.uk/sites/default/files/publications/health/hs-niwts-inpatient-waiting-times-q4-19-20_1.pdf (accessed 28 June 2021).

Information Analysis Directorate. (2021a) Northern Ireland Waiting Time Statistics: Outpatient Waiting Times Quarter Ending March 2021. See: health-ni.gov.uk/sites/default/files/publications/health/hs-niwts-outpatient-waiting-times-q4-20-21.pdf  (accessed 28 June 2021). 

Information Analysis Directorate. (2021b) Northern Ireland Waiting Time Statistics: Inpatient and Day Case Waiting Times Quarter Ending March 2021. See: health-ni.gov.uk/sites/default/files/publications/health/hs-niwts-inpatient-waiting-times-q4-20-21.pdf (accessed 28 June 2021).

Ofsted. (2021). SEND: old issues, new issues, next steps. See: gov.uk/government/publications/send-old-issues-new-issues-next-steps/send-old-issues-new-issues-next-steps#families-experiences-during-the-pandemic (accessed 28 June 2021).

Public Health Scotland. (2021) Child and Adolescent Mental Health Services (CAMHS) waiting times. See:  https://publichealthscotland.scot/media/8012/2021-06-01-camhs-waiting-times-report.pdf (accessed 7 July 2021).

Public Health Scotland. (2020) Child and Adolescent Mental Health Services (CAMHS) waiting times. See: https://www.publichealthscotland.scot/media/4116/02-06-2020-camhs-report.pdf (accessed 7 July 2021).

Scottish Parliament Information Centre. (2021) Indirect health impacts of COVID-19 – NHS performance and waiting times. See: spice-spotlight.scot/2021/06/17/indirect-health-impacts-of-covid-19-nhs-performance-and-waiting-times/ (accessed 28 June 2021).

StatsWales. (2021) Percentage of sCAMHS patient pathways waiting for a first appointment within target time by month and grouped weeks. See: https://statswales.gov.wales/Catalogue/Health-and-Social-Care/Mental-Health/specialist-child-and-adolescent-mental-health-services-scamhs/first-appointment-waiting-times/percentageofscamhspatientpathwayswaitingforafirstappointment-by-month-groupedweeks (accessed 28 June 2021).

Welsh Government. (2021) NHS activity and performance summary: April and May 2021. See: gov.wales/nhs-activity-and-performance-summary-april-and-may-2021-html (accessed 28 June 2021).

 

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