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  • A child left waiting for ‘urgent’ surgery, a blog by Clare Rayner


    PatientSafetyLearning Team
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    Summary

    In this blog, retired Occupational Health Doctor, Clare Rayner draws on personal experience to illustrate the impact delayed surgery can have on a patient.

    Clare’s insights as a physician, patient and relative lead several questions around risk management for patients as the NHS deals with the pressures of the surgical backlog.

    Content

    I have a young relative who contracted a bone infection in early childhood, leaving her with a badly damaged ankle. Now 15 years old, she has been through several operations to manage the effects and requires regular reviews.

    When the Covid-19 pandemic hit, her mum was unable to get an appointment for her review, despite a worsening in mobility and pain. She was struggling to physically get around her school and, despite her admirable stoicism at such a young age, was clearly in a great deal of constant pain.

    She was finally seen in May 2021 by a surgeon she had not met before. By that point, the damage was so severe he decided there was no alternative but to operate to fuse the ankle. She was deemed ‘urgent’ and told that she would have surgery during the summer, timed also to support her entry into her exam year.

    She was given a date, but the operation was cancelled. The reason given? That the surgeon only does one operating list per month, and he was not allowed to undertake the operations until there were enough patients to fill his list.

    My relative was left in disbelief and felt incredibly let down, protesting “but the surgeon promised me”. She trusted the people caring for her.

    The surgeon acknowledged again that she is an urgent case and reassured her that they would get on to it. But we heard nothing for weeks. Our calls were answered by receptionists; we were unable to talk with a clinician. Sadly this blow is now negatively impacting her mental health.

    Eventually, after writing to the consultant outlining concerns around her daughter’s continued deterioration, her mum has been given a new date for the operation, told only that it “might happen”.

    The young girl is now unable to walk and there is a very real possibility that lengthy delays to her surgery will continue to lead to progressive disability.

    More questions raised than answered

    I am sure our experience, upset and frustrations as a family will resonate with others. For me, it has also raised several questions around patient safety:

    • If her family hadn’t tenaciously pursued her follow-ups, where would she be now?
    • Why is a surgeon only doing one operating list per month in the midst of a backlog crisis?
    • If a child deemed as needing urgent surgery can get this easily ‘forgotten’ in the system, how are people being prioritised?
    • Surely a young patient at risk of progressive disability should be better managed than this to reduce the possibility of avoidable harm? The consequences of which might not only impact her physical and mental health but also her future work opportunities. There are also significant resource implications for the NHS and community care.
    • If a clinician is deeming a patient as needing urgent surgery, who is making the decision to delay that? Do the surgeons have any control?
    • When a patient is on a waiting list for an operation, who do they contact if their condition worsens? I know that GPs are having many referrals sent back so who is taking responsibility?
    • How are hospitals communicating with patients about the backlog and delays to surgery? Where is the transparency that explains how people are being prioritised?
    • If there is no capacity to operate, what measures are being put in place to enable patients and families are kept informed?

    Final thoughts

    There seems to be a fortress mentality at the moment, with services managing demand by blocking contact and subsequently shutting the door to patient concerns. These barriers will inevitably negatively impact on those who already experience the poorest outcomes; widening inequalities further. It is vital we do not allow that to happen.

    Clinical auditing is more important than ever as we resume services and deal with the surgery backlog. We need to really understand where the risks lie to patients to mitigate the most serious of harm and inequities than can occur as a consequence. This cannot happen if patients are not able to engage in their care.

    Those waiting for surgery must, at the very least, be communicated to transparently with systems put in place to encourage dialogue with a named care lead so that deterioration can be safely monitored.  The provision of safe care must not rely on patients being able to ‘join the dots’ or consistently chase things up within a complex and often fragmented system.

    Sadly, there appears to be a bureaucratic focus on managing numbers that is superseding clinical judgement as people are prioritised. We need to understand who is making the decisions and how, and to have some honesty about which patients will not be at the top of the list.

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    Related reading

    Tackling the care and treatment backlog safely: Part 1

    Six patient safety priorities for the new Health Secretary (a blog by Helen Hughes, Chief Executive of Patient Safety Learning)

    Share your experience

    We want to hear from patients, healthcare workers and families about their experiences of the care and treatment backlog.

    Have you or loved one experienced delays in your care and or treatment? What is the impact?

    Join the conversation here

    Perhaps you’re a clinician who can help us understand the challenges or share examples of good practice. What support do staff need in dealing with the backlog in a patient-centred, safe way?

    Or perhaps you are a clinical command manager, receptionist or bed manager with a different perspective to share on the patient safety challenges?

    You can get in touch with us at content@pslhub.org or share your thoughts in the comments below. You'll need to sign up to the hub first, it's free and easy to do. 

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    This 'fortress mentality' & similar attitudes have been around for a long time. I'm a strong supporter of the NHS and its core principles. At the same time, having worked in the private sector, for a US company & in Australia, I can also see why people raise concerns about the downsides of so-called 'socialised medicine'.

    It's the often mentality that's the problem in my opinion, and this can be reinforced by the leadership and the surrounding bureaucracy. 

    Here's an example from some years ago, which I think is still relevant:

    I was doing a review of waiting list administration in an NHS  hospital that had a military wing. The civilian consultants had very long waiting lists, the militarily consultants did not. I assumed that was because they had fewer referrals to manage. When I looked into it this, I found it was not the case. So I asked one of the military consultants what they did to successfully manage their waiting list. He said 'it's simple, I look through the list myself every week and if I have a backlog or urgent referrals to be seen I add a clinic and do what's needed'.

     

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