Last summer, my family and I were faced with an unexpected health problem. After months of intermittently working on a laptop at home and doing phone triage as a GP, my husband developed a pain in his neck.
So severe was the pain, that despite trying to go into his work as a GP partner, he was forced to concede he couldn’t safely work, and took a week off. He then managed to struggle through his last few days at work before our planned summer holiday.
I remember our conversations. I suggested he might be wise to attend A&E to see if he could get an MRI before our ferry to France: ‘It’s not normal, this level of pain. If you really think your hand is weak and numb, you need to have a scan’. ‘No’, he insisted, ‘it’s probably just my shoulder. There’s no way they’d scan me at this point.’
So, we caught the ferry, spent a fortnight with him lying down, and came back to the UK in much the same state. Speaking to his excellent GP on our return, an urgent MRI was requested. This came through a week or so later, followed by the report which showed spinal cord compression in his cervical spine from a massive disc bulge, requiring urgent treatment.
Knowing that, in August 2020, the NHS was struggling to manage a backlog of surgery, he decided to book a private outpatient with a spinal surgeon.
At this appointment, he was advised he vertebral fusion surgery as soon as possible, to prevent any further damage to his spine. If he didn’t have the surgery, he would be paralysed within the year, if not sooner.
Fortunately, the surgeon was operating again, after six months of not having regular lists due to Covid. My husband was put on the first list.
Alongside his private referral, he had in parallel been urgently referred to a spinal surgeon on the NHS. Eventually, the appointment came through, a full month after his operation. We don’t know what the wait for surgery would have been after that appointment.
Thankfully, his operation was successful – in that the disc was removed, the vertebrae fused, and the damage to his spinal cord stopped in its tracks. Unfortunately, the damage already done has left him with chronic pain which flares up upon minimal exertion. My once active and energetic husband is unable to carry our children, unable to mow the lawn or take out the bins (you can hear my pain), and presently unable to work as a doctor (computer work for any length of time, and sitting are particularly difficult). I have to carry anything heavier than 5 or 10kg, and am entirely responsible for any physical tasks around the house and garden.
He has lost dexterity in his hands, and is weaker, but can still cook (a passion of his), and drive (essential in our rural area). Sleep is very disturbed, and we cannot reliably drive further than an hour. We frequently cancel attending family gatherings or any planned activities, as his pain can be hard to control and cannot be predicted.
He has tried every class of painkilling medication. Turns out The Verve was right: the drugs don’t work. He’s had physio, seen a chiropractor, is having acupuncture. Regular walking calms and soothes him, but he is not one for mindfulness or Tai Chi. His mood has moved from hopefulness, to despair, to tacit acceptance. In the midst of this is the guilt and shame involved with being presently unable to work, aged 39, and looking fit.
But, how much worse this could all have been. Without timely treatment, my fit and healthy husband would certainly have been wheelchair-bound and incontinent.
We find ourselves in a scenario in the UK where millions are waiting for outpatient appointments or surgery. The problems were building before Covid, but have been dramatically accelerated. My family knew how to navigate the system, spotted the signs early, and could afford private appointments. Many will be less fortunate.
When a young father with spinal cord compression is not offered immediate or rapid treatment on the NHS, it is a clear signal the system is failing to meet even the most basic standards of care.
We simply must not turn a blind eye to the delays in the NHS. To do so, is to ignore lasting, avoidable, sometimes catastrophic, harms to millions of families like mine. Shouldn’t we demand better for our patients?
Dr Katie Musgrave is a newly-qualified GP in Devon and quality improvement fellow for the South West