As the 70th Anniversary of the NHS approaches, many of us – whether spinal cord injured (SCI) people ourselves or our loved ones – remember the debt of gratitude we have towards the NHS. With quiet dedication and great skill, our surgeons, nurses and other health professionals have put many of us back together again – literally and in full or in part – and helped us on our journey towards a fulfilled and independent life after injury or diagnosis.
Unlike the health service in some countries, our NHS provides assurance to SCI people. The fear of future illness or further disability is not automatically accompanied by abject poverty and forced reliance on loved ones. It is hard to imagine the devastating ‘double whammy’ of a spinal cord injury that is closely followed by an unaffordable demand for several hundred thousand pounds of healthcare bills or where there simply aren’t facilities for love nor money.
However, like an elderly and much loved relative, affection and respect for the NHS is partnered by concern for the future. A robust health service is not guaranteed and for every story of triumph and success, there seems to be a story of failure and callous ineptitude. Gosport, Mid Staffs – names that are forever tainted by the uncovering of neglect, hubris and a “keep your head down” mentality.
As SCI people we have more interest than most in ensuring that the founding principles of the NHS are more than just words on some yet to be carved memorial. “Meet the needs of everyone”, “free at the point of delivery” and “clinical need, not an ability to pay” are as important to us today as they were to our grandparents who knew all too well the fine line of uncertainty between health and hardship.
Life expectancy after a spinal cord injury is now broadly the same as for people who have not been injured. With the right care and support, people return home after rehab, re-establish a new norm with their family, get back into work, reintegrate with their communities and lead a fulfilled life.
And much of that is down to our NHS. Yet, as always, more needs to be done. In an organisation that is often sized alongside the Indian Railways and the Chinese Red Army, there will always be institutional as well as individual shortcomings. That so many SCI people do not have confidence that their ongoing care needs will be met when admitted to a non-specialist clinical setting is nothing short of scandalous. Our Freedom of Information survey last year showed that over 40% of Trusts have neither guidelines nor policy on intimate digital bowel care for SCI people – and there’s no excuse in our data-driven age that such policies can’t be widely shared and adopted. Delays in getting into a specialist spinal cord injury centre for life changing care and rehabilitation are almost as long as the delays to get out, given the lack of accessible housing, the crisis in social care and extensive failures in NHS Continuing Healthcare.
The recent round of funding commitments for the NHS from Number 10 are, of course, welcome. But it’s a widely held view that such investment will only make up the shortfall from previous years and not create a truly 21st century healthcare – digitally-enabled, responsive, integrated, and patient-centred.
Even if the SCI service were running at full efficiency – and we know it isn’t – NHS England acknowledge that we’d still need an extra 54 specialist spinal cord injury rehabilitation beds to cope with demand from newly injured patients. And to get the money for those beds, we’re going to have bid against other, equally pressing, health care priorities. So when was it alright to pitch one set of health care priorities (for which we can re-read as one set of vulnerable and sick patients) with another?
It’s not just the need for more beds; we need to train more specialist nurses too. Difficulties in recruiting nursing staff are now leading some centres to consider closing desperately needed SCI rehabilitation beds from an already small pool of beds.
So those much cherished founding principles are just as relevant today as when the NHS was created in 1948. And as we campaign for a fair deal for SCI people – our decision makers would be wise to remember those principles.
Dr Rupert Earl
SIA Chair
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