It was the most painful of the emails that I've received over the past week. It began, like dozens of others, thanking me for raising issues about the state of healthcare in Britain that were too often ignored. It was sent by the parents of a profoundly disabled child, who needed round-the-clock care like my own daughter. Following a medical accident, they were advised to institutionalise their son, but instead "converted their home into a hospital" and raised him at home for more than a decade.
They thought their story "was probably no different to thousands of other families who care for such profoundly injured children, other than we did not have any other children. A decision we now very much regret." They found the support offered by the health system "lurched from wonderful to Third World" – but it was their teenage son's death that highlighted the systemic flaws in such a horrific light.
In calm, precise words, they told of how bureaucratic tussles and breathtaking incompetence contributed to the death of their child. Of how in the midst of the Home Counties it took five ambulances and 12 hours to get him seen by a hospital registrar, of how they eventually had to put on surgical gloves to help with a surgical procedure, such was the shortage of nurses. Then they were taken to one side and told the delays meant their only child would not survive.
"We watched him die. For eight hours we fought with staff, nearly physically at times, as they refused to shut off monitors and alarms. In an open ward we watched as our son's eyes doubled in size. His body, his hands, his face ballooned with fluid. Finally we watched as he cried out for us to help him, his every breath a little shallower than the one before. He drowned in front of us over a very, very long day. We still see the fear in his face."
A terrible story. But far from the only one. After writing a 3,000-word essay on the National Health Service last week, based upon traumatic experiences as the parent of a profoundly disabled child, the emails poured in. Many from parents of children with disabilities, who had endured similar chaos and incompetence. Others from sons and daughters, angered by the treatment of their parents, and from pensioners, dismayed by how Aneurin Bevan's dream had turned into a personal nightmare. They told of mistakes, missing files, in-fighting, poor management, bungling bureaucracy, dirty hospitals, uninterested staff.
"Thank you for sharing your article," wrote one mother, a former NHS scientist. "I have been in a similar boat for six years of incompetence, laziness, carelessness, political in-fighting, suffering careerists and cowards. I lose my voice when I have to talk about it.
"When my daughter collapsed paralysed at the feet of a GP, he crossed his arms and sarcastically bade her to stand up, later telling me he knows what girls this age are like." The teenager was diagnosed with a rare and crippling spinal condition, her case referred to world experts in France. It got little better: "The departments of neurology and radiology argued for six weeks over whose budget should cover the blank CD upon which to send the scans and arteriograms to Paris."
Then three months ago, a chest consultant discharged her daughter and "sent her home to die. They took her palliative medicines out of my hand, took her ventilator, called a taxi and advised me to call the GP when we got home. No consultation with her neurologist. No discharge letter. No replacement medicines for her pain and anxiety. No prescription. He disappeared just after giving me the bad news. Thank God she recovered."
Despite such upsetting experiences, this mother went out of her way to praise other staff, such as a supportive new GP and the hospital secretary who eventually supplied the blank disk herself and sent it off to Paris. "But I am still busy trying to head off disasters and help my girl enjoy her life," she concluded.
Everyone recognises the dedication of many staff and the difficulties of delivering healthcare to millions. But one thing seemed to unite respondents: the idea that the NHS should be sacrosanct and above criticism. "I am confounded by politicians thinking the NHS is a sacred cow that the population does not wish to see touched," wrote one woman. "I am sure the vast majority would prefer appropriate reform, and would support any party that said so."
This woman had been left "traumatised" by her brushes with the health service in a series of different hospitals. Her own scans had been lost. Her father, disabled following a stroke, was left without food for a fortnight. One aunt went into a hospital with a broken leg only to die of MRSA. Another went in with a perforated ulcer, spending three months in hospital before also dying of MRSA. "I regularly cleaned her area," she wrote. "On one occasion I found a ward sister callously asking a very upset aunt about her assets as she would have to go into a nursing home, despite having no idea what the family would provide. I can't remember having been so angry."
There will, of course, always be horror stories in any health system. More came out yesterday in a report by the Patients Association, which revealed it had received "hundreds and hundreds" of shocking cases. And equally, many patients receive exemplary treatment that we never hear about. But what has infuriated my family over 15 years' caring for our daughter, and clearly so many others, are those niggling inefficiencies that make the NHS such a trial of endurance, especially for those most in need of help. "I have to keep chasing up letters and appointments," came a plaintive email from the father of a boy with a genetic heart problem. "Important test results seem to disappear and I end up thinking: what is the point of it all?"
One ex-MP told how he was at a big teaching hospital last week. "I see you have problems with your liver," said the doctor. "In fact, the hospital had filed another guy's papers with mine."
Many respondents compared the British system unfavourably with their experiences abroad in Europe, in the United States and even in China (where there is speedy service, smiling staff and the medicine tastes better, evidently).
Mark Possemiers, a lawyer in Spain, said he had lived in several countries but the Spanish system was the best he had encountered. "I have nothing but praise for it. It works without undue delays, you make appointments on the internet or by text message and the doctor has your history on his computer." He added that even after an operation that was free, patients received a letter detailing the cost to underline the expense of healthcare. It is clear there are lessons to learn from abroad.
An Australian whose children have the same rare genetic mutation that afflicts my daughter pointed out the savings in both financial terms and trauma if new genetic tests were used more extensively. "Before they are diagnosed, children with a CDKL5 disorder are treated with very expensive and dangerous drugs that don't control their seizures and are the cause of much avoidable distress to them and their families."
When I last wrote about the NHS four years ago, I received a barrage of criticism from those working within it. Not this time; something significant has changed. The first email was a short, sharp note of congratulation from a Yorkshire GP; in its wake came scores more from doctors, nurses, secretaries, carers, even those loathed managers. All sympathised with my family's plight, engaged with the argument and supported the call for more open debate. "Like you, I am a fervent admirer of the NHS. That's why we must make it healthier," said a plastic surgeon.
Quite rightly, several doctors pointed out how much money was wasted by patients failing to turn up for appointments or misusing services, such as calling ambulances when they could have taken a taxi. This needs to be tackled; missed appointments alone are estimated to cost the NHS more than £600m a year.
However, one GP added: "I'm always surprised how my colleagues sometimes moan about patients, especially those who wish to see us at the weekend. A cousin of mine works for Southwest Airlines. On each of their paychecks it says 'Pay provided by our customers'. That's being customer-centred. We should find a suitable line for NHS paychecks."
Inevitably, managers came in for much of the flak. "There are still many inspirational, caring and supportive staff who go way beyond their call of duty," said an experienced nurse, now working in a care home. "But this is changing as the NHS reels out a manager for a manager, who goes to a meeting for a meeting for a meeting. A costly waste of time."
"I and many colleagues have left the NHS because of so much listed in your article. We are the older nurses with a wealth of experience, not just acute intensive-care nursing but the bedside care of supporting bereaved, sick, sad and lonely people."
Her complaint was echoed by doctor after doctor. "Your diagnosis of poor management is obviously true, probably down to the poor salaries paid to middle managers," wrote a professor at a London teaching hospital. "There are efficiency savings to be made but most managers are not up to it." Another, however, did question who would want to be a manager now, given the opprobrium they attract.
None of the professionals disagreed that there were systemic flaws in the system. One consultant blamed a lack of resources, arguing that extra money was making a big difference but also bemoaning how much had been wasted on the "scandalous" new GPs' contract, and elsewhere. Some were advocates of choice and competition, while others worried that it might work well in cities but do little in sparsely populated areas. But clearly, health-service staff want more responsibility and more freedom to innovate and improve. They don't fear transparency. They know there are problems, they know some patients are being failed, and they desperately want to provide better care.
Several attacked an over-centralised system, which has seen local decision-making eroded and the evolution of a top-down service dictated by Whitehall. Patricia David, a management development and training expert who became involved with the Scarborough and Bridlington NHS Trust, blamed this for many problems she encountered – which were so severe that theatre nurses went to public meetings to discover what was happening at their hospital and the trust has since had three chief executives in three years.
"We were prevented at every turn and possibility explored by the centralised bureaucracy. Hospitals are not allowed to recruit anybody independently. All appointments go through the Appointments Commission, who first and foremost recruit those with a track-record in the NHS rather than those with the skills needed at the front end locally."
Another person who wrote in was Titus Alexander, head of campaigning at Novas Scarman, a social justice charity that works with the disadvantaged. "The people I work with in community development are constantly banging their heads against brick walls of badly run services. It is not the staff – many do their utmost, but are constantly frustrated by the system. The system is not working. It is causing suffering and costing lives and money, with enormous sums being wasted."
The NHS is a cherished institution. But it can no longer remain immune to such heartfelt anger from those that need it most. A relic of a bygone age, it needs drastic surgery to ensure more flexibility, more freedom for innovation and more competition. It is a question of management, not money – it needs better managers, more transparency and less proscriptive targets. And above all, it must be geared around needs of the patients.
This weekend, having been deluged with kind messages, I feel more heartened about the future of the NHS. Yes, many patients feel betrayed by its failures, and horror stories abound. And yes, many staff feel frustrated by its flaws. But it is clear there is a pent-up desire for change, a readiness to take risks to improve and reform the National Health Service. For this is the only way to ensure as few people as possible have to suffer from the mistakes that have cursed too many lives already.
The Doctor's Viewpoint
Service abuse wastes much time and money. Healthy 22-year-olds call ambulances for sore throats at 2am as it's a free ride to hospital. Others book hospital transport for their appointments claiming leg pains, only to be seen merrily walking around the shops afterwards as they wait for their free lift home.
But one of the biggest obstacles to improvement is that the low-paid middle managers, usually not from a medical background, will block any change suggested by clinicians, because they lack the clinical knowledge required to realise that the proposed change poses no, or sometimes less, litigation risk.
For example, cataract surgery is the commonest operation, with 300,000 performed per year. Throughout the country, junior doctors hand-write the risks and benefits of each of these operations on a consent form. The information is essentially identical. You would have thought we would have a pre-printed form, rather than the scrawl of a rushed doctor. The Royal College of Ophthalmologists created such a form in 2004 – but most NHS Trusts blocked its introduction. It took me 12 months lobbying to introduce a pre-printed form to my last hospital. Now I have moved to another one, and I'm handwriting identical forms again.
Even experienced consultants now have very little say in how their department is run. Many have no office and struggle with old equipment. Meanwhile, managers are busy trying to translate hospital signs and leaflets into all the local languages, struggling to meet microbiological "targets" (on which their jobs depend), and producing amazing amounts of PR and propaganda for their Trust websites in their push to become a "Foundation" Trust.
The divide between clinicians and managers is widening. Many junior doctors will never see their line manager or chief executive on the wards or in clinics, let alone have an opportunity to suggest even basic improvements.
The author is a surgical trainee in a London hospital
The Nurse's Viewpoint
I have spent a lot of time discussing the problems of the NHS with colleagues and we came up with quite a few reasons for why it's in the mess it is. Without doubt, things began to go wrong when managers were brought in from the business world, with no knowledge of patient care and, sometimes, very uncaring – certainly where staff are concerned. They seem to be totally target driven and out to prove that they can be the most efficient and cost effective but to hell with the human side of things.
Then nurse training became university-based. This was a ridiculous idea. Nursing is a hands-on, common-sense type of profession, not something taught in a university. We had student nurses three months away from final exams asking how to make a bed. I was taught that cleaning the bed and locker after a patient's discharge was all part of nursing care – and MRSA was unheard of. We were taught also to help feed those patients who couldn't feed themselves – elderly people weren't left to starve.
The decline in staff morale happened gradually, but more rapidly over the last decade. Firstly, staff feel they are not always able to give the level of care they would like to because of restrictions placed on them by management. And secondly, they don't feel valued anymore. Wastage is something that should be addressed . I have worked in the private sector where everything you use for a patient has to be written down because they, or their insurance company, are charged. In the NHS, so much is thrown away without a thought.
I also worked in a large outpatient department that ran clinics in several specialities. There were many occasions when patients turned up for appointments only to be told that they had been cancelled. Although there were far more occasions when patients just didn't turn up and didn't have the courtesy to ring in. The Patient's Charter is full of the patient's rights, but what about their responsibilities?
The author has spent three decades as a nurse