The NHS is, of course, of great benefit and value in our country and does amazing work. Near miracles are performed every day. We have leading edge processes and first-class front-line workers but nonetheless many patients are being short-changed within a system that does not function in a coordinated or compassionate way. It is failing us.
As you know, David has Parkinson’s Disease, and alongside this many other of the uncomfortable and disturbing symptoms that interrupt quality of life as we get older. It breaks my heart to see the endless flow of NHS appointment letters arrive on his desk, some with appointments for high blood pressure (a dangerous condition) for September 2021 (surely you cannot justify a wait of a year?), others giving him a ‘pre-assessment appointment’ after the date of the process for which he is supposed to be having that pre-assessment. It is cruel, as he has to spend so much time then trying to rearrange said appointments, or chasing up results, but only getting through to robotic administrative staff who say they don’t have the papers, or can’t help him.
He feels alone and lost within a system that does not function as it should, nor care. And how many others around the country are in similar situations, many of them, like David, with serious conditions that require action? I suspect very many. Each department seems to operate in a vacuum, as if one part of our body does not relate to another. I have listened for many years now to David making calls to some NHS department or another and getting either no reply (endless ringing tone or musac) or the monotone voice of some administrator who, quite frankly, seems to care nothing for his wellbeing. “I don’t have those records … It’s not my responsibility … you will have to ring x department…” and so the merry-go-round goes in circles again. And, in the meantime, David becomes exhausted and despondent.
So who is eventually accountable? All one hears from those who work within the NHS is that they are powerless and victimised and it’s all the Government’s fault, whichever party is in power. As some nurses shared on a workshop we ran many years ago now, when asked what they were good at they replied “we are very good at moaning”. But that doesn’t improve things unless those working within the NHS come up with solutions and make change happen. After all, if some GP surgeries perform really well for their patients, so can other GP surgeries. If one hospital can function well, so can another. It is about leadership, coordination and willpower to make change happen for the benefit of patients.
But the NHS is a sacred cow. We can’t say anything about it without looking thoroughly disloyal, a traitor to the cause. But, I am sorry, we cannot maintain the effectiveness of any organisation or process if we are not willing to analyse – and there is a difference between analysis and criticism – and work out how to do things better.
The UK has experienced a large number of deaths and a large number of excess deaths during this Covid period. It is hardly surprising when it is just about impossible to get to see a doctor. There is no-one there for us. One almost has to bash a door down to get to have any kind of physical diagnosis of a problem that cannot be diagnosed over the telephone. Many people don’t like to make a fuss. Others don’t even realise you can make a fuss or change an appointment that has been issued a year in advance. So people will be left ill and dying at home, feeling isolated and alone, with no-one there to help them. We can’t accept this.
Even in our supposedly world-class hospitals a friend of mine has recently had appalling treatment, told she had a fracture in her left thigh followed by a phone call several days later to say that oh no the fracture was actually in her right thigh, followed by a phone call several days after that to tell her that woops there isn’t a fracture at all and the radiographer reading the scan had made a mistake. Another was told they could go off blood-thinning medication that was actually crucial to him staying alive. Yet no-one seems accountable and the stress and anxiety such mistakes cause is certainly detrimental to people’s health. These problems also add to the huge cost of medical errors and claims.
But sadly one rarely feels ‘held’ by a consultant within the NHS system these days. Young women have thoroughly lonely pregnancies, with no continuity of care, seeing different people each time, having to repeat endlessly – as David has to today – who they are, their histories and problems.
In David’s case he wasted a whole year of ill-health with no action due to lack of continuity of care. He saw five different doctors and only on the last occasion, after months of discomfort, was told that what had been proposed by the first doctor was actually contraindicated. This is a year during which his quality of life was severely interrupted.
Putting people in this isolated state of stress seriously depletes their immune system. For David or other elderly, chronically or severely ill patients to have to be shunted from one department to another, receive appointment letters that make no sense and then have to hang on the line all day not getting a result leaves them depleted, anxious and desperate. It just isn’t good enough. We need to say so and get something done.
Trying to make changes within the NHS is well-nigh impossible, though. It is an enormous and unwieldy organisation with such a huge workforce that makes it almost unmanageable. Over the years I have known many thoroughly competent management consultants and change agents who have tried, over many decades, to tighten up what has been a failing system for years but without success. The NHS is happy to pay ridiculous quantities of money to the major management consultancies and then, having ticked that box, just put the report on a shelf and do nothing about it.
The Government has stipulated that all patients over 75 should have a named doctor but some of today’s GPs don’t seem to buy into continuity of care, or whole-person care. They don’t seem wish to follow in the footsteps of the old-fashioned family doctor, as David himself practised, where you felt one person knew you, your family, your home, and your ailments and would hold you through these periods of sickness.
With today’s technology, patients should be able to hold their own records and all NHS departments should have access to all records at all times. It should be dead simple. But the Trusts operate like little empires, getting financially rewarded for logging each individual episode. This is not good value for money for taxpayers and needs to be radically overhauled. It’s not fit for purpose.
People will surely die prematurely within a fragmented service, especially now that the sole focus seems to be on Covid-19. We need to wake up and start to remember that people have a whole variety of ailments that require attention and that the system needs to care as much for the emotional wellbeing of patients as the physical because each impacts the other.
To have a healthy population we need an NHS that has lines of communication and accountability that are far better than they are at present. If anyone has solutions or ideas about how to improve these systems please share, or write to your MP, or do something because it really is breaking my heart to watch David struggle through this every day.
Helen, what you are saying makes perfect sense and I am so sorry to hear how appallingly David has been treated, or not treated. My experience has been in alternative or complimentary medicine and many times someone would cone to me (Natural Nutritionist), as they felt so short-changed by the NHS.
The frequent failures and incompetence of the NHS leave me often feeling furious and frustrated and I was so very sorry to hear about David’s difficulties in getting adequate treatment. What is particularly worrying is the fact it is seemingly impossible to get through to any individual or part of the organisatioon to sort things out. It’s not enough to have gifted doctors or dedicated nurses if the whole system is against them (and one can’t get hold of them anyway) and especially against the patient who seems to be a statistic rather than a person. All this emphasis on data seems to me to be to the detriment of the importance of human involvement, concern and compassion for the individual. Well done on speaking out. What about starting a movement – Ill People’s Lives Matter! Sarahxx
Helen in her blog calls the NHS a failing system. She sees and hears my frustrations with the administrative systems that are almost designed to make communication between patient and NHS service providers wasteful and increasingly dangerous. I believe that the NHS can provide improved access to good clinical care free at the point of delivery.
An essential of good care depends on continuity in a relationship of trust between the NHS provider and me as a patient. Each contact costs money paid by the taxpayer. I’m aware that discontinuity of care wastes this precious resource.
Developing Parkinson’s’ first diagnosed in August 2017′ with prodromal symptoms identifiable 10 years before this time has further reinforced my conviction that a collaborative relationship and partnership needs to be the first priority. Examples:-
– Presenting with atypical symptoms in early 2017 the diagnosis of Parkinson’s made by a gastrointestinal registrar.
He referred me to the head of neurology for her opinion. No appointment was made. When I questioned the lack of follow-up I was told that making the diagnosis of Parkinson’s was not a priority, the disease was incurable and progressive and the waiting list was over six months. I then saw a private neurologist made the diagnosis and referred me back to the NHS. I had to make my own way finding resources that help me enormously. These include nutritional, vigorous exercise, conscious walking, and three years later I’m still playing tennis. See http://www.drdavidbeales.com
– Helen has detailed the endless phone calls to secure appointments after cancellations and rerouting to unknown consultants after referral to named consultants by my GP. It took time to realise that Parkinson’s is not considered to be a specialised disease category and their letters joined a pool and I could not be seen by a named consultant.
The list goes on and I will stop now.
Hoping that your experiences have been good within the NHS. +ve or not and your comments will be appreciated.
I’ve just read your blog about David’s difficulties with the NHS – and his ‘treatment’ – if it can be called that – feels so unkind and so ridiculously unnecessary and inefficient. Terrrible too that he, who must have given so much as a family GP, receives this lack of caring support. I think you sum it up in the following quote:
“… sadly one rarely feels ‘held’ by a consultant within the NHS system these days. Young women have thoroughly lonely pregnancies, with no continuity of care, seeing different people each time, having to repeat endlessly – as David has to today – who they are, their histories and problems. “