Why is the NHS not delivering?
The report highlights the effect of so-called NHS reforms on the NHS culture but doesn’t finger this as the main reason for poor productivity growth. I disagree.
Besides bashing Gareth Southgate, the English football manager, who failed to motivate his team to lift the 2024 European Cup, NHS bashing has become the number one national sport in the UK. Only yesterday, the BBC ran an article highlighting the productivity gap in the NHS, including the following graph.
More money and staff – so why isn't the NHS more productive? (BBC, 15-July-2024)
The article highlights all the obvious bottlenecks holding back NHS productivity gains. This analysis is based on a report from the Institute of Government that was released last year (“The NHS productivity puzzle: Why has hospital activity not increased in line with funding and staffing?”, IfG 13-June-2023).
The glaring omission in the BBC article and the IfG’s report is a focus on NHS culture, which has changed to a point where the NHS is unrecognisable from what it was when I started working in it in 1993. The report highlights the effect of so-called NHS reforms on the NHS culture but doesn’t finger this as the main reason for poor productivity growth. I disagree.
“The move from the Blair and Brown governments, and in particular the effects of the 2010-on Lansley reforms, meant the funding arrangement, build-up and culture of the NHS was changed dramatically.”
Culture in an organisation such as the NHS refers to the collective norms, values, beliefs, and behaviours that shape the social and psychological environment of the institution. Culture encompasses the attitudes and practices shared among staff, influencing how patients are managed, juniors are taught, medical research is conducted, people interact with each other, and decisions are made. Organisational culture is described as the organisation's "personality," embodying its ethos, principles, and internal presentation to its stakeholders and the outside world. In short, the NHS has experienced a personality change.
The current NHS seems to care more about metrics, processes, and ticking boxes than its staff and patients. For example, I must have spent close to 40 hours preparing for and undergoing my quinquennial revalidation. Most of my administrative support has been withdrawn, so I now spend much of my clinical time online, filling in the electronic health record. I am now expected to complete online output forms, a task that was previously completed by clinic admin staff. In my hospital, the IT infrastructure is flaky, and I often have to redo many tasks, not to mention the extraordinary amount of time I waste waiting for elevators to get to the hospital's upper floors. If you scale up these extra time commitments across the NHS, you realise we are running on the spot. It is not surprising that I and others feel burnt out and productivity has stagnated.
The good news is that we have a new Labour Government that seems determined to fix the ‘broken NHS’. However, unless they sort out NHS culture, they will fail in their mission. Changing the NHS's culture will be a massive undertaking that will require inspired leadership and a change in the way the NHS treats and values its staff.
The other side of the coin is that medicine and its practice have changed. This means that clinicians like myself will have to change their ways and step up to embrace the technological revolution that is changing medicine beyond recognition. The latter includes supporting self-diagnosis and self-management as part of medical practice and learning not to gaslight patients who often know more about their condition than the HCPs managing them.
Anyway, the BBC piece has been playing on my mind and has made me reflect on a piece I wrote on Medium after attending the 2018 American Academy of Neurology meeting. I want to share it with you. Even though it is six years old, some of the issues may be relevant to getting the mojo back into the NHS and my mojo as well.
Is the art of medicine, and by inference neurology, in terminal decline? (29-Apr-2018)
Reflections on attending the 2018 American Academy of Neurology meeting in Los Angeles.
The most important part of attending large International conferences is the time for thought, reflection and, importantly, introspection. The AAN 2018 was no exception. The programme was informative, in a disturbing sort of way, in that a lot of the teaching sessions were dedicated to survival in the workplace, i.e. dealing with burnout, mentorship, work-life balance, mindfulness and meditation, giving and receiving feedback and many issues related to private practice.
As a trainee, I was expected to be resilient; I simply had to get on with the job at hand. I was too busy to think about or identify these sorts of issues. I am not even sure if ‘burnout’ was an identified problem back in the late 80s when I started my clinical training. For me, and most of my colleagues, internal medicine and neurology was a calling, ‘our vocation’. Being a doctor was more than simply doing a job. What has changed? My wife tells me the millennials have changed things; they are not as accepting as we were of the status quo and want something different out of life. Play and leisure define the millennials and not their work. Is this true? If yes, maybe I need to play more and work less hard.
The millennials demanding something different from life doesn’t explain it all. Something more seismic is happening to society and medicine. In the current era, often called the post-industrial era, technology has democratised knowledge, and the medical profession’s power base of asymmetric knowledge has been eroded. This is leading to an existential crisis for the profession. Unless you have a technical skill that you have honed over years with practice, such as a surgical skill, our knowledge-based skills are being challenged by the crowd, algorithms, and AI. This leaves the average neurologist frightened and bewildered, like a rabbit caught in the headlights. In the past, my colleagues were excited about significant advances in medicine. Now, what seems to excite them most are reminiscences from the past, from the era when our seniors appeared to be the masters of the universe. Gone are the days of the clinical anecdote. Big data is now king. I heard a talk at the AAN2018 on pathogen discovery using deep nucleic acid sequencing of clinical samples (blood, spinal fluid, biopsies, etc.) and clever bioinformatics; unsurprisingly, it outperformed the clinicians. Gone are the days when an astute, well-trained clinician would have the edge over their colleagues. In the current era, technology and big data trump clinical skills and human knowledge.
Another example of a threat to neurology is the revolution that is happening in relation to gene therapy and RNA interference. Both are creating an unprecedented need for presymptomatic genetic diagnosis. Why waste time screening for single genes? Why not simply do whole genome sequencing on everyone at birth so that we can identify treatable genetic diseases, risk profile everyone for common diseases and then let algorithms analyse and reanalyse the genomes of the world’s populations as new information becomes available? It won’t be doctors who will be making diagnoses or treatment decisions it will be algorithms and AI.
Neurologists still cling to the neurological examination, claiming it is too complex for a machine to do and interpret. This is not true. Data is emerging that the way we use our smartphones and how we interact with the web tells tech giants, such as Google and Facebook if we are depressed or have signs of early Parkinsonism. Image analysis using artificial intelligence of pictures taken of suspicious skin lesions and the retinae of diabetics are outperforming dermatologists and ophthalmologists at diagnosing skin malignancies and diabetic retinopathy. The same goes for image analysis in radiology and pathology and the analysis of neurophysiological investigations such as an EEG. Why wouldn’t machines get better than us at interpreting physical function? As we enter a world of smart wearables and other intelligent technologies, it is only a matter of time before AI can perform and interpret a neurological examination better than we can. I have little doubt that the neurological examination will be deconstructed, improved, and ultimately performed by machines.
So, how are we physicians and neurologists going to ensure our survival? Dare I suggest we redefine our role? Our role as diagnosticians will become less important as algorithms take over. Physician assistants and other allied healthcare professionals will increasingly deliver disease treatment using care pathways and standardised protocols. IT systems linked to the electronic record will analyse variance. Any variance from the protocol will trigger an investigation into our practices. I am already aware of this happening in multiple sclerosis in relation to possible over- and under-prescribing of highly effective disease-modifying therapies or DMTs.
To survive in the brave new world, neurologists will need new skills, particularly in relation to sifting, curating and communicating information. We will increasingly be called upon to fight fake news and anti-science movements to protect our patients from harm. To be effective in this role, we will need to actively engage with the new media and acquire new digital skills. Neurologists will need to become better listeners and better communicators. We will need to shift the focus from a disease-centric worldview to a preventative and holistic worldview. Treating disease will become a smaller part of our work. We will need to train and support teams of assistants and nurse practitioners who will do most of the hands-on work. We will need to become knowledgeable and skilled in lifestyle and wellness counselling. More importantly, we will have to walk the talk; we will have to live our lives the way we want our patients to live theirs. Neurologists who lead by example will become the pioneers of a new type of neurological practice. Based on my experience at the AAN2018, I call this Wellness Neurology.
Will neurologists be prepared to retrain as wellness neurologists? I am still haunted by the concluding lines from The Great Gatsby that are as relevant to me today as they were when I read them as a 16-year-old: “So we beat on, boats against the current, borne back ceaselessly into the past.”
Your feedback
I would like to hear about your experiences and thoughts on the NHS or your healthcare system if you don’t live in the UK. What needs to be done to improve its efficiency and effectiveness? Is it delivering what you need to manage your MS? Do you think focusing on NHS culture is realistic? What are the chances of Labour making the NHS more productive? …..
I hope you don’t mind me getting political. I always tell the medical students that medicine and the practice of medicine are political. If you want to be a good doctor you have to engage in politics; health policy is much more important than you realise when it comes to caring for patients.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
To your question: "what needs to be done to improve its efficiency and effectiveness?"
Far and beyond anything else - the thing that I think would have provided an effective care system for me was immediate access to stronger treatments and getting rid of the escalation model. For myself, I would have wanted choice between IRTs: High intensity HSCT (Bu/Cy), Moderate Intensity HSCT (BEAM-rATG), Low Intensity HSCT (Cy-rATG), Alemtuzumab + Low Dose Rituximab
Milder options at the gate (Ocrelizumab/Natalizumab) meant allowing the smoldering process to take root and for me, a modest period of only a few years of okay-ness until PIRA set in and the ineffecient/expensive/ineffective downward spiral and a prescribing and care cascade began.
As a patient I felt like my biggest inefficiency and loss of efficacy was fighting against the gatekeepers of the medical system to approve stronger and more efficient therapies early in my disease course. Had to fly around to many different neuros, deal with rejections, and change providers multiple times to get ALZ + myelo HSCT. As consequence both appear to have been offered too late. Had already lost reserve capacity and had so many MS-created problems that I don't think any health care system could reasonably be expected to provide an effective and efficient structure for wellness.
With the growing strains on the medical systems of the world I keep wondering why escalation therapy is still the model; if we hit harder with IRTs up front, wouldn’t that translate to far less neuro visits, infusions, physiastry, physical therapy, time spent on referrals, visits to other specialists, MRIs and brain volume tests, breakthrough disease, what have you? And all of this less strain on system, patient, and provider? We all have limited resources and keep thinking that the way to increase efficiency is to delay the start of the downward spiral and push the more care-intensive aspects of this disease farther into the future.
Beyond offering IRTs out of the gate —
1. I would love to see MS care evolve more into a partnership model where my input / values / desired treatments are more considered as input to the discussion. At present it feels like begging (usually unsuccessfully) to those who hold the keys.
2. I would love to see more training around smoldering disease and the fact that stable exam does not imply stable disease and brain volume. Noticing a lot of patients being told that they are experiencing “pseudo relapse” or are “being hyper vigilant / anxious” when in fact they are smoldering. Smoldering should be explained to patients from the get-go so they are not confused why they are getting worse (thank you for your excellent articles and publications on this - I refer others to to them regularly). Ideally the use of blood based markers like NfL, GFAP, CCL20, or PET scans could help provider/patient to see the same thing objectively. Until then, training providers to understand, observe, communicate about smoldering seems like a huge step forward.
3. As technology evolves, moving to a model where MS is treated first and foremost as a blood and/or viral disease (and measured proactively) instead of a neurologic one. It’s strange to me that we emphasize the brain and neurology so much in MS care, when blood and perhaps infectious disease are the source. It feels like we are measuring the disease only after damage is done and then scrambling to fix it or manage the complications retroactively, rather than getting ahead of it.
4. Liberty to try reasonably evidenced/safe treatments off label - e.g. reasonable case report data for the safety of Alemtuzumab+low dose rituximab to mitigate autoimmunity, case report data for TAF and HAART antivirals. Can we provide a better way for informed patients to accept risks for things that are out of the box but not overtly dangerous? ALZ being utilized so infrequently is a bummer to me as it appears safe if dosed with RTX and again, like it could keep many patients out living instead of in the clinic or MRI tubes.
I am sure there are many barriers to all of these - inertia, legal risk, medical ethics, politics, all of the above? Being on the patient side I do not know what holds up what, would love to understand more.
I qualified and started working as a doctor in the NHS in Scotland in 1983. There was a mad “preregistration” year. You could be on call from Friday morning to Monday evening over weekends, then through the week all day and every second night. To get some holidays you had to pay for a locum, often a student about to qualify. You learned an awful lot but senior cover was patchy. Mistakes were inevitably made and care was not optimum. It was wrong
As you progressed through the training grades things did ease off no longer being first line for nighttime work but jobs were still very busy. You stayed on at night and came in early in the morning. You studied for professional exams and did a lot of paperwork “in your own time” at home. You had been given an amount of work to do – responsibility for a number of wards, an outpatient catchment area, teaching and had to find time for research and continuing education. You saw your job as a vocation. That was your lot and you did it the best you could. The government and hence the hospital managers felt that they had to sort out all those consultants who were doing private work or spending time on the golf course in NHS time. These doctors if they existed were a small minority. My work life and that of my colleagues couldn’t have been further from that. We were tasked to diary our work because the new contract was to pay us for 4hr blocks of work called UMTs Units of Medical Time which was going to attract a fixed amount of pay. We did that. The managers would not believe how many UMTs we were actually doing and said that they would only count the hours that we did between 9:00 and 5:00pm. We had to fit caring for patients into that time or do it for free. We had been essentially doing that anyway but there was something in the way of turning us into something like “healthcare operatives” and not Doctors that demoralised myself and my colleagues.
That is when things changed for me.
Junior doctors coming up through the ranks now seemed to now have a different ethos. One afternoon I tried to encourage my junior doctor to come out on a visit to see a very rare and interesting case.
Me “You may never see this again”
Jun Doc “will we be back by 5:00pm?”
As I couldn’t guarantee that, he never did see the interesting case.
Wild things happened then Jun Docs did much less hours than we did at their stage but they covered more areas and could be more busy and even less safe. A patient could be looked after by 3 different doctors in a 24 hour period Each having to catch up with what was happening then hand over to another docto rafter . All times where communication could fail. Was this any better than the earlier flawed times. I’m not sure.
Then “revalidation” as you say a phenomenal amount of time spent telling someone that you are doing what you are meant to be doing and if you are not managing to do it would they please look at the resources you have been given and see where that might be the reason you are not.
We pay less for our doctors and other healthcare workers than many countries and our numbers don’t add up yet. You cannot throw resources at a broken system and expect it to heal.