Rethinking healthcare

R

Barts-MS rose-tinted-odometer: ★★★★★

My accident, which has forced me to rest, has also given me time to reflect and think. I now realise that we are potentially at a crossroads that could allow us to reconfigure healthcare. The reasons for doing this are obvious. The current antiquated Victorian model of healthcare, which is fixed in time (synchronous) and place (geography), is too inflexible; in particular for the emerging era of preventive medicine. The NHS is simply not ready nor configured for the efficient implementation of preventive medicine and for aiding people to self-manage their own chronic diseases.  

We clearly can’t get rid of hospitals and their associated infrastructure, which are needed for managing acute problems, for example, trauma and surgery. However, can we reconfigure the healthcare system to free up resources so that hospitals can do what they do best, i.e. treat acute medical problems? And can we shift the management of chronic problems out of institutions such as hospitals and break the fixed-time/place constraints for managing these conditions? 

In reality, this is already happening, albeit poorly planned, with the rapid adoption of telemedicine during COVID-19 pandemic. Many of my colleagues, probably the majority, think telemedicine is a temporary solution and are keen to get back to the pre-COVID-19 way of practising medicine. This is where I differ from them; I  don’t want to go back to the same-old. The same-old is not very satisfying for HCPs and patients alike. In reality, the Victorian model of healthcare defines patients as passive recipients of healthcare and creates physical and psychological barriers to the delivery of healthcare. By having the HCP in control of the consultation disempowers patients. The current system disenfranchises patients, i.e. they have very little control over how they interact with the NHS; it is our way or no way at all. Simply, navigating the NHS is a daunting task. In reality, NHS is a quagmire; a hotchpotch of local services that differ from region to region in their delivery, access and quality. 

When I was discharged from hospital with a TTO (to-take-out) prescription and other supplies, such as wound dressings etc., that would only last two weeks and a referral to the local community rehabilitation team, I was told that my discharge letter to the GP and referral letter will be sent out the same day. I was instructed that I would have to make an appointment with my GP for suture removal and to get a repeat prescription in two weeks time. When I tried to contact my GP I was directed to an NHS online portal to make the appointment. The online questionnaire took about 25 minutes to complete and when I got to the end it told me that it could not make me an E-appointment, or a physical appointment, because my problem was urgent, when in fact it clearly was not urgent. The NHS portal then instructed me to phone my GP practice urgently. Fortunately, the NHS online portal gave me a specific telephone number to call my GP practice. When I dialled this number it was answered promptly, but the receptionist was unable to make my appointments for the suture removal nor the repeat prescription until I had spoken to a GP. The receptionist then scheduled an urgent telephone consultation for me to talk to a GP that afternoon. 

A very kind GP phoned me that afternoon but clearly had a blank screen in front of them. My discharge summary had not reached them yet and all the information I had entered on the NHS portal that morning about my accident, my management and my medications had not been transferred to the GP’s record. I then spent the next 15 minutes going through my recent history and management and giving her a list of all the medications I had been discharged on before she could offer me an appointment to have my sutures removed. I was then told that I had to repeat this process about 48 hours before my repeat prescription was due so that repeat-prescription could be processed in time for me to collect my medications. I am anticipating going through a similar process to one above for next week’s consultation; let’s hope I will be pleasantly surprised. 

When you analyse my touchpoints with the NHS above you realise how much duplication of tasks and data entry are occurring with each episode. If you multiply this up across the UK you soon realise how inefficient the NHS is when it comes to data capture and data repurposing and time wasted recapturing data. Surely there is a simple IT solution to this problem? 

My worry is what happens to people who are not digitally aware and who do not have home access to the NHS E-portal? Can they bypass this NHS digital stonewall? This is why we need the government to pass legislation making internet access a utility and mandatory for all citizens and that local authorities have to put in place programmes to teach the digital illiterate how to use these resources or provide them with the necessary help to do so. If Finland can do this so can the UK. 

As I had not heard from the community rehabilitation team by Thursday (6 days post-discharge) I called the number that I had been given on the copy of the referral letter I was given when I was discharged from King’s College Hospital. When I got through to the rehab team they had no record of my referral. Interestingly, they were able to locate my electronic record, but I was then told that I was speaking to the wrong community rehabilitation team. They then provided me with a new contact number and this time I got through to the right service, only to find out that the waiting list for home rehabilitation was 10-12 weeks. I subsequently told them as I had achieved all the objectives set for me on the referral letter and was it necessary to see them at all? As I was speaking to an administrator she wasn’t prepared to take me off the waiting list. At least the latter prompted a call from an occupational therapist the next day. I told the occupational therapist that since discharge I had become fully independent and was now walking at least 1km per day without support. I made her aware that I was also doing a daily upper body and lower body work-outs and was seen improvements on a daily basis. She agreed that I didn’t need to see the rehab team and has now officially cancelled my referral; I am off the waiting list. Despite this, I think I still need some advice about the intensity of my rehab programme, whether or not I am focusing on the right muscles and whether or not I need passive stretching and massage. 

As you can see I have taken my rehabilitation into my own hands with the help of my anatomical knowledge, Google and some basic home gym equipment I purchased from Amazon; you can call this self-management or DIY rehab. This is an example of a patient, me, being proactive; why can’t this type of behaviour be extended into other areas of healthcare? I would have loved to have been directed to an NHS website to have guided me through this process or even better an intelligent NHS application that collected data and adapted my rehab programme to my needs. The data collected via the self-management rehab app could then be repurposed for learning, research and included in my personalised electronic health record. Am I asking too much? 

The greatest untapped resource in preventive medicine and in the management of chronic diseases, such as multiple sclerosis, are us the patients. How do we grab this moment of opportunity in time to empower and equip patients with the skills and resources to revolutionise their own healthcare? 

The NHS is a behemoth and one of the largest employers in the world, which makes it very difficult to change. I like to think of the NHS as a healthcare platform. The hardware is its real estate (hospitals, clinics, etc.) and its operating system are its staff and myriad of contractors who support the NHS. At the moment the NHS is a distributed network of hardware that are poorly connected to each other in terms of data sharing and sharing best practice. Just as computing technology has moved away from using standalone software to cloud-based software with data storage and analysis in the cloud I think we can do the same with the NHS. So if one NHS Trust or a GP practice develops a self-management service to manage as an example neurogenic bladder it should be cloud-based, use a standard data collection protocol and standard APIs (automated programming interface) that will allow another service to use it as well and plug it into their own system. 

So what happens if three or four competing apps for the self-management of bladder dysfunction emerge? You could let them compete against each other in an NHS app store and over time the one that is rated highest with the most users will become de facto the best. The competition will encourage innovation and will hopefully drive improvement in the applications on offer.  Using the cloud and standardise protocols will rapidly scale self-management protocols and drive innovation in the NHS. 

What about diagnostic apps? These already exist and can be improved on. What happens if a diagnostic application requires a neurological assessment, neuroimaging or other diagnostic tests? This is when tech meets traditional medicine and the application makes an appointment to see the neurologist linked to that specific part of the pathway. The neurologist won’t be seeing this person blind. The application will have collected data in a systematic way that will be available for the neurologist to review and to add to, i.e. to enrich the data. I also see a future when these self-management and diagnostic apps having embedded assessment tools and outcome measures, which will enrich the data. 

Some people will criticise this future view of healthcare as being dystopian. I should remind you that this is already happening in real life.  What is important is that pwMS, HCPs and other stakeholders are involved with the design testing and refinement of the apps and that a robust ethical framework is put in place to safeguard patients. In addition, NHS digital will need well-run teaching courses in parallel to upskill patients, their carers and families on how to navigate and use this system. 

If you think more broadly you realise that the human touchpoints in a digitalised healthcare system don’t necessarily have to be geographically constrained and therein lies the power of a distributed network; it taps into the whole country and that will allow economies of scale to develop. For example, a well-run and resourced self-management application for chemotherapy-induced nausea and vomiting could manage tens of thousands of patients and do it extraordinarily well rather than having thousands of duplicate services across the country who don’t do it very well. I use chemotherapy-induced nausea and vomiting as an example because a close friend of ours was suffering terribly after chemotherapy and only found relief months into her treatment when she was referred to a palliative care team with the know-how. Why didn’t her oncology team get it right the first time? What mechanism is there for the palliative care team to feedback to the oncology team what that found effective? I suspect there won’t be a feedback look because our friend has been discharged from oncology for palliative care.

The big data a system such as this will generate will allow artificial intelligence to learn and tweak the application(s) and the system will be able to improve itself. A question the NHS will need to ask itself is whether or not it is prepared to give digital power to the people and let them control and own their own data and management? The NHS can always ask permission to use patient-level data for improving the system, doing research and for providing standardised, state-of-the-art care, that in time will be truly personalised. I suspect only a tiny minority of people won’t consent to the repurposing of their data for the common good.

The NHS role should not be to try and control this digital revolution but encourage their million pulse employees to be creative. NHS Digital would obviously need to create the backbone, i.e. the data sharing standards, ethical approvals, define the APIs, create a funding stream and create and support a high-level developers platform that is easy to use. The latter will make sure the apps all speak a common language and will integrate their data into NHS electronic health records. The NHS will also be required to run an App store with reviews and have a clear tiered system for apps;  (1) app currently in-development, (2) developed, but being clinically validated and (3) validated and available for general NHS use.

At the moment the NHS app library is simply a list of third-party apps that have been vetted by the NHS. Apps in this library are stand-alone apps that don’t integrate into a common electronic health record the way I would want and expect them to.

If done well the NHS app store could change healthcare for both the NHS and other healthcare systems too. The NHS would revolutionise healthcare and possibly make a little money on the side, by licensing the apps to other countries, healthcare systems and private users.  

What do you think?  

CoI: multiple

Twitter: @gavinGiovannoni 

Medium: @gavin_24211

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

13 comments

  • Glad to see you are recovering! What you describe with regard to your own care will be very familiar to many of your readers who are regular users of the NHS -parallel pathways, tunnel vision, no connections. – the patient ( or their carer) being the only source of the complete picture. How many times have I had an appt where I have to give my entire medical history to the HCP because there are no centralised records- or navigate the intricacies of NHS bureaucracy. I’m in a position to do that – but many are not.

    What’s really interesting about reading your blog is seeing you view the experience from two other side of the tracks. I’d like to see more of this from the NHS and it doesn’t have to be about digital healthcare. For example I’m due to have a new MS treatment at the end of next month. This involves a long outpatient appointment at a new hospital for me. The appointment letters have been sent to me but no information about what to expect on the day, where I need to go, will it be accessible, where will I park and will that be far from where I need to go, can I bring anyone with me? What can I and my partner expect in the days after ( you will remember your comments about carers last week) ? All of these things are really important. We’ve decided we’re going to do a reccy beforehand – but many people won’t be able to and should they have to?

    Imagine being in the patients’ shoes – what do they need to know to aid their experience and a good outcome. That would be a big first step in expecting and then asking patients to take more control of managing their conditions.

  • Shouldn’t you be resting?

    What you are experiencing is a tiny element of the experiences of people with chronic conditions such as MS. You’ve only been poorly for c.3 weeks + you will get back to full health. Imagine having had your experience for 10, 15, 20 years? At least they knew what was wrong with you at the outset and could treat accordingly.

    My MS experience was 4-5 trips to a GP before I was sent to a neuro (which I paid for privately as the wait for an NHS neuro was so long). After an MRI (which I paid for) I was diagnosed with RRMS and told there was nothing to give me until a second attack. This came and I had to wait to see an NHS neuro and then an NHS MS nurse. The treatment was started c.6 months later and another relapse introduced me to the world of OT (who were great) and PT (massive wait to see them). All I now have is an annual 10 min appointment with the neuro. I pay for an osteopath (which helps a bit) and for neuro PT.

    I’m sure that a rejig / rethink of the NHS structures might lead to improved efficiency etc. but it still won’t make much difference to the MSer who is progressing. I saw that you had been out for a walk and that you highlighted how slow your pace was. I had to laugh, as you would have overtaken me and left me for dead.

    For MSers who are getting worse (it’s a progressive disease), rearranging the NHS structures is like rearranging the deck chairs on the Titanic. We may get seen a little quicker and perhaps won’t have to travel as far, but it won’t make a jot of difference to our outcomes.

    As you have a bit of spare time between your walks and the weightlifting, could you put your mind to how this insidious disease which leads to increasing disability can be stopped in its tracks. A combo of therapies to do this would change lives and take a massive burden off the NHS. You noted before that your accident had resulted in EDSS 6 – I’m guessing you wouldn’t want to be there again – neither do MSers!

  • Excellent beginning of True Healthcare reform!
    Positive thoughts and hopes for Patient Centered Charting.
    We have some of that in USA. Your ideas keep going.
    NHS has too much Government in it.
    Health Maintenance organizations can be more efficient, paid to insure patients an actuarial appropriate per patient per month fee. Shared risk between insurers and patients. Insurers are motivated to keep enrollees healthy. Rehabilitation self directed is ok. You need direction. Maybe just get an OT/PT evaluation initially and periodically. High level stuff. Your muscles get all out of balance. Best Wishes. Your recovery amazing me. 👍🏼

  • As ever, a perceptive insight into a big issue. The NHS is a fantastic organisation, that we in Britain are privileged to ‘enjoy’ and it does many, many things extremely well. Unfortunately dealing with non-urgent chronic conditions (such as many aspects of MS) that require a multidisciplinary approach with input from a diverse range of specialists doesn’t seem to be one of them. Co-ordination of effort from neurologists, MS nurses, physiotherapists (neuro and musculoskeletal) spasticity specialists, continence services, podiatrists and GPs to name just a few often seems poor and requires massive repetition of basic information. Whilst it is terrible that you should have endured such an awful accident perhaps if it inspires you to stimulate action to improve the ‘system(s)’ it will at least provide some positives for others.

  • If this is you when you’re resting ProfG you’re gonna have to spend more time in the R&R area of your life!
    Hope you’re doing ok btw.

    This is an astoundingly on the nail post!
    Any chance of you submitting it to all senior NHS personnel + govt and anyone else you can think of in the hopes of influencing a move in this direction.

    The NHS is fabulous – there’s good reason for it being the envy of the world. But yes it is also a lumbering dinosaur: horribly out of touch with the meaningful and advantageous use of modern technology.

    In fact it operates in a blind-to-technology bubble. The only reference to a patient being the (said somewhat patronisingly) ‘Don’t use Dr Google’ This ignores not only the fact that this is exactly what all of us do, but that there’s heaps of excellent info/material available online.

    Of much more concern is that it means the NHS isn’t undermining the very worst of what the online world has to offer – all the fake news around COVID and anti vaccination is particularly pertinent right now, of course.

    Around 10days ago I emailed the neurology dept secretary of our local hospital with a copy of my revised ADRT and the same day she acknowledged receipt of it, informed me my neuro is on leave and that it would be passed on to a colleague. Yesterday I received a letter via Royal Mail from said colleague confirming it had been added to my records.
    Er – why not ping me a quick email?!

    I’ve seen reports in the media that the public response to remote consultations has been predominantly positive, pretty much the same from clinicians + Matt Hancock saying looking to do more of the same.
    You say your colleagues all wish to revert to the way things were – more evidence most neuros are vulnerable to resembling dinosaurs like their employer😉😆

  • Thanks for your thoughts and insights. Whilst you rest your neck and pelvis (between impressive exercise sessions!) your brain is back on form for sure 🙂

    Our beloved NHS has grown, spread and sprawled over the years. Before it is anywhere near progressing as you hypothesise, just keeping everything in one place would be a great start.
    Re
    ‘Surely there is a simple IT solution to this problem?’
    In your story, if every person you spoke to had simply been able to see your personal record in the NHS cloud that would be so much easier. But no, hospital A communicates with your GP by letter copied to community team C etc. The only person maintaining a record of absolutely everything is patient P. Patient P then has to scan/photo everything in order to store safe online and be able to find the information again in future.

    🤔 is it so difficult??? And please don’t mention the fax machine!

    • Prof G, so wonderful that you report to be physically “fully” independent and walking without support some distance!!! Great news! I think all of us who have ever needed rehab would agree that it was very important that you took initiative to persist with rehab. But, I doubt any of us are really surprised: your background and tenacity almost guaranteed it! Don’t give up pushing your body but also give it rest and celebrate each achievement. I’m curious as to Why you think you were able to self direct more physical improvement after your rehab goals had been met? I think many MSers have out of necessity also self directed their rehab goals. I’ve been frustrated that the Objectives of MS PT seem to be primarily focused on functional exercises and not maintaining strength over time, as MSers need to do more to just maintain than non-MSers. Yet health insurers here in the states measure success of PT treatment and or need for treatment based on whether treatment will result in improved ADLs, improved strength and timed walk distance. This measurement of success is not adequate for MSers. Greater parameters should be used, including maintenance of physical strength and slowing of progression. Why is it that like you, many MSers who want greater physical improvement get left to their own devices to determine the Intensity of their own self directed workouts and which muscles to focus on???

  • There is such a divide between those who have resources and those who do not.

    I am lucky enough to have family money, no mortgage (at 39 – but I have plans to upgrade to a larger flat), a secure and well paid public service job. This means I can spend a large proportion of my income on my health: a personal trainer, yoga classes, gym equipment, massages, an osteopath, not to mention good food on my table.

    I’m eternally grateful for the NHS which got me from a point of struggling to walk, to fully mobile again (nothing to do with the MS, I also have EDS!). But from there, I was on my own. Now, my neurologist had repeatedly raised issues with my blood test (high MCV) with my GP, but as I’m not at death’s door, my GP is not interested. Performance is important to me, I want to qualify for London Marathon which means a 7 minute improvement on my current marathon PB. I have found a paper that links high MCV with MS where patients improved following B12 injections. According to my GP’s receptionist, my B12 is fine, but I’m willing to ignore my needle phobia and give it a go if it might change things. But again, I’m not dying so no one cares. And I don’t want to go down the shopping center charlatan route.

    It’s only a few months until my post-40 health check, is that the point at which GPs start to give a toss?

  • Great ideas – a task force to make the NHS more efficient by a huge amount is needed! Yes, many people/patients want to self manage and there are many hurdles to overcome which benefit from sharing of information – electronically is a sensible way to share.
    Please continue to apply yourself to these issues – you are in a good position to effect change.

    Best wishes for your continued recovery

  • Great article, thanks Prof G. Glad your getting better too, we would hate to loose you, being an inspiration for MS ers at the very least. I too have worked as a RN/RM for 38 years, although now retired, I do have a wealth of experience on how to navigate the system for my care . I have an EDDS of 7,5 , and truly wonder how anybody with MS can get the best out of our much treasured NHS.
    The MS society is a great resource for one, lots of information and ideas available to help MSers live the best life they possibly can, but you do need to be internet savvy. Never underestimate the value of feedback too, especially in written form, Keep up the good work Prof G, any keep up being an advocate for positive change.

  • Prof G, I wonder if your colleagues miss the face to face consultations, rather than wishing things to go back to how were generally?
    Although I am aware some more urgent, face to face outpatient neurology appointments are taking place.

    I would prefer a face to face consultation with my neurologist, than Telemedicine. To build rapport, which I feel is important. To be examined ad-hoc on aspects that concern me. And so the neurologist can physically see how well I am generally, when I first walk into the consultation room. All this seems a luxury at this time. Telemedicine is fine for the ms nurse, I feel.

    • This is not a competition between telemedicine and face-2-face consultations, but using them and tech to complement each other in a way that transforms healthcare. In particular data capture, data analysis, data repurposing and creating a feedback loop so that we all learn and share best practice. Hidden in my vision is the true democratisation of healthcare, i.e. the patient becomes a true partner in the management of their own disease and not as a passive recipient that happens so often now.

      • Hi Prof G – I’m glad to hear your experience with the NHS has been amazing for patching you up & putting you back together (glad to hear you’re on the mend 🙂 but you’ve experienced the immensely frustrating healthcare set up that we’ve been trying to navigate with MS & other healthcare issues. I feel proud that we have this amazing service & all my family have worked hard & paid their NI contributions to enable them to use the healthcare as and when required. I’ve witnessed lots of dreadful & truly unacceptable care too (with my elderly Mother over the years) but I’ve always had a little bit of me that has faith that you’ll get there in the end – You just have to have the tenacity, assertiveness & be fairly IT literature – or you don’t stand a chance! The private sector can be just as bad – if you pay, you get to see someone quickly (next few days sometimes) – but the majority of time the consultant works for the NHS too! How can this be allowed or possible – surely this is half the battle of actually navigating, organising and understanding where consultants are and tying them down (literally for a neuro in the Surrey/Berkshire area). It must be a nightmare for admin/secretaries who have to organise the clinics – deal with disgruntled, stressed out and usually very unwell patients – who just want to speak/see a consultant. The new way of working has been successful and I agree part teleconf/part telephone & part face to face will work – again if all the info is to hand – you don’t have to go through all your probs even before you start you consultation – & the appointments are used as a two-way conversation and most importantly that the level of care should be given to carers & families who need to support the patients (again especially if they are unwell). My good friend has PD & has just had a chip inserted into his brain – he spent a week in hospital in St Georges & the op was a success. His experience in the hospital was not great – no sleep, due to bright lights, disturbances, people walking around, food not great – he had difficulties with bathroom habits (didn’t say – as did not want to be in there a day longer) – he felt alone, no tv – no visitors allowed (he had his phone) – he also couldn’t go home until physio came and supported him – which meant the weekend came and he then had weekend staff and no real support from anyone! Can you really say that is how you should be treated when have brain surgery – shouldn’t you have had more support. Why couldn’t his wife visit him (she is covid free) – the dr’s & nurses go home, use public transport & see their families. His wife could have had a mask/gown and would have happily be sprayed with disinfectant too! Madness – but there you go. No one checking, the main job complete I guess but that’s not what healthcare & anyone with a chronic condition should have to deal with. Long-term management with consultants, nurses talking to each other and sharing ideas and information about the patient to delivery a satisfactory healthcare outcome for the patient.

        I could go no and no – but I’m now desperately wanting to know what vaccine is available to me whilst on CD20 therapy. And yes, please please let us know if this therapy is a life-long treatment – how long, is there a better one (9 infection so far 🙁 and if so, can I change. Answers on a postcard and mail it to me – I might receive it after Christmas to plan out my year!

        All the very best Prof G – and I can see you’re feeling a bit better but remember to take it easy. Munchies on Gabapentin, been there done that and got the tee-shirt (layers of tee-shirts in fact!). So be careful….

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