On the mend
Some commentators’ predictions were correct; when you are not well and are on the receiving end of the NHS as a patient you see things that you don’t necessarily see as an HCP and NHS employee. As a result of being ill with polytrauma and spending 14 days in the hospital, I have acquired some insights that I would like to share with you. It will be an interesting exercise to see if any of these insights can be adopted from the acute setting and applied to chronic conditions such as the management of MS.
Protocols and Checklists
Despite just coming around from being knocked unconscious for 5–10 minutes and lying in the middle of the road with excruciating pain in my hips, legs and upper spine I recall the paramedics running through their checklist to make sure the scene was safe before they assessed me. They then went through a comprehensive assessment driven by a well-rehearsed protocol.
I was then blue-lighted to the acute trauma unit at King’s College Hospital and went through their resuscitation protocol and investigations to document my injuries, resuscitation requirements and treatment. It is interesting that many of the checklists that the different teams who saw me used had overlapping items, which although slightly irritating from my perspective, were deliberate to make sure nothing was missed. It was interesting that during my resuscitation there was one person, an anaesthetist, who was in charge. He was hands off standing in the background and directing the swarm of people working on me. He actually held a tablet computer and was entering data in realtime.
Insights: In MS clinical practice we should make more use of standardised checklists and protocols so as not to miss out on anything when managing pwMS. It is easy to take short-cuts when not using a protocol, which is why almost all medical research shows better patient outcomes when practices are modelled around standardised checklists. The use of checklists in MS clinical practice is something we have discussed as part of our MS Raising the Bar initiative (RtB). I think implementing these in the UK will have a dramatic impact on MS care. What do you think?
Before personalised, precision or customised medicine we need standardised medicine, i.e. delivering the basics to everyone with MS in a timely manner.
Another insight is to have a named care coordinator, i.e. an HCP who has an overview of someone’s care. In MS this has traditionally been the clinical nurse specialist (CNS), but as CNS MS caseloads have increased and with the push towards self-monitoring and self-management who coordinates MS care and management needs to be reassessed. I would suggest we think about delegating this to a well-designed technology platform. This was made clear to me in the trauma unit; the only person who knew everything about me at any point in time was my electronic patient record.
Once I had been resuscitated, stabilised and my pain brought under control with a morphine injection and an on-demand subcutaneous morphine infusion different teams went to work on me. Once my vital signs and pain were stable, I was sent for a whole-body CT scan including head, neck, chest and abdomen. I also had an x-ray of my left leg. At some stage I was sent back for further contrast-enhanced imaging of my urinary tract to make sure my bladder was intact; it is quite common when you fracture your pelvis that you damage your bladder.
Once the trauma team was happy that I did not need a chest drain and abdominal surgery they brought in teams of other experts to patch me up.
First, the maxillofacial surgeons to suture my lacerated right ear.
The next team to see me were the orthopaedic surgeons to address the deep laceration over my right knee and my fractured pelvis. After a negative saline load test on my left knee, the laceration was sutured. For the saline load test, the orthopaedic surgeon injected about 75ml of saline into my knee under high pressure to see if there was any leakage of saline via the laceration; if there had been saline leakage it would have indicated that the injury had penetrated the synovium (sack around the knee joint) and would have required the laceration to be explored surgically so as to close the defect in synovium under aseptic conditions. Having your knee blown up like a balloon with saline under pressure was quite uncomfortable.
Within 10 minutes I had had an opinion from the orthopaedic surgeon on-call about my fractured pelvis; he provided me with three treatment options. One option was to treat my pelvis conservatively and wait for the fractures to heal spontaneously; this really was not an option as I would not have been able to weight bear for at least 6–12 weeks and this would have resulted in a prolonged inpatient stay. The other options were acute pelvic fixation using a 2D x-ray guidance to place the pins; this procedure could be done as an emergency. The third option was to wait for for a weekday to have the pelvis fixated electively using a new 3D intraoperative x-ray guidance system. The advantages of the latter were much lower risk of nerve damage from placing the fixation pins or screws, a quicker procedure and interestingly lower overall radiation exposure. I chose the latter safer option despite being in severe pain for the next 48 hours from an unstable pelvis.
I went to surgery 48 hours later and had a successful pelvic fixation with no collateral damage to the structure passing through the pelvic bones. I subsequently found out that I was very fortunate in that Kings College Hospital is the only orthopaedic unit in the UK that offers this intraoperative 3D guidance technique for pelvic fixation. My orthopaedic surgeon had been trained to use the technology on a fellowship in Paris and was the only one in the UK using this technology at present. This is important as it reduces collateral damage to nerves, blood vessels and other structures in the pelvis from about 5% with the 2D system to less than 1%. How lucky was I?
Insight: If available why would one not choose the most effective and safest therapeutic option? This insight is very pertinent to the management of MS and how we use licensed DMTs; i.e. watchful waiting vs. slow escalation vs. rapid escalation vs flipping the pyramid.
Next up was the neurosurgery team to assess my cervical spine fracture (burst fracture of the body of C7 and fractured left C7 pedicle). The neurosurgeon was not happy with just a CT scan so I had to have an MRI of the cervical spine, which showed that I had a prolapse of a large bony fragment into the spinal canal that was pressing on the C7 nerve roots leaving the spine and possibly the C8 roots as well. Fortunately, there was no compression of my spinal cord.
As I only had an incomplete sensory loss in my hand and forearm, in the distribution of the C7 and C8 nerve roots or fibres, and no weakness in the arm the neurosurgeon recommended conservative management with the option of surgery if things got worse. Over the next 3–4 days, things got worse; my pain became unbearable, my sensory symptoms were clearly fluctuating, i.e., whenever I sat up and gravity began pulling down the bony fragments from my crushed vertebrae that were irritating and damaging the nerve fibres leaving my spinal cord. In addition, the pain was getting worse. When it was noticed that I had become weak in the muscles supplied by these nerves the decision was made to abandon the conservative approach to take me to theatre and to decompress the fracture, i.e. to remove the bony fragments so as to free up the nerve fibres, and to stabilise the spine with screws.
The neurosurgeon then discussed with me the pros and cons of an anterior or posterior approach to decompress the fracture. The anterior approach is through the front of the neck and is associated with less postoperative pain, but is riskier in terms of the potential damage to structures in the neck, which could, for example, have left me with a hoarse voice and poor speech. In addition, the surgical field of view when it comes to looking at the nerve roots or nerve fibres leaving the spinal cord is poor with the anterior approach. In comparison, the posterior approach is associated with much more postoperative pain as the neck muscles have to be stripped from the vertebrae. However, the posterior approach gives a much better field of view in terms of seeing the nerve roots clearly and it has fewer complications from collateral damage to other structures.
I asked him given my CT and MRI findings which approach will give him the best chance of achieving an optimal outcome. He said a posterior approach, i.e. from the back of the neck, which is why he had decided on the posterior approach. It takes approximately 18 years, and sometimes longer, to train a spinal neurosurgeon, which is why they need to make these types of decisions with all the facts and caveats mentioned above. It was very kind of him to take me through his thinking and why he had settled on the posterior approach. I suspect by involving me and exposing me to his decision-making process was his way of getting me to understand and buy into any potential complications of the surgery.
After the procedure, the neurosurgeon told me that he had discussed my case with three colleagues at their MDT (multidisciplinary team) meeting and the consensus was to approach my fracture from the back, i.e. a posterior approach. It is reassuring to have the collective wisdom of four spinal neurosurgeons backing-up the decision-making process.
The way the orthopaedic neurosurgery teams involved me in their decision-making processes and kept me informed is exemplary and is something we could adopt to improve our decision-making process in MSology. For example, instead of giving a patient with MS two or three DMTs to choose from, we should say although you are eligible to be treated with DMT A, B and C we recommend DMT B for theses reasons; i.e. guided-decision making.
Insights: Informed and shared decision making in clinical practice is not what it says on the tin. To become informed takes more time than you realise and I propose we replace the term shared-decision making with the term guided-decision making. This term clarifies for me many ambiguous feelings I have had about shared-decision making around DMTs in MS. At the end of the day, the HCP is in a much better position to make a decision around DMTs for pwMS and to guide the patient in the right direction.
I was very fortunate to have access to state-of-the-art technology to fix my pelvis. Are there ways to drive the rapid adoption of innovations in the NHS? This is a longstanding problem in MS and is the primary motivation for our ‘Brain Health: Time Matters in MS’ policy initiative and why I spend so much of my time on MS educational activities.
A major part of my treatment was pain control and this was all over the place initially as I had three different teams making changes to my medications. The thing about pain management, like other symptomatic treatments, is that you need to make one change at a time and then give it time to work or not work before making subsequent changes. When you make two or three changes at once you don’t know what is working and what is not. However, this was sorted out once I saw the specialist pain team, who then took over my pain control. They first listened and documented my pain history before suggesting a change to my medications. They involved me in the decision-making process and created rules that I controlled, i.e. the frequency and dose of the top-up morphine was in my control. They initially cut back on and then gradually increased my gabapentin dose to allow me to get used to the medication. This strategy worked well and improved the side effects I was experiencing, particularly the excess sedation. Once there was one team in control of my pain things rapidly improved.
Insight: When managing symptomatic problems let one team take responsibility for the problem concerned and try not to make too many changes at once and when doing it make the changes slowly. This insight is very pertinent to the management of MS.
Insight: The dysphoric and sedative side effects of opioids in combination with other sedating drugs, such as the gabapentinoids, should not be underestimated. Clearly, this lesson extends beyond these classes and combinations of drugs and includes drugs like baclofen and amitriptyline. The torpor (a state of physical or mental inactivity or lethargy) associated with this side effect is very debilitating and explains why so many pwMS are unable to function mentally when their load of CNS sedating medications is often very high. HCPs should tread carefully when prescribing sedating drugs to pwMS; give them control to adapt and change the dose titration.
Post-fixation
Even though I have had all my fractures stabilised and ‘fixed’ it takes an enormous amount of effort to do anything physically and/or mentally; just getting up in the morning is exhausting. In addition, things that would take no time at all now take three or four times longer to do. For example, it typically took me about 15 minutes to shower and dress in the morning. It now takes me at least half an hour to shower and I then need to lie down and rest for 30 minutes to allow my neck and arm pain to settle and to recover from the physical exertion of completing the task.
Insight: The impact of diseases, such as polytrauma or MS, on mental and physical fatigue should not be underestimated. Relatively simple tasks including activities of daily living require enormous effort and it is virtually impossible to do two things at once. I now know why many of my patients with MS have trouble with simple physical and mental tasks and with multitasking; when you don’t have the bandwidth even simple tasks require everything you have both mentally and physically to complete.
Help
I am currently an invalid and hence I can’t live independently. In the hospital, I was dependent on the nursing staff for most things and now at home, my wife is my carer. She has to help me do the most basic things. This is very frustrating. In addition, I can’t contribute to household chores, such as shopping and cooking. I am very appreciative of her help and I am trying not to take her for granted in her new role as my carer.
Insight: At least most of my injuries are potentially reversible and things are and will continue to improve. For people with MS this is not always the case. I can only imagine the mental toll the latter has on my patients and their families, i.e. knowing that things will potentially get worse in the future. When I get back to work I am sure I will have more empathy around worsening disability in pwMS and how unappreciated carers are in the management of MS. I think we need to include carers in our sphere of influence as MS HCPs. What can we do to help carers adapt to their new roles and what can be done to make sure they have the right skills. For example, nobody discussed anything with my wife before my discharge; she has had to learn her new role very quickly. I am not aware of any MS Carer training programmes, but I suspect these already exist and are run by neurorehabilitation units. This is something that I will explore with our MS Academy Rtb initiative as part of our drive to share best practices.
This is just the beginning of my catharsis from the trauma of the last two weeks. As things come to mind I will write them down for discussion.
The fact that I have managed to write this piece, albeit lying on my back, with an uncomfortable neck brace on and using periscope glasses is a testament to my determination to get better and functional as soon as possible. Due to persistent arm pain, sedation and tiredness I have had to write this post in four sessions and it has taken me a lot longer to write than what it would have taken prior to my accident. It is clear that my life is currently being lived in slow-motion with a massive reduction in bandwidth. My attention span is maybe 20–30 minutes, which means I have to take frequent rests and I can’t multitask at all.
Thank you
Despite the inconvenience of this episode, I am determined to make it a positive experience. I am lucky to be alive, lucky not to have had a major head or spinal cord injury and lucky to be able to reflect on my experiences. In addition, this accident has shown me how important your social networks are in helping you cope with the consequences of being injured. I want to thank the NHS, my colleagues and friends, the wider MS community and my family for their help and support during this difficult time.
A big thank you to my colleagues in both the NHS and University for picking-up what they can in terms of my workload. I left behind a large NHS back-log that Dr Dobson, Dr Smets, Dr Turner, Freya one of our MS CNS, Patricia our MS pathway coordinator and my other colleagues have so kindly cleared. The Mouse Doctor (aka as Prof. Baker), Prof. K (Prof. Schmierer), Dr Marta, Dr Love (Prof. Amor), Dr Salek-Haddadi and others for taking on my teaching commitments. Then there are so many other colleagues who work with me on other initiatives who have taken up the baton; thank you. A special thanks to Stephanie, my assistant, and the other managers for being so helpful and supportive.
Prof. Andrew Less, who is one of my mentors, sent me a wonderful email full of sage advice about using my time off work to reassess my priorities. I can’t go back to the same-old when I return to work. So over the next 4–6 weeks, whilst I hopefully make a full recovery, I will be doing just that reassessing my priorities.
But before then I have already set myself a new challenge called “ Prof G’s crutches to 500m Challenge “ to try and hit our target of £25,000 to support Dr Ruth Dobson and Dr Angray Kang’s COVID-19 MS Antibody Study. It is so important we get this study completed before COVID-19 becomes history. Please note that all of the money raised will go to Queen Mary University of London to support MS Research.
Thank you
Twitter: @gavinGiovannoni Medium: @gavin_24211
Originally published at https://multiple-sclerosis-research.org on November 23, 2020.