Barts-MS rose-tinted-odometer: ★★
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
Wow – approached like a true medical academic! 😆 Delighted you are healing and being positive.
Lots of insights. The one that caught my eye is the inappropiateness of your having to choose your own surgical treatment at various points. And you are a medic! As a non-medical ms’er one of the most stressful parts of the whole illness and diagnosis process for me was having to choose my own treatment. Why, oh why? Found myself reading medical papers, boring medical friends,.not sleeping with the worry of what to decide … Is this really appropriate? Really don’t think so.
Yes, I agree with you hence my use of the term ‘guided-decision making’ rather than ‘shared-‘ or ‘informed-decision’ making. Let’s admit that very few people have enough time or the capacity to decide on their own. Saying that I can think of many exceptional and determined patients I have seen who know what they want.
Not sure I agree.
Perhaps initially when first diagnosed with MS, but now being an expert patient it’s different. My generalist neurologist offered me only injectable DMT’s for my first DMT. Then I read up about DMT’s and found out there is much more available. I found out about Lemtrada and it was available then and I did fit the criteria. I asked the generalist neurologist about other DMT’s and they said I would need to see an MS neurologist to have any other DMT’s.
Slow adoption of innovations is one of the biggest hurdles in the effective management of MS. This is why we need education on both sides.
But, does everyone have the time and capacity to become an ‘expert patient’ when needed? Most are at their lowest physically, emotionally and mentally when first diagnosed and having to make a decision about treatment. Surely not the best time to be going into databases and trying to find out about DMTs. Really a point when many want expert advice they can trust.
Dear Prof, I am glad that you’re on the mend. It sounds like it could have been a lot worse and as you say, lucky to be alive even. We will await for the post titled ‘Spared’. I am not overly religeous but i do believe some people are given a reason to live. Was yours to cure MS? maybe, maybe not but i hope that the responses on this blog have shown you just how damn important you are to this vulnerable community. For now, it is time to rest and recover but your cape is waiting in the phonebooth for when you’re feeling better
Really interesting. Thank you for your very honest assessment of your situation and seeing the view point from the patient perspective ( both for yourself personally) and your own patients in the future. Particularly pertinent about lack of support and information for carers and the importance of single treatment pathway. Very best of luck with your recovery and rehab.
I agree, a great point about “carer” needs and the important role they play in supporting a person living with MS. The psychological impact of “falling” into this role is also so often missed. “Carers” resent the label, they are first and foremost family. Helping people understand and accept their new role is as important as helping them set boundaries in that role too. This is as important as the education too!
Reading your reflections on the care you have received it seems to me like you describe containment with regard to every aspect of your care, this must be reassuring as a patient. The structure of lists and protocols and a designated case lead seem to help a lot. Again an example of the NHS working well in crisis.
As someone diagnosed with MS just over one year ago I envy that feeling of containment in your care, my experience feels chaotic and haphazard. Granted MS is not as clear cut as broken bones, but I have no doubt some of the learning and practice could and should be transferred to MS care to improve the overall patient experience.
I certainly understand your need to take time to rest and recover and reevaluate, but I hope it’s not to the detriment of us with MS whom you champion👏
Prof G,
Thanks for sharing your experience.
Perhaps the most important “learning” from your awful accident is this:
“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”.
My neuro had no empathy at my diagnosis and I was told to head off back home and, if I had a second relapse, that I might be eligible to start treatment. I’d seen what MS can do to a family member (died at 48), but my fears were brushed aside as the neuro said I might have a “better course”.
I would like to see MS become an acute rather than a chronic disease. Early diagnosis, a combo of treatments to address all the different disease processes etc. should make this achievable in the not too distant future. An MSer in the future would be diagnosed and treated so that MS has no noticeable effect on their life. Like you, they may get an odd twinge 10, 20 years later as a reminder that they had experienced an injury, but not continuously accumulating disability / damage.
I wish you a very speedy recovery. Like you, I had a wonderfully supportive family to fall back on. A week away somewhere hot / relaxing in April / May would be a nice thank you to Mrs G and something to look forward to.
Thanks, Sid. Yes, we at Barts-MS are trying to push MS as an acute disease. This hypothesis will hopefully be tested as part of our #AttackMS trial. I completely agree with you and want to reiterate that ‘Tine Matters in MS’; time is brain and spinal cord and that the sooner we treat MS effectively the better the longterm outcome.
What a remarkable account! and with the special caveat that these reflections have been made in pain. I can’t help feeling that this gives them special power and relevance. A landmark for many of us.
Very best wishes for the road ahead.
Your Wife is a Saint 🙏🏼 🌺
Your Experience sounds so difficult and your hospital stay efficient and got you out of there.
The Neurosurgeon encounter was interesting. He may have thought You would have a preference. Personally I would choose posterior because I don’t want them cutting my throat.
I wanted to see you describe your PT/OT/Speech evals and plans.
MS patients also benefit from periodic evaluations, goal setting.
OT could have helped with bathroom strategies, home care.
MS is a good diagnosis for checklists, clinical pathways, decision trees.
Advanced Practice Nurses help a lot.
Patients should have their own chart. And access to decision making tools, research.
We’re strangers praying 🙏🏼 for You and Yours out here.
Heal well! Take Your Time.
My next post will be dedicated to the nurses, nurse assistants, occupational and physiotherapists involved in my care. They are the unsung heroes and heroines in my journey. I only have admiration and new-found deep appreciation fo their role in my care. They are the ones who dealt with all the small often forgotten issues that get you functioning and out of the hospital.
Dear Dr G, so pleased that you are home and beginning your rehabilitation. Thank you for your insights. I agree with all of them and yes please, please, please to checklists. Have you or any of your team read The Checklist Manifesto: How to Get Things Right by Atul Gawande? It militates for checklists in medicine. He’s coming to it from trauma and surgery but recommends it for all branches. My experience has been at minimum chaotic, shambolic, not joined up. I’m very fortunate in that I’ve never had brain fog so have been able to read and discuss the world MS (and the blog is part of that). Please send your wife all my best wishes, her trauma and fears may not have been acknowledged but we do. Already looking forward to your next post.
All the vey best Ruth
Dear Professor G, it was very moving reading your accounts of your treatment after your accident. You give a vivid sense of the urgency of decision making as well as the ramifications of any choice made by a medical team with the patient. I just feel very lucky that we live in an era where such technology and expertise is available, (in Britain, at least). I hope you recover soon and your wife can also have short breaks when she needs them!
Good news for a Monday, am very glad things are looking up for you and it sounds like you got some of the best care possible – as you should!
Very interesting assessment of everything, thank you for sharing with us. Especially the patient decision making.
When you explain the 18 years training and you being given that decision, it did make me laugh! I suspect the majority of patients wait to be given advice once questions are batted back, or if they have a strong opinion re: one route, their mind may be changed anyway after the MDT. Then there is the illusion of choice and a patient who has fully bought in. I guess this is also a psychological technique to help with recovery if you’ve had a part in it?
In regards to Anon comment below re: MS DMT’s – “Found myself reading medical papers, boring medical friends,.not sleeping with the worry of what to decide … Is this really appropriate? Really don’t think so.”
Personally I’m the kind of person who wants to research my disease and treatment in the most informed way, I like to know everything I possibly can. I enjoy learning and reading about this stuff. My sister who also has MS, is not like me, I can’t imagine her googling medical papers (despite being a nurse herself). I’m the one who’s on the high efficiency treatment and she isn’t – I would say her MS became more active than mine before we both started our DMT’s too. There are two reasons for this – not really being offered/pushed it by a neurologist and the patient not pushing it themselves. As you said, it really shouldn’t be that if you’re not the latter type of patient your treatment in any medical situation that your treatment is ‘downgraded’. Preaching to the converted here though!!
Anyway, take care of yourself and sending more healing thoughts your way 🙂
Looking good Prof G, hope ur feeling better xxxxx
It seems you are a hit with the ladies Gavin, with your stubble!
Lol – of course! Do like a bit of stubble and Prof G does look like Paul my boyfriend 😎
Not the best way for a doc to find out what it’s like in some ways for us lot, but I appreciate the fact you have acknowledged it.
Best of luck on your recovery
Nice look
Nice post
Glad you are recovering
Spinal Cord Injury – diagnosis, treatment, recovery.
Video from Barts nhs trust team
Stay strong
Great post, Prof G.
If you have this much insight and are able to write so thoughtfully when lying flat on your back, sedated, fatigued and in pain, then there’ll be no stopping you when you’re back to 100%.
Listen to the advice of Prof Lees though! I was slightly alarmed when I read about the latest challenge you’ve set yourself and would rather donate for you take it easy for a while than to push it and set yourself back.
Regarding the term “guided-decision-making”, until recently I have always trusted health professionals to know what the best course of action was.
Finding this blog in the spring and reading about the flipped pyramid while at the same time being told by three different neurologists that no drug other than Copaxone comes in to the equation right now makes me very confused and conflicted (and like a stuck record). Like many other readers, I’ve tried reasoning and talking about recent studies, but to no avail. For me, this is the most frustrating part of my treatment. A brick wall rather than guidance and admonishment instead of explanation or reasoning. For now I’ve decided to give up on that battle as it was emotionally exhausting and was causing too much anxiety given everything else that is going on.
I wish you a speedy, uncomplicated recovery, obviously first and foremost for yourself and your family but also for us – the wider MS community. The support we get from you and your team is fantastic.
Anyway, as I’m not as eloquent as you, I’ll finish my reply by bringing the tone down and saying what a mighty fine addition the stubble is. That should stay long after the periscope glasses have gone!
Guided decision-making – I was given a choice of four treatments including copaxone and beta-interferon which felt like they were just put there to pad out the list! Why would I ever choose a less effective medication with an unpleasant delivery method and. The other two options were Tecfidera and Lemtrada, and I was so relieved when my consultant said he strongly recommended Tecfidera.
With the benefit of hindsight, I actually wish I was on Lemtrada now. But had the advice been different, I probably still would have chosen Tec, because that’s where my head was at the time. So I’m still really glad my consultant recommended Tecfidera. And I’m glad I was given a choice – I didn’t know I would get to choose, I thought I would be forced into something I didn’t want (daily injections).
Dear Prof Welcome to the real world of medical care-but so sorry you had to meet it this way. Those of us who have battled to get better care for those who have MS for many years are only too aware of the pitfalls and frustrations that the silos of care expertise and lack of real-world experience throw into the ring every day. Thank you too for remembering that some AHPs can provide important links between medical practice and real-world needs of those who have to cope with difficult long term conditions. Its not only about protocols and “best practice” by any means!
Dear professor Gavin Giovannoni,
I can’t wait for you to feel a little bit better. I sincerely wishhh you the best and don’t give up these days will pass these days have not come to stay but they have come to pass. With every passing day it will get a little bit better I promis. We are all rooting for you. Just take things one step at a time at your own pace don’t try to push yourself more than what you are capable at the moment. You will get through this. Things might bit a little harder now but remember the best is yet to come. 🙂
Sid said something wise here. A sunny break for you and especially Mrs G next spring. SA springs to mind. You may well be glad to see the old country again after your brush with death.
Meanwhile I have a cunning plan over funding for the antibody research. Started putting it into practice this morning and got a passer-by to photograph me to prove `I was doing it. More in due course…Might spare you from the 500m walk.
I will document the distance using my Garmin GPS tracker.
My reactions to your post echo most of the replies you’ve already received ProfG:
Lucky to be alive and not to have sustained injury anymore horrendous than you already have.
Impressed by your reflections on your experience as a patient and how you’ve applied this to those of us with MS and our families/carers.
The sad truth is though that I think we are still a million miles away from the provision of joined up (except briefly for pain management) that you’ve experienced in acute care.
In 2018 the Institute for Fiscal Studies and The Health Foundation produced a report: ‘Securing the future: funding health and social care to the 2030s’ I’ve by no means seen or read the whole report, but I can share one thing that was tucked away in what I think is chapter 3. This small paragraph screams out what a world of difference there is between acute and chronic when there’s not even some of the vital data required to make for informed planning.
‘Our model for acute care (inpatient, outpatient and A&E) is the most detailed. We are significantly hampered by major gaps in the data for community and primary care as there are no robust national data on the amount of care provided in these settings. There is little evidence on how care needs vary with patient characteristics, such as chronic conditions.’
There will always be a few in the vanguard who endeavour to engender progress and change and those of us who access the Blog are beyond words with gratitude that we have you in the MS corner in this regard. Despite your drive, ambition and achievements I can’t envisage wholesale changes to the status quo and will hope instead for some valid piecemeal improvements.
Ongoing best wishes to you in your repair and recuperation.
All the best to your wife also in her new primary role.
Wishing you a speedy recovery from everyone on the team in MS Ireland.
Bravo, Prof G. Such a thought-provoking piece.
Over the past 20+ years, I have grumbled many a time at social media questions from baffled MS-ers who have been left (or feel they have) with a sheaf of leaflets and told to choose between Avonex and Tysabri as if this were a beef-or-chicken decision. There is definitely room for improvement there, and your point is well made.
Also the excellent check-list point. It is good to hear that medicine – trauma medicine, at least – is finally learning from other safety-critical activities like aviation and nuclear power station operations in which the routine use of check-lists has been mandatory and well established for decades. That has been some time coming, and there’s a way to go still.
Good wishes for your continuing rehabilitation.
Hi Prof G ( cuz) so happy you are on the mend so.many things you mention are what i experienced with my L4/5 S1 fusion 15 years ago i woke up with paralasys of my right leg from the knee down and had to learn to walk again i tried to concentrate on just getting through each day and look back at the previous day to be see the proress i was making i listened to my body and my dr and didnt try to do things before my body was ready it took 6 months to get 90% feeling back in my leg i still experience muscle cramps occasionally stay positive and above all be patient with yourself you are in a marathon not the 3 minute mile
As always, a very thoughtful piece focused on one of Professor G’s highest priorities, improving the care of patients living with MS.
Wishing Professor G an uncomplicated and successful complete recovery.
Well done Prof G and keep getting better xxxx 😎
I hope your mental and emotional health gets some consideration too, you are going through such trauma. Everyone handles thing differently and some are more resilient than others but I think what has happened to you would be an emotional hurdle for anyone. Best wishes.
Very well written.
Finally got around to donating. Although quite honestly, I would prefer if resources where spent on addon therapies rather than COVID related stuff – COVID will (mostly) be history in the not too distant future (if the current vaccines really do work and can be scaled sufficiently, probably sometime in 2021), whereas MS will sadly stay with me…
Not quite sure how opioids could be considered dysphoric though, the 8 hours of my life I spent on morphine drip clearly were anything but (never mind the excruciating pain I was under).
Thanks for your support…to do add on therapy studies will require a significant level of funding and ProfG has stepped in to try an fill the void created by loss of support due to COVID-related issues…However, the plus point is that, in doing this study we have learned alot and have shaved off weeks in the time taken to make reagents. Importantly we believe we can adapt the technology to remotely monitor drug responses and have picked up positive responses in samples taken months earlier and stored at room temperature. Importantly we can do a number of tests from one single drop of blood sent in the post.
Godspeed on a quick recovery….BTW your surgery left you as Gary Oldman’s doppelganger😊
https://images.app.goo.gl/SsD9HXdZrkAUwcb39
I’m sorry to hear of this whole traumatic episode for you and pleased to read that you are on the road to recovery. This piece is really well written and clearly from the heart. Definitely some insightful thoughts. Perhaps when the time is right and you are considering implementing some of your ideas, a contributing panel of stakeholders, including pwMS and carers could be a way forward.
Wishing you a full and speedy recovery.
Incredible post Prof G
You have more bandwidth than many of us do
Re the point about becoming an expert patient – that depends on bandwidth too
I had planned to become an expert patient
For some years I did try, but could not do it and eventually gave up (lacked grit, lacked energy, lacked brain power, lack something!)
Now I don’t even try to decipher MD’s scientific posts. I read just the summing up
And I really admire the many blog readers who can appreciate and understand the scientific issues