Barts-MS rose-tinted-odometer: ★★★★★
R-squared = resilience x reciprocity
Resilience = the capacity to recover quickly from difficulties; toughness.
Reciprocity = the practice of exchanging things with others for mutual benefit, especially privileges granted by one country or organization or person to another.
Health and wellness can’t be taken for granted. For the body and mind to navigate life as best it can it needs to be prepared for its eventualities, which in some cases are a certainty. At the beginning of the COVID-19 pandemic, I actively promoted the concept of prehabilitation, i.e. doing everything you can do to improve your general health so that if you got COVID-19 you could deal with it and hopefully prevent yourself from getting severe COVID-19 and thereby reduce your chances of dying from the infection and/or its complications.
Another way of looking at this concept is building ‘biological resilience’, in other words, maximising your ability to recover quickly or cope with difficult situations be they infections, trauma (falls and fractures), MS relapses or even disease worsening.
Prehabilitation is preventive medicine. Prehabilitation is undertaking a health & wellness programme to deal with a known stressor in the near future. In surgery, this is typically a planned or an elective surgical procedure, such as a hip or knee replacement or cardiac surgery. However, widening the concept to medicine, for example, to include so-called known-knowns, unknown-knowns and known-unknowns in relation to immune therapies make sense.
Known-knowns = these are adverse events that are known to occur in relation to specific immunotherapy, for example, hypogammaglobulinaemia from prolonged treatment with anti-CD20 therapy. In terms of a specific prehabilitation programme, you could check and manage hypogammaglobulinaemia as it develops or develop a new treatment paradigm (induction-maintenance) that derisks patients when they develop hypogammaglobulinaemia.
Unknown-knowns = adverse events that have not been described yet, but based on scientific principles are likely to occur in the future, for example, meningococcal septicaemia and meningitis in patients on anti-CD20 therapy. This prediction based on the observation that people who have had a splenectomy or have low IgM levels from other causes are more susceptible to infections with so-called encapsulated bacteria such as meningococcus. In terms of incorporating this into a prehabilitation programme would be to offer patients the meningococcal vaccine if they are at high risk of being exposed to meningococcus (army recruits, university students, etc.).
Known-unknowns = adverse events in people with other diseases on a particular treatment that has yet to be described in people with MS on the same treatment. For example, people with rheumatoid arthritis and lupus treated with ocrelizumab were more likely than control subjects to get pneumococcal pneumonia. Therefore, we can assume that pwMS on ocrelizumab are increased risk of pneumococcal infections. Part of the prehabilitation programme, to derisk this, would be to ensure all pwMS have the pneumococcal vaccine prior to starting an anti-CD20 therapy and to then have their boosters every 5 years.
The examples I give above should be relatively easy to understand but are passive in that they rely on the HCPs to have systems in place to derisk specific MS DMTs. However, when it comes to optimising your general health so that you have biological resilience the story is different. Here you as pwMS need to engage with the general principles of prehabilitation and prepare yourself, for example, to help make sure the infections you acquire are mild and to maximise your chances of making an uncomplicated recovery.
This is when reciprocity applies, i.e. the practice of exchanging knowledge with your HCP for mutual benefit. In other words, by you entering into a well-defined partnership with your HCP you will hopefully maximise your outcome and at the same time to reduce healthcare expenditure. In this partnership, your HCPs (neurologist, MS nurse, GP, etc.) will inform you of the aims of the programme, which may include some healthcare intervention, for example, vaccinations to prevent specific infections, an exercise programme to prevent falls, dietary advise to lose weight, medication to help you stop smoking, a social prescription for a personal trainer, which then it requires you to adhere to the programme. Reciprocal agreements are based on trust and only work if you trust each other (I wonder if the British and EU politicians understand this?).
These concepts of resilience and reciprocity go well beyond the management of MS and apply to health in general and other social and political interactions. For example, in the UK the NHS will always look after you if you develop a disease, but the NHS or greater society are asking you to be more careful with your life choices so as to reduce your risk of getting certain diseases in later life. Unfortunately, the behavioural interventions that public health bodies and the NHS promote are not always backed-up by the actions of our politicians, for example, an adequate sugar tax or minimal pricing of a unit of alcohol to act as disincentives for obesity and its associated ills and alcohol misuse, respectively.
Saying this I think we need to start activel working into our thinking ways to include R-squared into healthcare. What can we do to make the MS population more resilient? What do we need to do to remind both HCPs and pwMS that the optimal management of MS is based on reciprocity?
Having suffered a catastrophic loss of wellness with my recent accident makes me realise that my relatively rapid recovery has something to do with my general health and fitness (physiological resilience) and my determination to remain positive (mental resilience). However, my recovery back to a new normal now requires me to stick to my rehabilitation programme. The surgeons did what they were trained to do, i.e. fix and stabilise my fractures, and the next phase of my recovery is up to me. I have been given an exercise programme by my physiotherapists and medication to help deal with the pain. My part of the relationship is to take the medication and stick to my exercise programme.
To paraphrase John F. Kennedy’s historic quote in his inaugural presidential lecture, “Ask not what your country can do for you – ask what you can do for your country”. “Ask not what the NHS or your MS team can do for you – ask what you can do to manage your own MS”. What can you do to build physical and mental resilience and how can you optimise the reciprocal relationship with your MS team to make this happen?
In reality, the concepts of r-squared (resilience x reciprocity) are what we are really trying to achieve via our Raising-the-Bar initiative as part of the MS Academy. The only difference is there is another tier above the HCP-Patient relationship in that we need to interact with the NHS or healthcare system to make sure that the necessary resources or infrastructure are in place to implement r-squared.
As people with MS do you think the issues raised in this post are relevant to you? How would you feel if we developed a formal agreement or contract for both parties to sign in relation to the HCP-patient partnership? The latter is not a new concept and is used widely in psychiatry.
Crowdfunding: Please note I manage to walk over 3 km yesterday and it is looking likely I will be able to walk 5 km before the 31st of December. It is not a done deal yet so if you haven’t supported my challenged there is still time 😉 We are getting very close to our fund-raising target so hopefully, this will be the final push and I can stop promoting fundraising. For those who have given already, thank you. Click on the link to support Prof G’s ‘Bed-to-5km Challenge’ to support MS research.
CoI: multiple
Twitter: @gavinGiovannoni Medium: @gavin_24211
