Self-agency in MS - is it realistic?
Self-agency in MS - is it realistic?
Can healthcare professionals (HCPs) expect their patients with MS to have self-agency and manage their own MS-related symptoms?
Next week, I am chairing a webinar on self-management in multiple sclerosis (MS). The panel includes a person with MS and several healthcare professionals. We had a pre-meeting to discuss the format and topics to be addressed. Surprisingly, self-management as a healthcare strategy is not embedded in the NHS and is currently poorly adopted. Why?
I suspect a politically connected national self-management champion will be needed to make something happen. When I asked the person with MS on the call if she had been given any guidance on self-management, she said no. This is slightly embarrassing as she attends our centre for her care. She told us she is self-taught. I suspect this is the norm as there are no well-established MS programmes, such as the NHS programmes for people with type 1 and 2 diabetes. This is a problem.
I asked for examples of promising self-management paradigms widely adopted in the NHS for a neurological problem, and nobody could give a good example, i.e. an exemplar. This is tragic. I feel we have to do something about it. I have been toying with the idea of creating a suite of applications to tackle managing MS-related symptoms for some time. These would be relatively simple online applets or standalone smartphone apps that first educate pwMS about a particular symptom, have a simple algorithm to allow self-diagnosis, and then a section instructing pwMS on managing the MS symptom covered by the applet app. This would include non-medical and potential medical interventions. The latter would need to be actioned by an HCP, but at least the pwMS will have been educated and attempted self-management options concerning a particular symptom before seeking advice and help from their HCP.
To get the NHS to adopt self-management, we must target symptoms that cause excess healthcare utilisation, particularly the problems responsible for most unscheduled or emergency hospital admissions. These include urinary tract infections, aspiration pneumonia, severe constipation, faecal impaction and finally, falls and fractures.
I have written extensively about these problems but have not yet put them into a self-management algorithm.
Would this be of interest to you? For example, step-by-step guides on managing your bladder dysfunction and preventing urinary tract infections, constipation, and faecal impaction.
Please see:
Clearly, the pwMS who subscribe to and read MS-Selfie are self-activated, comfortable with information-rich environments and, therefore, may not need these tools. In comparison, there are pwMS who don’t live in an information-rich environment because of lower levels of education, cognitive impairment, depression, denial, cultural aversion to ‘Western medicine’, lack of trust in HCPs, a belief in an anti-self-help conspiracy theory, poverty with lack of access to online resources, or one of the many other social determinants of health that prevent pwMS engaging in these programmes. How do we help these people avoid widening the inequality gap?
In this week’s budget, the chancellor announced a relatively large uplift in the NHS budget. I assume some of this budget will be allocated to pivoting the NHS towards preventive healthcare and adopting new and emerging technologies to improve efficiency. Let’s hope the NHS adopts a self-management strategy and embeds it into routine management. What it needs is a self-management tsar to achieve this. What do you think?
Our discussions made it clear that the third sector, i.e., charities, runs most self-management programmes, and they are done ad hoc and are not embedded with the NHS. One example we discussed was the MS Society’s fatigue management course. We also pointed out that these courses tend to be taken by the well-educated middle classes and are not designed for people from more deprived backgrounds. This is why it needs to be an NHS-led initiative so that it can be widely and rapidly adopted across the NHS when something works. The NHS has levers (carrots and sticks) to make this happen in primary and secondary care.
Another thing that we discussed is the impact austerity has had on the NHS. For example, it used to be NHS policy that all people with a chronic disease attended an expert patient course that taught them how to navigate the NHS and gave them the skills to ask the right questions and to know their rights as NHS patients. Because of austerity, many of these expert patient programs have been closed. This is a tragedy as they could be used to integrate self-management into the NHS. Have any of you attended one of the ‘Expert Patient’ courses? Did they help? Should they be resurrected?
I am aware that many pwMS are quite cynical about self-management and feel it is the responsibility of the NHS and HCP to look after pwMS. Yes and no. Yes, in a sense, we would look after someone with the disease who has a problem, but we would prefer it if our patients had agency, i.e. the ability to act, so that they could self-diagnose and manage their issues and only see an HCP when necessary. Self-agency can be empowering and give pwMS a sense of purpose rather than being passive healthcare recipients. Self-agency improves quality of life while reducing healthcare utilisation and improving MS outcomes. I have little doubt it would improve HCP satisfaction knowing that pwMS have improved their outcomes. In summary, a well-designed and implemented self-management programme will be a win-win.
Definition: Self-agency is the ability to act for oneself, such as self-diagnosing and managing one's problems and only seeking help from a healthcare professional when necessary. Is this feasible?
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Yes yes yes. I think self-management is not just feasible but is already a necessity considering NHS resource. I would love to see a self-management suite of apps or similar.
I attended an Expert Patients Programme in Manchester and it was one of the best things I’ve been part of in terms of helping me to self manage. Since MS is so changeable, however, this is the kind of thing I can see myself benefiting from attending once every few years.
None of the other patients who attended the EPP had MS but all of us shared similar concerns as a result of our health conditions (primarily around fatigue and pain) which meant there was a huge bank of resource to draw on simply by being in the same room together once a week for 8 week: the impact of that is also not to be underestimated.
Yes -absolutely agree with all of this. I’ve just moved and transitioning healthcare between one trust and another has been very difficult. It’s needed tenacity, lateral thinking and not taking no for an answer - it is not for everyone. I’ve bypassed the GPs completely and acted as liaison between the MS nurses in each trust - effectively I’ve done a self referral. They have all been excellent but the system is unnecessarily bureaucratic - not helped by the fact that the IT systems don’t ‘talk’ to each other. It’s also been exhausting which having fatigue in the first place is not ideal. Im tenacious by nature but anyone who relied on notes to be transferred and a new GP referral to take place would be waiting a very long time…