I am a big proponent of self-management and patient activation. However the problem with both is that they take time and energy and when you are exhausted it may become overwhelming. A large number of my patients are very frustrated with how the NHS functions and they often ‘rage against the machine’. The personal view below about a patient trying to cope with self-management in the NHS is typical. The problem we have is we don’t have the resources to run a Michelin-star service and we have to rely on you to help us.
Patient activation, self management, shared decision making . . . all of these sound great. I would be very happy to self manage—if I could figure out how.
Seven years ago I was diagnosed with stage 4 diffuse large B cell lymphoma. Chemotherapy pushed the disease into remission but it also left me with long term side effects, one of which is a poorly functioning immune system. I can just about manage the immunoglobulin infusions, blood tests, flu jabs, and infections—but if you add anything else into the mix my carefully self managed house of cards collapses.
Last summer, for example, I developed an unusual patch of skin on my leg. Years ago I had something similar and it turned out to be from an autoimmune condition. “Isn’t it strange,” I said to my immunology nurse, “that someone with a weak immune system would also develop an autoimmune condition?” Quite frankly I was a bit miffed: my immune system can’t fight off the flu but it’s attacking me instead?
In June I saw a consultant who said my immune system was “confused” and promised to refer me to a dermatologist after I had had some blood tests. A few weeks later I got a letter telling me that I needed a liver ultrasound because of my “long term elevated liver function tests.”
Thinking that this was a mistake—no one had ever mentioned my liver before—I queried it. The consultant confirmed that I did indeed have long term elevated liver function tests and that I definitely needed the ultrasound. So, a few more weeks later, I went for the ultrasound—and was told that, while my liver was fine, my kidney needed to be looked at.
According to another doctor who followed up with me, there wasn’t—and never has been—anything wrong with my liver function tests. And, no, he didn’t know why I was sent for the ultrasound.
I still don’t know what is wrong with my kidney since I’ve never had anything in writing to describe the problem. Two weeks after the scan of my kidney, I have no idea of the results. And I never had that dermatology referral that I asked for in June.
To be honest, I’m mentally exhausted. I work full time, I have a small child, and—in between medical appointments—I try to have a life. Should I be worried about my kidney? Should I be “actively” trying to “manage” the situation and find out what’s wrong? Probably.
But I’m tired. I’m tired of hospitals, I’m tired of worrying, and I’m tired of not knowing what’s going on. I manage my weak immune system as best I can—I take a ton of pills on a daily basis, I never miss an immunoglobulin infusion, and I keep a close eye on my blood test results. All of that, plus the worry of relapsing with lymphoma, keeps me busy and stressed. Being thrown into a Kafkaesque nightmare where serious things may or may not be wrong with me feels like too much.
Patient activation sounds great on paper but people often forget that patients can only be activated in a system that enables it.
An enabling system is one where the right result would be given to a patient with a clear explanation of what it meant and what follow-up was needed. An enabling system would tell a patient if they needed to worry, or if what was being investigated was unlikely to seriously impact their quality of life.
In my daydreams the solution to my problems is a “health PA.” This competent and organised person would keep me in the loop on a need-to-know basis. They’d find out what tests I needed and why. They’d tell me if the results looked good, and they’d tell me when I actually needed to worry. The rest of the time, I’d leave it all to them while I carried on with my business.
I realise, of course, that this solution is unlikely to be realised, not least because I can’t afford it. Until I win the lottery, I’ll try and muster the energy to keep plodding away on the path to health, one scan at a time. And I hope that one day a dermatology referral letter will pop through the letterbox.
All points to the ongoing need for the MS nurses – I expect it's the non-MS issues that are the straw that breaks the camel's back. As soon as more than one hospital department is involved, there'll be communication issues. I'm reminded of my elderly mother in her last years, saying (with some truth): 'I know every bloody department in this hospital'.
"Do you find self-management overwhelming?"No. Being misdiagnosed, misinterpreted, misinformed and mistreated by the NHS is overwhelming. Self-management is just me and the ms, taking it as it comes, one day at a time, without the added stress.
Ceinwen Gile's story will be all too familiar to many of us. Dealing with the near-shambolic incompetence and sheer indifference of some parts of the NH"S" can be exhausting (thankfully there are some excellent HCPs in among it all).I have PPMS and, for me, self-management is essential. I like the idea of the group clinic you're proposing and would be more than happy to participate. In practical terms, for those of us outside London it may often be too difficult to travel to Barts so phone- or video-conferencing facilities would be useful.
Re: "..phone- or video-conferencing facilities would be useful."We are in the process of setting-up Skype clinics. We already have the ability to do telephone clinics already. They are still part of he NHS and we would be only able to offer the service to patients registered on our service.
I am my partner's health PA. I took on the role because I watched her trying to keep everything connected and flowing (making appointments, dealing with multiple specialist and appointments which are dependent in timing on one another, f/up all the referrals discussed in appointments, making the referral appointments, fighting with guard-dog secretaries (or their bosses) when an appointment doesn't happen quickly enough, finding an alternative specialist if any of them is not meeting my partner's needs… I could go on and on and on). I took on this role voluntarily because it occurred to me that I am a lawyer and what is needed to help a person with a chronic illness and a multitude of specialist is exactly what I do for my clients day in day out. I want to emphasise that my partner is more than capable of looking after her own health and dealing with doctors and their practices – but the job is simply too big and too stressful for one person. Plus having me as her health PA helps us play good cop bad cop and get results. I cannot even begin to count the amount of times I had to throw what I call a ‘scary legal tantrum’ to get things moving (and it’s not my fault it works).Since I became my partner's health PA, I am staggered at the amount of time it takes to keep all ticking. 2-4 hrs per week on average is prolly a fairly accurate estimation, more when there is stuff actually going on. It is simply a job too big for one person. More than that – it is a friggin stressful job. Especially a person who has to deal with the actual illness also. Not to mention that the whole experience can be exceedingly frustrating – even for a lawyer who deals with bureaucracy all the time. I have learnt that if I sent requests from my work email they get attended to much much quicker, because people assume they will in get in trouble because there is a lawyer acting for their patient.Isn't that sad? I really feel for people in the author's position. I find that most doctors do not even begin to understand the magnitude of the problem or the extent to which it can hurt: so thank you for this entry.
i think this is semi-relevant here….i was recently challenged by a practicing (non-neuro) clinician that patients could never understand or comprehend clinical data, particularly with regard to DMTs. i was frankly stunned by this comment, found it derogatory, arrogant and more importantly wrong. i was wondering what the community felt on the subject
People with big egos need to maintain those egos by pretending that no one else can possibly grasp what they do (that enables them to feel very smart and above everyone else). On a population level they're prolly almost right: many won't be able to, without assistance (many people would be able to if someone sat with them and showed them how to interpret).On an individual level: they're not only not right, their comments border on moronic. I am confident I can interpret DMT stats almost as well as half the docs: though yes, it prolly takes me 4 times as long to figure it out (I remember it took me 3 hrs to get through a 5 page journal article on Tysabri once). When I just don't get it, I ask for help and lucky for me, I'm surrounded by people willing to sit with me and help me. I wonder if that practising clinician just can't be bothered helping 🙂
i think you hit the nail on the head!