Patient? Or project manager?

Next week I’ll be seeing both my GP and my neurology consultant – not together, more’s the pity, however I plan to get the most out of these two separate though linked events. I haven’t always managed this in the past. Don’t get me wrong, I’m not knocking the NHS: I’ve placed quite a few varied demands on it in the last couple of years and several times it has delivered over and above expectations.
The trouble seems to be that as I get older (just had a BIG birthday) and my impairment progresses I’ve made the mistake of adding new conditions into the mix. Having lived practically all of my life with the effects of an acute polio infection in childhood, and then succumbing some twenty years ago to diabetes, damn me if I didn’t go and have a heart attack. And not just any old heart attack, oh no, but a ‘widowmaker’ – the majority of which are fatal. This is where the NHS shone, did the plumbing, and remarkably I came out of it with no heart damage. Rather shaken up, but that’s another story.
This tendency we have as we get older to add more impairments or conditions into the mix is called ‘co-morbidity’ in the trade, and whilst the medics are beginning to recognise co-morbidity, they seem to be struggling to address it. Following my heart attack, as a wheelchair user I was clearly a bit of a puzzlement to them in cardio rehab: couldn’t climb the steps, throw the medicine ball, ride the bike or walk the circuit. How to deal with the conflicting situations, I wondered? My cardio programme required increasing amounts of activity and exercise, whilst my post-polio is characterised by increasing fatigue and loss of muscle function.
Was there a medic who could help me? Well, apparently not. My GP and my three specialists (neuro, cardio, diabetes) never met each other, and communicated (sometimes) via letters that often they hadn’t read by the time I got to see them. I would often raise an issue with one of them, and they clearly thought I was speaking to the wrong person.
What does this mean for the punter? The various specialists don’t always know, or ask, what’s happening in the different areas of your life, so they might recommend or prescribe something inappropriate or impractical. You may even get conflicting advice (‘drop the statin’ vs ‘I’m not happy that you’re not taking a statin’) and wonder which advice to take. And then there is the combining and managing the various regimes and medications, lifestyle changes, self-monitoring and
adjustments. For more see here

And then, for goodness’ sake, there is your life, your family, friends, job to fit in and around!

I’m so grateful for the specialist skills of my consultants but have wished at times for some inter-disciplinary working. This is different than ‘cross disciplinary’ working: it implies active collaboration between consultants and medics in their different fields, not just good communication. It implies that all my consultants would have some way of taking account of the impact that the other consultants are having on my life. Until the systems are developed and in place to deal constructively with co-morbidity, my advice to anybody who finds themselves handling two or more impairments / conditions is to brush up on your project management skills, know what you want from your specialists, and have a plan to make it easy for them to help you.

Lorraine Gradwell

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About lorrainegradwell

Active in the disabled peoples' movement since the early 80's, stepping back a bit now but still speaking up and still looking for independence and an end to discrimination.
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3 Responses to Patient? Or project manager?

  1. Hello Lorraine – what a dilemma! You’re so right – patients have to be their own project managers, particularly when they live with more than one serious diagnosis. Your experience at cardiac rehab is a compelling story, as it illustrates how utterly unprepared such programs are for anybody outside the realm of “typical” heart patients. I hope your situation may have inspired at least one person on staff to become educated on exercise options for future heart patients like you. Thanks so much for including a link to my Ethical Nag post here.

    Hang in there, Lorraine!

  2. Pingback: Patient Centred? | richardcaulfield

  3. Jo Somerset says:

    This reminds me of when Sue was undergoing chemotherapy for cancer. The consultant advised that she may have difficulty ‘doing up small buttons’ as a result. But the major issue for us was her vastly reduced mobility due to 2 hugely swollen legs – completely overlooked by the doctor.

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