Sleeping on it

Two weeks ago today, I nearly ended up in tears in the moves as I felt so tired and had done for the previous few weeks.  It felt particularly unfair, as I had been making the effort to go to bed on time and get a decent amount of sleep.  You know, self-care and all that.

We've just completed a pedometer challenge at work, the challenge being to walk as many steps possible in a team of four, over a six-week period.  They have made for some interesting results.  Over the first four weeks my mean average for a weekday was 13318 and for a weekend was 7672.  (This did not include my mega walk of 32431. Even with that, I did not get the highest weekly step count for that week).

During the period, one of my colleagues who is a doctor worked twelve days in a row.  He is not the kind of person to make snide "you're lucky" comments about me sleeping for the whole weekend, but from what he tweeted, it did get to him.  Whilst I have no envy of working twelve days in a row, I do have a mild envy of knowing that you can rely on your energy levels to work twelve days in a row.

Whilst the average step counts for weekdays and weekends are not the definitive comment on my energy levels, it does highlight the difference between what I do during the week and what I feel able to do at the weekend.  The bitch of it is, that I do not know what is RA related and what is not and if I can't be sure what is causing it, I don't know how to fix it, if at all.

Last week on the other hand, I was out three nights of the week, didn't get enough sleep and felt entirely fine at the end of it, which makes no sense at all. Maybe the problem isn't the arthritis, it's the going to bed early.  I have no idea; I'm off to bed to sleep on it all. 

Mind the gap

AKA - putting my money where my mouth is

I genuinely don't know what it was or why, but when I saw this being re-tweeted earlier this week, something inside me snapped.  The link to the blog article is here and is about evidence based medicine, including the sentence: "In my view, the optimal consultation involves “shared decision-making”. One in which I and the patient together consider their options in the context of their values and beliefs and their attitude towards risk and uncertainty"  At which point, I decided I've pretty much had it with doctors talking about patient involvement.

In fairness, the irritation I've experienced is more at the idea of patients being a larger part of healthcare decisions (as per the back of the NRAS magazine, above), rather than patient involvement at individual consultations.  On a personal level, I've not really had  badly differing opinions with doctors when it's come to appointments.  Somewhere, I have a health plan thing (what is it I'd like to achieve) which was mentioned, created at a nurse-led appointment earlier this year and hasn't been referenced since.  My next nurse-led appointment is in February, we'll see if it makes an appearance then.  I had one appointment where I told the SpR that I wasn't taking the methotrexate as it made me feel sick; she told me that I'd just have to put up with it.  Uh, no.  I'm telling you the problem, I expect you to suggest what you think is the best solution.  But generally, I don't feel that doctors are making decisions about my health without including me in that decision.

The Arthritis Research UK website used to have a page listing examples of good practice - one of which was a hospital in Hampshire which had open evenings for all patients every six months or so.  (I can't remember the details, and I now can't find the link).  The idea was that patients and their friends/families could come along and meet other patients and their families and find out what was going on in the world of research.  I love this idea, because I find it very difficult to get J (my husband) to understand what it means to have arthritis.  The evening I told him it wasn't my fault I get wiped out by fatigue, and him replying that I need to take better care of my health was a particularly low point in our marriage. 

So, in the name of patient involvement I emailed my consultant (who apparently is the clinical lead for rheumatology services at his hospital) asking if he'd seen the website and saying that I think it should be brought to London.  I never got a reply.  No response to say he'd look into it (just because I think it's a brilliant idea, doesn't mean it'll be supported by the rest of the patient body).  No reply to say that he was the wrong person and to point me to the person who was.  Nothing.

The other thing I would love to be involved in, is training of doctors - especially specialist registrars.  I want to be able to share my experiences of what upset me and where I feel the gaps in my experience have been, to help them better support future patients.  About two years after diagnosis, I wrote a long essay about it all.  Earlier this year I wrote to both the NRAS and British Society for Rheumatology to say that I wanted to present it to rheumatologists, and did they know how this could be achieved?  The NRAS asked for a copy of my essay (edited version to be printed in the Winter 2016 magazine); the BSR said they'd keep my details on file.  

Not long after this, I read the King's Fund publication: Patients as Partners about collaborative working.  It should have been right up my street.  In reality, of the twelve examples of collaborative working given, only four explicitly contained a patient as one half of the partnership.  That's a third.  As in, less than a half.  Whilst I agree that collaboration across disciplines can pay dividends, I find the title of the report misleading.

More recently I've seen NHS England advice on getting involved as a patient (link here).  This looked more hopeful, but the opportunities to volunteer veered towards pre-defined roles, rather than for the patients who want to come along and say: "hey, I've had this idea...."  Whilst I've not looked at every link, my suspicion is that the roles are being defined by health care professionals rather than the patients themselves.  

If patient involvement in services is apparently so important - why am I finding the reality to be different from the what I'm being told is happening?  Does the NHS in my part of London just pay lip service to patient involvement?  Do clinicians and support staff agree with the idea, but lack the time to implement it properly?  Have I simply been unlucky.

Part way through this, I realised that medical deaneries are responsible for some elements of training.  So if you'll excuse me, I need to draft an email to our local deanery.