Quelqu'un que j'ai connu..

Last year, as you may remember - terrorists launched a series of attacks in Paris, most notably at the Bataclan night club.  One of the people killed (and the only British victim) was Nick, who I knew during sixth form. I don't remember the last time I saw him, but I do remember it was at a gig.  

Outside a few close friends and immediate family, it's not something I've really talked about.  At the time, I was totally lost in incomprehension as to how this could happen.  I felt (and still do feel) overwhelmingly sad for his family, as they don't get to watch him get old.  I was overwhelmingly angry that somebody has taken away his right to carry on loving, carrying on getting drunk with his mates.  They've taken away any possibility of him settling down with somebody, or becoming a father.  They've taken away his opportunity to travel and see more of the world.  I don't get how somebody thought that it was acceptable to do this.  I don't get it.  I just don't get it.  Never will do. 

The day after was horrible; finding out through Facebook that he had died, before it was officially announced.  I phoned a family friend who knew him (and used to go out with somebody in the music industry) to tell her.  Her first comment was: "the merch guy?"  So she knew, but didn't know that she knew him.  The Monday after, travelling on the Tube and seeing his face on every copy of the Metro all the way down the carriage, nearly had me in minor hysterics.  Yes, everybody will die at some point - but not like that.

Others before me have observed that language is all well and good, but when you really need it to explain your deepest widest thoughts, it betrays you and doesn't give you the words you need to explain exactly what you mean.  (The film Iris has a brilliant quotation to that effect, which I cannot find for love nor money).  But that was the case for me.  The best I could come up with as an explanation was: quelqu'un que j'ai connu quand j'étais écolière a été tué chez le Bataclan (il y a une an)  The incomprehension was so deep that I could only really explain what had happened in French.  

I knew that the run up to the first anniversary was going to be rubbish.  I think I had at least three occasions of crying in the loos at work.  (Trump being elected didn't help).  I went away specifically to avoid the news reports of the commemorations - and then messed it up at the service station we stopped at, by walking past the TV news at entirely the wrong moment.  

One year on, the the shock has gone, the immediate pain has gone.  The sadness for his family is still there; the anger that people thought that it was OK to kill is still there - and my goodness is there a fear that Brexit and Trump are walking us into the same mistakes and increasing the risk of another terrorist attack.

I still don't get it.  But at least I can now speak about it in English.

Putting my money where my mouth is - part 2

We're living in an age where online space is treated with similar esteem as real life space, so why do the same rules not apply with regards to the doctor/ patient relationship?  There seem to be many, and varied online spaces for doctors and healthcare professionals to talk to each other, but patients do not seem to be invited into that space.  By the same token, the NRAS website is designed for patients, rather than doctors - so it does work both ways.  
Surely, having doctors writing articles and posts, will just maintain the status quo that doctors have the power?  However, complaining that doctors have control of cyber-space, whilst not adding my voice to the conversation was my motivator in writing my previous entry.  

One of the doctors replied, linking me to another doctor in Portsmouth, who is a big advocate of patient involvement and who does read patient blogs as part of his work - which I think is brilliant.  Whether the doctors involved in the Twitter conversation will read this blog is anybody's guess.  The point is, if they do read it, it will be because they made the effort to look at my Twitter profile and click through to the link.  It won't be because I wrote something for the GMC website, or because there's a regular patient slot on the BMJ blogs, for example.  Apparently the BMJ blogs are for anybody who wants to write something; I've not tested this yet.

This article comments: "I think we are a bit elitist as to how we view ourselves in medicine at times" which to me is pretty spot on.  (The article is nothing to do with shared care - but is well worth a read).  To me, this cuts to the nub of the problems around patients being part of commissioning and directing service provision.  I think that doctors, as a group, like the power; they like being top of the hierarchy.  Having patients be part of planning services and deciding where the money is spent would challenge that, which is why I don't think it will happen the way it could or should do.  If patient involvement is truly going to be part of the NHS, then we need to find ways of breaking down those walls.  Having doctors talking to doctors in a doctor only space, especially about patient involvement, doesn't do much to dispel this impression. 

So here's the question I didn't realise was waiting to be asked - should we be applying the principles of patient involvement to the online space?  Would this help to break down walls between patients and doctors?  And if so, how do we do it?

(NB - this post has been updated)

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. 

#YesIDonate

We've recently had organ donation week here in the UK.  The aim is to raise awareness of organ donation and to get people signed up to the organ donor register.

The other donor option we have in the UK is that of blood donation, which you can do long before you become dead.  I signed up before I went to university, but due to bad admin and me being sporadically ineligible (for body piercings and sleeping with gay men), I didn't donate whilst I was a student and had my first (and only visit) nearly ten years later.  Just after this, I went to Africa - meaning I was ineligible again.

If you move house, the blood service will change your address, but won't update your nearest donation centre, meaning that when I lived in South East London, I was being sent details of sessions in Essex.  The same thing happened again when we moved from South East London to the wilds of Kent.  After that, I fell off the radar, as I didn't want to pre-book an appointment to donate, and the blood service didn't like people to just rock up as and when.  Then I got diagnosed with RA, got put on drugs that meant I couldn't donate and the rest, as they say, is the aggregate of past events.

I'm a universal donor - which means my blood type is O- and I can donate to anybody.  You know in medical dramas when they call for X units of O neg?  That's my blood type.  The American Red Cross has an explanation here.  Even though I know, logically, it's not my fault I got arthritis, I still get a twinge of guilt when friends donate, or when the blood service has a recruitment drive, as I know how useful my blood could be.

I signed my donor card in 2009, almost four years before being diagnosed.  This is the first year that it has crossed my mind to ask whether there's a link between not being able to donate blood and not being able to donate organs.  Actually, it turns out there isn't:

I cannot believe how much this has made me smile, how happy I am at the thought of being cut up after I'm dead.  Actually, I'm fibbing.  The thought of being cut up after I'm dead makes me feel a bit squeamish, but I won't need my organs after I'm gone; may as well pass them on to somebody who does). 

The other thing that made me smile (although I didn't realise it until I'd actually written it down), is that I still have the choice of donation.  It may happen that my organs are deemed to be totally past it at the moment I'm ready to donate them - and that's fine.  The point is that RA hasn't automatically negated my decision to try and help somebody else.  The decision hasn't been made on my behalf, without me having a say-so.  I now know that I (or more specifically my innards) can still be of value to society despite me being ill - and that feeling is priceless. 

Waves

I wrote something about 18 months ago, where I said that I'm not angry that I got rheumatoid arthritis.  I may have lied.  Or else, what I said was true at the time, but isn't true now.

The last couple of weeks have been unsettled and unsettling, both at work and on a personal level.  Whether it is due to that, or something else, my wrists have been flaring all over the place for the last couple of weeks.  Gloves, ibuprofen and co-codamol have only had a limited effect. 

Maybe I'm not angry at all, maybe I'm just fed up.  Fed up with being in pain, fed of not being able to do everyday stuff like opening doors or making a cup of tea.  I'm British; making a cup of tea is a social necessity!  I'm fed up with taking drugs which don't seem to be having an effect, fed up of wondering if I'm going to be in pain of some sort for the rest of my life.  I'm fed up of being snappy and irritable in the office.  

(The exception to this is my colleague who couldn't understand why it hurt me when he grabbed a piece of paper from me.  I quietly explained that I had arthritis; he continued babbling on at me, about how it couldn't have hurt, unless I got a paper cut.  My manager explained it to him, in a louder voice; he was prattling away about the imaginary paper cut and how I probably liked it.  He got told, in no uncertain terms, that he'd been told twice and if he wasn't going to pay attention, he doesn't get a third time). 

Most of all, I'm fed up of the waves of self-pity I've been flooded with over the last fortnight.  I'm fed up of stewing over the the things that were and weren't said when I was first diagnosed.  I am so, so bored of feeling sorry for myself.  Whilst it's quite true to say that I'm in pain and it's not fair - repeating this ad nauseam isn't going to serve any practical purpose.  What's happened has happened.  I thought I was past all this bull; seems I'm not.

So, in place of wallowing I've decided to start blogging again.  I have all sorts of all sorts of thoughts swimming around about RA, about the way that doctors interact with patients, about me and the way I've reacted to things.  Maybe writing them down will give them some kind of order and me some kind of life raft amongst the waves. 

Postcards from Portugal

The following was written by the actor and director Samuel West for Tatler magazine, in July 1998 and has been posted here with his and their permission. 

To Sesimbra, just outside Lisbon, for a month to work on Hornblower. Ioan Gruffudd, a brilliant young Welsh actor, is playing our hero, I’m playing Major Edrington, an aristocratic soldier, and Portugal is playing France.

Also in the cast are Antony Sher and Estelle Skornik, who plays Nicole in the Renault ads. The latest one, ‘BOB!', has just started showing here – the consensus among the crew is that the blue eyeshadow was a mistake, but they wouldn’t chuck her out of bed for making crumbs. 

I went online today and joined Ioan’s Internet fanclub; (15000 members and counting; such is the pull of five minutes screentime in the last reel of Titanic). I signed the guestbook of one of his three homepages while he sat next to me, very shocked by all this attention. 

Wednesday 17th June 1998 
On set, I am baking slowly in two layers of red moleskin and a large horse. I’ve had to learn to ride for this job on a beautiful chestnut with go-faster ears, christened ‘601’ after the brand on his neck. 

It is extremely surprising that I didn’t fall off today. 

Thursday 18th 
It is extremely unsurprising that I fell off today. Really slowly, and in full view of eighty giggling extras. 601 was more amused than most; I got back on and he sighed slightly. 

I’ve had a sweet e-mail back from the owner of Ioan’s page apologising for his English and sending greetings to Ioan and myself. He’s French-Canadian and his English is, predictably, perfect. 

Estelle Skornik is arriving tomorrow; the crew is very male, very straight and very horny, and a lot of them are keeping themselves free lest they should be favoured in the bar tonight. 

Friday 19th 
Estelle arrived and went straight to bed. She is as beautiful as the day, and she has a boyfriend called Mark. Everyone’s rather depressed. 

Saturday 20th 
The cast have an oddly successful evening out, conversing in a mixture of English, French and Welsh. Estelle is the only French actress I’ve ever met who doesn’t smoke. She also doesn’t drink, and eats only boiled fish, steamed vegetables and salad. Over herbal tea she tells me my smile has something of Christopher Lambert about it, and for a brief moment I am the happiest man on earth. 

June 22nd - England v Romania 
Ioan and Estelle have discussed their screen kiss: she says if you love the other person it’s okay to use tongues. So no tongues. 

June 23rd 
In a lonely moment I turn to Baywatch reruns on telly and discover Pamela Anderson’s charms are considerably reduced by Portuguese subtitles across her medium close-ups. 

Wednesday 24th 
Estelle twisted her ankle jumping out of a window on set today. Apparently on landing in terrible pain her first word was ‘Maman!’, and a dozen love-sick swains ran forward shouting ‘NICOLE!’ 

We’re shooting this week on a stone bridge entirely constructed by the Art Department. It doesn’t go anywhere useful - if it did, we’d be stuck on one side when we blew it up, which we do next Tuesday. So instead it cuts across one end of a long thin lake, and shot from the side, you can’t tell that it isn’t a river. And there’s just enough of a current to play pooh sticks, which is a relief. 

26th June – England v Columbia 
I found Kevin the make-up artist painting a St George’s cross on one of the extra’s faces, and powdering him with as much care as if he were doing Ioan’s eyeliner. Bless. 

Before the game the hotel gave what it called, with admirable frankness, a Beer Party; I bought the largest round of my life, 20 halves, for 2000 escudos (about 6 quid). I don’t remember much about the evening, but I think we won. 

27th June
Coals to Newcastle: when the special effects boys - they’re always boys - do explosions, they fill big mortars with lumps of cork to make harmless rock. We’re in the centre of the biggest cork-producing region in the world, and we’ve brought our own. By lorry. Via Yalta. 

Time between takes is spent under the cork trees with my tapestry. Everybody tries hard to make PC comments about a man doing needlepoint, then Tony Sher says ‘Well, I think it’s poofy’. Coming as it does from someone who dances at the other end of the ballroom, this makes him very popular. 

Tuesday June 30th - England v Argentina 
My last day, and in every way the most memorable. First, the bridge didn’t explode. This is normally a Good Thing, but in this case it meant a two hour reset and an early release for the actors, who were to be driven back to the hotel in plenty of time for tonight’s game. That, at least, was the plan. 

We got lost in the one-way system on the way back, and had to cross the longest bridge in Europe (twice, 11 km in both directions) to get back to where we started. I reached the bar eight seconds before kick-off. Packing could wait. 

And so, after a memorable 90 minutes, we went into the final period drama, singing ourselves hoarse because nobody’s got any lines tomorrow, and as Batty stepped up for the last penalty it looked like it would be the perfect ending to the perfect month.…