Mike's Cheeky Blog: The tale of a 'blog' on the SCIE website

This is just as good a place as any, to put this piece - it explains why I'm involved in this EoL debate, and why the views I expressed above are my position.

A recent e-mail to me from a hospital doctor, ended with this:

'The first responders can do no more than assess, stabilise and either convey to hospital or refer to an appropriate community team. There will be cases where people point blank refuse conveyance or treatment and that should be respected. But i dont blame the crews for doing their job. They have stringent response times, they dont know the person like their own regular GP or community nurse or consultant, they often have little information and they have to act quickly and decisively. That's real life'

We had been discussing the behaviour of 999 Paramedics when they become involved during end-of-life situations, and I wish to be unequivocal about something: I do NOT 'blame 999 paramedics' at the individual level - but I UNEQUIVOCABLY DO find their current behaviour unacceptable. What I blame is their TRAINING/PROTOCOLS.

At the end of this piece, I will include 3 e-mails exchanged between one of my professional contacts and me. I will also point at the piece here, which explains some of my experience:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=759&forumID=45

My mum had been in a 'peaceful' terminal coma for about 4 days, before she died. I had asked the GP what the GP would like me to do, when (although you say 'if' - despite both of you knowing it is 'when') my mum died, and the response was 'Call me at the surgery, or tell the cover GP it was an expected death - there will be no police'. I also knew that my mum wanted to die - the GP [only] knew that my mum had strongly resisted being taken to hospital and resisted treatment.

My mum died at 8-15 am - I wasn't sure if the GP arrived at the Surgery before 9, so I called at about 8-55. The GP had taken the day off, and I was TOLD to call 999.

Now, everyone involved that day, was confused by the behaviour of other people - absolutely no question, about that. BUT:

1) Almost the first thing the paramedic said to me, was 'your mother's death was sudden, because I was called' - despite my pointing out that the GP had told me to describe the death as expected to any cover GP

2) About 10 minutes later - by which time the police were there as well, so things were fragmented in terms of conversations - two district nurses, including the lead DN, turned up. The paramedic asked the lead DN 'Was it an expected death ?' and I think the nurse replied 'Yes but not necessarily today': she - according to the PCT report I received subsequently - 'thinks' she said 'Yes it was an expected death' but 'if she said something different, she is sorry'. When I asked the PCT 'What does the paramedic say the nurse answered' the PCT had not asked him.

3) I wasn't talking to West Midlands Ambulance Service until about 9 months after the event - the PCT was supposed to be doing that. Then, I started asking WMAS directly. The first response I got, was 'We can ask the paramedic, if you make a formal complaint'.

TWICE WMAS ASKED ME 'TO MAKE A FORMAL COMPLAINT AGAINST THE PARAMEDIC' - and twice I REFUSED. I refused because, as I told WMAS, 'I am convinced the problem is with the TRAINING and GUIDANCE'.

We never did find out what the paramedic thinks the nurse answered - by the time WMAS and I were talking properly, he had left WMAS 'and could no longer be asked'.

However, the paramedic and the police, clearly expected to find things in the medical notes, which my mother's GP did not place in them (things such as DNACPR forms). 999 seemed to be baffled, by why my mum's death didn't call for some sort of immediate action on my part - how can an expected death at the end of a terminal coma, call for 'some immediate action' ?

MORE IMPORTANTLY: 999 were apparently blaming me for things not in the notes, which it was NOT my role to either insert in the notes, or to check - if you are a family carer, and a GP verbally tells you something, then that is 'what you look to'.

It was also VERY CLEAR THAT NEITHER THE POLICE NOR THIS PARTICULAR PARAMEDIC PROPERLY UNDERSTOOD HOW 'MESSY and CONFUSING' END-of-LIFE AT HOME CAN BE.

'Better records' are a good idea, but NOT THE ANSWER to this: we also need a totally different approach (the approach I describe as 'The Core Care Team').

The Core Care Team approach/concept/idea is described as 'Poser no 8' in my series at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=692&forumID=45

These are the 3 e-mails, I said I would include at the end of this piece - I recently posted this on Nursing Times, in an attempt to try and make it clear, why I post about end-of-life on that website:

I happen to have to hand - I was considering posting it either on Dignity in Care or on Facebook - a detailed explanation of why I became 'engaged in debate'. Even though it might be off-topic, it does explain 'who I am and why I do it' quite well - that might be useful for NT readers, and I can't see any really on-topic place as likely to crop up in NT, so here goes:

Some time ago, I was sent a 'personal' e-mail from one of my 'professional contacts', whose job involves trying to get the Mental Capacity Act better implemented. I was sent this:

Dear Mike,

I just wanted to write to you as 'me' rather than in a way that might be seen as representing the XXXXX.

I'm very glad that the thrust of your thinking is around improving practice for the future: we can deplore poor practice in the past, and, though unable to change what happened, it's good to use this knowledge to improve the experience of people in the future.

I would suspect, and this is only my personal opinion, that many of your correspondents see the sense and value in your suggestions, as do I, but may be inhibited by their public persona and hence sometimes reply stiffly or without passion. I am sure that others, like me, do read your emails, and I assure you that in my case, as I'm sure for others, they do inform my thinking.

With very best wishes for your continued energy and the logical approach you bring to identifying areas for improvement, I remain,

yours sincerely,

I had promised to send an e-mail to this person, 'explaining how I came to be involved in this end-of-life debate' - or, as I had put it, 'why I'm such a persistent pain-in-the-backside layman' - and I sent that explanation while the person was on leave:

First I'll cover 'persistent'.

I don't have much else in my life to distract me: I also have very little motivation for life in general, which could partly be related to when I was definitely depressed for a couple of the years following my mother's death [no motivation, or enjoyment of anything, during those two years]. Now I'm essentially a grumpy old so-and-so, but I'm not sure whether there is any remaining connection to my previous depression - it could well 'be my natural condition'. But I do have some motivation to 'try and sort out and improve' these EoL issues.

Many - you probably know better than me, but I suspect most - people who start to get involved in 'campaigning to improve NHS behaviour' become worn out and disillusioned relatively quickly, and give up. That is less likely to happen 'if there isn't much else in your life to distract you'.

Moving on to 'pain in the backside' and, more interestingly, 'why did I adopt my method'.

I couldn't fathom, why the behaviour of the 999 Services I became involved with, 'was both bad, and also mad'. Initially the thought is 'how come I got all the dim professionals' but the chances of that happening don't seem high - so very quickly (within hours) you think 'this must have something to do with how they are trained - so the training must be wrong somehow'.

The training, and 'attitude', is wrong - it takes a fair while (years) to start from scratch outside the NHS, and to 'dig out' that training and 'belief set', and it takes some effort to do that. And once you've put the effort in - especially if you are basically pretty lazy, like me - you tend to carry on 'with the campaign'.

My brain is suited to finding contradictions within stuff - not to memorising the details - so by sheer chance, I can do things other people typically don't do. For example, during a dispute with the PCT, I tracked down the 2009 NHS Complaint Regulations. It took me 2 hours to find them, but only one hour of reading them, to arrive at 'these regulations do not, it seems, allow a person to complain about faulty guidance [they are constructed with an internal assumption, that you are complaining about a specific incident]'.

But my problem, is indeed with 'the guidance'. That starts 'at the top'. So I read it, and if the author has written something 'which I find legally flawed or objectionable' I e-mail the author, provided I can find an e-mail address (interestingly, 'the RCN is less keen on giving a feedback e-mail address, than the BMA or GMC are').

Why do I 'have the cheek' to send these e-mails ?

Well, I'm not sure: I think it is a combination of 'what happened to me really angers me', 'what happened to me should not happen to other people', I'm male, I'm quite old, I've got a doctorate in chemistry so I'm not 'intimidated' by 'titles', and I'm not sufficiently well-mannered as to 'not point out obvious stupidity'.

But, these days I am not 100% sure about my 'purity of motivation'. Originally, when part of my mind was 'still seething with rage', and when I had yet to become familiar with the sort of rubbish I've since found all over the place and written 'supposedly by healthcare experts', my motivation was definitely 'pure'. These days - well, I'm less sure. These days, there is an element of 'this guy should know better than to publish such nonsense' - so 'demolishing rubbish' has got a sort of 'academic appeal' to me: which isn't as 'nice' a motive, as the simple 'things need to be better, for the sake of the patients/families' motive.

Although, the end result is the same - if I can get rid of nonsense, and as a result get improved and more perspective-balanced behaviour for end-of-life, then exactly what was motivating me (even the dubious 'academic one-upmanship' of 'this is nonsense and needs demolishing') doesn't matter.

I asked [REDACTED] if many other people 'use my method' a couple of years ago, see below,

Best wishes, Mike

Me to [REDACTED]:

[REDACTED],

Re your '... many of whom you are in contact with' comment.

Most senior NHS medics are like you - very busy: there is 'contact' and then there is 'discussion' (and I much prefer the very much harder to get, discussion).

I assume you remember the lady who phoned your unit, after she had e-mailed me: I had a long phone call from her, and many e-mails, but beyond it being very clear that 'she was very distraught', I couldn't work out what she believed (it wasn't clear to me - and I'm not sure it was clear to her, either - if she felt that the NHS had deliberately killed her father, or that 'uncaring doctors and nurses had not cared for him well enough'), and I couldn't work out 'what she thought would put things right'.

You've probably noticed that I'm a bit different: I'm very clear about what I want, which effectively is 'a change in mindset of the NHS' and therefore 'more 'perspective-balanced' behaviour/guidance/protocols' for EoL. And I send very detailed (and as short as I can keep them - which is nevertheless probably too long for most people) 'analytical pieces' to all manner of expert clinicians 'as moans'. From my end, I suspect these e-mails to medics (it seems to be different, with most nurses - many nurses seem to find my stuff 'far too 'dry'' for one thing) often create a combination of surprise (at my cheek for having the gall to argue with the experts) and shock (if people realise that I just might know what I'm on about).

This is my question. I've come across a few other 'annoyed relatives' who are 'deeply intricate and analytical' in dissecting what they see as MISTAKES BY INDIVIDUAL MEDICS - but, how many other laymen have you come across, who are like me in 'analytically dissecting the guidance/protocol' [as opposed to dissecting 'incidents'] ?

I've always wondered about this - I can't believe that if there were a substantial number of laymen 'moaning in the way that I moan', that the sheer 'nuisance factor' wouldn't prompt some change.

So, I've always wondered if I'm a very atypical 'complainant' ?

Best wishes, Mike

[REDACTED]'s reply to me:

Hi Mike

The answer to your question is - not many, at least by email. There are a number who join the various groups and committees and bring quite formidable analytical skills from a non-clinical perspective to the table - incredibly useful for generating discussion. You do the same, by email - I guess the difficulty you might encounter is that many professionals receive such huge volumes of email - most of which are task-orientated - that there is seldom time to sit back and engage in thoughtful discussion by email. This is particularly true of clinicians - we spend most of our time 'on the road' as it were - doing clinical work, participating in meetings, etc. - which means that our desk time is limited, and has to be devoted to phone calls, writing papers/reports, commenting on papers we're sent and dealing with emails. In no way does this devalue anything you say - it's just having the time to read, reflect and respond thoughtfully is not easy.

Best wishes

I then received this - too flattering in places, in my opinion - e-mail after the leave had finished:

Hi Mike:

I'm just back from a week's leave, so will keep this brief since I'm only a short way down the emails - among which yours was a welcome reminder of why I do the things I do.

You're completely right about the incorrect guidance and about the professionals who should know better: indeed I'd be inclined to query your division of your motivations into 'pure' and less so. To me, it's not that hard at least to get the guidance correct or to do your best to practise within the human rights framework of the MCA, and it's not acceptable for the level of ignorance and poor practice to have continued for so long.

So I hope I'm not being presumptuous when I say I recognise and share your motivations to see better practice. I'm furious when I encounter the lazy failure to improve working practices among those who have such power over people's lives. And I am glad we've got you hammering away at the inconsistencies and incompetence.

best wishes