How can Patients and Relatives change the behaviour of the NHS?

mike stone 11/06/21 Dignity Champions forum

After being a 'lay-campaigner (in my case, around End-of-Life behaviour, especially when the dying person is at home) for about a decade, I have put some of my thoughts about how patients and relatives might attempt to 'change NHS behaviour' in the attached PDF.

If other people with experience if trying to do something similar would care to add their own thoughts to this thread, please feel free to do that. But please note - I am writing about 'behaviour, culture and mindsets of 'the system' being changed: I am not writing about mistakes and bad-behaviour, made by individual clinicians. My piece is not about 'that particular doctor behaved badly' - I am writing about what amounts to 'doctors as a group, behaving in ways that seem unreasonable or unacceptable when viewed from the patient or relative perspective'.

Associated files and links:

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mike stone 17/07/21

Since I wrote the earlier part of this thread, I have been swapping e-mails with a couple of clinicians. The discussions covered a lot of ground, including the [very tricky indeed!] issue of how can generalist clinicians be steered towards providing the type of care which a specialist clinician would provide (if that sentence isn't very clear, then an example would be 'how can we try and ensure that a person who is dying in a General Hospital, receives 'expert care' similar to the care a person dying in a Hospice would receive?').

Three objectives have been clear during our discussions:

1 How can Healthcare Systems be designed, so that all patients can benefit from the expertise of the clinicians within the system?;

2 How can systems be designed which make it easy for clinicians 'to do the right thing'?;

3 How can we can prevent 'Diktat from Above' being imposed onto clinicians, when those diktats actively get in the way of number 2: how do we avoid, for example, situations when a nurse is thinking 'I've been doing this job for 20 years - and I'm absolutely certain, what I'm being told to do is NOT the best way to do this!'.

Now, I think everyone would 'sign up to' no 1 - nobody would argue, that if a patient seemed to have a complex heart problem, a cardiologist should not be called-in: so it simply amounts to 'how do we best join things together?'. I am not saying that is easy - but it should surely be a challenge we could address: in large part, it comes down to resourcing (for my example, it comes down to having enough cardiologists for one to be available).

Number 2 is, I think, trickier. In this modern age, we no longer simply accept 'doctor knows best'. If something seems to have gone wrong, everyone from a patient's family to the Care Quality Commission, wants to 'audit' the doctors expertise, behaviour and in effect 'the doctor's idea of 'best''. The necessity to have in place records, etc, which make that 'auditing' possible, can rather get in the way of actual care being provided. I am avoiding references in this piece, but I will break that rule and point to this piece:

Number 3, is probably the most difficult of all. And I am not going to suggest how that problem can be resolved. Instead, I am going to postulate 'how it arises' within a healthcare system. I suspect, that at every level from a Trust Board downwards, almost everyone who 'has authority (or responsibility) over other people', TO SOME EXTENT has this thought:

'If I accept and support a new and different way-of-working, and then something goes horribly wrong - will I be blamed?'.

So at every level - 'restrictions on behaviour/tick-box rules' and/or things seen from below as 'over-the-top record-keeping', tend to be imposed on those below, by those above. In the end, this can lead to such a high-degree of 'oversight' that 'it makes it very difficult for us to actually get on and do our job!' [to the frustration of everyone who is thinking 'I know how to do this - if only people would let me get on and do it!].

Just my quickly cobbled-together thoughts. Probably wrong!

mike stone 13/08/21

The images are from

These images - although my fingers were affected more badly than my toes - look exactly like the skin lesions I had.

I think it is the 'I've never had a 'rash' like this before', along with finding the 'rash' in the database, which is the important thing if you are to conclude 'so my skin lesions mean I've got/had Covid'. And the sheer number of different skin effects, makes this very complicated.

Associated files and links:

mike stone 13/08/21

Drat and apologies - I've managed to post this in the wrong thread!