If I am allowed to, I would like to make a personal comment about Dr Bee Wee.
Since 2009, I have sent numerous 'annoyed layman of Coventry' e-mails, to many people connected to end-of-life behaviour. Until the spring of 2013, these e-mails would often go to Tessa Ing, who was the head of an end-of-life team at the Department of Health. Tessa's role was full-time, and she had a support team.
EoL moved out of the DH to NHS England in the spring of 2013, and the closest 'similar role' to Tessa's former DH role, is now Dr Wee's NHS England role: but Dr Wee's role is part-time, and she does not have as much 'support' as Tessa had. But Dr Wee is the person who has replaced Tessa, in terms of receiving my e-mails concerning EoL guidance, or EoL 'behaviour', which I dislike and find fault with.
I would like to comment, that in spite of her heavy workload, Bee does seem to find the time to respond to at least some of the points I raise in my e-mails: not as rapidly, or frequently, as the responses from Tessa were, but all things considered, it is impressive and encouraging that Bee responds as much as she does. Bee also 'writes like a human' (see footnote): it is very discouraging, to a layman attempting to discuss an issue 'with the NHS', if the person you are trying to discuss the issue with, 'responds 'like a robot' by simply pointing at this, that and the other policy document, or is totally 'evasive''.
In my experience, some of the other 'senior people in EoL' respond to questions in the same helpful way that Bee does, but others 'will not engage in meaningful discussion'.
End-of-life is full of issues, which are so 'role and perspective dependent' that unless everyone talks to each other, the problems will never be properly thrashed out and resolved. There are lots of issues for which 'the intuitive solution' is very perspective-dependent: issues around 'trust', interpretation of law, 'safeguarding versus patient autonomy', 'process or 'common sense'', etc. The 'best solutions' to these problems, often look different to a GP and a 999 paramedic: to a relative and a nurse; to a consultant doctor and a police sergeant; etc.
The 'traditional' NHS approach to 'including laymen', appears to be to canvass lay opinion, and then for the professionals to go away and think about the solution. That might work for 'When my husband was dying, we couldn't get proper pain-relief at the weekends' - but it will not work, for 'When my husband was dying, he collapsed and I called 999, the 999 paramedics seemed to not believe my word !'.
If end-of-life behaviour is to be improved, it requires the attitude of Dr Wee - a willingness to honestly and openly engage directly with the laymen - to be adopted by all of the senior clinicians who are involved: without that attitude, the end result is a very obvious 'bias towards the perspective of the professionals' within guidance, protocols, and 'thinking'.
Footnote: Dr Wee has never, directly or 'by implication', given the impression that because she is a senior NHS consultant, and I am a layman, she thinks that 'he cannot possibly understand these issues'. Although I must admit that is a reasonable 'initial assumption' for an 'expert' to make, and I accept that perhaps Bee did not make it, because of the particular circumstances of our initial contact. She frequently tells me 'I agree with you - but I cannot sort that out', an answer which is both encouragingly honest and at the same time discouragingly frustrating (it is common for an 'obvious EoL problem' to be easy to 'see and describe', relatively simple to propose a solution to, and yet for 'there to be nobody [within a very task-orientated NHS structure] who can actually 'get an obvious solution tried out and assessed for its effectiveness''.
But what Bee does not seem to be - and this is apparently something common to almost all healthcare professionals - is 'blunt enough'. In my experience, clinicians are very reluctant to write 'you must be wrong about that point - because ...'. I can 'see where this comes from' (too much 'bluntness' in clinician-patient interactions, would be problematic), but it really slows down an analytical debate, and I honestly wish that more clinicians would reply to me with 'you can't be right, because it is obvious that ...'.
However, I am quite 'nerdy analytical' - so that is my view, but my view might be a minority position.
Rapid Response:
A personal comment about Dr Bee Wee
If I am allowed to, I would like to make a personal comment about Dr Bee Wee.
Since 2009, I have sent numerous 'annoyed layman of Coventry' e-mails, to many people connected to end-of-life behaviour. Until the spring of 2013, these e-mails would often go to Tessa Ing, who was the head of an end-of-life team at the Department of Health. Tessa's role was full-time, and she had a support team.
EoL moved out of the DH to NHS England in the spring of 2013, and the closest 'similar role' to Tessa's former DH role, is now Dr Wee's NHS England role: but Dr Wee's role is part-time, and she does not have as much 'support' as Tessa had. But Dr Wee is the person who has replaced Tessa, in terms of receiving my e-mails concerning EoL guidance, or EoL 'behaviour', which I dislike and find fault with.
I would like to comment, that in spite of her heavy workload, Bee does seem to find the time to respond to at least some of the points I raise in my e-mails: not as rapidly, or frequently, as the responses from Tessa were, but all things considered, it is impressive and encouraging that Bee responds as much as she does. Bee also 'writes like a human' (see footnote): it is very discouraging, to a layman attempting to discuss an issue 'with the NHS', if the person you are trying to discuss the issue with, 'responds 'like a robot' by simply pointing at this, that and the other policy document, or is totally 'evasive''.
In my experience, some of the other 'senior people in EoL' respond to questions in the same helpful way that Bee does, but others 'will not engage in meaningful discussion'.
End-of-life is full of issues, which are so 'role and perspective dependent' that unless everyone talks to each other, the problems will never be properly thrashed out and resolved. There are lots of issues for which 'the intuitive solution' is very perspective-dependent: issues around 'trust', interpretation of law, 'safeguarding versus patient autonomy', 'process or 'common sense'', etc. The 'best solutions' to these problems, often look different to a GP and a 999 paramedic: to a relative and a nurse; to a consultant doctor and a police sergeant; etc.
The 'traditional' NHS approach to 'including laymen', appears to be to canvass lay opinion, and then for the professionals to go away and think about the solution. That might work for 'When my husband was dying, we couldn't get proper pain-relief at the weekends' - but it will not work, for 'When my husband was dying, he collapsed and I called 999, the 999 paramedics seemed to not believe my word !'.
If end-of-life behaviour is to be improved, it requires the attitude of Dr Wee - a willingness to honestly and openly engage directly with the laymen - to be adopted by all of the senior clinicians who are involved: without that attitude, the end result is a very obvious 'bias towards the perspective of the professionals' within guidance, protocols, and 'thinking'.
Footnote: Dr Wee has never, directly or 'by implication', given the impression that because she is a senior NHS consultant, and I am a layman, she thinks that 'he cannot possibly understand these issues'. Although I must admit that is a reasonable 'initial assumption' for an 'expert' to make, and I accept that perhaps Bee did not make it, because of the particular circumstances of our initial contact. She frequently tells me 'I agree with you - but I cannot sort that out', an answer which is both encouragingly honest and at the same time discouragingly frustrating (it is common for an 'obvious EoL problem' to be easy to 'see and describe', relatively simple to propose a solution to, and yet for 'there to be nobody [within a very task-orientated NHS structure] who can actually 'get an obvious solution tried out and assessed for its effectiveness''.
But what Bee does not seem to be - and this is apparently something common to almost all healthcare professionals - is 'blunt enough'. In my experience, clinicians are very reluctant to write 'you must be wrong about that point - because ...'. I can 'see where this comes from' (too much 'bluntness' in clinician-patient interactions, would be problematic), but it really slows down an analytical debate, and I honestly wish that more clinicians would reply to me with 'you can't be right, because it is obvious that ...'.
However, I am quite 'nerdy analytical' - so that is my view, but my view might be a minority position.
Competing interests: No competing interests