Royal College of Physicians

Hi Jan,

I've briefly scanned one of these. My comments.

I'm working from the Summary and Recommendations document at the moment, and my personal interest is in end-of-life care for patients who are at home. Because I've used colour to separate extracts, I've also tried to e-mail this to the website.

I have a sort of 'general conceptual issue' with things like this when I come across them:

'5 effective relationships between medical and other health and social care teams' (page 1) and also on the same page:

'Care, treatment and support services need to be delivered in a range of ways, across a range of settings and by a range of professionals, all working in collaboration.'

My objection, is that this introduces a primary distinction between professionals and the 'relatives' who are also supporting the patient - I consider that distinction as being fundamentally unhelpful while patients are at home, and you need a different concept based on 'who is in the group of people in ongoing contact with the patient'. I call it the Core Care Team concept.

So my issues are connected with a strong theme of the day, as mentioned on page 2:

'Our hospitals are struggling to cope with the challenge of an ageing population and increasing hospital admissions.'

And on page 3:

'The need for change is clear. The time has come to take action. Those working in the NHS have a responsibility to lead this change, supported by the organisations that represent them and empowered by national policy-makers.'

I am not really involved in this 'debate', but I am firmly of this opinion, from the debate I am involved in:

'Unless 'the system' - which means individuals clinicians within it - is willing to discuss these issues, end-of-life behaviour will continue to look 'distorted and offensive' to many of the dying and their loved ones.
Indeed, it will continue to be distorted away from 'a neutral balance' - because while only professionals create their own guidance, they will continue to overly-weight their own perspectives.'

In the context of that and applied to the 'reorganisation' debate, I was listening to someone on the BBC recently, and he said exactly what I think is true - and I think this is often less-weighted than the 'best clinical outcomes' measurements which policy makers look at. Basically he said, using my own words perhaps but this was 'the point':

"While nobody wants their local hospital to provide bad care, personally if given the choice between very good care at a hospital very local to me, or world-leading care at a hospital many miles away, I would go for very good care in a local hospital".

While that is clearly a personal choice, I think especially for the elderly, patients should be able to choose between 'very good care near to my home, where my friends and relatives can reasonably easily visit me' and 'close-to-perfect care but miles away from where I live'.

This is a diversion, but I've just come across the Circle of Patient Centred Care diagram on page 5: I attached something I've just finished writing called More Conversation Less Confusion to the e-mail I've sent to you, and I've got a Patient Centred Diagram on its page 5.

Page 8 includes:

'Patients can be empowered to prevent and recover from ill health through effective communication, shared decision-making and self-management. Clinicians and patients will work together to select tests, treatments or management plans based on clinical evidence and the patient's informed preferences.'

I get very miffed by this - especially by the phrase 'shared decision making': see pages 9 onwards in More Conversation Less Confusion !

There is clearly a problem with this from page 10

'Patient experience must be valued as much as clinical effectiveness. Patient experience must be measured, fed back to ward and board level and the findings acted on.'

This doesn't happen - I've spent years trying to discuss various end-of-life issues which centre on clinical training and beliefs, and whether protocols fit the law, etc, and in my personal but measured-over-several-years experience of this, you just cannot get local clinicians to interactively discuss complex issues. The discussion is necessary, because of perspective issues - but it is hugely difficult getting operational clinicians to discuss issues.

So principles 7 and 8 on page 11 need an awful lot of work !

The first one on page 12:

'1Medicine is a vocation in which a doctor's knowledge, clinical skills, and judgement are put in the service of protecting and restoring human well-being.'

introduces a problem: the word 'protecting'. Medics have got this concept of 'soft paternalism', which appears to mean 'pushing patients until they make the right choices' if you take its 'weakest' version: but English law has an entirely different concept, of adequately-informed patients making their own decisions, even if the decisions they make are 'bad for them'. This is a significant issue, because most medics seem rather poor at reading the law - however, you cannot logically have 2 people 'making the same decision' (go back to 'shared decision making' and my objection to the term). That is tricky - but most clinicians seem to believe 'we must act in the best interests of our patients', and that doesn't seem to be the legal situation any longer in England. It seems to now be that clinicians must competently provide any accepted treatment, but mentally-capable patients decide whether to accept an offered treatment (and it gets very complicated for mentally-incapable patients). And there is no apparent legal justification to challenges a patient's 'stupid' decision (this is because the law accepts that a patient's wider-life situation and personal 'take on life' makes patients all individuals).

I like the report, subject to my reservations outlined above, and I've rambled on enough.

I would add, that co-ordinating NHS and Social Care will always be tricky when NHS care is 'free' but Social Care isn't: I'm sure people already know that.

Thanks for your reply Mike - I will make sure your very interesting comments are passed on to my colleague on the National Dignity Council who represents the RCP.

Hi Jan,

Assuming you received and looked at my PDF, you will know that my issues are more about 'how clinicians are thinking' than about 'how the system is organised'.

Steve Field and Bee Wee have both very recently received that PDF, but I'm not very happy that both of the dedicated EoL Teams (Tessa Ing's at the DH, and the one based in Leicester) were swept away in the spring reforms.

I hope you get some more replies.

Jan,

If you are still checking back on this one, I'm interested in something.

I suspected your request for feedback on that RCP report was 'optimistic': it is a long and complex report, and my own attempts to get feedback on 'complex issues' are usually only successful 'in a very limited way'.

I must admit that I find it quite frustrating that 'setting up a discussion about conmplex healthcare-related issues' seems to be hugely difficult - I was just wondering if you share the same 'frustration' ?

Regards, Mike