Your chance to get your experiences of bad application of the Mental Capacity Act to Baroness Finlay who is leading a forum tasked with improving implementation of the MCA

mike stone 22/01/16 Dignity Champions forum

This piece has arisen out of my piece at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=795&forumID=45

I have not yet been told by the DH organiser, whether people can 'just turn up' at a 'listening event' taking place on February 8th. While waiting for a reply, I asked my contact at the CQC if she knew. She isn't sure - she doesn't seem to know much about this listening event - but my CQC contact is one of the people who will be attending, and she is there as 'Facilitator for group discussion, National Mental Capacity Forum, Voice of the Person'.

She has just told me in an e-mail, that:

'I'm sure they'll want some idea about how many people are coming. There must be ways of others getting their views to Baroness Finlay and others, whether via the DIC site or by other means?

I'll be there, so if you haven't heard back from anyone at DH, I'd be happy to present a digest of views: might you be able to let me know what people are saying, or will I find them easily if I go to the Dignity in Care website?'

Baroness Finlay is scheduled to give a 15-minute talk at the 'listening event', so my CQC contact is in a good position to give feedback to the baroness.

The 'flyer' for the event, gets to the heart of the problem with this section (there seem to be some 'discussion groups' as part of the event):

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

DISCUSSION GROUPS

We want to hear your views. We cannot change bad things that may have happened in the past. And we cannot interfere in individual cases. But we can try to improve things in the future.

You do not have to use this format, but you may find it a helpful start. Please do allow everyone a chance to share their experiences.

1. Introductions
2. Each person to say what their experience of the MCA is
3. Each person to say what could have been better
4. The MCA has five main principles. Looking at these - which do you think is the most important for you? Why?
5. What should we do to make things better for people in the future?

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

I think it is more important for the views of patients, family and friends to be fed into the Forum - I feel sure that the views of the professionals, will be easier to come by.

SO I WILL BE POINTING MY CQC CONTACT AT THIS PIECE - IF YOU POST A PROBLEM WITH THE MCA, FROM YOUR EXPERIENCE, HERE, SHE WILL ALMOST CERTAINLY READ IT.

I'll now put the 'five main principles of the MCA' here - they are, as stated in the MCA itself:

1 THE PRINCIPLES

(1) The following principles apply for the purposes of this Act.
(2) A person must be assumed to have capacity unless it is established that he lacks capacity.
(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
(4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
(6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.

I have sent my comments about those 5 principles to the DH chap who is organising the meeting, although my comments were not so much about which principle is the most important - they were more about 'logical issues' arising from the stated principles.

I moved on to my answer to the 'what do you see as the most important [part of the MCA]' and it was very short - I told him:

which do you think is the most important for you?: that patient autonomy comes first.

I sent a longish PDF to him (and I'm pleased to report that it is clear he did read it) with comments in it such as:

As I wrote in:

http://www.bmj.com/content/350/bmj.h2877/rr

'the 'system' also prefers decisions which come from the GP, whereas from my position [as a former relative] I prefer decisions which come from the patient.'

CONCLUDING:

I really do think it is important for patients, family and friends to get their experiences and perspectives to Baroness Finlay's group, because otherwise the professionals end up discussing the problems which seem the more important to them: and the most important problems, can seem different depending on whether you are a patient, a GP, a nurse, a family member supporting a patient, etc.

So if any patients, or family and friends who were, or are, 'supporting a patient', have had 'bad experiences of the way professionals were interpreting and applying the MCA', PLEASE post them here !

I realise that only readers who are registered with DIC (or who register with DIC to enable them to post some feedback) will be able to directly add a piece here. I also realise that some people might want to comment, but are reluctant to post other than anonymously.

If you go to my BMJ piece at the link below, you will find at its end my e-mail address - if you want to send something to me, and you want me to post it here (keeping you anonymous if you wish that), that is okay with me:

http://www.bmj.com/content/347/bmj.f4085/rr/654490

Mike Stone

And a PS: please continue to post your views, after February 8th - I believe that is merely the first meeting, of a longer process. I suspect that because it is the first meeting, even 'the exact 'format/point' of the meeting isn't well understood'.


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mike stone 11/02/16

I will be interested to learn how the 'listening event' organised for Baroness Finlay's National Mental Capacity Forum went. A webpage describing the forum:

https://www.gov.uk/government/news/appointment-of-the-chair-of-the-national-mental-capacity-forum

included this wording:

'Its (the Forum's) purpose is to work with stakeholders from health and social care, together with those from other sectors (for example, finance, legal, police, housing) to identify complementary actions which member organisations can pursue, especially at a local level, to improve implementation of the MCA.'

I see this objective - 'improving implementation of the MCA' - as being challenging, because so far as I can see, there is no consensus about 'what the MCA means': I write extensively about that, on BMJ and here. I would like - but suspect this will not happen - the Forum to publish a description of 'what it believes the MCA says' (in other words, a clear explanation of 'exactly what is to be implemented').

There are, it turns out, some very common misunderstandings about what the MCA is clearest about - and as these things really [honestly !] are very clear but apparently not well understood, the less clear parts of the MCA must, I think, at the moment be viewed as 'very challenging indeed'.

WHAT THE MCA IS VERY CLEAR ABOUT

1) The clearest aspect of the MCA, is 'the rules when the person is mentally capable'.

Basically, the rule is 'the person makes his or her own decisions': for health care, this amounts to 'Informed consent'. Mr Justice MacDonald has recently made this very clear in his ruling:

http://www.bailii.org/cgi-bin/markup.cgi?doc=/ew/cases/EWCOP/2015/80.html&query=court+and+of+and+Protection+and+Justice+and+MacDonald+and+sparkle&method=boolean

I have commented on that ruling:

http://www.bmj.com/content/351/bmj.h6575/rr-0

In essence, the ruling tells us two things:

That nobody, including the Court, is legally empowered to make decisions about the acceptance/refusal of offered medical treatment except for the patient if the patient is mentally capable - mentally capable patients make their own decisions, full stop.

And that the law for everyone - mentally capable and mentally incapable - is described by the MCA: Mr Justice MacDonald includes the relevant sections of the MCA in his ruling (or, non-ruling - he concluded, that 'having decided the patint is mentally capable, I have no authority here') and other judges, such as Mr Justice Hayden, have also included extracts from the MCA in their rulings.

2) There is a lot, it seems, of 'muddle' about the MCA's 'instructions' if the person is mentally incapable, and the MCA is far less clear here than it is for capacitous persons. But, the MCA is 100% clear, that a suitably-empowered attorney appointed under the LPA (for healthcare, a Welfare Attorney) is empowered to make section-4 best-interests decisions (see sections 6(6) and 6(7) of the MCA. It logically follows - although for some reason, most clinicians do NOT start their own analyses of the MCA from here - that whatever 'best interests' means, a typical layman who has read the MCA must be able to work that out. In other words, for best-interests decisions about the provision or withholding of offered medical treatments, doctors and nurses are 'no more expert' than 'normal laypeople'.

I have argued this point many times:

http://www.bmj.com/content/350/bmj.h1481/rr-22

http://www.bmj.com/content/347/bmj.f4085/rr/654490

http://www.bmj.com/content/348/bmj.g2043/rr/700882

Note: that one should say 'if new laws did not effect change,'

The obvious conclusion - however upsetting this might be for anybody who wrote papers about 'medical best interests' before the MCA became a law, is that 'the MCA's section 4 has REPLACED the 'historical medical concept of best interests'.

There is another obvious conclusion, which medics like even less:

http://www.bmj.com/content/350/bmj.h2877/rr-7

3) As I've written, the meaning of section 4 of the MCA, which describes 'best interests', is not all that obvious - but, it is clear that the 'individuality of the patient' is central to best-interests decision-making (from section 4(6) of the MCA), and as I've recently pointed out, the implication is that neither clinicians nor family and friends of the patient are usually equipped to make best-interests decisions in isolation from the other group :

http://www.bmj.com/content/352/bmj.i26/rr

I believe - again, most clinicians disagree with me - that it is usually the family and friends of the patient who are the only people able to properly consider 'best interests':

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=732&forumID=45

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=741&forumID=45

Importantly, I am NOT saying that any particular person close to the patient (of that family and friends group) can IMPOSE ON OTHERS their own best-interests decision - that is where it all gets quite complicated:

http://www.bmj.com/content/352/bmj.i222/rr-0

That piece was a comment on a short paper by Danbury, about mediation and the MCA, and I also commented on something he wrote:

'Compliance with 4(9), requires that the guidance available from section 4 is applied by any decision maker: and, section 4(6) of the Act does not explain exactly 'what best interests means' but it does link the concept to 'the patient's individuality'. The people who understand the patient as an individual, are the patient's close family and friends - this is presumably why the COP 'increasingly prefers the relatives' view of best interests to those of the medical profession'. Danbury's phrasing there is interesting - 'the relatives' view(s) of best interests' - because I have always claimed that the relatives are indeed 'expressing best interests decisions' [which, however, cannot be imposed on others] while traditionally clinical authors have claimed that 'the relatives contribute information which the best-interests decision-maker then considers'.'

WHAT CAN REASONABLY BE ARGUED ABOUT MCA BEST INTERESTS

There are things, which logically follow from the MCA, if you believe my analysis above, of 'what it clearly says'.

For example, it is obvious that 'considering section 4' (i.e. 'making a best-interests decision') is complex and challenging, and requires a deep understanding of both clinical prognoses and also of the patient as an individual - the logical conclusion, is that clinicians such as 999 paramedics and A&E staff CANNOT COMPLY WITH section 4(9) of the MCA EVEN IF they 'are able to quickly read a few documents'.

This leads to my intense dislike of what clinicians call 'advance statements':

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=814&forumID=45

http://www.bmj.com/content/351/bmj.h6631/rr-0

That same analysis, reveals a lot of 'confusion' about what exactly things such as Emergency Care and Treatment Plans are (if they cannot enable a clinician who needs to read them to 'make' a legally defensible best-interests decision, then they should be explaining why such a clinician would be justified in following a decision recorded on the ECTP - those are two quite different things, and at the moment ECTP has gone for the wrong one !).

These areas where the MCA is either unclear, or where its clarity is disputed, need to be thrashed out BEFORE 'the MCA can be better implemented'.

And there is A LOT OF THRASHING to be done !

And, there are situations - such as long-term mental incapacity - where the MCA is about as clear as a thick fog on a dark night:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=795&forumID=45

mike stone 01/04/16

I have just asked someone at the DH if a 'summary note' from an MCA 'listening event' is available online (it is called a 'listening note' below), and also if some 'submissions' to a sort of 'competition' to pick the best 'MCA projects' (there was an 'awards day' for the winners in March) can be found online.

The reply was the following - so, if anybody is interested in 'seeing how understanding and implementation of the MCA is developing', this might be of use:

On the first point I don't think the listening event note is online at the moment. However, I will arrange for it to be added to the SCIE directory so it is available for wide access. I'll speak to SCIE on this and can let you know as soon as it goes live?

The submissions for the Action Day are already online on the SCIE directory,http://www.scie.org.uk/mca-directory/forum/submissions/ . They are all in PDF format and can be filtered based on the categories they were submitted under.


mike stone 02/04/16

It is probably down to me being old and hopeless, but yesterday I couldn't find those submissions.

I've just found them, and the page is:

http://www.scie.org.uk/mca-directory/forum/submissions/index.asp

The note explaining the page, is:

As part of National Mental Capacity Action Day, Baroness Ilora Finlay, Chair of the National Mental Capacity Forum, invited submissions to highlight work that has raised awareness and improved implementation of the MCA. This resource in the MCA Directory has collated and published them to help spread good practice.

Then you get 'arrows to click on' for various categories of submissions:

Acute care

Advance planning, LPAs

Chronic care

Commissioning

Community health care

Dementia

Disability

Emergency care

Financial services

For Professionals

For public & service users?

GP care

Hospital care

Housing

Learning disability

Legal

Nursing and care home

Other mental health

Palliative care

Police

Social care

Training

Voluntary sector

mike stone 25/06/16

After some discussion with a 'replacement person' at the Department of Health, I am finally pleased to report that a 'Summary Note' of the February 8th Listening Event can now be downloaded from the SCIE website. I think the direct link is:

http://www.scie.org.uk/mca-directory/forum/files/national-mental-capacity-forum-listening-event-8-feb-16.pdf

If that link doesn't work (I can't be sure until I've posted this) then if you go to the following page, the piece is titled 'NMCF Listening event' in the list of PDFs you can download:

http://www.scie.org.uk/mca-directory/forum/index.asp

Niall Fry of the DH wrote the summary note, but he pointed at Oliver Homewood in it, presumably because Niall knew he was leaving the DH - and about a month later, Oliver left the DH as well. Niall also quoted in his summary note, in italics near the start, something I wrote in my first post in this series:

'I really do think it is important for patients, family and friends to get their experiences and perspectives to Baroness Finlay's group, because otherwise the professionals end up discussing the problems which seem the more important to them: and the most important problems, can seem different depending on whether you are a patient, a GP, a nurse, a family member supporting a patient, etc.'

Niall's description of the problems 'thrown up by' the MCA - why it seems so often, to so many people, to not be working properly in the real world, is in my opinion excellent. Not perfect, but really good, and the summary note is definitely worth reading if you work with the MCA, or are a service user 'encountering' the MCA.