Giving power to the patient

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Part of Time to Think Differently

The coalition government came to power with the promise to shift the NHS from an organisation dominated by accountability to Whitehall to one where accountability to patients mattered more. But in Jeremy Hunt's response to the scandals of Mid Staffordshire, it is accountability to the centre that has been given the strongest boost. Hospitals are to be subject to more rigorous inspection and more comprehensive monitoring, a Chief Inspector of Hospitals will identify failing organisations publicly, management will be held responsible, and, when they fail, the consequence may be the end of their career in the NHS.

This shift is pragmatic. Upward accountability – from the front line to managers and from managers to commissioners, regulators and politicians – has always been more powerful than outward accountability to patients and the public. Upward accountability may sometimes distort and corrupt, but there is no doubting its impact. In comparison, outward accountability to patients is feeble.

Despite the theoretical appeal of empowering patients and making providers of health care more accountable to them directly, the practical hurdles have often seemed insurmountable. The biggest of these by far is the attitude of patients. Opposition to patient empowerment often focuses on the pushy patient who tiresomely challenges the doctor’s years of education on the basis of an afternoon on Google. But the bigger issue is the much larger group of patients who simply don’t want to hold their doctors to account or get involved in decisions about their care.

The reason for this is simple. It cuts across our most fundamental desires to put our trust in those who care for us.

The desire to trust doctors, nurses and, by extension, the NHS is so strong that it takes some battering before it collapses. It is there in many of the most tragic stories of failures in care – in the case of Julie Bailey at Mid Staffordshire, James Titcombe in Morecambe Bay or Kane Gorny at St George's.

In each case the patient or carer started from a position of trust in the system. They said what they felt was needed and when reassured, were inclined to maintain their faith in the system over their own disquiet. As James Titcombe puts it when he was told his son Joshua did not need antibiotics: 'I was surprised... but trusted what I was told'. When such faith is found to be misplaced, the result is a combination of fury and an unbearable regret over what might have been.

Far too little is made of the fact that, so often, the patient (or family member) knew things were not right. They correctly identified the problems with their care or that of their loved ones. But they were ignored.

A duty of candour to such patients is, of course, an important step forward. But it is too far after the event to count as a solution.

Looking to the future, we must also give the patient greater authority in the management of their care. We should formally recognise the particular injury of having mismanaged someone's medical treatment in the face of clear warnings and statements from them or their carer. 

But most importantly, we must encourage patients to be vocal and  to contribute in ways that are compatible with their desire to maintain faith in the system. The key to this is encouraging doctors to take an active part. Right now, far too many health professionals regard empowering patients as a waste of time at best and unethical and dangerous to the patient's health at worst.

As for it being a waste of time, done correctly, the reverse should be the result. Giving patients greater access to information about their care and enabling them to carry out tasks, such as managing prescriptions or booking appointments, would be both informing and empowering as well as reducing the burden on the NHS. 

The ethical argument needs greater development and rests on what is in the best medical interests of the patient. Many doctors feel uncomfortable at the idea that giving patients power must imply allowing them to make the wrong decision. More than that, there is the feeling that it is unethical to put a burden of responsibility on patients who are uncomfortable with it. 

Against this, should be weighed the evidence that the quality of health care provided and the outcomes for patients are better if they do take on greater responsibility. Doctors recognise that it is appropriate to tell patients to cut down on smoking or eating, however much the patient might dislike the advice. In the same way, we are now at a point where doctors should consider encouraging patients to take on greater responsibility for their health care – however much the patient might prefer to leave it to the doctor – because it is in the best interests of their own health.

One incentive that might persuade doctors that this is worth pursuing is the potential it offers to reduce the reliance on upward accountability to managers and politicians and replace it with outward accountability to patients.

Comments

andrew field

Position
GP, North Yorkshire LMC member,
Comment date
04 April 2013
The processes of empowering patients and increasing shared decision making are VERY time consuming and therefore costly. This is the main barrier - there's next to no funding for this kind of work and so there is scant motivation to bring about what must be recognized as a major culture shift in a service that feels discouraged, oppressed and beleaguered in terms of finance and moral. In terms of real change I say dream on unless government is prepared to invest and this does not seem likely.

Peter Singleton

Position
Informatics Consultant,
Organisation
Cambridge Health Informatics
Comment date
04 April 2013
There are several elements here:
1) recognising that the patient's decision is based on wider factors than purely 'clinical' aspects - this may require some adjustment in the clinician's perspective: mild incontinence is not a severe side-effect from surgery in clinical terms, but for the patient it may be mortifying (almost literally)
2) empowering patients means nothing if they cannot make different choices
3) forcing choice on patients does not necessarily 'empower' them; e.g. signing a 'consent form' does not change the options, it merely covers the surgical team against battery
4) providing 'patient choice' in terms of provider is really a mechanism to ensure some systemic feedback against poor performance - because the NHS is not good at doing that for itself - by the time patients know the difference it is usually too late
5) providing the wrong choices to patients usually means they find other approaches (non-compliance, homeopathy, etc.) - this wastes more time & resources than proper consultation should
6) patient empowerment is not the solution to poor care as the article seems to suggest; if nobody is listening or trying to improve (despite budget cuts) then no amount of 'empowerment' is going to help
7) perhaps empowering staff would be more effective in improving care and patient health & satisfaction

Jane Price

Comment date
04 April 2013
One of the joys (and frustations) of working in and with the NHS for over 30 years is its ability to provide excellent care but allow dismally poor practice to co-exist side by side. The NHS can demonstrate examples of genuine shared decision making and patient empowerment as many can testify from personal and family experience as well as our professional lives.

So doesn't it make you mad when "patient choice" is handled in the same way we treat our toddlers? I know best and I say you're going to wear a hat. Green or blue? And you're going to eat lunch, and you're going to eat it now. Beans or pasta shapes?

How can we improve? Why is it so hard?

Jessie Cunnett

Position
Director,
Organisation
Patient and Public Involvement Solutions
Comment date
04 April 2013
I have always liked the following quote: “Empowerment may be defined as a process of helping people gain, regain or maintain personal power or control over their lives, a sense that they can influence the people and organisations which affect them” Myers 1995
In the context of health and social care it is also useful to consider the perspective of 'potential patients'. Moving beyond the individual relationship between a care provider and the patient to a relationship between a health and social care system and the public at large. I think it is helpful to understand empowerment at the individual level in this context.

Amir Hannan

Position
General Practitioner, Tameside & Glossop CCG Board Member,
Organisation
Haughton Thornley Medical Centres, www.htmc.co.uk
Comment date
04 April 2013
Power to the patient sounds good but what does this really mean? Do patients really want that? And are the attitudes of patients really that difficult too or that patients do not want to challenge their doctor or remain passive and what about all those antibiotics that doctors and other are prescribing when they should not be used - a much wider problem than not being prescribed at all. Managing repeat prescriptions and booking appointments are not solutions in themselves that will reverse the decline either. However building partnerships with patients where each party feels more equal and sharing information between patient and clinician in a responsible manner so that patients can gain a better understanding of their own health and what is available for them and what should happen will go in some way to redressing the balance. It's not that we are not giving out antibiotics - but rather who and when we are giving them and ensuring there is a reduction in variation of care and what care there is, is of a higher value delivered with compassion. GIving patients their local care pathway is one very important step which helps support shared decision making, helps to unlock the secrets that may exist within the patient record that the patient can help to understand better and maybe even be empowered to point out discrepancies in the care they are receiving at the point of care so that corrective action can be taken immediately and hence improve the quality of care as well as improving patient safety and empowering patients, their clinicians and the health care organisation they are in by working together within a Partnership of Trust.

The Map of Medicine helps deliver knowledge to the frontline and beyond and in so doing give power to all. See this webpage that explains this dilemma and also watch patients talk about how it helps them alongside access to their GP electronic records by giving them understanding too.

http://www.htmc.co.uk/pages/pv.asp?p=htmc0416

Paul Thackray

Position
Foundation Trust Governor,
Organisation
Dorset NHS Foundation Trust
Comment date
04 April 2013
People, particularly sick and elderly people are generally not good at recognising and articulating their real issues and concerns.
Clinicians and more particularly managers are not good at listening.
The result is that vital messages are not properly received and when they are they are often not understood.
Proper training for all in communicating " message received and understood " is vital if we are to make any progress.

Bernd Sass

Position
Strategic Partnership Manager,
Organisation
Disability Rights UK
Comment date
05 April 2013
We need to strengthen appropriate mechanisms for this shift towards patients, eg personal health budgets and a right to peer support (at diagnosis\crisis to hear from someone who has travelled a similar path).

The waste argument could certainly be held against a capacity-driven system which seeks to suppress a demand-led model.

Billie Riley

Comment date
05 April 2013
Sadly the only way for many patients to become "empowered" is to take matters into their own hands and order their own monitoring blood tests and buy their own drugs from the internet. Many patients are successfully treating themselves but it shouldn't have to be this way.

Patients have been calling for many years for choice and self-determination over their own health. However, as loud as patients shout, their calls for self-empowerment fall on the deaf ears of clinicians and the Royal Colleges and professional "Societies".

Thyroid patients have been battling for years to have choices of medication and for a more comprehensive diagnostic procedure. Yet the RCP and RCGP refuse to engage and wilfully ignore patient calls for clinicians to consider all available evidence as opposed to cherrypicking evidence that suits the Colleges' own narrow doctor-centred positions.

Instead they release guidelines that are not evidence based, that are full of inaccuracies and that rely on doctor-centred GOBSAT-derived protocols.

There is no accountability to patients or transparency within these organisations. They are not subject to FOI, yet make decisions that have deleterious effects on patient health.

Doctors only want to listen to patients who reflect back to them what they want to hear. Doctors don't want to hear about their own failures to treat properly or to diagnose properly. Doctors don't want to hear about other available options. If patients complain about the lack of care they receive, doctors psychopathologise the patients to try and shut them up.

http://www.thyroiduk.org.uk/tuk/About_Us/letters_and_responses/Thyroid-UK-Response-to-Scottish-Parliament.pdf

Mary E Hoult

Position
community volunteer,
Comment date
06 April 2013
Power to patients could be reflected by the DOH and NHS England by ensuring patients did not receive cancellation after cancellation to their appointments,they could also ensure if cancelled the patient was notified and did not turn up to then find out their appointment had been cancelled without telling then !!!! so we have along way to go before systems operate that allow patients to control what happens to them

Mary E Hoult

Organisation
community volunteer
Comment date
07 April 2013
I really liked the Jane Price summing up of the current situation

Mary E Hoult

Position
community volunteer,
Comment date
07 April 2013
please check why my e/mail address which is correct is showing not valid,I have contributed toy our blog for years !!!!! as a patient representive/


Veronica Beechey

Position
patient, researcher and ex-lead governor at UCLH,
Comment date
07 April 2013
Roger Taylor is right to point out that the NHS reforms and government response to the Francis report have done little to shift accountability away from the centre and outwards towards patients.

On the face of it empowering patients and service users is a thoroughly good thing and doctors’ resistance to it is difficult to comprehend. The issue is however more complex than the blog suggests. It is not simply a question of whether patients want to have control over their care or whether doctors consider this to be a waste of time, unethical, or dangerous to a patient’s health. Some of the complexities are discussed in Taylor’s interesting new book God Bless the NHS.

Here are some questions which could usefully be discussed

1. What do we mean by empowerment is this context and how do we know which aspects of their care patients might want to have control over?

2. Has the issue of empowerment been too tied up with the political and economic choice/competition agendas? What would empowerment look like if considered independently of this?

3. How can empowerment be pursued without undermining patients’ trust in their clinicians and the NHS? Trust can be badly undermined when things go wrong, as the Mid Staffs debacle shows. Is it not, however, a valuable attribute when underpinned by respect, clear explanations, good evidence, honesty, openness and candour?

4. In God Bless the NHS Taylor suggests that doctors should see their patients as chief executives of their care and his blog concludes that they should replace upward accountability to managers and politicians with downward accountability to patients. Is this realistic or simply hyperbole? Would the model of partnership working between doctors and their patients be more appropriate?

5. Many patients encounter huge problems e.g. multiple chronic conditions, feeling really ill, being isolated, having inadequate care at home, financial worries, being poorly educated and not having a good understanding of English. Is it reasonable to expect patients who are already stressed or overwhelmed to take charge of their care?


The Francis Report emphasises the importance of cultural change and the need for everyone involved in the NHS to listen to patients. There is good work going on in this area through patient feedback websites and in some NHS trusts. Examples include collecting patient stories, undertaking experience mapping projects, and involving foundation trust governors in projects to improve the quality of care and patient experience. There are also some large-scale projects such as the ‘making a difference together’ project at UCLH. This aims to improve the experience of patients and change the culture of the trust by working with staff and patients. Such projects, which are largely empirically based, will hopefully change the relationship between clinicians and their patients and empower patients in ways that are grounded in the reality of their everyday lives.

Jeremy Taylor

Position
Chief Executive,
Organisation
National Voices
Comment date
07 April 2013
Roger makes some interesting observations but I would like to ask what evidence lies behind his assertion that patients are reluctant to have more involvement in decisions because this would undermine their trust in doctors? There is good, long term evidence that a persistent minority of patients (and about half of hospital inpatients) are not as involved in decisions as they would like. One could just as easily and with more justice in my view make the assertion that it is the doctors and the managers who are the main obstacles, rather than the patients.

Jenny Cobley

Position
Patient and FT governor,
Organisation
GSTT
Comment date
08 April 2013
FT governors, who are elected by FT members, can play a useful role in Foundation Trusts, as they represent patients and the public, as already mentioned by Veronica Beechey. They should have good access to Directors and can help to improve communication between hospital staff and the public. Should a similar model be used elsewhere in the NHS?

Mark Purvis

Position
GP,
Comment date
08 April 2013
I would like every patient contact with me to involve a transfer of power towards the patient: so that they are better informed, better able to make choices about their health, better able to deal with the symptoms that brought them to see me that day. A large part of this is to do with transfer of data and information that underpins good intelligence and decision making. Being open with people's own data is key to this. I realise that I am still very much in the foothills of patient empowerment when I look at the way that information is owned and processed in http://www.patientslikeme.com/

It is true that in demand driven, rationed systems where needs exceed supply, user empowerment is potentially costly. Even in these systems the patient always pays some sort of opportunity cost. Greater transparency about the constraints of the system could lead to greater equity, but the inverse care law is likely to apply.

By contrast, in "supply driven" healthcare systems (market type systems) true empowerment may result in people choosing less intervention and reduced risk of iatrogenic harm. Empowered individuals are likely to turn down interventions where the benefits are marginal and the risks/costs are high.

One day, when I ask "do you mind if I check your Blood Pressure" an empowered patient might reply "yes, I do mind"!

Nigel Horwood

Position
Patient,
Comment date
08 April 2013
From my point of view, as a patient who has spent 35 years with a chronic illness, empowerment means allowing me to actively manage the condition with my health professionals in order to give the best outcome that suits my attitudes and lifestyle. It also allows me to contact them between consultations, if I have to.

Nowadays my main interaction is with the hospital consultants, from three different disciplines, as they provide the bulk of my care. Interaction with my GP is minimal, usually consisting of a catch-up every so many months where I update him with what has happened and can ask for his independent opinion if I'm reaching a decision point.

There is a lead consultant who co-ordinates the three disciplines at high level but where I have been able to make a difference is ensuring that tests or appointments happen in the right sequence and in a timely manner. There have been several occasions when had I not taken the initiative, and simply allowed the system to proceed at its own pace, I would still be waiting for an outcome. This is has not been an attempt to jump any queues but to make sure the limited NHS resources are used effectively, not wasted. It takes some of the burden off of the consultant that should free up his, or his team's, time for more important tasks. I take this pro-active approach because it gives me confidence that treatment is progressing and the process has not stalled.

When I enter a consulting room I expect an equal partnership where any decisions that affect my health are made jointly. The consultant brings the medical knowledge, experience and expertise to the partnership and I bring my history from 35 years of living with the condition and the knowledge of my personal circumstances which will have a bearing on any decisions that we make.

Having this relationship with my consultants does put a duty on me to act responsibly. When I contact them by email I need to be sure that it is absolutely necessary. If I just need some simple, practical advice there is a dedicated helpline who can escalate a problem if they believe it is necessary.

The above approach has been working well. The final piece of the jigsaw would be to have full access, electronically, to my medical records. I believe this will be coming soon but would like to know how the reams of hand written notes will be processed.

I've taken to recording my progress in case it proves useful to others - www.crohnoid.com

Roger Taylor

Position
Director of Public Affairs,
Organisation
Dr Foster
Comment date
10 April 2013
re #40303 Jeremy - good point - the evidence suggests that most patients like the idea of choice but that relatively few exercise it. The King's Fund: Patient Choice How Patients Chose and How Providers Respond by Anna Dixon and others illustrates the gap between patient views of choice and GP views - patients express enthusiasm while the GPs tend to say their patients are not interested. So why is the GPs experience of patient enthusiasm for choice in the surgery so different from what patients say in research surveys? Perhaps because patients like the idea of choice but only with if supported by their doctor. If our doctor says not to worry about it, we are likely to follow their advice. After all, it is their advice we came for.

So how do we try to get all the patients who say they like the idea of having choices able to actually make decisions about their care. I reckon it is going to be harder to persuade patients to be more challenging to doctors than it is to persuade doctors to be more encouraging to patients. However, I don't know that there any evidence for that....or indeed what such evidence would look like. But either way, I would certainly agree that it certainly will require a bit of both push and pull.

Mark Duman

Position
Chair,
Organisation
Patient Information Forum (PiF)
Comment date
10 April 2013
Understanding patients/ ourselves
We keep referring to patients as if they are one homogenous group. They are not. We are all different, and the NHS needs to move beyond 'past medical history' and 'current medication', and (sometimes) ethnicity, to better understand 'us' as individuals. What are my health beliefs, my take on medicines (10% of the NHS spend yet with an average 50% failure rate), my health literacy, and my motivation level(s). Without greater insight, our health care providers, which includes ourselves, will remain in the dark with many interventions and much opportunity squandered.

Mike Stone

Position
retired,
Organisation
none
Comment date
11 April 2013
40281 andrew fieldGP, North Yorkshire LMC member

I wish people (not Andrew specifically - this is a general point) would stop talking about 'shared decision making' - usually it isn't the decision which is somehow 'shared', but merely that the decision has to follow a multi-party discussion.

This type of 'lack of conceptual clarity' is often very problematic, as it happens.

Mike Stone

Position
retired,
Organisation
none
Comment date
12 April 2013
People have made an awful lot of points here, ranging from questions about 'do patients really want to take control ?' to 'how can patients take more control ?'. And resources - but resources, are conceptually somewhat different.

But there is a basic issue here: the GMC has made it very clear, that it accepts the ethics of 'consent' - clinicians must inform patients of the clinical outcomes of offered treatment(s), and of no treatment, then (as noted by Peter Singleton in his first point) the patient incorporates those clinical factors and his own wider-life 'perspectives', and the patient then accepts or declines any offered treatment(s).

The clinicians do the informing, then the patient does the 'deciding', then the patient simply accepts or declines (and the patient need not explain why he is accepting or declining, if he does not wish to explain).

That isn't 'shared decision-making' - and furthermore, for my concern of end-of-life but mentally-capable patients who are in their own homes, clinicians are reluctant to provide the prognoses, and also seem to frequently not properly grasp the concept of 'the patient has refused' (for example, it is quite clear that legally, a person can refuse attempted cardiopulmonary resuscitation, for a 'sudden' cardiopulmonary arrest: it is equally clear, that whatever one wrote on an Advance Decision, many or most 999 paramedics, if called to check that you had actually arrested, would in fact attempt CPR).

There also seems to be an 'attitude' that professionals can somehow 'distrust live-with relatives by default' - very dubious, when Shipman was a GP, and Mid staffs was down to professionals (everyone should start by assuming honesty, unless some evidence of dishonesty is present: and everyone can 'keep an eye on' the behaviour of everyone else).

So we actually have both that some or many patients are reluctant to make decisions which in theory should be made by them, and also that clinicians are often unwilling to properly accept decisions made by patients - not 100% satisfactory ! The reluctance of patients to make the decisions, isn't all that easy to address - but the acceptance of decisions which the patient has made and expressed, is a simple legal/logical issue, and really should be something that clinicians do not seek to obstruct, by writing very dubious guidance in this area.

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