Is patient engagement important in leadership?

The Health and Social Care Bill has once again resurfaced the debate about patient and public involvement in the provision of health care – with much disappointment being voiced about the cumbersome structure and weak powers allocated to HealthWatch, the latest in a long line of attempts to establish an effective, statutory, consumer voice in the English NHS.

Drawing on experience from other sectors, The King’s Fund called for HealthWatch to be given sufficient powers to act as a consumer champion and counterbalance Monitor’s powerful position as economic regulator. Meanwhile, peers have debated at great length whether establishing HealthWatch as a committee of the Care Quality Commission gives it sufficient status and authority. HealthWatch might yet develop into the effective body that activists are calling for, or it may turn out to be another damp squib, but isn’t the obsession with organisational structures missing the point?

Not everyone wants to join a committee to sit around a table with managers and health professionals talking in incomprehensible jargon. If only NHS staff could be persuaded to do a better job of engaging individual patients in their own care, the effect on health outcomes could be far more dramatic than the sum total of all those extra meetings, consultations and service reviews that HealthWatch will be expected to endorse.

In most NHS organisations, leadership responsibility for patient and public engagement forms a small part of a very busy person’s role, often squeezed out by competing priorities. A visitor from Mars landing in one of a multitude of NHS trusts would have little difficulty finding out who leads on patient safety or clinical governance, but they’d probably have to search long and hard to find the person in charge of improving patients’ experience.

The very fortunate Martian whose spaceship touched down in one of the tiny handful of trusts with a Director of Patient Experience would immediately notice the difference. There he would find a senior clinical leader with a clear vision and a brief to improve patient engagement and patient experience across the organisation. Strong support from the Chief Executive and board gives the Director the clout to get things moving. Patients and carers are actively involved on committees and other decision-making forums, but even more importantly, all staff know they must do everything in their power to ensure that individual patients have a say in the decisions that affect them, particularly decisions about their clinical care.

‘Nothing about me without me’ is the guiding principle in this organisation, respected by all. These patient-centred values are effectively communicated and regularly reinforced at every level, from board to management to frontline staff to patients and families. They are also incorporated into human resource policies, helping to determine the way staff are recruited, trained and rewarded. Special training is available for all staff in communication skills, customer service, and quality improvement methods. Innovative ideas from both staff and patients are welcomed and resources are made available to implement improvements.

Experience has shown that small, inexpensive changes to the physical environment can often yield considerable dividends in terms of improved patient satisfaction. But, as our Point of Care programme has demonstrated, the most effective changes can be relational – transforming the interactions between patients and the staff they come into contact with, and ensuring responsiveness to patients’ needs and preferences. Continuous patient feedback, using both narrative methods and surveys, ensures that progress is monitored, excellent practice is noted and rewarded, and any problems are tackled speedily.

Our visitor from outer space may notice that staff morale in this organisation is exceptionally good and patients are hugely appreciative of the care they receive. Happy staff make happy patients, and vice versa. If he’s very perceptive, he might also realise that health outcomes in this organisation are better than the norm, because patients who are well informed and well supported are more likely to make informed and personally relevant decisions about their health, adhere better to treatment regimes, experience fewer medical errors and side effects, and use less health care. It might even dawn on him that strengthening responsiveness to patients is the best way to ensure the long-term sustainability of public health services.

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#1112 Peter Thomas
Cancer Survivor


Some great comments in there and have to agree with the bulk of it. I think and i certainly get very frustrated at the very high level of 'management speak' and acronyms and 'stuff' that is talked about within LHB's. And when it actually comes down to the simple 'human care and compassion', staff are too busy, in fact flat out trying to manage their targets and are also so short staffed that they cannot - no matter how much they want to, give more attention to the patient.
The whole process is far to top heavy, missing the fundamentals of patient care entirely and is caught up in meetings, seminars, conferences and a lot of 'talk' with very little action.

I know and am also very sure that every Nurse, CNS and other key people within the organisations mean so well, but just cannot action things because the other things they have to do.

The NHS across the whole of the UK is at best patchy and probably 'all over the place'.

Perhaps you can tell it frustrates me no end!

Peter Thomas
Cancer Survivor

#1113 Alex

I was hoping to find out what happened to your “visitor from Mars”…Next installment, perhaps?

#1114 Diane Andrewes
Hon Secretary
Eastleigh southern parishes Older People's Forum

I am the Hon. Secretary of an Older People's Forum, which has been concerned about NHS patient issues for over 12 years. We have published research into Hospital Travel, Prescribed Drugs and Cancer Care, but have very little evidence that the concerns and experience of older people, as patients and carers, have been taken on board by medical professionals. We need persuading that the voice of patients will be listened to in future and await some detail of how this will happen.

Retired NHS

I wholeheartily agree with these comments and so wish that someone somewhere would realise that patients and in particular our vunerable elderly patients are a human body with a voice that so desperately wants to be heard even if it is through a carer,PLEASE lets remove the invisible curtain that somehow gets magicked around patients and makes them invisible to staff in case heaven forbid they dare ask anything.

#1116 Adrian Turrell
Ex-NHS, retired with MS


I had worked in the NHS as a local, Trust then regional manager, and as a regional NHS Training Manager and also built an academic career, before retiring early as a Senior Lecturer in Health Services Research and spending nearly a decade suffering the 'slings and arrows of misfortune' in the NHS as a 'full-time' (increasingly dependent) patient.

I think this argument represents the difference between a 'top-down' model of change and a 'bottom-up' view of change - whether change is driven by NHS policy makers at the 'top' of the 'power hierarchy' or from the bottom by patients or patient sympathists in Trusts (like your new tier of managers with clout' i.e "Directors of Patient Experience"), who then share the good news that results from the fruits of their labours to other Trusts, who then suddenly realise that by orientating care around patients needs, as defined by listening to their patient populations, there are 'win:win' scenarios all over their Trusts. So, a local uprising becomes a revolution, and you have 'bottom-up change' making politicians change the way they think in order to abolish patient unfriendly NHS policies and practices and promote patient friend ones, in order to keep themselves re-elected.

My faith in relying on NHS policy to produce desired change from the top down is not great as the patient perspective has been re-branded in policy documents for at least two decades in a variety of guises such as 'patient empowerment' in the mid 1990's. My faith in building change from the bottom-up is that without the 'stick' of policy to whip Trust Chief Executives to tick the Patient and Public Involvement (PPI) box, in more significant ways than recruiting nominal Trust members to their 'books', then we might as well be content with small-scale local change that may or may not stand the test of time.

Thus explained, it would be nice to have a perpetual powerful under-current of 'bottom-up' change, to keep 'top-down' change having to 'toe the line' with it. This then could mean that the Achille's heel of both forces for change - namely continual change in NHS structures, especially power structures in terms of who controls money (and what their motives are in relation to this whole.debate) - is, at worst patient neutral in terms of this change movement.

Having been a senior manager, and a grovelling patient, and an objective researcher, but thankfully not a politician, I think these are messy waters, where people of all persuasions can seemingly unite under one banner, because they all have different interpretations of what is written on that banner.

#1117 Sarah Tucker
Assistant Web Editor
The King's Fund

Hi Diane

Keep an eye on our site on Tuesday - we're launching two new reports around continuity of care for older patients and the care of frail older people with complex needs.

#1118 Dr Paul Worthington
Chief Officer
Cwm Taf Community Health Council

I'm speaking from across the border in Wales, where we still have CHCs, and we think they play an extremely positive and challenging role in working with patients and Health Boards.

There's some interesting points here, and I welcome any progress in engaging the patient voice. It can yield real benefits. However, I'd like to lay down a few challenges:
- there's an emphasis here on the 'patient' voice. However, I think an equally important issue is how we engage those who aren't patients.Those who don't have contact with services, those who may have disengaged with services, or people and communities who aren't service users now but might be in the future. Listening to the individual and community voice means patients aren't the only ones who should be heard about services.
- engagement with patients, individuals and communities shouldn't be a passive 'we hear you' process. Dialgogue is crucial. Just as service users should feel able to challenge managers and clinicians, so also should those of us in the service feel able to challenge and articulate views. We should all be willing to discuss, explore, test - and in a supportive and user-friendly environment. I've been working in health for over 20 years and I have passionate and informed views; so have most of the people and communities I meet with in my work. Let's use this range of persepctives
- information is vital, but let's not pretend just putting a whole load of stuff on on a website that people can access (if they like using computers or have access to broadband) is the key to patient empowerment, New technologies great, but we need a bigger range of models in our engagement armoury
- I personally feel one of our biggest challenges is how we energise the patient voice amongst people with long term conditions. There's often an expert voice there that we don't tap into enough
- and lets be clear; good engagement takes place at many levels; GP consultations, user groups, public meetings, citizens juries. Lots of models, all with pros and cons. Me, I often think that 'local is king', but not all of my Board agree. And that's healthy

#1119 Julian Simcox
PPG member
Three Wins Academy

• Such a refreshing blog Angela. Would have been even more so if you had said more about the Primary Care patient/ clinical setting. As a patient, and now a member of the Patient Participation Group at the practice where I have been a patient for almost 3 decades, I would like to underline the statement in your final line: “It might even dawn on the visitor from outer space that strengthening responsiveness to patients is the best way to ensure the long-term sustainability of public health services.”

• The first thing our new PPG has done is to design our own survey of patient feelings. We did this as a collaborative exercise and this led directly to a broad front of improvement momentum. I am hopeful that this will lead later this year to an invitation to patients to attend workshops aimed at enabling them to self-empower, self-manage, and take charge of their own health. This will include self-monitoring and interpretation using Baseline© the tool recommended by the NHSi for monitoring process and pathway improvement, but as yet not to directly enhance the physician/ patient micro-system. Thank you Angela for your advocacy which helps add credence to our intended approach.

#1120 Dave Thompson
Assistant Director of Inclusion & Partnerships
5 Boroughs Partnership NHS Foundation Trust

Hi Angela

I enjoyed reading your blog, you highlighted lots of interesting issues, but I would like to focus on one in particular.

I agree, there seems to be little evidence that NHS leaders are engaging with service users on a regular basis. That is unless you look at 5 Boroughs NHS Foundation Trust located in the North West. Our Chief Executive Simon Barber and Chairman Bernard Pilkington play very active roles in the monthly meetings of our Joint Service Users and Carers Forum. Their 'Take it to the Top' sessions provide the opportunity for service users, carers and other Foundation Trust members to engage with them in an hour of open questions and answers, as well as providing time for high level updates.

In addition, our Personality Disorder services have developed a coproduction model of Experts by Experience, where service users are known as EBE’s and Experts by Occupation, where medical and nursing staff are known as EBO’s. They have developed and delivered a training programme that is used across the trust to raise awareness of PD. Together they share responsibilities for chairing business meetings and undertaking business reviews.

During a recent visit to the trust, Jason Wolfe Chief Officer at the Beryl Institute from USA, internationally recognised in patient experience described our commitment to engagement as “One of the best examples I have seen in healthcare of a willingness to step out and engage in a conversation of patient and community needs. By providing people direct access to the top and ensuring honest and straightforward answers, the leaders make a statement about how all staff should behave in engaging with patients, families and the community”.

The trusts reputation for developing meaningful and sustainable engagement with service users and carers is recognised nationally and significantly contributed to back to back Nursing Times Awards in 2010 and 2011.

As we look ahead to 2012/13 we have three high level objectives centred on engagement, experience and communication, so I look forward to the next 12 months knowing that there’s plenty more to do.

In the meantime if you do hear from any Martians planning a visit to planet earth please give them my contact details, I’ll be pleased to share our experience with them.

#1121 jane dunnage
lupus patient

Don't worry about waiting for Martians to arrive, I have just returned from an appointment (podiatry) which took 5 and half months to arrive (central London hospital by the way), with a sheet of exercises (printed off the internet so that only part of the text is included, if someone had looked at the printed copy they could have recentered it!!). I was told that I shouldn't have been referred to that particular clinic (as if it was my fault - my consultant rheumatologist had asked my GP to arrange it). I was confused to be told that one of the staff I had seen around 3 years ago was not part of their team, although they are all operating from the same department and the health care professional subsequently agreed to ask them to send me a review appointment - how am I as a patient supposed to know all the inner workings of each department, let alone any personal rivalry between staff, which I was getting a hint of!

Lupus is a very complex, long term disease, affecting many parts of the body, so this is just one (v important) part which causes me problems, and I have to attend a wide variety of clinics. I am a reasonably intelligent person, but come out of this situation incredibly frustrated. The time delay has resulted in further problems and no easy outcomes have been offered to me.

Managers, policy people etc need to be 'in my shoes' for at least a day, and preferably longer before they speak about patient experience (especially for long term conditions) rather than theorise about a simple solution. In the past 4 months I have only had one week without at least one medical appointment.

Patients with long term conditions desparately need one person who takes responsible for all aspects of their management: I'm not sure that this has really been understood by many people yet! Praps the Martian would be better trying health care on Mars

#1122 Dag Saunders
Telford & Wrekin Link

I will watch the blog with interest. Having spent most of my adult life working on the patients side of the NHS although admittedly in a management role (latter stages). I am now the west midlands regional representative to the DoH group which is overseeing the introduction of Healthwatch.

We were unsuccessful in achieving any radical change from the Bill to the Act - most important areas were the need for Healthwatch - both local and national - to be independent. Also we sought to ensure that allocations to support local Healthwatch were ring fenced.

We have been a little disappointed that the King's Fund has not been sufficiently forward in addressing patient and public representative issues and hope that Angela's initiative heralds a new page in this area.

We will keep an eye on the blog and post comments where appropriate.

Also glad to see Diane Andrewes is still active.

#1123 Harry Longman
Chief Executive
Patient Access

Thank you for saying this - though it seems obvious that leaders should be concerned with patient experience, it needs to be said. If they aren't, and visibly, how can any other staff be expected to follow?

We take patient feedback very seriously and are asking them about their experience after a major change in general practice around patient access. We ask them as soon as they have seen or spoken to a doctor, so it is immediate, and in as much detail as they want to say.

But could I add that there is much to find out about patient experience through operational measurement? How long does it take to get an appointment? The advantage of this kind of measure, as well as relating directly to patients, is objectivity and consistency over time, different settings and patient groups. The starting point is to measure what matters to patients.

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