This article – longer than my usual blogs – is based on a speech to the Professional Standards Authority ‘Future of Regulation’ seminar on the 12th of February, 2016.
It brings together ideas that have appeared in other blogs.
“We now have an opportunity to make more radical changes to redesign health and care regulation as a whole. This will ensure that it is focused only on what it should do and can do so that we can hand back to people who work in health and care the responsibility and accountability for quality that is properly theirs. Some important principles are becoming well established: these are the antiseptic power of transparency, a commitment to both personal and shared responsibility and a renewed engagement with patients and the public.” This is from a terrific report by the Professional Standards Authority called Rethinking Regulation.
So, what does ‘renewed’ engagement with patients and the public look like?
To address that, we need to look at current healthcare culture – how things are done. I believe, like the PSA, that there is lack of space for staff to reflect on practice and be able to do what they need to do. In turn, this owes much to overly rule-bound healthcare environments.
All of us, when stressed, tend to pass on our frustrations to the person lower down in the pecking order. We kick the cat.
Even in normal healthcare times, government and national agencies (policy-making ones and regulatory bodies) pass down excessive rules to commissioners. Commissioners pass it on to providers. Organisational leaders in provider organisations pass it on to staff (clinical and non-clinical) and this can have detrimental effects on the quality of care, and on patients and carers.
We do not live in normal healthcare times of course. The pressures on healthcare delivery in a changing society seem not be accompanied by any coherent vision of how to cope with those changes. The desperation for a new sense of order and the tendency to kick the cat seems actually to be increasing. Though national agencies may talk of letting go, the sense of grip and pressure felt at a local level is intense. Polarisation and power battles are inevitable.
I believe that patients can help.
Patients can be true partners for improvement and change. They can help identify what matters, rethink problems, generate solutions, model better relationships, promote better decisions and improve practice. (see, The Seven Things That Patients Bring). But, at the moment we are all hamstrung by bad habits.
The way we think about patients’ contributions is stuck in a time warp, our mindset constrained by an outmoded view of what patients can bring (or cannot). Moreover, the way we do patient and public engagement is not working – it fails to have any real impact because it is outmoded and unfit for purpose. In part, it was never designed to bring real change, but to buffer it and maintain the status quo. Now, if we really want solutions to our current healthcare challenges, this all needs to change.
The task is fourfold:
• Learn to value what patients can bring – see patients as partners
• Change how engagement is done – rethink engagement processes
• Support people’s capabilities to better work together – develop the right skills
• Develop new opportunities for patients to influence decision making – create new roles.
Patients can help
About twenty years ago, I was sitting on a psychiatric ward with nothing to do – the lunch had been awful, the Occupational Therapist had been sacked (so no activities that afternoon) and the ward seemed full of screaming folk.
A doctor strolled onto our bay, and gave a perfunctory nod before gingerly pulling on the curtain rail beside my bed. Even in my disturbed state, I could see his behaviour was more odd than mine. I asked him what he was doing: ‘Just checking to see if you could do anything stupid’, he replied and then walked back down the corridor. I was left contemplating my suddenly increased range of treatment options.
Fast forward ten years: I was Head of Patients and the Public at the Commission for Health Improvement (CHI) the health inspectorate at the time (predecessor of the Healthcare Commission and CQC). I was reading the National Patient Safety Agency standards on mental healthcare. One of them was to decrease in-patient psychiatric suicides to zero by…. Removing all non-collapsible curtain rails.
I was gobsmacked – talk about hitting the target and missing the point! I thought of Jennifer-Anne who had choked to death on her food while unsupervised after she had left the psychiatric unit and gone to a nursing home. (She had earlier been paralysed from the neck down through a failed suicide attempt). I thought of Dave who had gone to his caravan and hanged himself. And I thought of Laurie who had drowned himself in the reservoir.
All those deaths had occurred away from the in-patient environment. And I don’t think any of those would have appeared as stats during inspections. And the unit would have ticked the box on removal of ligature points.
Times may have changed – organisational habits have not. Two months ago, our MSK (musculoskeletal service) decided to clear a backlog of appointment letters. We were behind our targets on this measure. We brought in a weekend batch of administrators to write letters telling people when their appointments would be, rather than offering them choice. The risk, as one administrator pointed out, was that we would then receive more phone calls (perhaps at times when we were short staffed, between 5-7pm) from people wanting to change their times or, even complain. This was at a time when the CCG was understandably nervous about our performance and during a phase when we were all doing our best to improve relationships by proving our credibility.
I think that both scenarios above would have benefited by involving patients – in the former, I should have been asked ‘what will make you feel safe on the ward’. This might have led to alternative outcome measures. Instead, they locked the doors at 8pm (after Dave’s caravan escapade) and thereby deprived me of my one visitor, a local Chaplain who I could only get to see at 9pm.
If that were all to it – better engagement – then we could rest easy. However, it is trickier than that, when the main engagement tools at our disposal don’t work.
Rethinking patient and public engagement
On the whole patient and public engagement changes little. The engagement ‘industry’ focuses largely on inputs, activities and processes (the methods of gathering data, how to capture views, etc) over impact and outcomes.
The approaches and methods used rely on two main ‘styles’. The first style is that of feedback: Patients are invited to fill in questionnaires, attend focus groups, or tell their stories (if they are lucky) at Board meetings or the like. The focus is what happened to them in the past, the meaning of their data is left to professionals to assess through their own lenses, based on their own assumptions and often narrow institutionalised thinking (often what is seen as ‘feasible’ rather than necessary).
Patients are not permitted to eyeball the data, bring their own interpretations to the data, let alone be partners in decisions about what to do. This feedback approach mirrors traditional medical paternalistic models – you tell us the symptoms, we will provide the diagnosis and treatment. It is stuck in child-parent mode.
The second style is ‘scrutiny’. Whenever there is a governance committee, an advisory group or the like, the call goes up for a lay representative. I know a patient and public involvement lead who likened her role to that of ‘lay rep pimp’. Without clarity of role, support or training, a rep is expected to ‘bring the patient perspective’ to the decision making table.
I was once asked ‘so David, what do patients think’. ‘What, all of them?’ I thought. In search of credibility and leaning on what we know, we tell our stories – half the people in the room applaud this ‘telling truth to power’ and the other half fall asleep (‘another patient with an axe to grind’ or ‘personal agenda’ they mutter later in the corridors). If we wise up and come to the table next time wearing suit and tie, brandishing data, those that were awake last time fall asleep and accuse us of ‘going native’. I have written about this rep trap in more detail elsewhere.
The consequence of failed representational mechanisms is that committees lapse into a default ‘us and them’ mode. Frustrated, marginalised and unprepared ‘reps’ start finger-wagging or fall silent. This is adolescent-parent style engagement.
If we are serious about partnership, then we need to overhaul the engagement industry.
Patients as Leaders
The last few years have seen the rise of new forms of engagement. Online dialogue, experience-based co-design, health champions, peer support and the like. Mark Doughty and I founded the Centre for Patient Leadership to support patients (those with life-changing illness injury or disability, and/or with long-term conditions) to be influential change agents. CPL has trained over a 1000 patients to develop the capabilities to work with professionals as equal partners. If you would like to read more about patient leadership, click here or check out Mark Doughty’s work here.
However, for patients to be partners for change, there has to be an equal emphasis on creating the right opportunities, for example in governance, research and audit, service improvement, and training and education. This could be at local or national level. And these need to be where professionals are willing and able to work as partners too – not just to slot people in as reps or feedback fodder, but to recognise the insights and vision that patients bring.
Only when capabilities and opportunities are matched will we see results – patients and professionals asking each other questions, rather than getting embroiled in the usual tit-for-tat exchanges and defence of traditional positions; only then will we see joint explorations into what might be possible rather than blame for what has gone before; only then will we see the challenging of assumptions as to why things are as they are and the generation of new solutions to current challenges.
The system needs the new eyes and fresh courage from erstwhile outsiders. That’s what ‘renewal’ means.
Opportunities must be created at senior level too. You would not expect an organisation focused on delivering services to woman, or claiming to be woman-centred that is run by men. In a few years time, it will seem odd that we have ever had a ‘patient-centred’ NHS that is run entirely by clinical and managerial leaders. (By the way: If at this point, you are thinking that ‘we are all patients’, have a read of another blog on that particular myth that helps to uphold the status quo).
The next step in the evolution of patients occupying positions of influence will inevitably be patients as chief executives or directors – partners at executive level. We are not talking about mere representatives or non-executive positions on Boards. Both Steve Laitner (a GP), and patient entrepreneur Michael Seres spotted this before I did. Michael persuaded me it was a good idea and has advocated for it for several years. Steve helped create the first opportunity for such a role in the NHS. Ironically, the Naylor Enquiry into leadership, rejected the notion, even after Michael, myself and Alison Cameron gave evidence to his panel about the need. I hope he has changed his mind now.
The Patient Director
Three things led to the idea of a Patient Director in Sussex MSK (musculoskeletal) Partnership.
Firstly, the Lead Provider model – this is where one organisation or partnership is commissioned to provide integrated and coordinated services for people with a particular clinical condition (such as diabetes or MSK services). This includes self-management support, primary, community and secondary care. You can read more about that model here – again Steve Laitner is one of its leading advocates. The model lends itself to a more patient-centred way of thinking.
Secondly, one of the partners that was bidding to be the Lead Provider for MSK services in Sussex, was the Brighton and Integrated Care Service (BICS). BICS, an innovative social enterprise and its partners (Sussex Community Trust, Sussex Partnership Trust and The Horder Centre) decided that it would appoint the first ever Patient Director.
The Patient Director would be someone with long term experience of using services, and who could oversee patient-centred work programmes. In my case this has come to include learning from patients experiences, patient and public engagement, self-management support and patient communication. These are usually activities taking place in different siloed teams in hospital trusts and often led by those at more junior level, reporting through nursing or corporate departments – in other words, filtered through professional hierarchies.
Thirdly, the rise of patient leadership meant that the Sussex MSK Partnership was open to someone who could bring in a different approach to patient and public engagement – they were aware of, and were keen to build on the work that had been undertaken on patient leadership.
The executive team for the Partnership comprises a Patient Director, Clinical Director and Managing Director. It is a tri-partite leadership model, and one that tries to avoid binary relationships between the clinical and managerial. After all, a two-legged stool falls over, as my friend Andrew Craig once said. Much of my work is about getting things done through informal influence and trusting relationships – much of this I have learned while working with Mark at CPL.
How does it work?
As well as having oversight of the four work programmes, I can make sure they are coordinated. As I am at executive level, I have more chance of influencing other work. Thus, I am working closely with clinical colleagues on developing measures and methods to find out whether patients feel better as a result of our interventions (so-called patient-centred outcome measures).
I am also able to bring patients into system improvement work, and I want to develop a pool of supported, trained and paid, patient leaders or partners in governance, improvement, training and research. I would like to see patients and carers on each of our nine multi-disciplinary teams that try to make sure we focus on what matters – in areas such as pain management, rheumatology and orthopaedics.
One example: A few weeks ago, we returned to the thorny issue of improving how we communicate with patients and the letters we write. We wanted patients to be involved. I wanted them to be partners, not just story-tellers offering feedback. At one stage we were discussing how to communicate with patients about booking appointments.
A woman who had been through our service, told us that our team phoned at inconvenient times in order to book appointments. She suggested that, instead, we send ‘opt-in’ appointment letters and put her in the driving seat. Let her phone back when she had her diary in front of her and she could plan out her week. Even I balked at that! My assumptions were that this abrogated our responsibilities, foisted too much on patients and might lead to many not booking appointments at all. But we will try it as an experiment.
So, patients can ask difficult questions (why do you do it like that? What difference will that make to patients? Have you asked what patient think of that?), challenge professional assumptions and come up with better ways of doing things.
Smile downwards, frown upwards
The job of leaders – any leader, not just a Patient Director – is to allow that space for shared reflection and buffer the pressure. In addition, it may require the courage to push back on those pressing down with target driven mindsets. If this experiment is a success, perhaps we need to negotiate more flexible measures of success – ones that focus on the experience of patients, rather than a crude waiting time. The presence of a Patient Director may also make those arguments more credible – we shall see.
Liam Trelawney, a Patient Care Adviser at Sussex MSK Partnership, says the traditional management response to externally imposed targets is to ‘smile upwards and frown downwards’ – i.e. please those who have set the targets, and ensure that those ‘beneath’ do what they are told. Instead, he points out, we should ‘frown upwards and smile downwards’. It is this approach that will build the spaces for professionals and patients to work together for what’s best.
Looking back, I now wonder what might have happened if a Patient Director had been around when I was on the psychiatric unit. Might my three friends still be alive?
In summary, just as we need to rethink healthcare delivery and just as we need to rethink regulation, so we need to rethink Patient and Public Engagement. In fact, rethinking engagement may be the key to unlocking change in the other two.