The Bevan Exemplar Programme 2017 -18 builds on the successes of previous cohorts and there is now a critical mass of transformational projects in key health and care contexts.

Continue to build on and scale-up success

The content and delivery of the programme is excellent and has resulted in another high rate of success. Exemplars enjoy the experience and gain so many extra skills that they will apply for years to come. There is a massive pride in being an Exemplar and many projects need to be nationalised. There are also opportunities for this approach to be applied outside of the NHS with other key partners such as social care and local government. It is encouraging that the Bevan Commission is exploring the potential to export the Bevan Exemplar scheme to stakeholders such as Regional Partnership Boards to support integrated care and promote the inclusion of other public services.

Invest in big picture innovation

The early successes of previous cohorts has set a high standard. The Cohort Three Exemplars set long-term and ambitious objectives that, despite initial enthusiasm, may not have been truly realistic. Despite this, the setting of long-term, big picture objectives for pathways may be a better framework for the future, especially as Exemplars adapted their objectives and measures after an initial stage of learning about their processes and issues.

Make time for project completion

As more long-term, big picture projects are supported, the Bevan Commission should allow for some ?over-run? to the programme so that delayed projects can be completed.

Formalise finance support

Mentors and other forms of support have proven to be very beneficial to this Cohort and their achievements. Where Finance Exemplars were available and integrated with projects (from conception to conclusion) the projects achieved more and with a robust business case. This aspect of the programme is less formalised and should be much more integrated with every project as subsequent cohorts set out.

The role of the advocate in our community must not be underestimated. Unfortunately, my experience has taught me that this happens far too often – advocates are seen as agitators and can be easily “shot down,” constantly in the line of fire.

We become involved in case after case after communication has broken down between individuals, families and NHS or social services. Our jobs ideally should not exist, but for those we support, we are a lifeline for support and information.

Giving people a voice

For the past three years I have worked as an independent advocate (with no formal affiliation to the NHS or social services), and in this role I have helped 749 people. A large percentage of this work involved attending meetings on behalf of or alongside patients: multi-disciplinary meetings, discharge meetings, continuing healthcare meetings, NHS complaints and on-ward meetings.

We all know how frustrating it can be when people do not listen to us. Unfortunately, having an illness or a mental health problem can sometimes mean that it’s even harder to voice your opinion and for your wishes to be taken seriously by others. This can be a very difficult time for families and individuals, who have to deal with health and social care professionals who they are unable to communicate with effectively.

People who are ill and in hospital are often scared and so are their families. Families find that they are not appropriately involved in decisions being made about their own care or that of a loved one. This can result in unsafe discharge and total distress for the individuals and their families.

Competing demands for families

I recently picked up four cases involving people in care homes. Their families had contacted me to say that their relative has been discharged without proper planning, but more importantly without being allocated an advocate. When I called the hospital to find out why these individuals had not been allocated an advocate, I was told: “They don’t need one – they have family”.

With all due respect to the families of those who are ill or in care homes, they are often far too busy worrying about their relative and the practical demands of their illness – finances, property, day-to-day care – to be able to navigate and challenge the confusing health and social care system.

On a frequent basis I am told that a visit from a healthcare professional was fleeting and uninformative: “Someone came to see me – talked at me and then walked off.” Often we never find out who that person was nor do we have any useful record of their involvement.

Looking out for their best interests

A period of illness is a stressful time for patients as well as for their families. The best-laid plans can go awry, judgment is impaired, and, put simply: you are not at your best when you are sick. Patients need someone who can look out for their best interests and who can cut through red tape: clarifying options for hospitals and doctors, obtaining information or asking specific questions. This support can result in faster discharge with all parties being made aware of what’s going on and what their next steps are.

Very often the advocate is the last to hear about meetings regarding a patient (or not at all) and this means that there is more work to disentangle the mess and stress that has been created. We have been called a nuisance by health and care professionals and I have heard other negative statements including: “Things would have been much simpler if you weren’t here”, “Don’t phone an advocate – they are evil”.

We are not here to win popularity contests and we are saddened if health and care professionals feel this way. Our job is simply to cut through the red tape and explain to the individual/patient the latest progress in their case and what their options are. We do have the right to question decisions as our job is to support the individual or patient. We do not give our ‘personal opinion’ – we purely offer impartial guidance for patients and families during a period of confusion and stress. If you think about it: life would be so much more efficient if we could remove this stress from the hospital experience and patient’s care pathway.

Here to help, not hinder

I have found that after three years of working as an advocate that many in the medical profession do not really understand the role of the advocate and the legal obligations that are inherent to this role. Myself and fellow patient advocates have struggled on a daily basis to obtain any information (even with the patient’s consent) and to be meaningfully involved so that we could help our clients plan their future.

Luckily, having attended many multi-disciplinary meetings, some professionals now see the advantage of having an advocate on board, and I am now starting to work with some GP surgeries and mental health teams to support individuals.

Advocates are here to help, not hinder. Having an independent, professional supporter that the patient can trust and is not viewed as part of the ‘establishment’ can be very useful for the NHS. The onus is on the medical professional to explain the situation to the advocate, and then the advocate has time to sit down with the patient to explain the situation to them and to discuss any queries that they may have.

The patient will then be more relaxed and less confused in assessing their options, and dare I say that this could aid faster recovery? Certainly it helps to reduce stress and anxiety, with benefits for the mental health of the individual or patient.

With a more relaxed and informed patient and family, we can also hope that complaints will be reduced and for far less antagonism between patients, their families and healthcare professionals. This is important at a time when the NHS is at full stretch –health and care professionals are often so busy that they simply don’t have the time to sit down and talk each individual through their options and care plan. They are in urgent need of the support of other partners and professionals and this is where advocates and Third Sector organisations can most usefully intervene.

Let’s start working together

I truly believe that the Third Sector and the NHS can work together in making sure that everyone has fair access to information and services in order to lead healthier lives. Third Sector professionals work out in the community on a daily basis and in my role as an advocate I have been involved with issues spanning health, housing, poverty, safeguarding and many more that influence a person’s overall welfare.

Hopefully I have had an impact on reducing health inequalities and improving wellbeing, especially the mental health of my clients. Local politicians and the Older People’s Commissioner acknowledge the benefit of the independent advocate, and a copy of my three-year report has been sent to Welsh Government following an endorsement from the Minister for Health and Social Services.

The public health workforce is our backbone and our collective knowledge is our strength. To be the best we can be, it is essential that we continue to build on our success by creating the opportunities to learn from each other.

To maximise this potential, Third Sector organisations need to be recognised, supported and involved in the development of the health and care system as a key part of the public health workforce.

I write from my personal experience as an Advocate – there are so many other Third Sector charities and organisations that can be involved in this process, and we should all be linked up to work together in partnership.

We need to be allies, not adversaries. Please – for all our sakes – let’s start working together.

Sylvia Targett is a Bevan Advocate and Advocacy and Information Officer at Age Cymru Gwynedd and Mon.

The views contained within this blog are those of the author and do not necessarily represent the views of the Bevan Commission.

As Executive Chair of the Leading Wales Awards, each year I receive huge numbers of nominations for ordinary individuals with extraordinary leadership skills from across all corners of Wales. All of them demonstrate courage and integrity in times of challenge, change and constraint.

Leadership that creates the future

Over the fifteen years of reading and marking so many nominations, I have been able to identify a gap in leadership in Wales: transformational leadership. We are very good indeed at transactional leadership: striving to deliver on agreed targets and goals, which is important to keep our communities, organisations and businesses safe and stable.

But we are less adept at transformational leadership, which is the sort of leadership required to build the Wales we Want. This is the leadership that

• inspires and engages buy-in from others
• displays courage to challenge assumptions and the ‘old ways of working’
• demonstrates a strong moral compass
• treats everyone as individuals and builds trusted relationships
• stimulates creative and innovative thinking and a safe space within which to test out new ideas
• develops the skills of everyone – from grassroots to board room level

This is the leadership that creates the future: that delivers on the goals of the Wellbeing of Future Generations Act and ensures that we build the Wales that our children and grandchildren need us to build.

Bass & Avolio’s ‘Full Range of Leadership Model’ combines elements of both transactional and transformational models of leadership. Their model (and their subsequent research over two decades on that model) makes clear that the most effective leadership is that which delivers on specified goals with outlined, agreed expectations, and also complements that performance-focused leadership with other approaches designed to transform and build the future.

A leadership myth

Let’s immediately dispel the myth that leadership is only focused at the level of the Chief Executive, the Chair, the Executive Managers, the Medical Director, Clinical Board Directors or the Lead Clinician in a specialist area (or equivalent hierarchical posts in non-NHS organisations). Leadership is an element of every employee’s role and responsibility.

All of us can take on leadership role(s), whether at work or for a particular project or at home. Importantly, it is also our choice whether to pursue available leadership opportunities or not. Sadly, many choose ‘not’.

I agree that the roles of Chief Executive and Chair together with other senior roles must have a strategic leadership focus. That this focus is about delivering on the here-and-now together with building the future. A great deal of their strategic leadership must certainly be about managing service delivery performance.

However, those senior individuals are also leading the vison for the future; building and nurturing trusted relationships with other organisations. They understand the need to work continuously and tirelessly to really engage their own employees and patients. To maintain, develop and transform a sustainable Health Board they surely understand the need to deliver on the “full range” and provide exceptional leadership that is both transactional and transformational.

Delivering exceptional patient-centred care

The delivery of patient-centred care consistently by every NHS professional is, to me, all about leadership. Patient-centred care is not about more time or resources but is about transformational leadership behaviours and values.

Leadership behaviours that demonstrate genuine care for that individual patient, help to develop a safe space within which a vulnerable individual can talk about hugely important and sensitive stuff. In this trusted relationship, patients can be assisted to understand, come to terms with and lead the way on managing their health – as advocated by the principles of prudent healthcare.

The aspiration: a consistent approach of exceptional leadership that is exemplified through all the elements of exceptional patient-centred care.

What does exceptional patient-centred care feel like?

It’s the nurse who understands that their unwell patient trusts them to assist with washing and other personal care, whilst also encouraging that patient to talk about what really matters to them. These nurses also realise that in this circumstance the patient may be more likely to talk about matters that are very personal and, importantly, can contribute to improving their care. Moments like these provide great opportunities to communicate and to connect. This is transformational leadership.

The clinician who, even on a highly pressured day, still takes the time to build that human connection and trust with you so that they can appropriately update you on medical issues and recommendations. No matter how busy, they still give you the space you need to ask questions, to explain things clearly and to find out your concerns. This leads to good shared decision-making. This is transformational leadership.

The catering professional wheeling in that wonderful diversion of the food trolley (or the chance of a fresh cup of tea or coffee) who has a smile on their face, and quickly gets to know new patients by name together with their likes, dislikes and allergies. They know that they are bringing in light relief during the day from all that discussion and focus on illness. I have witnessed many doing their utmost to provide food or drink that tempts an unwell and downhearted patient to eat, not being the least bit judgemental, simply really kind. This is transformational leadership.

All the health professionals who contribute to a patient’s daily ward experience can help the patient adjust, find new ways of doing things, and to move forward personally and medically.

That is transformational leadership. That is exceptional patient-centred care.

From targets to transformation

The NHS is very focused on monitoring and meeting performance targets such as waiting times, resources, treatment schedules etc. In fact, a recent Bevan Commission report counted no less than 370 measures and outcomes operating within NHS Wales.

Complexity of the system aside, transactional leadership is an essential component to ensure the NHS is keeping patients safe.

However, being a patient is an experience. I believe that in the ongoing transformation of NHS Wales it is essential to focus on that “patient experience”, enhancing it whilst also delivering improved health outcomes in innovative, creative and sustainable ways.

I genuinely believe that we need to build on the target-focused leadership style that manages risk and performance by complementing it with other transformational leadership styles such as: influencing and engaging, inspiring and motivating, supporting creativity and innovation, and treating every patient as an individual.

That I believe is the huge and significant challenge for us in Wales, and our NHS counterparts across the UK. Truly delivering consistent patient-centred care in the context of well-managed resources and the achievement of clinical targets, in new ways and in a sustainable manner. What an aspiration!

Barbara Chidgey is a Bevan Advocate, patient, Executive Chair of the Leading Wales Awards, a professional doctorate student at Cardiff Metropolitan University and a former secondary school head teacher.

The views contained within this blog are those of the author and do not necessarily represent the views of the Bevan Commission.

We hear from patient and Bevan Advocate, Barbara Chidgey, on what ‘patient-centred care’ means to her as an inadvertent ‘mystery shopper’ at University Hospital of Wales with a range of complex needs.

Whatever our professional roles are in life, we are all united by the fact that every one of us have been or will be patients at one time or another – irrespective of whether we also work within the NHS or one of the related services.

Being a patient is what we all have in common. Therefore, we all have a role to play in ensuring patient-centred care is being delivered by the NHS and works for every single one of us. I want to reflect on what patient-centred care means to me.

Caring for the patient – and person

First and foremost, being a patient is an experience, one which we experience not just physiologically but also emotionally. In fairness, it is often one we would much rather forgo but one over which we (mostly) have little choice. Therefore, to me, patient-centred care means that the health and care professionals with whom I engage as a patient really do demonstrate that they care about me as a patient and a person.

Carl Rogers, the psychotherapist, shifted his perspective on patient or client care during the course of his career. He moved from focusing on how he could treat, cure or change a client, to focusing on how he could build a relationship within which the patient could learn and develop.

He was convinced that it was within such a co-created, trusted relationship that change and personal development happens. This relationship is led by the patient, with very clear core conditions of authenticity, unconditional positive regard and empathetic understanding. Those three conditions are the foundations of patient-centred care: ensuring the care is focused on my needs as a patient and not the needs of the service or about managing risk.

I have inadvertently gained a lot of experience of being a patient. Over 2016 I became something of a ‘mystery shopper’ in the NHS with complex health and care needs across a range of specialisms.

So, I write the following with huge appreciation of all the expertise, care and kindness from which I have benefited and continue to benefit.

What does exceptional patient-centred care look and feel like?

I have been fortunate to have experienced some examples of outstanding patient-centred care that have been instrumental in me surviving life-threatening crises. Such care has also, most importantly, helped in enabling me to manage my health a great deal better. I am therefore less reliant on NHS resources.

These experiences have enabled me to describe what exceptional patient-centred care is like i.e. feeling genuinely cared for, together with being expertly treated. These professionals provide not only their medical expertise but also a quality patient experience, even when some of the medical information is not all “good news”.

The health professionals who demonstrate exceptional patient-centred care:

• Are fully present, with their attention and energy focused on me and what I am saying for the duration of our short appointment, consultation or ward-based discussion.
• Have read through my background notes, looked up any recent test results and ensured they have tried to understand enough of my medical context and conditions before we have our conversation.
• Really look at me, not just at their PC or tablet.
• Really listen to me. Give me the space to explain what I want to say, even if I am saying it a bit badly (because I am a bit distressed maybe). Gently prompt me to help me articulate clearly what I need to say.
• Demonstrate genuine empathy with me and my scenario.
• Engage in a dialogue with me about the way forward, explaining possibilities that we can choose to pursue together.
• Is directive, if appropriate – because sometimes as a patient I just need to hear: “This is what I recommend ….”
• Puts my needs as a patient at the heart of our conversation
• Together with me, co-creates our trusted professional relationship, which offers me a safe place when feeling so vulnerable. I can communicate with them, if needed, between appointments.
• Treats me as a unique individual, not just a set of medical conditions.

As Maya Angelou said, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” This wonderful quote articulates what patient-centred care feels like.

NHS Wales has a number of laudable patient-centred initiatives, including ‘The Listening Organisation’ and an organisation-wide commitment to patient-centred care.

May I suggest that a patient-reported outcome measurement (PROM) about what patient-centred care feels like for a patient? This could help NHS Wales professionals understand if they are actually delivering on this promise.

Barbara Chidgey is a Bevan Advocate, patient, Executive Chair of the Leading Wales Awards and a former secondary school head teacher.

The views contained within this blog are those of the author and do not necessarily represent the views of the Bevan Commission.