The Road From Nowhere – How Patient And Carer Partners Are Changing Healthcare

by David Gilbert

July 29, 2017

The Third Wave

We are entering the third wave of patient power in healthcare politics. A rights-based user and civic movement focused on accountability in the 70s and 80s gave way to a more institutionalised form of patient engagement. This has focused on ‘feedback’ and ‘representation’ that aimed to improve quality. But it has mostly hit the buffers as people realise it is still predicated on ‘child-parent’ relationships and preserves decision-making power in the hands of the professional elite.

Now, the emergence of ‘patient and community leadership’ is all about what we bring - our assets – as people individually and collectively. This has given rise to myriad forms of engagement – ‘patient entrepreneurs’ inventing apps and developing innovative kit, digital whizz kids utilising online fora to harness collective voices, community and health champions bringing in the marginalised, peer support workers delivering a different sort of care and patients/carers influencing healthcare design, research, education and training.

In my world of health care commissioning and provision, the old rules of engagement are breaking down. People affected by life changing illness, injury or disability or living with long term conditions want to be trusted equal partners in their own care, and perhaps more significantly in co-designing and co-delivering services.

We can help reframe problems, bring our insight to bear so as to develop new solutions, shift policy and practice, change dynamics and model a new form of collaborative leadership. This will help accountability, transparency, quality and safety. But only if we are valued.

Something special going on in Sussex...

The Sussex MSK Partnership has recognised this shifting ground and appointed a Patient Director in each of its regions (Central, covering Brighton and Hove, Mid Sussex and Horsham and Crawley; East covering Eastbourne and the surrounding area).

My role as Patient Director in Central is to help us focus on what matters to the people we serve, and hard wire patient partnerships into improvement and governance work. This includes using data for improvement and effective patient and public engagement.

One way is by developing a growing band of Patient and Carer Partners (PCPs) – eight people so far who I met through recommendations from clinicians. They weren’t recruited via an inclusive and systematic process. I went with the energy. These fab people were ripe for working in partnership and we wanted to get on with it.

They are not representatives – they are collaborative leaders and partners whose role it is to be critical friends and insightful supporters who draw on their wisdom – born of living with pain and suffering, loss of identity, loneliness and vulnerability, resilience and passion alongside their experiences of healthcare and of life and their vision of patient-centred care. Their experience is equal to, and different from system insiders.

What we’ve been up to

So far, they have been working mostly on improvement projects. They have been part of improving administrative processes, how we deliver services for people in pain and how we work in fibromyalgia. PCPs have been involved in corporate work on values, quality summits as we prepare for CQC inspections, staff events (running workshops, and contributing to its overall design) and away days for staff.

Each of our six CQUIN projects over the last two years has been co-designed and co-delivered with PCPs. These are development projects that have focused on shared decision making; pain redesign; developing patient-centred outcomes; integration of physical and mental health services; supporting admin staff; self-referral in physiotherapy.

They are not there to ‘tell their stories’ merely to provide a compassion rush for professionals. They stay in the room for difficult conversations, warts n’all – this takes courage on both ‘sides’ to be open and vulnerable, for staff to ‘hang out their dirty linen in public' – and deep trust.

Partners view care from different angles. One changed our appointment process by challenging how we fixed (inconvenient) appointments that led to floods of cancellations. “You really want to put us in control? Let us call you to make an appointment that suits our life.” So, we did. Our admin staff like it. And we will save about 3,400 cancellations when we roll out the new process.

It ain’t perfect

Things move so fast, partners complain when we haven’t kept them up to date. We have not always had the early conversations to get clear on how much time they have to do stuff. We’ve sometimes failed to pay people on time. Project leaders can need prompting that having a partner is not the only thing they have to do for good engagement. How much is my job, how much the project leader’s, to provide ongoing support? How do we support staff to work with partners?

Being a partner in improvement work is different to governance roles. One person sits on our corporate clinical quality group and is doing a great job. For others it may be a stretch. This is mainly because the audience is different and may be made up of people outside our organisation who we haven’t buttered up yet! We are going more slowly – me and the clinical leads for physiotherapy, spinal and pain MDTs will bring in partners with the right support. The task is partly how to maintain confidence and ask ‘scrutiny’ type questions, so as to bring the conversations back to what matters.

Learning about relationships

Clinicians and PCPs have discussed our learning. One clinician noted power imbalances from the off. “I gave a potted CV as my intro. The partner disclosed so much and made herself vulnerable”. This mirrors most clinical conversations. It is no wonder healthcare engagement can be triggering for someone who has had particular experiences of care.

Vulnerability is common to professionals too: “Maybe patients believe I have power to change the system. I wish!”. To which a PCP replied: “That level of honesty restores my confidence in how I can work with you”. It takes courage, time and trusting relationships to have this sort of dialogue. be vulnerable and human. One thing I have learned is not to rush into developing protocols and systems for engagement. It’s about the human element.

And yet the NHS is all rush. Regulatory and delivery pressures mean real conversations (I don’t mean meetings!) are a rarity. Let alone when, to some staff, it is unclear what value partners bring.

However, as managers, admin staff and clinicians see the benefits of people in the room, they are coming to me and asking for patient partners to work with. An email in my inbox is a request from a clinic centre manager for a partner to shadow the reception team in order to provide insight as to how we can improve the environment, access and contact with patients. This has come off the back of one of the CQUIN projects where ‘keeping people informed of waits’ is a priority for improvement.

My problem now is managing demand! I don’t want to become a PCP ‘pimp’ – “get me someone by Monday, David”. This all needs careful prep. It requires resources too! We offer the NHSE recommended £150/day plus expenses. I am a firm believer in valuing people for their time and expertise. But my budget is limited. I want programme leads to match fund and include engagement as a budget line.

Things are changing

The group is getting to know each other better – we get to be colleagues and friends. And people’s gifts and talents rise to the surface. One sees her ‘frozen assets’ thawing. She wants to do more in her special field of training and education and is leading work on how we capture learning and raise awareness of partners’ skills. Another, with corporate PA background has written a welcome pack that has helped us with a common understanding of roles. This will be crucial for the next round of recruitment. Insights from the caves of suffering is being combined with professional talent and life skills – the person within the patient emerges.

Some have wanted to move on. This work may suit them for a while. Or they may get ill again. This work can be tough on many levels. We have to look after each other. The group want to meet monthly to consolidate and re-energise. Our passion and idealism can lead to great things, but we are human and frail. It can be flattering to be valued again. But we need to value ourselves too – rest rest rest.

Yes, we need to recruit others. But we only know about the role because we have spent time getting there. We also need to do more to widen the base for one-off involvement (focus groups, events, workshops, etc). We have 200 people who say they want to be involved in our work. One of the PCPs is going to oversee the process by which we do that.

The group has grown feistier (though they were always feisty. That was one quality I was looking for). No longer will they accept being slotted into institutionally defined opportunities. Yes, they think we should move closer to influential places of power (MDTs, etc) but they want to embark on their own projects and work collectively. We might launch a piece of work on co-ordinated care. My job then is to make sure that is linked to decision making.

The wonderful Mark Canon, who works within HERE ( will help us explore how systems thinking can aid our planning. One exciting possibility is that partners could become mentors and catalysts for systems thinking and collaborative leadership. The group is changing its spots.

My role then changes too. Instead of whipping up enthusiasm internally and getting professionals to come up with things that PCPs can do, it’s becoming the other way round – bringing innovative ideas into the organisation. I need soon to get out of the way as better relationships between people flower. And you know that letting go is one of the things I’m good at, don’t you? Not. So, I am learning all about my controlling foibles.

The Patient Director journey

Our journey as a PCP gang has mirrored my getting to where I am as Patient Director. This was was the first role of its kind, and it's no secret I have struggled (two breakdowns after not having been ill for 18 years). I was an outsider and had never been a director.

Within a frenzied NHS culture, holding the space and time for this work is the most important, but most challenging part of my job. But I believe we are only where we are because we have taken it slowly, and spent time building trust. We are pragmatic, idealistic and opportunistic. I go with the energy.

In my wider work, I notice many NHS folk who start this sort of gathering of people by defaulting to bureaucratic procedures – form before function (skills audits, database development, recruitment processes, policy documents). I am reminded of a friend who, when asked for his preferred ‘leadership model’ replied: ‘I get a gang together, we decide what to do, then do it’.

Supporting staff is a huge issue though. We do need to develop guidance (horrible word) for how staff work with patient partners. And develop an induction module for new staff around patient and public engagement more broadly, as well as how to work with patient partners (this needs to be co-designed and co-delivered).

At a leadership level, it is heartening that I am not the only one to challenge assumptions. We were discussing an issue where people were making assumptions about how people should be communicating with patients. I was about to say something, when a colleague chipped in: ‘Why don’t we find out from patients’. I relaxed. My job was done. It’s that sort of mindset we need to further cultivate. But the soil is fertile.

The organisational culture is founded on values such as passion and innovation (see HERE website). But that very fluidity and fast changing culture I sometimes find dizzying. There is a balance between needing solid organisational structures, transformation demands and delivery.

And what of the benefits? Some partners report improvements in their own health and confidence – personal and professional. One clinician said: “recommending a patient to be a partner is the best treatment I’ve ever given”.

Staff value the impact of partners and practices and policies (slowly) change – new appointment letters, new questions on surveys, more widespread patient outcome measures, shifts in models for pain services and education programmes, patients on recruitment panels, more honest conversations about change, etc.

Meanwhile at national level

And here the tone changes: NHS policy at a national level is still in the dinosaur age. Despite the rhetoric, Simon Stephens seems (IMO as they say!) incapable of building on his five year forward vision that saw communities as leading the way – there has been little engagement in STPs, for example.

Despite my blog ‘what’s stopping you appointing a patient director?’ gaining more than 2,000 reads ( few organisations are interested. Or am I too impatient?

It is frustrating – and reminds me I am ‘just’ a patient after all - when a chief exec of an Eastern England Trust does not reply to a message on twitter asking him why he feels that ‘patient leadership’ is unnecessary (you know who you are).

However, it’s wonderful that a service user/carer leader has been a appointed in Sussex Partnership FT. And to hear that another Patient Director post may be advertised in an acute trust.

We go on banging the drum. But this work is tiring and can be lonely. That’s why we need gangs like mine locally.

That’s why we need a national network for people like us. That’s why a few of us have teamed up with NHS Improvement that has very generously pump-primed the development of the ‘Snow Community’ (named after the inspirational Rosamund Snow) which will take these ideas forward at a national level. It will be about support and belonging, capacity building and promoting partnerships in improvement. Watch this space!

Why do this work?

Someone asked me recently why I do this work. It’s because I remember crying alone on a psychiatric ward while under 24/7 suicide watch clutching an old teddy bear. And it is also because of the kindness shown by staff (admin and clinical) and fellow patients that showed me true partnership is possible. It is the resilience and tenacity I have showed despite myself.

But mainly, it is driven by my admiration (and even love in many cases!) for fellow travellers on the road from nowhere – Alison Cameron, Anya De Iongh, Karen Maskell, Rosamund Snow, Mark Doughty, David Festenstein, Denise Stephens, Ceinwen Giles, Trevor Fernandes, Lynne Craven, Dominic Stenning, Dominic Makuvachuma-Walker, Brenda Murray, Michael Seres and many others. People who are changing healthcare forever.

It is all about knowing that we bring jewels from the caves of suffering.

It is about seeing the slow, strong, steady rise of the third wave of a patient movement – one founded on the wisdom and insights of those affected by health conditions. It is about friends – many of whom I have not met yet - who share the passion and commitment to help improve healthcare. It is about hope. Join us?



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© 2017 David Gilbert



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One comment on “The Road From Nowhere – How Patient And Carer Partners Are Changing Healthcare”

  1. Hi David
    Thanks for this insight. You may remember that we worked together in Sheffield around engagement in the commissioning cycle when you developed the e-cycle. It is so refreshing to hear someone else who tings its ok not to have policies, documents and procedures around engagement. They have always been real blockers for me. I worked with NHSE recently on their new involvement guidance. We mentioned then the need for training for staff and I'd be happy to work with you on this.

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