All posts by davidngilbert

About davidngilbert

Musings on the future of health, healthcare and role of patients. Towards patient-led and truly patient-centered services. By David Gilbert, Director of InHealth Associates Also follow me on Twitter @Future_Patient and @DavidGIlbert43

FAQu – some answers that patient partners can use when they get asked the same old questions

Better than FUQu

Yesterday, I was at (another) meeting. I had been asked to talk about ‘patient partners’. Well-meaning healthcare professionals listened to what I had to say. And then came the questions. If you are a patient leader, patient partner, or whatever you’d like to call yourself, know what they are, right?

After thirty years of advocating for people who use services to be fully fledged partners in decision making, they are the same questions time after time.

Then I thought. I’ve written about all of these. Maybe it would be useful to do a sort of ‘FAQ’ response. It saves me from doing a sort of ‘FUQu’ response born of weariness… See, I’m learning to be kind :-)

If these are useful, please go ahead and lean on them when next you’re asked…

So, who do you or these patients represent’? This is a blog on the myth of the ‘lay representative’ and why we should banish the word forever.

All patients are individual, and their needs personal’. This is another subtle challenge to the ability of any person with a health condition to be at the macro-policy level. However, if patient partners know broadly what matters, then they can use personal insight coupled with a wider understanding of what matters to all, to catalyse conversations. This may help:

‘What difference do patient partners make’? This is a blog that argues for a different sort of framework to assess the impact of patient partners – it is focused on patient partnerships in improvement work, but could be useful more widely and act as an evaluation framework:

We are all patients’. This is not a question, but a challenge. This is the most trotted out line by health professionals who, by saying it, are implicitly undermining the need for any patient partners at the table. We are all patients? Well, yes…. And no.

What does a Patient Director do?’ This is a more recent question of course. And I am now beginning to be able to address it. Here’s a blog that tries:

Why do we need to change how we engage with patients?’ The failure of traditional engagement is the underlying rationale for much of what I do and is informed by many years of seeing that the current approach ain’t working.

Why do we need patient partners now? Here are some blogs that discuss why patient partners are needed and why only by creating true patient partnerships can often intractable solutions be found:

This one is about why STPs (sustainable transformation plans) require it:

This one is about the overall culture of fear. And how patients can help

And finally…

Here’s one for all my fellow patient leaders who are tired of answering questions like these and in acknowledgement of the emotional labour. Thank you:

If you borrow from these ideas, it would be nice if you can acknowledge where they came from. Thank you and good luck.


There are many more blogs at – some on patient partnerships, some on mental health and some on poetry.

(c) 2017 David Gilbert



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

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?


If you liked this blog, please do read others at

© 2017 David Gilbert



What Matters Matters – How my psychiatrist got it right (after so many got it wrong)

Asking ‘What matters to you?’ rather than ‘what’s the matter?’ has become a clever bit of reframing within the health service, intended as a phrase to re-imagine the relationship between healthcare provider and those who use services. And to get us to focus on the real needs and wishes of those with health conditions.

But be careful. Context is all. And the devil is in the detail of how it is asked, who asks it, with what intent and whether there is the capacity to do something about it.

June 1986: Geneva, prior to the World Health Assembly. I was 24, excited and working with a network of professional and patient organisations lobbying for better pharmaceutical use internationally. With my good friend, the late great, Andy Chetley, we had written ‘Problem Drugs’ an activist’s guide to better use of medicines in developing countries. My life was on the up. I was hob-nobbing with delightful Latin Americans, Africans and Asians to help save people from the evil big pharma empire. I knew what mattered to me (having fun) and to the world – cocky, is another word for it.

June 1990: Barnet Psychiatric Unit. Four years into my nightmare psychiatric experiences, after a breakdown in 1987. I was on 24/7 suicide watch, and had consumed many of the medicines I had warned others about. A doctor came into the ward and tugged at the curtain rail. His behaviour was odder than mine. ‘What are you doing? He replied ‘Just checking what matters, that you can’t do anything stupid’.

Removing ligature points as a measure of reducing psychiatric in-patient suicides was ‘hitting targets and missing the point’. Three friends went on to die in different and unmeasured ways. He knew what mattered to me (or so he thought) and for the health service.

I still wonder whether my friends would be alive if he had asked ‘so, what matters to you?’ and me and my three friends could have told him about the unsafe ward environment. Instead they locked the doors at night and made it feel even more like a pressure cooker.

June 1991: Barnet Psychiatric Unit (again). A junior doctor yielded at last to my request for ‘counselling’ and opened a door onto an old linen cupboard. We sat down across ten feet of space. Between my jabber and blabbering, he asked me what mattered most ‘Thanatos or Eros?’. I had no idea what he was talking about. He said, ‘it will be interesting which you will choose: Death or Love’. I later saw him in the canteen reading his ‘Beginners Guide to Psychoanalysis’.

That night, once again, I lay my frenzied head on a nylon pillow ‘property of Napsbury Hospital’ (the old Victorian asylum that surely I was headed for, and where I would languish and die). I thought about what mattered – not much, especially after that appalling encounter.

June 1992: Barnet Psychiatric Unit (still). Somewhere in my physiology I was getting better. I wasn’t feeling better, but I was doing more. Dangerous. I had some energy to walk a few hundred yards further, read one more page in a book, watch TV for a few more minutes before my mind and body crumbled. Dangerous because I projected into a limitless future – If I will be able to do more, yet still feel like hell, what’s the point. I might as well die.

June 1993: Yup, still there. And there was Dr Ikkos. Consultant psychiatrist. “I hear you used to do work in the field of pharmaceutical policy and were a community development activist in developing countries. I see you are a good writer, and used to teach doctors about the side-effects of drugs”. He was talking to the ghost of me. “What matters to you David?”. We listened into the wind, and the sound of cars coming and going in the car park. “I liked that work…” I heard the ghost whisper. “Maybe you can help me” he said. He got what mattered.

September 1993: I walked into Napsbury Hospital with Dr Ikkos to deliver a talk to his medical students on pharmaceutical policy and the benefits and risks of psychotropic medicines (the evidence and my experience). I walked into my place of imagined death.

I got up in front of an audience of future doctors and they listened to what mattered to me – to how the medicines I had taken had ballooned me in size so that I was even more bereft of confidence; to how the environment on the ward was making me feel more unsafe; to how I had lost my identity because I was unable to do what mattered most – write and campaign on health issues.

Sometimes ‘care and treatment’ is about a professional thinking more about life and less about what the ‘service’ can offer. I walked into that vast Victorian asylum as a patient and walked out a professional and a human. Because one doctor had dared to ask ‘what matters’ and, more importantly had listened. And, even more importantly had done something about it.

He had prescribed a treatment that had taken me beyond the citadel walls. And had freed me. Thank you, Dr Ikkos. What you did… mattered.

If you liked this blog, try others at


© 2017 David Gilbert



Excluded From Power – a Guest Post by Renza Scibilia

This post was originally published at

I loved this post so much, I decided to re-post it here. You can see why. It followed from a frustrating Twitter dialogue that I was having. Renza has said everything I tried to say…. much better. You can also find Renza (or ‘Diabetogenic’ as she likes to be known, at Twitter on @RenzaS)

Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.

I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:

Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.

I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.

I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.

I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.

Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.

Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.

But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.

It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.

If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.

Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.

For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?

If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?

And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.

In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.



Happy Birthday Me – Musings of a Two Year Old Patient Director

I know there are a few other things going on in the world right now.

But have a break… This blog is to share learning with everyone out there. I hope it helps your endeavours to do patient-centred work better.

It is not the most entertaining blog I have written, but it tries to be practical and illustrate some of the pieces of the jigsaw.

I hope also that it persuades you that a Patient Director is crucial to bringing patient-centred work to life – and that a pool of patient partners is also the way to go.

Happy Birthday Me

It’s two years almost to the day since I came into post as Patient Director – a bold experiment on the part of Sussex MSK Partnership.

My job is to ensure that what we do is done ‘with’ patients as partners and that it focuses on what matters to people who use our service. We do this by:
• Gathering and using high quality data to improve what we do – this is sometimes called ‘patient experience’ work
• Working with patients and carers as partners – in co-designing improvement and being part of decision-making
• Making sure this work is part of everyday practice – this is about having the right culture, processes and systems that hard-wire patient and public work.

Key Features of the job are:
• Being at executive level means an ability to join up disparate ‘patient-centred’ activities and to give them a bit of oomph.
• Having had life-changing and long term mental health issues means that I can bring a human element (e.g. vulnerability) into the work and model ‘collaborative leadership’ in order to mirror shared decision-making at senior level – practice what I preach and try to get others to do the same is a less NHS-ease way of saying it!
• I do not represent anyone but try to broker conversations between patients and staff that help both sides and improve what we do and how we do it.

Two years and two nervous breakdowns later, I can see how far we have come. We have focused on getting the foundations right rather than indulging in showy engagement activities that may include people but where information gathered often goes nowhere.

Patients’ experiences work

With our patient experience survey over a year old, we now have useful regular data on what people think about our service. As well as doing the usual corporate reports, we are now providing each of our condition-specific teams with quantitative and qualitative data as to how they are doing.

I will be meeting the clinical leads next month to find out what they are doing with the data and find ways to help them improve based on the data – I also want each multi-disciplinary team (MDT) to have two patient partners on it so we do not look at data only through professional eyes. We are also regularly monitoring the survey comments for actionable issues. We have done great work to improve letters we send to patients and information on the website and other small but significant pieces of work.

Our work on patients experiences has led to us focusing one of our CQUIN improvement projects on ‘supporting our administrative staff’ (call handlers and receptionists) to get even better to what they do. We are bolstering our survey with questions on reception areas and receptionists.

We have also conducted discussions with over 50 members of staff about what we could improve and have been doing some observation work in waiting rooms. All this data will be taken forward to our Patient and Carer Forum next month and we will make the improvements necessary alongside patent partners who are on the project team.

Patients as Partners

We have eight patient and carer partners whose role is not to ‘represent’ but to be partners in improvement and governance work. So far, they have been involved in six substantial projects (on our admin systems, pain services redesign, shared decision making, patient-centred outcomes, fibromyalgia services redesign, developing a welcome pack for partners). They have also advised on various ad-hoc issues, such as improvements to letters and patient information. Their impact has been evaluated as positive – leading to changed relationships and practice, for example.

Our first away day a month or so ago led us to develop together a welcome pack that includes role and person specification, confidentiality agreements and information about the service. We will hold another planning day to develop wider recruitment and training needs. We are working with the Patient Director in the East Partnership to develop more of a joint approach and were shortlisted in the KSS Leadership Awards recently.

The next steps will be to
– Get patient partners into more governance roles, such as MDTs
– Make sure we have access to a wider pool of people who want to be involved (but who may not want to be fully fledged partners)
– Link better to community groups and the wonderful local work of the voluntary sector (I am working closely with our self-management lead, Chloe Stewart).

Patient partners are one element of our patient and public engagement work. The best bit is that clinicians and staff are clamouring for more engagement and more involvement of patient partners. We can’t yet keep up with demand!

There is no shortage of willing folk but we need to route people in better – not easy when I don’t have a formal team, but have to rely on informal influence and relationships.

Meanwhile, unsurprisingly, the patient partners want to go off the beaten track and be involved in stuff that suits their passions and skills rather than be slotted into institutional opportunities. One has started blogging, one led development of the welcome pack, one wants to do more on developing relationships with clinicians, etc.

Hard Wiring 

We are developing processes to support staff to work with patient partners, do involvement work and gather patient experience data. This will include sections in the new staff handbook, induction sessions and ongoing training events. We run a ‘what matters’ informal lunchtime learning session where admin staff get together and review what they have learned recently about patients’ experiences and what we can do to improve.

I am planning to share reflections on my mental health experiences to help raise awareness and tackle stigma in the workplace. This is part of wider work on staff and patient story-telling. Two patient partners led a session with me at our recent staff conference, one of those patient partners is part of our ‘culture club’ that focuses on our culture and values

Perhaps most importantly, we value our patient partners by offering them the NHSE recommended honorarium of 150 pounds per day for involvement in improvement or governance work. One of the keys to embedding this reimbursement policy is to have other project managers commit to matching my central pot of money, so they do not come to me ‘cap in hand’ but build engagement resources into early project planning.


The above does not do justice to the fun we’ve had and all the useful stuff we have done. Or the tears. I’m sure I have forgotten something.

After two years of the PD role, we can look back with some pride as to how far we have come and the main highlights seem to me:
– My relationships with staff and patient partners – The main reason I came back twice from illness was the love and care I felt from people in the organisation and the trusted relationships we have built
– I am pleased that there seems to be a real hunger for the work, and that it seems to be based on a mindset that sees patients as ‘helping’ rather than engagement as a tick-box affair. This ‘positioning’ of patient-focused work is crucial.
– I am glad that we focused on the internal hard stuff – wiring the systems, processes and culture – so as to create the fertile soil for engagement and experience work. That was a gamble that has paid off – I have always been suspicious of creating engagement activities that look good but go nowhere.
– We need to further embed the work and there is a long way to go. But that will be another story…

Get in touch if you want to know more.

If you liked this blog,


© David Gilbert 2017

Three Poems For London

I can’t do much from this far away. I am a born and bred Londoner in Poland on a writing retreat. I can’t do much at all really. But I hope these words help a little.

One note of explanation, a Pantoum is, originally, a Malaysian form that repeats lines in certain formal patterns. The second line of the first stanza becomes the first line of the second. The fourth line of the first stanza becomes the third line of the second stanza. So on. The last line needs to repeat the first. You can shift words within the repeated lines to some extent.

London, June 2017

It is time to be silent.
The bodies are still warm.
Let the dogs bark on the hillside.

We do not need yet
to be moving on,
fuel our minutes with applause
or flag defiance.

That much will come,
that much will come.
It is time for our child.
It is time to be silent.

For Them This

My town raggedy coalescence of parts, organ spells, bloody scenes and bone blabber Them one another gone and in forever Bolt from all just this horse slow whatever animal you are you’re in you’re on Am only not who I was forget in amber upside-down dismembered ravelling-un un un rumble-tumbling nervy tight and sick with chance and teeth jabber Others sing tough of mighty frost in breasts None now mine Must please must witness terrible stop Everybody fast out of skin, everybody swims in drown Not for me this my town my city rivery shuddery Listen this listen Bones as wands for them this this

Do We Tell Them? A Pantoum

Do we tell them to keep in from the kerb,
still ride South on the Piccadilly Line,
or, that events, dear child, come round-around,
that we too stepped through fear when small?

Let’s still ride South on the Piccadilly Line,
sing a pop-gun lullaby.
We too stepped through fear when small.
Preach of a never beaten heart!

Sing a pop-gun lullaby:
‘Bad men in your sleep won’t come by day’
Preach of a never beaten heart!
But does the little that kept us then, keep us now?

Bad men in their sleep do come by day,
I will not take my children into town.
The little that kept us then won’t keep us now.
I am not brave. Keep in from the kerb.

© David Gilbert, 2017

© David Gilbert, 2017

It’s About Time – why we need a ‘slow-health movement’

I have a thousand other things to do. As you do. I shouldn’t be doing this. You probably shouldn’t be reading this either. So many other things. This is a waste of…

After thirty odd years (very odd) in healthcare, I have realised that there is only one thing that we all need to ensure the NHS survives, that will help patients and carers to be true partners in health and healthcare, that could aid collaborative working, the building of a wonderful new world where we all work together to change things.

I have read hundreds of articles, books and learned reports on improvement, change, organisational development, transformation and improvement. Slick words, PowerPoint presentations, infographics… I have absorbed thousands of principles, concepts, frameworks, speeches and pontification. And I have added my penny’s worth to the engagement industry. I have forgotten most of it.

I have run Board seminars, training events, conferences, open spaces and fancy interactive workshops. I have worked with people with mental health problems and other life-changing illness, injury or disabilities, with clinicians and admin staff, with leaders up the top of local, national and international organisations. Yes, this sounds like a boast. Maybe it is, but that’s not the point really.

I’ve learned loads. I know it mostly boils down to relationships and being kind. I know also that I’ve never met a deliberately unkind professional or patient. Everyone is doing their best. I know there are one or two nasty people out there – plagiarists and spoilers. But usually there is a reason behind their nastiness that is more about their own stuff. I know. I’ve spoiled things too.

I know that in the middle of most events I run. In the middle of most books I read. In the centre of people’s consciousness at work – at the heart of being a wonderful professional, in the midst of a conversation about better ways to work together to improve…. There is that moment, when somebody says or writes the words, recognises the key to it all, when there are nods in the room, when there is a nervous and slightly hysterical (but usually suppressed) moment of group cohesion. When somebody says…

But we don’t have time”

And then we skate over it. We carry on making plans, we carry on winging it, we write reports based on insufficient data, speed up rather than slow down, go back to the thousands of emails that have been building up, make those phone calls, sort out the crises. And carry on as we did before.

We try to hang on to the words, the leadership frameworks, the ideas that came from the conferences, the intention to do more work together to improve stuff. But just like returning from holiday, the memory of the blue sky fades. The rush takes over.

We don’t really talk about lack of time to do stuff. There is no time to talk about the lack of time. To deliver. To improve. To change. Creativity depends on the pause. Ask any poet. Without quietness, reflection and time ‘to be’, we are (the NHS is) lost.

Unless improvement methodologists, patient and staff partners, change merchants (like me) recognise this and do something about it – I am not sure what – then all the good will in the world will wither away.

I am sure now, after two years working as a Patient Director in the Sussex MSK Partnership, that this is the ONLY barrier to my work. Busy professionals, clinical and admin staff, patient and carer partners, in our organisation and the CCG and more widely don’t have enough time in their busy days to do more than they are doing, let alone take part in my worthy endeavours to add to their responsibilities – their ‘burdens’ – to be even more patient-centred.

That’s one reason I always say my work is predicated on the principle that ‘patients and carers can help’. But most of them now accept that. They have seen our fab patient partners make a difference during redesign work, in governance groups, etc. When there is a tiny slice of time to come together.

We all want to be better. We all know that, together, we could improve things. Yes, we need more money, more ‘capacity’, more ‘capability’. But mostly we need that thing we are perennially short of. More time would bring the other stuff as a consequence.

No more nervous chuckles of recognition. No more passing over the difficult issue.

I am a big fan of the ‘slow food movement’ and believe there is the rising of a ‘slow health movement’. It’s time to take time seriously. As in our lives, we need to slow down. As in my life, I need to take time to avoid another breakdown.

Can the NHS avoid its own nervous breakdown? Can you? Now, back to what I was supposed to be doing. Oh shit. Ten more emails….

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© David Gilbert 20117

Let’s Talk About Death – breaking the taboos that surround suicide

Trigger warning: This article is all about death and suicide. It may not be an easy read.

The first time I thought about suicide was when I was eight. Leeds Utd had just lost to Chelsea in the FA Cup Final and the shame of trying to beat up my big brother’s cocky friend and collapsing in tears was too much. I was in the garden afterwards trying to focus on the beautiful cloud of butterflies landing on the purple buddleia.

And then this quiet voice wafted over me, landed and drilled into my forehead: “Why bother?”.

This question has haunted me ever since. And it probably haunts you. But we are not allowed to ask it.

In 1990, in the thick of my six year long 24/7 obsessive anxiety state, I thought much more about dying than living. It was not a cry for help. It was a wanting to be free of pain. The fantasy of dying was an escape valve – I assume a little like self-harm is for some people, though I wouldn’t know.


The Dabbler

I dabbled with suicide. I took some over-doses. I remember sitting on a bed washing down half a dozen paracetamol with half a bottle of whisky and calculating how much more would do the job. But what scared me more was the double pain – the stomach pump and possible liver damage plus the shame of coming round in A&E with my mother frowning down. What if I did not succeed? Why bother? Oh, irony.

I also remember wandering up and down Union Street in High Barnet for hours burning with anxiety about living and dying and eventually wondering into the path of a white van that had turned into the side street. But it was only doing a max of 20mph. I think the police that came were chortling at my half-hearted attempt. And I had fucked up the nerves of the poor van driver. I had brought one more sorry soul into my sick circle. What a shit I was. This proved it.

And so then there was the shame of thinking I was not even decisive enough to kill myself properly. I was a dabbler who was fortunate to stay alive in hindsight.


The Decisive

Back on the ward, Steve went off and hung himself in his caravan. Larry stole one night to the reservoir and drowned. Decisive. That was the way to do it.

So, there is my first learning about suicide – that there are different types of folk. Even in the mists of pain and suffering, there are different ‘styles’ of suicidal behaviour. Is anyone studying this? Or are we stuck in our simplistic ‘suicide prevention’ models – the ‘let’s talk’ or ‘breaking stigma’ approaches that allow us all to be smug – that raise Twitter awareness – that conflate ‘hits’ on a website with true analytical thinking about what works and what doesn’t?

If we truly understood what’s going on with folk as they near the brink, maybe we could have more subtle approaches, based on involving users in that work. Maybe this sort of work is happening – I’d love to know about it.


The vulnerable time

Lesson two about suicide came later. I was ‘recovering’, with the volume, intensity and frequency of ‘intrusive’ thoughts receding. So much so that my psychiatrist wanted to prescribe pills to prevent me from being too high! He thought I might turn psychotic.

When he realised that this was a positive turn of events, he ‘discharged’ me. I spent a few weeks popping back into the day centre to sit amongst my semi-comatose, drugged up, fearful but lovely compatriots. Then I was ‘discharged’ from that limbo-land. I was in the ‘real’ world that I had spent six years away from.

In that vulnerable state, with fewer lifelines, I was ‘getting better’. I was doing more, but feeling still like shit. This gap between behaviour and feelings – where to ‘act as if’ precedes the nervous system re-wiring – is surely the most potentially risky in terms of suicide. This time I had the energy to do it. I was stronger in some ways, and more vulnerable in others.

I went swimming again (I had been a competitive swimmer in my younger less fat with drugs years). But when I realised I wasn’t ‘enjoying’ it, I thought ‘why bother?’. Those buddleia days returned with a vengeance. I projected into the future. If I can do things but they don’t bring me emotional reinforcement, truly why bother? What is the point of life? What nobody told me – what all the myriad psychiatrists (and later psychologists and self-help authors) never did – was that feelings follow behaviours. That the ‘act of will’ (read more about ‘psychosynthesis’ please) can help re-wire sensation, emotion, feeling.

But I didn’t know that, and was both recovering and feeling worse at the same time. I wonder whether anyone is seriously looking at this. In the widening gap between the NHS and seriously under-funded social care, my guess is that suicide figures for this segment of the population may be increasing – anyone know whether this is true. Are the stats there? Anyone looking?



My third lesson about suicide is how it feels when a loved one or friend does the deed. Many people reading this will know of Rosamund Snow’s calculated insulin overdose. She was probably in the Steve and Larry category. And in that respect I almost admire her deliberate act (careful David – taboo thought, you’re not allowed to say that. What the hell. I’m too old to pretend). But I also hate her for what she did, how she deprived us all of her talents. And I also hate myself for not being able to help.

It is this swirl of ambivalent and confusing feelings that is also not allowed of people close to those who decide to die. I hear people telling others who have been bereaved to ‘stay strong’. WTF? How? The need for strong support for the bereaved is my third lesson in coming to terms with suicide. And for those who have tried to kill themselves, to witness someone else doing it leads inevitably to comparison, to guilt of all sorts and the questions about ‘could I do it’? The answer is obvious to me now: Don’t. Just don’t. Trust me: Don’t. But boy the mind can weave some wearying diabolical pathways before you come up with that conclusion.


Four Lessons

So here it is, if anyone feels like taking the ‘mental health awareness’ message seriously and putting money where mouths are….

Lesson One: Recognise the different ‘styles’ (I can’t think of a better word, sorry) of those who want to die. Let’s learn to approach support in nuanced ways.

Lesson Two: Acknowledge the danger of the ‘recovery’ period. We need people not to fall into the gaps.

Lesson Three: Don’t tell people who have lost folk to suicide to ‘stay strong’. Go find them and give them space to share their feelings and words. Support them for more than a week or two.

Lesson Four is the one that has been slowly taking root since Dave fucking Webb scored a late Wembley winner that I still think was a foul. And my buddleia experience. That it is OK. Repeat: OK to think about ending it all. That is part of our life experience. We cannot control our thoughts, merely be mindful of them. Stop listening to the shiny shiny positivist ‘let’s be happy’ brigade. It’s OK to think about death, to think about life being futile, to recognise existential doubt.

And when it gets to a bad patch when these thoughts become heavier in volume, frequency and intensity, it’s OK. Repeat it’s OK. This too shall pass – slowly, painfully, slowly, painfully. But they can and they will.

I am glad I did not kill myself. But I think of death a lot. As my lovely uncle Robin once said: ‘what else is there to think about. Cucumber sandwiches’? If we don’t consider death, life is not worthwhile. Think about that. Those who don’t think about it, may well find themselves more prone to the kickback later of emotional suppression.

Good luck. Be gentle, wherever you are and whatever your tricky mind is doing. And: Don’t.

© David Gilbert 2017

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For My Tired Friends – don’t give up!

My friends seem tired. Those ‘patient leaders’ – people with life changing illness, injury or disability – continue the slog with the rock up the hill. Those ‘patient and public engagement’ champions, ditto – professionals who continue to make the space for others to have difficult conversations and to influence resistant NHS cultures.

My friends, Simon Denegri and Jess Cunnett, two of the kindest, most experienced, wise and passionate ‘PPI’ professionals have both recently blogged their frustrations. The former about being deemed ‘too professional’ to be a ‘patient advocate’ and the latter appealing to a rekindling of a mindset that values people and simple conversations as the basis for PPI. This latter blog seems critical of the ‘engagement industry’ that can be self-serving and sometimes over-complicates things.

Meanwhile, I have heard about an interesting conference taking place about ‘mis-selling of PPI’ and the possible lack of evidence of impact. I laughed at first at the cleverness of the title and then felt undermined. I know it’s a joke. I know it’s well meant. I know we need evidence.

But it felt to me like another ‘why have I bothered’ moment. I imagined people in a room somewhere dissing what I have done for 30 years. Paranoid? Moi?

At the same time, I know of patient leaders who have been triggered back into illness because of the sacrifices they have made for this outsider cause, this unpaid, undervalued, under-invested in, impoverished terrain of work. I have written about the ‘emotional labour’ of being a patient leader elsewhere. Now is not the time though to brood…

Could these pent up frustrations, these sighs, these outbursts, be signifying a deeper shift in the patient movement landscape? And signal a need to double our efforts? While some of us see immense frustrations in breaching the walls of the citadels, maybe something else is happening too. Maybe this is what they call a ‘tipping point’. An over-used phrase – sorry.

Two weeks ago, 11 patient leaders in our Sussex MSK Partnership came together for a planning day to develop our fragile but emerging network – our merry band. Two have gone away (and come in to the office) to write role descriptions and welcome packs and to help plan the next phase of recruitment. We are developing information governance and confidentiality processes. I am writing guidance for staff on how to work with patient partners – two patient partners will be presenting at our staff conference the week after next on what it feels like to be partners. As one of them said, a long time ‘involved patient’: ‘ It feels like we are doing something special and different to what we were doing before’.

Meanwhile, at national level, about thirty amazing patient partners are helping to co-design a national patient and carer partners network – slowly, carefully, gently and trying to practice what we preach about how we work together along the way. Watch this space.

And last week, there was an amazing workshop with patient partners and health professionals at the BMJ-IHI safety and quality conference on ‘patient partnerships’, that I co-facilitated with the fab Carolyn Canfield, Alies Maybee and Jonathon Tomlinson. The freshness of conversations to me indicated a real hunger for an international network of patient partners. And Carolyn, Alies and their fellow pioneers are leading the way with a ‘Patient Advisers Network’ in Canada.

So, perhaps it’s not all doom and gloom. Perhaps the frustration is a sign that we are getting somewhere, that a new line of resistance is being drawn up – by well-meaning academics who demand evidence which may be useful, but could also stifle progress through an over-reductive approach; by intransigent activists who are not yet in partnership mode, by the unconscious blindness of people in the system who fail to see our value and continue putting up the barriers (we can’t pay you; we can’t invest in training; we just want feedback fodder). Maybe we are just more visible. Can we reframe our frustrations and signs of impact?

Maybe we are at the next stage of the struggle. I am tired too, I have to say. If someone were to pay me to write poetry for the rest of my life (fat chance) I would take it. But now is not the time to stop.

Yesterday was the clincher. I was at a leadership meeting of our organisation. We talked about difficult stuff – about the challenges of shifting the system and holding onto the vision of what we want to do with, and for people who we serve. I was bowled over by the passion, wisdom and insight of those around the table – people that I would have labelled a few years as ‘faceless bureaucrats’. To hear them talk about why they were in this game gave me fresh hope. I thought – I am glad I have fought back from two breakdowns this year to do this work. I don’t care what I’m called – a patient leader, a mental health service user, a PPI professional, a manager, an advocate… Whatever.

So, here we are. A NHS crisis. A world gone slightly mad. And the emergence of something fresh. It is spring after all. Vive la patient revolution. Excuse my French (grammar).


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(C) David Gilbert, 2017


Let’s (Not) Talk About Depression

A few weeks ago, a friend said: “I love your openness about your mental health problems. But remember some of us are not in your position, some of us do not want to talk. And if I do, I am worried I may lose my job. I think the Let’s Talk campaign is wrong”.

It got me thinking.

Many years ago, I criticised the ‘defeat depression’ campaign, that tried to reduce stigma, owing to its heavy reliance on promotional materials that accentuated drug treatment as first-line therapy. Heavily endorsed and, in some cases sponsored, by big-pharma, it led, in my opinion to biased information materials that emphasised medicalised approaches.

I have more recently gently challenged the ‘zero tolerance of suicide’ campaign. I argued it risked being taken forward in a reductive manner. In a target-driven NHS at a time of competing priorities and confusing decision making, I worried that implementation would mean a loss of its intended holistic focus – concentration on preventing suicide would distract attention from upstream prevention. People would end up ticking boxes related to removing ligature points on wards, for example. I related this to my own experiences on the ward.

Now I have qualms about the ‘Let’s Talk’ campaign on depression.

Let me make myself clear: ‘Let’s Talk’ is a great campaign. It’s got a resonant title, it has no doubt been thought up by wise minds with real involvement of service users. It has been endorsed by celebrities and charities that I respect and admire. And, on the surface, surely it is a good thing – we do need, as a society, (desperately) to talk about the pain and stigma of mental health problems.

However, it is not that simple.

Some people are ‘introverts’. If you have not read Susan Cain’s marvellous book ‘Quiet’, please do. She writes persuasively about how we have shifted as a society, in our work, life and play to one that rewards and values ‘extroversion’ and the ability to be outgoing, demonstrative, collaborative and upbeat. We do not value those who ‘don’t talk’.

Meanwhile, it is intriguing that many of those who have ‘come out’ with mental health problems are those who have least to lose. This is no indictment of their courage. However, it is difficult to think that Stephen Fry, Ruby Wax or Prince Harry are about to lose their status or cred as a result of their bravery. Perhaps the reverse.

I am a Patient Director. My professional status has always been tied to my openness about my mental health problems. Yes, it has been tricky for me to re-negotiate my entry back into working life after having more breakdowns. Yes, it has taken an element of courage to talk about it. But what if I was not established in my career? Would I risk it?

Early on, I lied about my CV to get a job at the Consumer’s Association. I said I had been ‘freelance’ (which is quite funny really… I was seriously ‘freelance’ mentally). Many continue to have to fabricate their history, particularly when climbing a career ladder.

Add to this, that if you have depression, the last thing you want to do is talk. It is indeed ironic that the very trait that is so integral to the state of depression is the one that the ‘sufferer’ needs to stretch themselves to doing – and what if you can’t? What if you are surrounded again by societal messages – in your community, on telly, at the day centre, on the ward, when you go to your GP – that you have to talk. I would be well pissed off. It would make me more depressed.

And remember, for many who have had terrible depression and anxiety (like me), we have been told by mums and dads for years and years to ‘stop thinking so much’. Our inward facing minds, feelings and hearts, our sensitivity and fragility are characteristics that have often been left unsupported by a harsh society. The societal focus on ‘let’s talk, have fun, go to parties’ may have led to our depression in the first place! A campaign to tell us to talk more openly may risk exacerbating our feelings of shame – and shame is a huge issue for us.

And if well-meaning friends and loved ones pick up the ‘let’s talk’ message and interpret that narrowly, then I can well imagine dinner tables where family feuds pick up all over again: “Well, David, the doctors say you have to talk… Come on, son”. “Fuck off, dad”.

I know that is not the ‘intention’ behind the campaign. I know that there is a deep and holistic message underneath. I know that it could help support society to become more accommodating to those of us who have suffered – that a campaign like this can create more space – that it is about safety to talk. But I fear, for some people (not all, I hasten to add) that it can have the reverse effect.

I wonder whether the ‘Let’s Talk’ message will make people and parts of society – in particular those people who are well-meaning, but ignorant of what it means to have mental health problems – feel better about themselves. Perhaps, dare I say it, smug?

I once attended a spiritual community for a week. After one intoxicating workshop, a hundred of us held hands and circled round the room dancing. As the dance circle grew, we surrounded a couple who were having a quiet conversation. We smiled and cajoled, then urged (and in retrospect, bullied) them to join our circle. They were shamed into the ‘Let’s Dance’ campaign.

Let me repeat – I am not against the ‘Let’s Talk’ campaign. But I do have a hunch – borne of my own experiences – that, for some, it may have the reverse effect. It may secure some in their continued silence – through guilt, through shame, through fear.

And, when I meet my friend again, I am going to sit with him in silence and see what happens.

Let’s think.

If you liked this blog, or even if you didn’t, you might be interested in other at – about mental health, patient and public engagement, patient leadership, and a bit of poetry…
© David Gilbert


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