Rethinking Engagement

The following blog first appeared as ‘Rethinking engagement’ by David Gilbert
BJPsych Bulletin (2019) 43, 4–7, doi:10.1192/bjb.2018.55

© The Author 2018. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http:// creativecommons.org/licenses/by/ 4.0/), which permits unrestricted re- use, distribution, and reproduction in any medium, provided the original work is properly cited.

Summary

People affected by health conditions bring insights and wisdom to transform healthcare – ‘jewels from the caves of suffering’. Yet traditional patient and public engagement relies on (child–parent) feedback or (adolescent–parent) ‘representative’ approaches that fail to value this expertise and buffers patients’ influence. This editorial outlines the emergence of ‘patient leadership’ and work in the Sussex Musculoskeletal Partnership, its patient director (the first such role in the National Health Service) and a group of patient/carer partners, who are becoming equal partners in decision-making helping to reframe problems, generate insight, shift dynamics and change practice within improvement and governance work.
Declaration of interest David Gilbert is Director of InHealth Associates Ltd, a small consultancy organisation that supports patient and public engagement.

‘Some important principles are becoming well established: these are the antiseptic power of transparency, a commitment to both personal and shared responsibility and a renewed engagement with patients and the public.’ Rethinking Regulation. (p. 21)

Calls for patient engagement in mental healthcare seem ubiquitous. There appears to be a consensus that people who use services must now work alongside staff to identify solu- tions to current healthcare challenges. However, if we are serious about this renewed engagement, we need to think carefully.

The task is fourfold. First, we need to learn to value what patients can bring, which I call ‘seeing patients as partners’. Second, we need to change how engagement is done, by rethinking the engagement process. Third, we need to support people’s capabilities to better work together. This includes developing the right skills. Finally, we must develop new opportunities for patients to influence decision- making by creating new roles.

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Valuing what patients bring 

People who have been affected by life-changing illness, injury or disability can help. We bring jewels of wisdom and insight from the caves of suffering– we know intim- ately what it is like to feel vulnerable and powerless, the effect of pain and suffering on lives, the primacy of healing relationships in care and what good and poor services look like. This combination of vision, humanity and integrity are essential components of high-quality leadership.

About 20 years ago, I was sitting on a psychiatric ward with nothing to do – the lunch had been awful, the occupa- tional therapist had been sacked (so no activities that after- noon) and the ward seemed full of screaming folk. A doctor strolled onto our bay and gave a perfunctory nod before gingerly pulling on the curtain rail beside my bed. Even in my disturbed state, I could see his behaviour was odder than mine. I asked him what he was doing. ‘Just checking to see if you could do anything stupid’, he replied, before walking back down the corridor. I was left contemplating the sudden and unintended addition to my range of ‘treatment’ options.

Fast forward 10 years: I was Head of Patients and the Public at the Commission for Health Improvement, the health inspectorate at the time (predecessor of the Healthcare Commission and Care Quality Commission). I was reading the National Patient Safety Agency standards on mental healthcare (though I don’t recall which one, exactly). One of them was to decrease in-patient psychiatric suicides to zero by…. removing all non-collapsible curtain rails.

I remembered that doctor who had checked my curtain rail. At about that time, three fellow in-patient friends of mine died. One had choked to death on her food while unsupervised, after she had left the psychiatric unit and gone to a nursing home (she had earlier been paralysed from the neck down through a failed suicide attempt). One had gone to his caravan and hanged himself. And one had drowned himself in the local reservoir.

All those deaths had occurred away from the in-patient environment, so the unit would have passed its inspection by having removed ligature points. It might also have been congratulated on its risk policies. This was ‘hitting the target and missing the point’. The unit had responded to the caravan and reservoir deaths by locking the doors at 20.00h. This deprived me of my one visitor, a local chaplain who I could only get to see at 21.00h. Nights became a pressure cooker of aggravated emotions – the consequence of this lack of trust and forced containment felt unsafe. I wonder whether dialogue between us in-patients and staff about what makes for a safe environment might have saved my friends.

Later, as part of a Collaboration for Leadership in Applied Health Research and Care Fellowship (North-West London), I undertook qualitative research that revealed seven benefits of high-quality patient engagement in improvement work (https://futurepatientblog.com/2015/03/ 22/seven-things-that-patients-bring-the-benefits-of-patients- as-partners-for-change/).

I found several distinct benefits. Having patients as partners in the room will reframe the problems to be tackled. Focusing on what matters to patients leads to pathway redesign with better awareness of access issues, information and explanations needed at each stage, more humanity and better customer care. Patient engage- ment also promotes the finding of potential solutions to pro- blems. Patients have the passion, insight, imagination and freedom from institutionally limited thinking to ask ‘What if. . .’? They also widen the array of options for improvement and change.

This process necessarily leads to changed relationships. With patients in the room, others are given permission to explore. Dynamics change, trusted relationships develop, people work together and move beyond us–them conversations to dialogue. Shared decision-making emerges. There are also individual benefits. Patients feel more confident, develop new skills and build on those skills buried during times of illness – and come to feel better.

Staff gain too. Morale is lifted as conversations become about what can be done, they can feel that we are truly all in this together. This sort of work rehumanises healthcare. It should be noted that this approach may also help staff who suffer emo- tional distress. In mental health (and perhaps beyond) there has never been a better time for people with health problems to work with staff (clinicians and support staff alike) to change and improve approaches to well-being and to explore our com- mon humanity, rethink professional role boundaries (the ‘them and us’ mentality) and approaches to safety and risk.

The result is better quality decisions. If people know why decisions have been made and been part of that process, this generates trust, confidence and it becomes easier to build consensus. This has deep implications for transparency, governance and accountability. I have seen and heard about dozens of changes in policy and practice as a result of patients being partners in improvement work: making guidelines more flexible, better ways to tackle access and equalities, tackling attitudes and behaviours, different ways of meeting unmet need, the list is endless.

There are even benefits beyond the project. When people see the advantages of patients as partners for improvement and change in one area, they will help spread it to others. It is a virtuous cycle with implications for scaling up improvement pro- cesses, spreading good practice and sustainability.

Changing how Engagement is done

The traditional approaches to involving or engaging patients do not work, and so we fail to value the jewels offered or to change the ‘currency’ of healthcare toward what matters. Patient and public engagement, as traditionally conceived, buffers power by distancing patients from decision-making.

Thus, it maintains the status quo by preserving the institutional authority of professional system leaders. Ironically, when engagement is seen to fail, as it often does, this can be attributed to the lack of value that patients bring rather than to faulty mechanisms. The engagement industry focuses largely on inputs, activities and processes (the methods of gathering data, how to capture views, etc.) over impact and outcomes.

The approaches and methods used rely on two main styles. The first is that of feedback: patients are invited to fill in questionnaires, attend focus groups or tell their stories (if they are lucky) at board meetings or the like. The focus is what happened to them in the past, mostly about their experience of services (rather than living with a condition, or about their lives beyond the institutional scope of interest), and the meaning of their data is left to professionals to assess through their own lenses based on their own assumptions and often narrow institutionalised thinking (often what is seen as feasible rather than necessary).

Patients are not permitted to eyeball the data or bring their own interpretations to it, let alone be partners in deci- sions about what to do. This feedback approach mirrors traditional medical paternalistic models – you tell us the symptoms and we will provide the diagnosis and treatment. It is stuck in child–parent mode.

The second style is scrutiny. Whenever there is a governance committee, an advisory group or the like, the call goes out for a lay representative. I know a patient and public involvement lead who likened her role to that of ‘lay rep pimp’. Without clarity of role, support or training, a representative is expected to bring the patient perspective to the decision-making table.

I was once asked ‘so David, what do patients think?’. What, all of them? I thought. In search of credibility and leaning on what we know, we tell our stories, and half the people in the room applaud this ‘telling truth to power’ and the other half fall asleep (‘another patient with an axe to grind’ or ‘personal agenda’ they mutter later in the corridors). If we wise up and come to the table next time wearing a suit and tie, brandishing data, those that were awake last time fall asleep and accuse us of ‘going native’. I have written about this repre- sentative trap in more detail elsewhere.

The consequence of failed representational mechanisms is that committees lapse into a default ‘us and them’ mode. Frustrated, marginalised and unprepared representatives start finger-wagging or fall silent. This is adolescent–parent style engagement. If we are serious about partnership, then we need to overhaul the engagement industry.

Supporting people’s capabilities – the emergence of Patient Leaders

The past few years have seen the rise of new forms of engagement such as online dialogue, experience-based co- design, health champions, peer support and the like. Mark Doughty and I founded the Centre for Patient Leadership to support patients (those with life-changing illness injury or disability, and/or with long-term conditions) to be influential change agents. CPL trained over 1000 patients to develop the capabilities to work with professionals as equal partners. Further information on patient leadership is available online (http://www.inhealthassociates.co.uk/patient- leadership-articles-and-reports/).

Patient Leaders are those who have been affected by life-changing illness, injury or disability and want to work with others in partnership to influence change. This can, of course, include carers. They can have many roles. Some are entrepreneurs like Michael Seres, a patient who had undergone a bowel transplant and then invented a Bluetooth sensor-enabled colostomy bag that does not overflow. He has also led the way on remote-access technology to allow people to communicate with their clinicians, and is Chief Executive of his own company, Health 11.

Others are campaigners or activists, online dialogue specialists, improvement advisors or help organisations as governors or are part of inspection processes. They work at local, regional and national levels. (I am writing a book entitled ‘The Patient Revolution’, which will be published in September 2019, that is based on the stories of 15 such people, including Alison Cameron, Ceinwen Giles, Dominic Makuvachuma-Walker, Patrick Ojeer and Sibylle Erdmann).

There needs to be wider investment in skills development; indeed, one might question why tens of millions of pounds is spent investing in the capabilities of managerial and clinical leadership, and none on this emerging army of people who could – and I think will – regenerate healthcare. There is still a widespread assumption that system leaders are professionals, but for Patient Leaders to achieve their full potential, they also need the learning and development that enables them to be true leaders.

Finally, there has to be an equal emphasis on creating the right opportunities, for example, in governance, research and audit, service improvement and training and education. This could be at a local or national level, but needs to be where professionals are willing and able to work as partners too. Opportunities must also be created at a senior level. In much the same way that it is not considered appropriate that a service purporting to deliver ‘women-centred care’ is led entirely by men, in a few years’ time it will seem odd that we have ever had a patient-centred National Health Service (NHS) run entirely by clinical and managerial leaders.

New opportunities – the Patient Director and Patient Partners

The Sussex MSK Partnership (Central) made a brave decision to appoint the first patient director – someone who has had experience of a life-changing illness, injury or dis- ability (in my case, mental health problems) and can harness these experiences at senior decision-making levels.

This role ensures that patient leadership is embedded at a senior level, within an executive team that includes a clinical director and managing director. This models shared decision-making at corporate level. The patient director’s role is to help the Partnership focus on what matters. This includes embedding patient-centred cultures, systems and processes such that they become ‘hardwired’ and making sure we learn from, and act on what patients’ think about services. The patient director will also support patients to enable them to be influential and valued partners in decision-making.

Being a patient director has enabled me to experiment with a different approach to engagement. For example, we have eight patient and carer partners. They bring profes- sional and personal wisdom alongside their experiences of using our services. Patient and carer partners are not repre- sentatives or there to provide feedback, but are ‘critical friends’ who check assumptions, ask questions, provide insights into reframing issues or identifying problems, change dynamics and model collaborative leadership.

My role is to broker opportunities in improvement or governance and support them to ensure they have the cap- acity and capability to be effective. Patient and carer part- ners augment other involvement and feedback work. This work has been developed during a period of intense oper- ational pressures. During the past 3 years, the Partnership has transformed the way MSK services are delivered (through a lead accountable provider model – see box) and patient partners have been alongside as we have done so. We wanted them to be partners in every MDT that oversees quality in each of our musculoskeletal pathways (orthopaedics, rheumatology, pain management and physiotherapy).

The first step was for the patient director to identify opportunities for meaningful engagement and ensure their presence in improvement and redesign work. Then, to be clear that they were more than storytellers or to feed back on their experiences (we had other data for that), they stayed in the room, proving themselves well able to reframe problems, generate new solutions, model collaborative leader- ship and shift dynamics. Patient partners have been involved in seven major improvement programmes: pain ser- vices redesign, fibromyalgia pathways, development of patient reported outcome measures, plans for shared decision-making, administrative systems, support for reception- ists and call handlers and integration of physical and mental health provisions.

An early experience helped us to demonstrate benefits. We were discussing how to communicate with patients about booking appointments. We were receiving lots of calls to cancel or change inconvenient appointments that we had booked for people.

A woman who had been through our service, told us that our team phoned at inconvenient times to book appointments. She suggested that, instead, we send opt-in appointment letters and put her in the driving seat. Let her phone back when she had her diary in front of her and she could plan out her week. We experimented with the idea and it was successful, with patients and call handlers alike delighted with how it worked. If this approach were rolled out, we would save an estimated 3500 cancelled appointments per year.

Slowly, they have become trusted equals. It has not been easy and is dependent on clarity of role, shared understand-ing of purpose, demonstrating benefits and the perennial time, money, space, trust. . . all things the NHS has precious little of. We are ready for the next step – for partners to move from an improvement role into a more steady-state governance role.

However, given inevitable resource constraints, we realise that we cannot support two patient partners in each of our eight MDTs. So patient partners have come up with a different approach: the idea of a pilot special MDT. This might model the sort of reflective dialogue they want to demonstrate and focus on issues of quality and patient experience. We would evaluate the work and see whether it could be a model for other pathways. Members of the hip and knee pathway MDT seem keen on the idea, and next month we will be talking to them about how it could work.

We will also discuss whether and how we can ensure that patients are a part of regular MDTs. Several other clinical leads are watching this experiment with interest, and it could pave the way for a different model of reflective govern- ance across the Partnership. It has taken 3 years for this work to take off – the role of patient director is still novel, and this particular model of patient partnership is an experi- ment. It has taken months of building relationships, doing the ground work and making the case for a different model of engagement.

In the current frenzy surrounding NHS policy and practice, it is worthwhile remembering that long-term improvements take time, space and trust. There are no quick fixes. Our work in Sussex demonstrates one novel approach to the challenges of rethinking engagement. It is predicated on the four steps necessary to renew engagement – to value what people bring, establish different mechanisms for dialogue, to develop people’s capabilities and provide new opportunities for the new breed of patient (or carer) leaders. Looking back, I now wonder what might have hap- pened if a patient director had been around when I was on the psychiatric unit. Might my three friends still be alive?

______________________________________________________________________________________

BOX SECTION – About The Sussex Musculoskeletal (MSK) Partnership (Central)

The Sussex Musculoskeletal (MSK) Partnership (Central Sussex) receives referrals from general practitioners of people who have joint, muscle or bone problems. The service stretches from Brighton and Hove, through mid-Sussex and Horsham to Crawley. Clinicians screen referrals, and many are offered an appointment at our specialist clinics, with advanced MSK practitioners or physiotherapists (often working alongside consultants and others, such as psychologists).

The Partnership is a lead accountable provider. It comprises the Sussex NHS Community Trust, Sussex Partnership Trust, HERE (a social enterprise) and The Horder Centre (a charity). In Autumn of 2015, three clinical commissioning groups pooled a total of £50 m per year for 5 years to us, so we could run a better system for people who use services. We want to get it right first time, so that people do not have to go here, there and everywhere for different diagnostic and treatment interventions. And we, like the NHS rhetoric always says, want patients to be at the heart of what we do.

_____________________________________________________________________________________
David Gilbert is Director of InHealth Associates and Patient Director at
Sussex Musculoskeletal Partnership (Central Sussex), UK.

References

1 Professional Standards Authority for Health and Social Care (PSA). Rethinking regulation. PSA, 2015 (https://www.professionalstandards. org.uk/docs/default-source/publications/thought-paper/rethinking- regulation-2015.pdf).

2 Gilbert D. The Jewel Merchants – a parable for healthcare. Future Patient, 27 January 2017 (https://futurepatientblog.com/2017/01/27/the- jewel-merchants-a-parable-for-healthcare/).

3 Gilbert D. Seven Things That Patients Bring: The benefits of patients as partners for change. Future Patient, 22 March 2015 (https://futurepa- tientblog.com/2015/03/22/seven-things-that-patients-bring-the-bene- fits-of-patients-as-partners-for-change/).

4 Gilbert D. The Rep Trap. Future Patient, 5 December 2014 (https:// futurepatientblog.com/2014/12/05/the-rep-trap/).

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Poems From Wales

I wrote the following poems during a Cinnamon Press Workshop last week. I hope you like some of them. They will appear in my forthcoming collection ‘Why I Left The Island’ in Spring 2020.

I have also taken to writing more about my Jewish experiences, and about my uncle Robin. I include one or two experimental pieces that will form part of a prose-poetry project about his time in Yemen in the 1950s.

 

 Longshoes

On Saturdays, when all things must have hurt
I would visit Pam’s House, Liv, Belinda, Als
Marley the Hamster and Basil the Goat.
Liv called me Longshoes. I was forever dubbed.

We would crowd round the kitchen table
like I had never crowded. Then Pam brought back
the head of a manikin from her foray in a skip.
We glued on a long blonde wig and hung it

from the ceiling to cover a huge crack.
And beneath it, Me and Liv watched Wimbledon
me rooting for McEnroe versus Borg
my arm aching to reach around her shoulder.

It was where I thought I would have been able
to love most. Next morning, near a pagan site
in the middle of Hampstead Heath, they found
the charred bones of what might have been a goat.

Films I Am Still In

I am with my best mates
hunting down a dead boy’s body

in Stand By Me
willing to shoot a bully

watching a deer on the morning track
up all night for my buddy blubbing

on a dragon ride
in Never Ending Story

talking Italian to my confused Papa
before Breaking Away

on my back, legs and arms waggling in the air
under a tree with Gregory’s Girl

forever in goal on a muddy pitch
in ballooning shorts from Lost Property

swinging on the rickety bar
broken by a dead kestrel

Slip

I want to slip down to the river
unnoticed, unknowable.

I was pictured here once in a knitted pullover
dwarfed by a pink rhododendron bush
smiling. Fixed. Seasonal.

I am in need now
of the long breath and dropped shoulders.

A girl in jeans with a flowery knee patch
reaches up for the hanging branch of a willow
ignored joyously

a couple take it in turns longingly
to photograph each other by the blossom
positioning the camera any which way while

fluffy cygnets pursue their decisive mother
down to the water. I slip better now

no longer held by the lens.

But Much Is

It is hard to avoid the difficulty of sadness
whilst listening long-distance
to another’s song

as when strangers curve into each other’s
unlikely bodies, whiteness
of mute swans

muttering quietly, then mirroring a heart.
Indistinguishably apart.
But much is to do

with that thin brightly-lit sorrowful
stuttering attention. Pain
is what binds love.

 Turning Back

We set out, the rain stubborn in its hammering
and tried to clear the valley
but the silver waters draining the hills
had pooled the roads and the small car too low
to get through lakes rising between towns
more powerful vehicles than ours struggling
settling at an angle, two wheels on the pavement
slushing past, no other route out of, or around.

Even to go back the way we came risked waters
we had come by gathering themselves up
and heading back the gale was stronger
rain at the windscreen so hard, I felt a breaking,
a frenzy of wipers in the brain, landscape closing in
the road only just making itself out through the whiting
tops of trees in the seething river breasting the brown waters
sheep sheltering in the crevices of rocks.

Now we wait it out. I spend the afternoon
making sure my paperwork is done
so I can get home unruffled tomorrow
or the day after. I like to think the hills
did not want to loose their hold. Or that the rain
was like harsh words that force you to be more slow
with love, with so many fools gone before us
come unstuck, whittling us back to only what we need.

The Bread Knife

I feel as if I have been stolen away
like the black-handled bread knife that disappeared

from my mother’s kitchen. She was old by then.
We looked down the backs of cupboards, under the bed

and exhausted all her usual places.
We fell to imagine what must have happened

and made up stories to fill the suspect silence.
Do knives have a mind of their own? We feared

the kids had it for some extra-curricular project.
Sometimes we sensed, mustard-keen that it was close

and sharpened by its singularity.
But after a while we forgot and got on with other things

deserving a rest from our feverish speculations.
We never found it.

Where do knives go?
Sometimes you are left without reason.

I Am Wished Away

this time by a gentler wind
threading blue smoke ghost-like through the pines
across the faces of the hill rising above the valley
rivulets like fingers reaching down for the curve
into the sheltering town within our silver bus,
a blackbird on the overhead line, gulls on parked vans
by the cemetery and post office and chapel and pub
easing into one slow final turn, readying for arrival
bright as grass after rain, golden lichen feathering
the black bark, red as a letter box, quiet as stone.

Being the Jew

Unnoticed, he wondered whether he should say anything
thinking that perhaps being unable to blend in
might be both easier yet more difficult.

Let it pass.
Life goes on.

It was slight enough to have been
nothing but a slip of the wine-loosed tongue.

Who means it these days?
Anyway he had met too many bitter Jews

and it was late in the evening
all those around him
seemed to be having fun.

Memo on the Aden Riots, December 1-3, 1947

From here, you can still see the skeleton
of the gutted Jewish boys’ school.
It is not that we are not used to pogroms.

But in Yemen they were rare
religiously motivated outbreaks of violence
and one relatively small riot

in May 1932 when a few Muslims
accused the Jews of hurling excrement
into the courtyard of the mosque.

The Farhi synagogue was desecrated.
Now there was radio, ‘Voice of the Arabs’
and incendiary UN declaration on Palestine.

At first, it was just bottles and stones.
Jewish shops and homes were ransacked.
The second day brought guns and rifles

and innocents on both sides were fired upon
in the Port Towns of Steamer Point and Tawahi.
Then the curfew in Crater failed

and military (so-called) were brought in –
1,800 Aden Protectorate Levies –
who, they said, shot indiscriminately.

At the end of three days, they counted
76-82 Jews and 38 Arabs killed
(six unidentified) and 76 Jews wounded.

More than 100 Jewish shops were looted
and 30 houses burned. Like a typical
Russian pogrom, the hooligans were unleashed

for several nights and days after which
the police would step in
to arrest the Jews who had resisted.

British officials received all unburned cars.
The head of the Jewish community gave his
to his erstwhile friend, the chief of police.

The aptly named Harry Trusted
led an official enquiry and put most of the blame
on Yemeni “coolies” temporarily in the country

who “have a low standard of life,
are illiterate, fanatical and, when excited,
may be savage.” The Brits meanwhile

in embassies around the world whispered:
How could they urge the Arab States
to protect their Jews when they themselves

had been unable to? And I heard later
at a dinner party, that many Arabs and Indians
had sheltered their Jewish neighbours.

In The Courtyard of the Yemenite Jewish Silversmith

We are the labbe necklace
airy, open, interlaced
strung upon a cotton or silk thread

We were silver wire cut
and concealed within ashes
then heated to become droplets

We were soldered together
one beneath the other
in the shape of a figure-eight

We are a spider’s web
of rhomboids, squares and rectangles
round beads or rosettes

We have been placed upon
a patch of woven cloth
to protect the skin from abrasions

We will once again be studded
with pearls and amber
coral and coloured glass

We are worn
sunken in the hollow
beneath the Adam’s apple

 


 

All poems © 2019 David Gilbert

If you liked these, do order ‘Elephants Fragile’ which contains others. From Cinnamon Press https://tinyurl.com/yyluw7j3

And see my other blogs at http://www.futurepatientblog.com

Sometimes A Man – Reflections of a Patient Director

I have not always found the role of Patient Director easy. But it is blossoming into one of the most worthwhile professional experiences of my life. Spring is almost here – in more ways than one.

Maybe it’s the fact that our amazing Patient and Carer Partners (PCPs) are making a difference. We have eight paid, valued and supported PCPs working in improvement and governance roles. And we have been hard-wiring systems and processes for partnerships. And the work is bearing fruit.

From the establishment of our service for people with Musculoskeletal (MSK) conditions, PCPs have been involved in improvement and staff training (e.g. leading workshops during staff conferences) and members of our regular Patient Forums alongside staff.

More recently they are taking the lead – establishing their own priorities, co-designing and delivering projects, being part of Multi-Disciplinary Teams (MDTs), eyeballing patient experience data and overseeing improvements and getting involved in decision making.

PCPs have helped ground the service in what matters. As one clinician noted: “This (patient and carer partner work) does improve relationships, but more importantly for me it simplifies processes, bringing everything back to our main purpose of care. We can easily become wrapped up in our medical mind and ‘fix it’ mentality without much reference or consideration to our actions, all with extremely good intentions”.

Last year, they were integral to one of our CQUINs – projects that garner additional support from the CCG. They helped support administrative staff (call handlers and receptionists) to enhance patients experiences, for example triggering improvements in waiting room environment, changing role descriptions for receptionists so as to focus on patient-facing duties and helping to design call handling training.

That project has bloomed into one where support staff and patients are working together to improve how we gather information about communication needs of patients, improving information provision and making clinics more accessible.

We are piloting having PCPs as equal members of MDTs with clinical staff. They will bring in patient experience data and lead a regular agenda item on ‘what matters’. They will help explore quality and safety issues – a recent discussion looked at expectations around diagnostics. For me, this is shared-decision making writ large. Patients modelling collaborative and reflective dialogue (that’s the posh phrase for it).

One member of a MDT noted: “It is possible to have a more person centred health care service, if people are open to working differently and widening their horizons as to where solutions to improvements may be. Patient partners hold an experience of the systems that we want to improve. We need commitment and adequate time allocated to exploring this from both sides to ensure that roots can grow, and that they become part of the make-up of the health care service as much as any clinician or admin team member”.

Last week, our Darzi Fellow, Emma Lloyd worked with patient partners, staff and the local voluntary sector to hold a ‘Pain Matters’ event for people with fibromyalgia and MSK pain. We had 150 people through the door. The room was buzzing so much, it felt like a massive peer to peer fest rather than an engagement event. I have been talking to our pain services lead, Karen Cox about repeating the event and linking it with work she is doing on redesigning pain services. We will be talking about this at our next Patient and Carer Forum.

Meanwhile, having finally got the hang of process mapping (actually, having got help from our wonderful project manager, Imogen), we have nailed what we do with free text comments from our regular patient experience survey. It is now clear what data should go where – which to corporate level and which to ‘pathway’ leaders and teams – and how it links up to the MDT work (above) so as to improve what we do.

We are developing a stronger data gathering programme and are about to bung in (that’s a technical term) a few questions into our regular survey on ‘how people want to receive information from physiotherapists and our advanced practitioners’. This flexible approach to data gathering then links up with the accessible information project (above).

In fact, it all links up.

The ‘Sussex Model of Patient and Carer Partnership’ is one that rests on a triangle – between the role of Patient Director (at executive level), the Patient and Carer Forum (at corporate governance level) and the Patient and Carer Partners (involved in improvement and governance). It is backed up by systems and processes to ensure the work becomes part of everyday practice.

This triangular foundation connects to other work that helps us to maintain a focus on what matters – learning from patient experience data and wider engagement work. It also links closely to shared decision making, self-management and well-being (programmes of work led by our incredible self-management lead, Chloe Stewart).

We think this model is one that other people can learn from.

At the same time, my own professional confidence is stronger than it has ever been. As many know, I have had bouts of mental health problems and have sometimes struggled to feel my own worth in this role.

There are still challenges – we need to communicate better the work of the PCPs so people know what they can do (and can’t sometimes, because they don’t have the support that staff take for granted); we need to make sure we close the loop on data – to monitor actions and impact; we need to make sure that patient engagement is built in at the beginning of all corporate improvement projects. And, for patient partners, we need to put in better learning and support so that they can be even more effective.

Meanwhile, in my corporate role, in the last six months I have felt better able to support my amazing colleagues, strategically and operationally. I have been less adolescent and needlessly challenging when stressed. I like to think I am a tad more creative, solution focused and insightful. I enjoy the work more, and look forward to going into the office. What more could a boy – sometimes a man – want?

 

© 2019 David Gilbert

If you liked this blog, see more at http://www.futurepatientblog.com

 

A Touch On The Arm – returning to work after mental health problems

This is a short version of a blog I wrote two years ago. I hope it is still useful.

The summer was scary. Symptoms I thought buried, returned. A NHS Director who had relapsed to patient-hood! Previously, I had lied on my CV about mental health problems.  Disclosure had been an impossibility earlier in my career. But now, I did not want to. I had a duty to be authentic. But it was still hard.

When you get back on your feet, they are wobbly. You are a foal. You are easily triggered and thoughts that you are weak and a failure rumble on, like fading thunder.

When I got back, I was bowled over by affection. One friend who’d been away with a physical problem asked: ‘Did you get a card from the office?’. I said, yes. ‘And weren’t those messages from everybody amazing’? She went on. ‘What messages?’ I said.

Then I realised that the organisation, rightly in terms of confidentiality, had not disclosed my illness to others. I had not had the chance for a conversation with my boss or HR to let them know they could tell others. So, I got a card with one signature and a message ‘with love and support from all your friends’. I had been further isolated through good intention. Disconnection made my return more uncertain.

Then there were a few who gently touched me on the arm and asked ‘are you OK’? That touch seemed to convey a mixture of concern, love, kindness. But also uncertainty – not about how I was – but about how to open up a conversation about my mental wellbeing. Their vulnerability created a human connection.

To me, it said ‘I am here for you, happy to listen, to be open, but I am unsure how much you want to share’. We needed a way of holding a safe conversation.

One said ‘I don’t want to treat you with kid gloves, or patronise you’. We talked about how to have that difficult conversation. She asked me to tell her if I was upset or triggered by what she asked me to do. But it was up to me to do so. She would not hang around eyeing me with concern. We agreed that would make things more awkward for both of us.

But what of younger staff? Several sidled up to me to talk about their own vulnerability – how they could not risk their career due to ongoing stigma and having a ‘blot’ on their CV. In this age of ‘time to talk’, maybe only the Prince Harrys, Stephen Frys and Ruby Waxes can afford to be open and not risk everything.

Those who can be open, should stop exhorting people to be like them. We should shut our mouths and open our ears. It is easy for people like me to write blogs. Better to be there if, and, when others feel ready. That touch on the arm showed me how it can be done.

My Uncle’s Collection of Tortoises – a small gathering of recent poems

I gathered a few recent poems together. I hope you like them. They will appear in my forthcoming full collection ‘My Uncle’s Collection of Tortoises’ by Cinnamon Press in 2020.


 

Mental Schmental

Nu? she asks with her usual charm
of my mum, then glancing sideways at me:
mental schmental

we don’t need to talk about things like that
do we? Nothing that a few pills couldn’t help
and anyway ECT never did me any harm.

 


 

Why I Left The Island

I left the island because of the wind
that flung across the dunes year after year
unsettling sand that scoured my skin
partially burying the blue-doored cabins.

I would traipse the beach for hours
echoing its shore, eyes gritted, eliciting tears.
I became flat like the island
days settling themselves beneath my ribs

in the soft place that folds away loneliness.
And when I left, they sang enchantments
against what I would become
and lit a necklace of fires along the hills.

Even now they say: I remember him
on a blue bike by a billowing field. Surely
he was happy then. I am beginning
to understand where I am happiest.

Each night patiently, grass at the window
tries to explain. The flame grows easier
to love, the wind stirring the streets
reminding me why I deserved to leave.

 


 

In The Portuguese Synagogue

In the Portuguese Synagogue in Amsterdam
the oldest in Europe, they still lay down
fine sand to absorb dirt and the sound of footsteps.

I learn that a chuppah can be made of anything
that a wedding under its cover can take place
anywhere, but preferably beneath an open sky,

that the glass broken during a marriage ceremony
can be of any kind and is a symbol of fragility,
that the boxes of those who perished in the war

stayed locked until they began to age and decay.
Then they opened them to find ants devouring
the prayer books, yarmulkas and phylacteries.

Across the cobbled courtyard, a small winter shul
is covered in a deep red carpet embroidered
with a wide-eyed phoenix rising from the ashes.

Here, time has set love free – common, repeatedly
trampled upon, hidden, lost, burned, eaten,
virtually extinguished, yet recoverable.

 


 

Low Star

Last night, we dropped off our son
then bought a Chinese takeaway
and watched a documentary
about the ends of the universe.

We laughed at how many times
Brian Cox smiled when mentioning death.
All is growing apart. How small
we become as white dwarves

random entities within the fatigue of entropy
shifting frequencies beyond thought
of our own unimaginable ghosts.
This morning, I find the requisite light

and am warmed by our low star.
The nuthatches hang like commas
in the sentencing, before arrowing
like time to a nearby branch.


 

Water Carrier

a child reaching out for the rain
collecting droplets in his cupped palms

will serve as my reservoir
this drawn-out afternoon

and when blackbirds regale the dusk
will be my evening water carrier

 


 

The Instruments

I met a girl once
and we spent hours in the maritime museum
trying to understand everything

about the instruments
that kept the vessels on-course and water-tight.
There was so much to learn.

One evening I came home
and banged my head repeatedly against the wall.
She had told me the reasons

we couldn’t go out anymore.
I guess you have to know enough to get by.
Too much and you’re ruptured.

 


 

The Underground River

We are walking. We are always out there walking.
As if walking this way and that down unknown roads
with the windows of strangers casting dull light
on our disillusionment will melt or disentangle
the many disappointments of daylight and as if
the turns we take – sorrowful, immediate, fanciful –
might act like dumb, arduous poetry – might become
more true and beautiful than history or mathematics.
We are beginning. We are only just beginning to tell
of the innumerable troubles we’ve rediscovered, shy
like wrens, brown and gradually disassembling
removing our sweaty gloves, unbuttoning jackets,
holding hands across the truth of our difficult lives,
a sense in which the hard earth can shift beneath
our stomping feet, dry-beds softening, moisture
eking through forgotten runnels, some deep found
rhythm in the underground river’s runaway song.

 


 

Octopus No. 11

I am Octopus No 11.
Tanked. Part of The Experiment. Intrepid.
I wait. With absolute acuity.

I watch. One behind my observation glass
take a break for thirty seconds longer
than the other (a short biped with a limp).

I am up and over the edge, across
the bench – this irrelevant division
between our cephalopod brethren.

Then wait once more in my new tank. I like
to watch those eyes dilate when they return:
The Incredulity of the ‘Superior Race’.

 


 

Belief (The Old Christmas Tree)
For Jan

I believe Barnet Local Authority
when they say they will collect it in January
(if we have cut it in half).

We do not have a saw
so I made do with secateurs
lopping off its top – where angels perch –

clipping and tearing at each stubborn branch
stacking them – my own lattice work –
feathery in the deep dark bin.

The cat tried to work it out
pawing at the branches
sniffing at fallen needles camouflaged in the grass.

The tree that means so much
is now no more than a big stick.
And for the third Friday in a row

I led its scrawny body up the garden path
and let it lean against the low wall.
And for the third Sunday in a row

I haul it back down
and could easily get cross.
But you have to laugh. After all

I am a Jew and should have known.
Tomorrow, it’s the dump.

 


 

Constellation

Sometimes almost without you noticing
a constellation may appear –
the cousin who phones from America

the difficult conversation that doesn’t
explode into an argument but reveals
kindly what you should have acted upon

a pair of goldfinches eyeing the seeds
an evening more quietly attended to
the unnecessary left undone –

patterns dimly recognisable only
the next morning having dreamt of a puppy
freed from the car boot and safely returned

to its owner – a wild-haired laughing stranger
who then invites you in to meet his friends

 


 

Terry

Blackpool may be grim. Spiceheads sculpt themselves
in doorways along Dickson Street while pit bulls sleep.
A fat woman throws her fag end to the ground
clambering with a groan from her mobility bike
and reaches for the door pad to the DWP.

A teen with aubergine hair pushes a pram
behind a pale wiry boy with concave cheeks
and a tannoy blasts from the sea front theatre
announcing cabaret season, while gulls descend
on tangerine bin bigs spilling KFC.

Terry tells me how he was raped at ten
dropped out of school, got hooked on amphetamines
then crack then heroin. Now, when he goes for a job
the DBS checks fuck me up. One mistake
more than twenty-five fucking years ago.

The system is a cunt. He is beginning again.
Putting himself about, mending locks for mates
and can go a few hours now without the shakes
is even thinking about kids. He smiles at last.
His girlfriend holds his hand. Is proud of him.

 


 

May Never Get

At the end of the day, being no more
or less miraculous than a tulip

shopping becomes difficult. I am stopped
by a wagtail that flits between the traffic

a cluster of redwings on the stubble
the florist steeped in roses and balloons

with silver lettering lit by the sun
crocuses, snowdrops and daffs bringing us

back to all that we were born to witness
while two women, arm-in-arm, laughing, turn

to look at a man in grimy blue overalls
smoking a cigarette, showering a jag

and a rainbow rises over the car wash.
I may never get to Sainsbury’s.

 


 

My Uncle’s Collection of Tortoises

I began to collect elephants
because he had collected tortoises.

They both seem old and wise.
My elephants remind me of his tortoises.

He passed me down a small jade tortoise
that sits next to a soapstone elephant

on our bedroom bookshelf.
I remember two huge tortoises

guarding the back door
of my grandfather’s house in Herzliya.

Me and my brother would sit on them
when we came back from the beach.

I had learned to swim.
We ate corn on the cob.

He taught me the latin name for the hoopoe
Upupa epops which made me laugh

(still does) while I rode into the night
on my uncle’s giant tortoise.

 


 

All poems (c) 2019 David Gilbert

David has three pamphlets published. Liberian Pygymy Hippopotamus (Templar), Elephants Fragile (Cinnamon), ReCollections a collaboration with Beth Hopkins, artist (Bethlem Gallery). He is Writer in Residence at The Bethlem Gallery and his forthcoming full collection ‘My Uncle’s Collection of Tortoises’ will be published by Cinnamon in 2020.

The Ten Year Backward Plan – a clear commitment to continued gobbledygook

I was going to avoid Twitter and blogs for a while. But this is too important. I’m also recovering from a gut bug, and should be resting… hey-ho.

If you’re looking for signs that the ten year forward plan will foster patient leadership, co-production or meaningful engagement with patients/users, carers, communities or citizens, then, er, don’t.

Gone is any pretence at ‘harnessing the community’s resources’ or any remaining pledge to work with patients and the public as equal partners in decision making – whether in improvement work, governance at local level (for example in integrated care organisations) or at policy level, let alone in the workings of the (allegedly non-merging) NHS Improvement/NHS England.

Power in the system remains entrenched in the hands of the professional elite – clinical, managerial and policy makers.

Empowering People (ho-ho)

A small section on ‘empowering people’ is focused solely on individual patients/carers gaining access to digital and online tools, like apps to manage their conditions, or accessing their own records (something that was to have been done years ago) or making sure (ho-ho) that there will be interoperability of shared records to ensure integration for people with long-term conditions.

And there I was thinking we had shifted a little in our perceptions that patients can be leaders – that the five new Patient Director-like posts in the NHS and the emergence of hundreds of patients/user leaders working as entrepreneurs, strategic advisers and the like might have created a ripple in the institutional pond of arrogance that besets a NHS that thinks culture change happens through resilience training and reshuffling the deck chairs at a structural level.

A section on leadership and talent management shows we are still a million miles from a mindset that acknowledges patient leadership or any sort of co-production in improvement, governance and policy work. “Great quality care needs great leadership at all levels. Evidence shows that the quality of care and organisational performance are directly affected by the quality of leadership and the improvement cultures leaders create”. Er, yes. Hello? Patients here? We can help?

But no: There will be a new ‘NHS Leadership Code’ that “will set out the cultural values and leadership behaviours of the NHS and will be used to underpin everything from our recruitment practices to development programmes”. Ah, some values and principles for existing system leaders (that’s not us by the way). That should do it.

Meanwhile: “We will also do more to nurture the next generation of leaders by more systematically identifying, developing and supporting those with the capability and ambition to reach the most senior levels of the service”. Will this include patient and carer leaders? Don’t hold your breath.

But the NHS just loves its volunteers (but not enough to provide some sort of opportunities, skills and career ladder). Here’s a commitment: “We will encourage NHS organisations to give greater access for younger volunteers through programmes such as #iWill and an increased focus on programmes in deprived areas, and for those with mental health issues, learning disabilities and autism. And we will back the Helpforce programme with at least £2.3 million of NHS England funding to scale successful volunteering programmes across the country, part of our work to double the number of NHS volunteers over the next three years”. Hmmm.

Might there be a mention of building on the amazing community development work or peer support in the section on ‘Improving population health’? No, it’s all focus on the integrated care services (please don’t mention STPs, ACOs, etc – that’s old hat). These amazing integrated organisations will “shine a light” (bless) on health inequalities.

Collaboration (but not with us)

The plan makes a values-based and meaningless plea for more collaboration at national level (this is where the plan is a bit surreal – the authors, based in NHS England presumably talking to themselves) – but it is collaboration between the same old elites who have got us into the problems we have in the first place. “As local health systems work more closely together, the same needs to happen at national level. NHS England and NHS Improvement will implement a new shared operating model designed to support delivery of the Long Term Plan” Ah, an ‘operating model’ whatever that means.

And at local level, there is a clear commitment to continued gobbledygook: “As ICSs take hold, we will support organisations to take on greater collaborative responsibility. There will be a clear expectation that strong, successful organisations not only provide high-quality care and financial stewardship from an institutional perspective, but also take on responsibility, with system providers, for wider objectives in relation to the use of NHS resources and population health. This will mean that neither trusts nor CCGs will pursue actions which, whilst potentially improving their institutional financial position, would result in a worse position for the system overall. This will be supported by a system oversight approach which reviews organisational and system objectives alongside the performance of individual organisations, whereby our regions seek to understand the drivers of challenges facing organisations and ensure that solutions reflect the wider system changes required”.

That’s all clear then, isn’t it? Who writes this tosh?

But of course we will be “deeply interconnected, leaders in all parts of the NHS will be encouraged to support one another across and beyond their organisations. This will be especially the case for thriving, successful organisations which will increasingly be asked to support their neighbours develop capabilities and build resilience. This will form part of a ‘duty to collaborate’ for providers and clinical commissioning groups alike.” But don’t expect collaboration or true partnership to be a focal point. There is nothing here about duties to plan and make decisions with partners outside the golden glow of the professional elite.

The Most Paternalistic NHS Plan Ever

In short, this is the most paternalistic, system-centric, professionally dominated NHS plan I have seen in my entire 30 year working life. It fails even the most basic tests.

It ends with a sop – a thank you to all the thousands of patients and the public ‘engaged’ and ‘listened to’ in developing the plan (no evidence produced for this claim) and a climactic page 115 (if you’re not asleep by then) announcing the launch of an NHS Assembly in early 2019 (p.s. what happened to the £2million pound a year NHS England Citizens Assembly?).

This will bring together “a range of organisations and individuals at regular intervals, to advise the boards of NHS England and NHS Improvement as part of the ‘guiding coalition’ to implement this Long Term Plan”. That’s clear on purpose and scope then.

I am not equipped to give a view of much of the content of the plan, though I am with Andy Cowper, from the HSJ who aimed a distinct ‘meh’ at the likelihood of this plan being much better than previous ones.

I am however well-equipped to have a say on patient and public engagement, co-production and leadership. And, I am honestly appalled at this paper. Angry.

Not only does it fail to build any systemic case for more influence and partnership with patients/users, carers, communities and citizens; not only does it fail to build on the Five Year Forward View’s arguments for working with communities; not only does it fail to weave in any commitment to a true change in culture through real collaboration…

It takes a step back in time. It is almost as if all our work to build co-production, patient and public engagement, patient leadership and new roles in healthcare are simply ignored. It is an insult added to the long term injury of lack of voice.

Whoever wrote this – whoever ‘leads’ this piece of work – should be ashamed. They won’t be. We have to make them so. Onwards and upwards.

By the way, if you want to glimpse the future of true ‘patient-led’ healthcare, have a read of this: https://www.ncbi.nlm.nih.gov/m/pubmed/30153874/
© 2018 David Gilbert

ReWrite – Creative Approaches to Engagement

This blog is unashamed marketing. I want to do more work in mental health and writing – my two passions. So I’ve put them together and….

If you want meaningful, effective engagement with patients and the public, why not try a more creative approach? ReWrite uses creative writing to improve dialogue between staff and users/patients and helps aid recovery for people who experience emotional distress or mental health problems.

We at InHealth Associates have thirty years of experience in Patient and Public Involvement and now offer an exciting new approach. As a poet and writer, I am bringing my expertise in engagement together with a creative approach to deliver two sorts of ReWrite workshops:
• ReWrite for dialogue
• ReWrite for recovery

I am looking for organisations to fund the following workshops.

ReWrite For Dialogue ©

ReWrite For Dialogue workshops bring together health professionals (clinical and support staff) with service users and their carers, to creatively share insights and learning about health service delivery and research.

By bringing people together in safe spaces, we are able to to nurture reflective dialogue and caring relationships between health service users and staff through poetry and spoken word, with a view to promoting inclusive partnerships.

This creative approach enables unique insight into ourselves, others and our collective wellbeing, giving a voice to those who often feel that they are not heard.

ReWrite For Recovery ©

ReWrite For Recovery is an opportunity for those who have been affected by life-changing illness, injury or disability to ‘re-write’ their own story. To reframe what has happened to them and to tell a different, perhaps more empowering narrative through creative writing.

About the workshops

These workshops focus on all forms of words – spoken and written, prose, poetry and lyrics, whatever inspires!

We have worked with mental health staff and users, patients and staff across other conditions (and, soon with people who have been homeless and offenders). Our themes are chosen carefully with clients and topics have included: ‘safety’; what does being safe, or unsafe, mean to you? and ‘healing relationships’.

All our workshops include:

• Examples and readings of poetry, prose and/or spoken word
• Discussions and reflections
• Having a go: producing your own poetry or prose
• Sharing and celebration
• Tips on sustaining your practice
• Resources and further support

Who can participate?

• Health service users and carers
• Anyone who has a professional role in health service delivery or health-related research including clinical, research, managerial, support and administrative staff
• Those with a professional or service user interest in health and research
• In ReWrite For Dialogue, we try to ensure an equal mix of service users and staff at the workshop.

What will you get out of it?

• A safe space for conversations on all sorts of important healthcare issues
• Creative insights and different angles on how to improve services – problems reframed and a wider menu of potential solutions
• Staff and users/patients coming together to better understand each other – healing and trusting relationships
• Improved confidence of users/patients and heightened morale amongst staff
• In ReWrite for Recovery, people view their own lives differently so as to lay the foundations for well-being and getting back to reclaiming their own life
• Last but not least, an enhanced love for language and the written and spoken word

The final word goes to someone who participated in a recent workshop:

Can I say how much I enjoyed the day. It was truly revelatory. I can’t believe that I actually wrote something in such a short time. You definitely sparked something in me. I’ve told countless people about the exercise and everyone would like to have a go! There’s obviously a big market out there for this type of experience”.

Get in touch? Email: davidgilbert43@yahoo.co.uk or @DavidGilbert43 on Twitter.

(c) 2018 David Gilbert

 

The Weakness In Me (is no weakness at all) – a message for World Mental Health Day

I am no big fan of mental health awareness days (see: https://tinyurl.com/y8jalvzg). The ‘awareness industry’ should be more about ‘understanding’ what people go through in terms of sense of pain, choice, control and meaning (see: https://tinyurl.com/y7mk3bvt).

We need to understand why people still feel shame and stigma about ‘coming out’. Without an understanding of this, no amount of celebrity exhortation and spouting of the ‘one in four’ mantra will help. I have written about how this manifests when it comes to the world of work (see: https://tinyurl.com/y9d8nk3f).

The pivot upon which all else turns is this: That to be mentally ill, or to have mental health problems, is to be seen as fundamentally weak.

However, we dress up the language of emotional suffering or distress, we are deemed weak. Explicitly or implicitly. Pain in the brain is equated to weakness. This is the crucial disparity with physical health problems.

The word ‘weak’ has its own resonance. Weak in life. Weak in work. Weak in the head.

Some have extolled the virtues of ‘vulnerability’, thus reframing the notion of weakness (see: https://tinyurl.com/oc4brbl). I want to tackle this in a different way, by saying very simply:

1. It is not weak to get pain in the head and painful thoughts, feelings and emotions – it is the result of an overload of life. Those of us who are sensitive, curious, passionate, idealistic, etc may be more aware and attuned to the complexities of life. Some will be overwhelmed by excessive stimulus. And will be too open to an unjust world. Some are too poor, too weary, too burdened by humanity that they will crack along their fault lines. This is not weakness. Why is it deemed so?

2. It is not weak to live with pain in the head and painful thoughts, feelings and emotions – it takes courage simply to stay alive sometimes. It takes enormous strength to get out of bed often, to take one step after another when your brain is crying out for sanctuary. It can take more effort than climbing Everest to get out of your door. If you have made it this far, you are, in my book, an unsung hero. Shame they don’t do medals for us. This goes on for day after day after year after year sometimes. Crushing. This is not weakness. Why is it deemed so?

As one of my best friends, Michael Fox, once said to me: ‘David, you are stronger than you think. But not in the way you think you should be’.

3. It is not weak to be a leader with mental health problems – as well as the qualities one learns from living with intense suffering (itself a form of resilience that nobody understands unless they have been through it), you learn what it is like to be truly human. To live with vulnerability, to acknowledge people as they are with all their faults, all their inconsistencies, all their incredible warts n’all. And you can become inherently kind – this needs work of course, but the seeds are there in the wisdom and insight you gain into your own being. This is not weakness. Why is it deemed so?

I have written extensively about people who have been through stuff. How they know about stuff and can change stuff – people who have been affected by life-changing illness, injury or disability, bring jewels of wisdom and insight from the caves of suffering (see: https://tinyurl.com/yaqb5m2f).

Yes, people need support. Yes, definitely there is the justifiable fear of stigma and shame. And in the current climate, it is incredibly courageous, and bloody lonely to ‘come out’. Yes people are in pain. Yes this suffering feels like weakness at times. But it is not.

I am attending a reception at the Global Ministerial Summit on Wednesday. If I have the guts, I am going to ask political leaders to put their hand up if they have had mental health problems. If they do, I am going to applaud them. And to those who feel unable to – including those senior political and professional leaders who read this – I want you to think deeply about why not and I say:

Until you do so, things will never change. Repeat: The weakness in me is no weakness at all.

The Stolen Pen – The resonance of anti-Semitism

My mother was nine years old when she arrived in England as a kinder-transport refugee. Her father had been forced by Nazis to paint the Yellow Star and words ‘juif’ on the pavement outside his shop in the Viennese suburbs. Then scrub it off. Then paint it again.

My mum’s parents just made it out of Vienna a few months later, but many of her relatives were murdered by the Nazis. She spoke no English and never spoke about the holocaust. My granny later suffered dementia, retreated to speaking German, and died in Friern Barnet.

My mother’s silence was a pall over our lives. My next book of poetry will be devoted to ‘mining the silence’. She was resilient but anxious and, being a sensitive child, I picked up that suppressed emotion. And suppressed my own when my parents divorced. in later years, I had a breakdown and still suffer terrible bouts of chronic repetitive thoughts and anxiety at times of major stress in my life. Some of this, I am sure, is due to the resonance of history I must have felt in the family home.

We used to go to my father’s parents for seder on Friday nights. My great great great grandfather was Samson Rafael Hirsch, the founder of neo-Orthodox Judaism in the second half of the 19th Century who promoted a practical and ethical following of the Torah against what he saw as the splintering of Judaism through the reform movement and assimilation.

My grandfather had come to England in 1913 before the first world war. His family changed its name from Guggenheimer to Gilbert as the former was too Germanic. Assimilation has always been one tactic of the Jew. But invisibility carries its own risks.

Grandpa Joe was the kindest person I have ever met. He founded the Hillel movement and on student campuses, there are ‘Gilbert Houses’ for Jewish students. My great uncle was a communist. My great aunts were leftist zionists. My grandfather and grandmother proud and spirited supporters of the new Jewish state. They all saw Israel as the necessary homeland after six million of their brethren had been wiped out. And they believed in a socialist state. I have cousins in Israel who would vehemently oppose my political views now.

My uncle was an educated gay cosmopolitan Jew who worked throughout his life for the cause of better Arab-Israeli relations. He played a central role in helping the Falasha Jews move to Israel in the early 80s. And set up many vocational endeavours that spanned Arab-Israeli boundaries. He worked to help liberate young women from the Haredi orthodox sect and set up the Jewish Aids Trust. His partner, a Swiss non-Jew, an abstract artist worked for the International Red Cross. My lovely uncle Robin was best friends with Rabbi Lionel Blue, who made a speech at my wedding – talk about people who tried for peace!

(As I write this, a robin comes to feed off tea cake crumbs on my plate in the garden! The notion of Jews feeding off crumbs comes into my mind).

Being a Jew

Being a Jew is not simple. They say ‘two Jews, three arguments’. I have mixed feelings about Israel, to say the least. And about being Jewish.

Politically, I am a soft-lefty. I liked what Tony Blair did, until the war in Iraq. I was a Labour Party member and have always voted for Labour.

Internationally, I have grown to dislike what the Israeli government has done, and is doing to Palestinians and see the injustice. I am ambivalent and torn about the cause of zionism. On the one hand, I bow to its necessity at that historical juncture. And yet I weep sometimes for what it has become.

But I hear too much from the left and from pro-Palestinian leftists (themselves seemingly unaware of how they are being ‘played’ by wider forces) about ‘destruction’ of the State of Israel.

And I have come to dislike Jeremy Corbyn for his continued inability to tackle anti-semitism, at least as much as for his collusion in Brexit (IMO). Yes, I know the right wing forces control the media. Yes, I know the Israeli government are stoking some of this. I am not a fool. But you have to understand the resonance of the current discourse for people like me who have known of ‘denial’.

We have also heard those words ‘destruction’ before. How do you think that sounds to the son of my mother. Where do people want Jews to go after ‘the destruction’ of Israel? Or do they want Israelis to be destroyed too?

We tried to assimilate and we got wiped out. We set up a State that has gone in the wrong direction, and extremists want to wipe that out too. Nu?

This is not simple for me, and I am trying to work out what a Jew who has married out, who has two sons does with his Jewish heritage.

What I do know

What I do know is that I did not ever think that I would witness the rise of the far right. Or of the far left in this country. And their virulent intolerance – of Muslims and of Jews respectively. Both far right and far left have hatred running through their veins. And lets not even talk of Trump and the forces of Brexit. Remember, ‘first they came for the Socialists…’

Oh how I wish Jews and Muslims could come together at this moment to realise their common experiences. We are being played by wider forces. And both religions have peace running through their veins. More in common than that which separates us. I am agnostic, but feel that the true spirituality and humanity that breathes like a wind through true Jews, Muslims and Christians, despite what human institutions have done to us, is a force for good.

But let’s come back to earth. And psychology. I write this not primarily to make any particular political point. Am no historian or political writer.

The Stolen Pen

I write more of a fear that rises in me – to describe the resonance I feel when non-Jews try to articulate what being anti-Semitic is and is not. And how, to me, that sounds perilously close to denial. A closing down to another’s experience. An ‘othering’ that resonates for Jews who are only, at most, one degree of separation from the six million who died.

I have never, as a white, tried to describe what anti-black racism is or is not. I have never challenged a black person when they say they feel discriminated against.

I have never, as a man, tried to describe what feminism is, or is not. I have never challenged a woman when they say they feel discriminated against.

Anti-semitism is one of the oldest forms of persecution – the idea of the invisible enemy within is a trope of both the left and right. But I thought the left in the UK – where tolerance has usually reigned – knew better. There is a better leftist to be revealed than that currently on display. And it comes as a shock, but no surprise that many on the far right have come to support what Corbyn has said in recent days.

Corbyn argues he is using the ‘right terms’ for zionism. That he wants us to understand ‘irony’. That he never inhaled. That he never had sexual relations with that woman.

Semantics. Shmemantics.

Yes, it is time for diasporan Jews to question and challenge the Israeli government, and (for people like me) to once again, like my uncle, strive for dialogue and peace. Between two states.

But it is also time for those who deny anti-Semitism in the UK and the left and the labour party to recognise what they are doing… before it is too late. I am a Jew. I am human. In fevered times, we need to pause. Stop the hate.

I have been looking for, am looking for, ways to forge dialogue – whether in the health service, in mental health, through arts, and perhaps in Arab-Israeli Jewish-Muslim dialogue like my wonderful uncle.

Maybe I can help a little though writing? I don’t know. My mother told me once that she stole a fountain pen from her father and smuggled it deep inside her coat pockets the night before she left Vienna.

Dear Mum. I am holding on to that pen, metaphorically.

Shalom.

© 2018 David Gilbert

Asking The Wrong Question: ‘How Can People So Cheerful, Talented and Beautiful Kill Themselves?’

Another teen kills herself at 18 years old. The media is lit up with quotes from loved ones and friends about how ‘talented’ she was at her chosen sport, with so much to live for, how ‘cheerful’ she had been, even days previously, and how ‘beautiful’ she was. The media echo how shocked everyone is. How could someone with ‘everything to live for’ want to die?

Who knows what happened. I have my own theories, as we all may do if we dwelled. It is lacking in respect to speculate too much, to intrude on bewilderment and total grief. As a parent, it would be unbearable.

But here is what I do know.

At 18, I was talented and seemingly cheerful. Friendly, caring, sensitive… more words that meant that those who knew me would have been shocked that I was treading on thin ice. That I may have been intellectually capable and apparently calm, but underneath I was fragile.

It was at that age roughly that I hit my head on a wall when a girl refused to go out with me. It was a year later when I couldn’t sleep with worry about my university essay. Another year later, and I was having daily anxiety attacks about the work I was doing.

And at 25, much to the ‘shock’ and ‘bewilderment’ of my loved ones, I had a massive nervous breakdown and was unable to cope with life or my mind for another six years.

I have written a fair amount on that time. But there are one or two main points that I think are worth considering here.

Firstly, it should come as little surprise that someone who is outwardly cheerful, should be suffering. What is more surprising is that we don’t learn. Time and time again, loved ones and friends (and the media) grip to their awkward beliefs that this ‘should not have happened’, that they have somehow been duped, and that outward appearance mirrors what lies below. How dumb are we, societally, not to learn?

Secondly, people tend not to be curious about the pressures that must have surrounded someone who kills themselves. People are wary of looking under the rock – at the reality that those who kill themselves often may be driven perfectionists, incapable of living with their own faults.

I vomited with anxiety most Saturday nights before swimming galas when in my early teens. The signs were there. I did not know how to deal with fractures in my self-worth and felt I could not be anything other than perfect. At 56, I still live with that unfortunate legacy. It is not about blaming families or loved ones – my parents did all they can, and had their share of pressures themselves.

It is more about finding ways to check in, finding ways of assuring kids that they are loved and worthwhile even if they fail sometimes. That, as humans, we are enough. Societally, we are so far from being able to do this, it almost unbearable to witness these days. And, during such volatile times, being ‘good enough’, cultivating character rather than personality seems so old-fashioned as to be almost ridiculous. Almost.

Thirdly, it is not enough to put at the bottom of an article, akin to the small print in a contract, ‘go seek support’. It is patently inadequate merely to urge people to ‘talk’. It seems particularly contradictory when pinned as an afterthought to an article on the cheeriness of the person who has killed themselves! The whole thrust of articles on ‘young’ ‘talented’ ‘cheery’ ‘good looking’ who have killed themselves is to convey this sense of denial and a ‘how could they’ tone that drives curiosity away.

A little note urging people to talk is a sticking plaster. This is almost irresponsible journalism – insidious and hypocritical.

Fourthly: As a teen, I would not have been able to talk, to articulate what I was going through. In the bubble of my sense of perfectibility, I did not have the language or self-knowledge to express what I was feeling. I would not have been able to admit to doubt, without a huge wrench opening up in my world. A crack that would turn into an abyss. If you had asked me how I was, I would have said ‘fine’. And would not have been ‘lying’. Life (and not feeling well) is not as simple as the ‘let’s talk’ brigadistas suggest.

So, what helps? I am not sure, but I know the rest of my life and career will be spent trying to find out how to help. I guess the first thing – maybe the only thing I know at the moment – is that if you know any youngster who is cheerful, talented and, yes, even beautiful, don’t wait to reassure them that they are loved for who they are, not who they are outwardly or will be in the future.

I really don’t have answers, but I know better questions. They do not revolve around ‘how come someone so cheerful kill herself?’ It is about asking ‘what can I and we do to make sure kids feel OK about themselves?’. Somewhere in that morass, lie some better answers…

© 2018 David Gilbert

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