Mr Robot – musings on the personal, professional and the political

I watch a fountain, and wonder whether my energy, like that water, is inexhaustible. I continue to heal, but may need another couple of weeks off and a ‘phased return’ to my role as Patient Director.

I ponder what I can do, and can’t do. What we can do and can’t do. How the personal and the political play off each other. And, increasingly feel that I want to place my energies elsewhere. But I am 54 and need the money. And, on the whole, believe in what I do still.

Don’t get me wrong. I am going to give the Patient Director role another shot. But I have to do less, and get more support. And the organisation is supportive.

However, beyond that, I need to think. I have been in healthcare and been supporting patients’ rights for over 30 years. But I am tired. And my latest bout of ill-health almost did me in. I am squarely in a mid-life (ha! Who am I kidding, two-thirds or three-quarter life) ‘crisis’

I’ve been thinking…

Mr Robot is an edgy drama where the protagonist, Elliot, an IT genius and inveterate hacker, is haunted by his father’s presence and by dreams of changing the world and wresting control from the evil ‘E Corp’.

No spoilers, but it plays on issues of control, politically and psychologically. His struggle with himself at present (I’m on series two, episode three) is between his enforced tedious everyday regime that he thinks will preserve his sanity from internal demons, and his ‘other side’ – the one that can take over and go up against the corporate empire (but ultimately destroy him psychologically).

The Labour Party seems to be tearing itself apart too. I am agnostic about Corbyn who seems to want to change the world for the better. I was a supporter, but have gone lukewarm after the EU referendum. But I am fascinated by the way a decent bloke (on the whole) seems to have allowed himself to to be surrounded by some nasty people.

I know it takes two to tango and the other ‘side’ aren’t perfect either. But the nastiness on social media has again made me wonder about the personal and political – on the whole, it is the personal trolling by Corbyn’s supporters whenever I ask a question that has turned me off him, which is probably wrong and sad. I really can’t be arsed any more to enter that hostile territory, and need to preserve my energy.

Meanwhile, Mr Simon Stevens, the NHS England boss, another man who seems hellbent on changing the world and speaks very fast, has been working on his latest wheeze – STPs, or Sustainability and Transformation Plans.

There’s another blog brewing there. But my point here is that I have been whipped up into righteous anger by the failure of these latest plans to involve patients and the public meaningfully in any way shape or form. It is, in my view, a policy destined to fail, and based on a fear of those in power to have difficult conversations with us. When the consequences hit the streets, so will people with their placards.

This has all made me wonder whether my thirty years of work have been wasted. And instead of coming out fighting, part of me just wants to give up.

I guess I’m tired

Last week, when sitting with friends trying to plot a project, I said that we should try and do something small, something local, something real, something that gets away from the bullshit, that I had had enough of acronyms and large scale plans to change the world.

My good friend Anya De Iongh smiled and said that I had changed. I have been involved in co-founding the NHS Centre for Involvement, worked in national agencies, co-founded the Centre for Patient Leadership and wanted to set up a national network for Patient Leaders…

Now I want to sit and watch the fountains, be with my kids, write poetry and do local meaningful work. Oddly, the most satisfying ‘work’ I have done is picking up litter – tangible, focused, under my control…

Am I just tired? Is this just a sensible rebalancing of a man who still feels like a lost boy sometimes, who has never really given to himself? Or is this a re-charging of batteries.

Yesterday, I watched some videos of snowboarding champions, with my boy Adam who is now into this amazing sport in a big way. Danny Davies is a snowboarding superstar, who has been badly injured and each time come back to the sport: “Each time I get injured, I am determined to come back and do better than before, do things that I couldn’t, work harder and help the sport more”.

I am not sure I am Danny Davies any more, or Mr Robot. For the time being, I just want to be me. I’m not sure I ever have been. And I am not sure what that means. Let’s see.

Is It Worth It?

“With all the will in the world 
Diving for dear life
When we could be diving for pearls”
Elvis Costello

___

This morning, I noticed the trees. And a lot of other things – the wind, the rain, the clouds, my feet, my spine. I am fortunate. I have come through, for the time being, a period of extreme anxiety and OCD-type thinking. I am grateful.

As some know, I have suffered work-related stress and been off work. I think I am coming through, but am still fragile. I am on meds for the first time in 30 years, and I think they are helping. I am also helping myself – I suppose one could call it ‘self-management’. But at times, it has been more just about survival. I am grateful.

My wife, Susan has been extraordinary, and yet again I have been amazed by her cool head and warm heart. And her patience. We met in a psychiatric unit as fellow inmates, almost exactly 25 years ago. We’ve had our rough times, but have stood by each other. Love has grown in weird and wonderful ways. As it does sometimes.

This week, while she has been away with my youngest son, Adam, I have had a week with the older boy, Samuel. He is a teen who loves computer games, but this week, I have lured him away from the screens every now and again. We have gone shopping together, had meals out, cleaned the house and sat in the garden watching the cat. It has been lovely. A wonderful side effect of my illness.

I have found time to write poetry. I have again discovered that words are my real love. If I could make a living from poetry, I would. But I know that is unrealistic. Unless any of you have ideas on that score?🙂

Meanwhile, friends have offered incredible acceptance, love and support. I have even had emails from relative strangers, many of whom have said they appreciate the work I have done over the years. I have been thrust back into a vulnerability and need for love that I have not felt for years.

And in some strange way, I think I have been nicer in the last few weeks. I am again aware of how people are not really their physical selves, but a mass of whirling sensations, thoughts and feelings – just like me.

I have, for the first time in years, allowed myself to rest, and have needed to allow myself to heal. I let myself lie on the sofa and watched the Olympics. I have been touched particularly by Lutalo Muhammed, the silver medalist in the taekwondo, who lost after being kicked in the head in the last second of the final. I am always intrigued as to how people cope with ‘failure’. It feels familiar.

Is It Worth It?

I have been doing too much as a Patient Director. My portfolio is too large, and I have not had sufficient support. Or maybe I am not made to be a director. I have been pondering whether the stress is worth it.

When I go back, it will be a ‘phased’ return, negotiated with people I trust in the organisation (who have been tremendously supportive by the way!). I have not been able to focus on areas of strength and been drawn into situations that have been uncomfortable. This needs to change.

Beyond my own troubles, over the years, I have watched fellow ‘patient leaders’, or whatever we want to call us/them struggle to balance their passion for the cause with looking after themselves. Too many ‘relapse’ for a host of different reasons. And now I am one of them.

Our efforts will fail unless we find ways to support ourselves and each other – I am venturing out tomorrow to have tentative discussions with a few amazing friends who may help build ways to do this.

I have seen how much my body and mind need to heal. For too many years, I have been keeping myself going and been a ‘skater on thin ice’ as a therapist once phrased it. I am full of anxieties that are easily triggered. Ventures I have helped build have crumbled, and I have resurrected my career more times than I like to think about. I am also quite strong at some level, confident of my abilities (when my brain works) and pretty good at what I do. How will this work out?

I need to earn a living. I can’t afford to resign. I want to make the Patient Director role work. And I know there is deep learning to be gleaned whatever happens. But if the work takes its toll again, I will walk. And trust the universe, if I can. That is my pledge to myself.

And that is why I have written this blog. This is for me. I want to look back in six months or a year and know that I have put my body and mind first for a change. And my family. I cannot afford to go through this again.

If this blog speaks to you, that is an additional gift. Please look after yourself. Be gentle.

Sometimes A Hill: Poems written during a time of trouble

I have been unwell. These are some poems written during a period of deep anxiety. I hope  you get something from them.

 

At First

You were still a girl
when you set out
believing in nothing

but your arms, the pull of oars
and the small islands beyond the bay,
promising, absolutely promising

you’d be safe
and not go too far
in the weathered boat.

You rowed without thought
the light rain, at first
delighting your skin

before the sky’s battering
brought down a mauve blanket
in front and behind your blinded eyes.

And you thought of the Ark,
of granny looking out from the shore,
how water can be as heavy as a burial

how a touch of rain can be a prophesy,
even when a moment – a lifetime – ago,
you did not believe.

And what promises mean
and your lack of plans.
Then there’s the rocking and jerk and tip

and suck of cold.

You don’t remember
the speedboat that brought you back
that, at first, your granny believed

could only be bad news
or of the moment after letting go
to nature, chance, God, whatever.

 

___

Fire

He warned of the fires
that would rip at the mountainside
and spill into town
where the buildings were ready to burn.

The weather had been ugly hot
the eucalyptus on the hills like tinder.
The government didn’t do much
and the locals were asleep.

There was an arsonist on the loose
and the lazy firefighters on strike.
This island would never learn.
It deserved everything it got.

But last night, I woke
to the rain’s whispering fall.
Sometimes everything is set
yet nothing happens.

 

___

Sometimes A Hill (A semi-found poem)

Sometimes

There is no universal definition of a mountain. Elevation, volume, relief, steepness, spacing and continuity have been used as criteria for defining a mountain.

Sometimes a

In the Oxford English Dictionary, a mountain is defined as a “natural elevation of the earth surface rising more or less abruptly from the surrounding level and attaining an altitude which, relative to the adjacent elevation, is impressive or notable”.

Sometimes a hill

The eleven largest countries without a ‘mountain’ are The Gambia, Kuwait, Moldova, The Netherlands, Uruguay, Guinea-Bissau, Denmark, Estonia, Latvia, Lithuania and Belarus.

Sometimes a hill is

The highest point in The Netherlands is 321 metres and is shared by Belgium and Germany

Sometimes a hill is sad

Het Hogeland (The High Country) in the North, near Groningen is only a few metres higher than the surrounding land.

Sometimes a hill is sad that

In Phoenix, Arizona, there are hills called Camelback Mountain and South Mountain.

Sometimes a hill is sad that it

In Mississippi one day, a teacher told his primary school kids about Mount Everest. One of the kids asked him what a mountain was. He tried explaining that it’s like a huge pile of rocks that’s bigger than anything they’d seen, and one kid raised a hand and said ‘so, it’s bigger than a car?”.

Sometimes a hill is sad that it is not

In Lithuania, the words for ‘hill’ and ‘mountain’ are pretty much interchangeable. And a mountain can be called a mountain if it has something of interest on top, like a fort or monument.

Sometimes a hill is sad that it is not a

In Latvia, a mountain is almost anything that you need to put noticeable effort to walk onto. It’s highest peak is Mount Gaizins at 311 metres.

Sometimes a hill is sad that it is not a mountain

And, while Denmark proper is relatively flat, the Danish Crown owns Greenland (which has mountains).

Sometimes a mountain is sad that it is not a hill

 

___

The Walking

So we get to where we get to
turn around to look how far we’ve come
along the ridge.

We can still just make out the café
where we had lunch a long time ago.
The buzzard in the chrome blue sky

tells that this is where we got to
last time, when the walking
was far easier

when there was somewhere else to get to
and the buzzard told of more
than its circling.

___

Nougat

I was trying not to think about anything
and panicking
every time my mind went blank

and telling myself I was allowed
to think about anything
and that I shouldn’t panic

if I thought about anything scary
or if my mind went blank.
Then I thought about nougat

which is odd
because I don’t particularly like nougat
or dislike it.

I have no memory associated with nougat
except the banal association
that it gets stuck between your teeth.

So perhaps it is a metaphor.
But that didn’t seem to strike true
so I thought about it some more

and could imagine
the long pink boxes of nougat
we sometimes bring back from Finland

that are quite nice
but nothing to write home about.
And that’s about it.

So I’m still thinking about nougat
and why I thought about nougat
and not getting very far.

 

___

The White Table

Instead of starting your day
you might just want to head out
into the garden

where a spider waits on thought
and the white table is dusted with leaves
that have fallen in the night.

From there, barefoot on the grass
dare to look up at who knows
what freightless birds

travel without you across
the immeasurable sky. Then
down, then feed the cat.

 

Say It: I Still Have Mental Health Problems

Today I made what I think was a brave decision. I called in sick and was honest as to why. Writing this is my antidepresssant.

For the last 20 years I have described myself as a ‘former’ mental health service user, or as having ‘recovered’ from my mental health problems. I am wondering whether that is true.

Over the last year, in my newish job, I have found things tough. And, to be honest, prior to that too. I have had bouts of anxiety, stress, and (yes, David, say it) depression.

I know the difference between mental (yes, David, say it) illness and this anxiety state. The former had me incarcerated and suicidal for six years a long time ago. This is very different. But the mental patterns are similar.

I do not want to wallow in melodrama, though I am rather good at that. And, I do not want the anxious concern of others (though a little reassurance goes a long way). But maybe I should admit it – I am suffering from anxiety, mild to moderate depression, and a form of mental habitual thinking that is less than helpful! Maybe I am a bit ill. After all, I am not Superman, and it is a bit of a relief to admit that.

Many years ago

When I was very ill, I had what I called ‘loops’ of obsessive thinking. I would see something, a flower, say, and then obsess about my thinking about it. The pattern went: There’s a flower. Oh, I am thinking about the flower. Oh, I am not really seeing the flower. Oh, I am observing me thinking about the flower. Oh god, I’m thinking like this again. Oh shit, I’m still ill. Oh, f()<k, why not kill myself?

The escalation happened in a fraction of a second. Every day, all day. Living through this machine gun firing of neuronal impulses meant constant pain and sapped my mental and emotional energy. It kept me focused on my internal workings and meant I missed out on external life. Underneath this ‘wired’ state was a depressive exhaustion. In retrospect, I think I had some sort of OCD, without the ‘acting out’.

I had hoped that the mental patterns that led to this profound distress had burned themselves out, and that the rewiring during recovery had left me with lifelong ease. I am fortunate that the volume has been turned down significantly, and that the anguish dissipated. Many are not so lucky. But lifelong ease? No such luck.

These days, the anxiety patterns still occur during times of stress. I obsess about a problem, and it becomes a vague visual or sensory image floating near the back or front of my mind (just behind the eyes in fact). I will think about something else, but like a rubber band, my mind (usually accompanied by a subtle eye movement and associated gut pull) will pull back to the ‘image’ or ‘feeling’.

The work to be done is to be mindful, to breathe, to come back into my body. Relaxing my eyes can help. But at times of more intense stress, such as the last four to five weeks, this continual mental work becomes exhausting.

Stories

On top of this mental pattern, I can then make up stories – fleeting, powerful, negative stories. These ‘judgements’ are the killer. Whereas my former patterns led me to say ‘I want to kill myself’, these sneak up and like the devil on your shoulder, say things like ‘there, you see, you are not good enough’, ‘you’re weak’, etc. But they are so so subtle, you can miss them and the words permeate or create the emotions and bring on a heavy sense of ill-being that tugs at the gut. Cognitive Behavioural Therapy ain’t going to crack it. Been there, done that…

No amount of mental coaxing from outsiders, let alone the trashy euphemisms spouted by the well-wired on social media, will crack it. All you can do sometimes is come back to the oldies but goldies – straightforward behaviourism… ‘this too shall pass’, ‘you are stronger than you think’, ‘one step at a time’.

And, of course, the help from friends. Today, I want to thank Annie Laverty and Chloe Stewart in particular for their listening, gentle support and encouragement. And, most importantly the advice I am so damn good at doling out to others – be gentle and look after yourself.

Recovery

When I was recovering, I found myself doing more, but still feeling like shit. This was a vulnerable time. Others noted an improvement in form. I would be reading more, taking part in more conversations, able to go out for half an hour… but I would moan ‘but if I am doing more and still feeling like rubbish, then what is the point of living? If there is no gratification, then why bother?’.

My mind was fooling itself on an altogether different level. It was telling me stories that were based on an assumption (a) that one had to be happy clappy to live properly – this is Hollywood bullshit (b) that things won’t change, that this state of mind will last forever – depressive bullshit. What a double whammy from the lands of optimistic and pessimistic fantasy respectively!

Eventually – and this was the biggest lesson – and one I am leaning on as I write this, the more positive feelings catch up on the behaviours. But boy it is hard to believe it as the mind clings on to its habitual ‘truths’ grounded in the familiar neuronal circuitry.

Habits

Breaking any habit is the hardest thing in the world. Breaking emotional patterns may be the hardest of the hard. If you are still with me up to this point, you know this truth. If you know this truth, I am sorry. It means you have hurt a lot and have learned the hard way. I wish there was an easier path.

My mum used to say I thought too much. She was right. But that did not help. For those of us who suffer distressing mental patterns, the ‘choice’ to think differently is not always available. We are wired from an early age.

I think that mental anguish is particularly painful. I am not saying it is worse than physical pain. But with physical pain, one’s mind forms a relationship to the body’s suffering. It can soothe (though I also recognise that severe pain can lead to distorted thinking, and vice-versa). But with mental pain, the observer and the observed; the interpretive, critical and judging mind and the suffering mind become entangled; both are off-kilter, leading to ever more vicious spirals of distorted thinking and dramatic interpretations.

Another way through for me is to talk to others, to seek help and advice (though not too much – that way lies potential confusion from too much advice). And to write, to see the words. Hence this blog. In particular to get things ‘in perspective.

A pile of stuff

If someone else were to say to me that they had been going through the following list of stresses, I would be kind and say ‘that’s quite a lot, take care of yourself, be gentle’. But we are not our own best friends!

• New job, new role, a level of responsibility never before encountered, within a NHS that is struggling, in a service that is trying to transform things, in an organisation that is trying to model a different culture.

• Travelling a lot – being away three or four days a week for the last six weeks. As I grow older, I need to recognise that it takes me a while to get back my energy. And I have been depleted. I sometimes feel disconnected from my colleagues and work place. This leads to made up stories in my head that I don’t belong, am not supported, and other tosh.

• Not sleeping – a killer for me! The anxiety about sleep as every insomniac knows, becomes a vicious cycle.

• Difficult, new and seemingly relentless problems to solve at work that have added to the uncertainty and confusion (this for someone who finds it hard to deal with ambiguity and to trust that things will work out).

• A mid-life crisis – or, shall we say, things changing at home (kids growing up, changes in how often you are at home meaning a need to shift routines).

• Shall we add world events? I don’t think we should underestimate the impact of 2016 – it’s been bloody awful, and we should be shaken and worried about the state of things. A feverish and often nasty social media dialogue surely don’t help. I also think I am growing tired of healthcare work, and maybe I am not cut out for it any more – or at least am questioning whether what I do is worthwhile…

Bullshit

That last one is interesting. That is the bridge to another set of stories which, if I was listening to someone else, would trigger the alarm on the bullshit detector. It is a small, but profound leap, from the list of stuff I am dealing with (reality) to that additional story or interpretation that I am somehow not ‘worthwhile’. And that is a crucial distinction to make. But in my tiredness, it is so easy to sleepwalk over that bridge and find myself in la-la land.

I am grateful to Annie Laverty who phoned this morning and listened to the ‘pile of stuff’ I was dealing with, and told me to write it down. This helps.

One final thought – I am wondering how the above will affect perceptions of me, professionally and personally. I have written previously on vulnerability and leadership and whether a director should be able to ‘cry in the toilet’. I am all for declaring uncertainty and vulnerability, and ‘being who you are’.

All the same, to admit to this publicly in a high pressure job (or in any walk of life I suppose) is a risk. But I am not sure if there is an alternative if we want to tackle stigma. It might be easier if I had a bad cold.

I could have phoned in today without the anxiety about the anxiety, and then the guilt and the worry about what they think… but I chose to tell my colleagues. I hope that was the correct decision.

 

 

What If? Patients as Partners for Change

I have long argued for a different way to ‘involve’ patients in healthcare decision-making. I am fed up with the traditional approaches that buffer change – patients as feedback fodder or slotted into institutionally narrowed ‘representative’ roles. I have written about this here and here.

Patients can be true partners for improvement and change. They can help identify what matters, rethink problems, generate solutions, model better relationships, promote better decisions and improve practice (see, Seven things that patients bring).

Now, if we really want solutions to our current healthcare challenges, we need to:

  • Learn to value what patients can bring – see patients as partners.
  • Change how engagement is done – rethink engagement processes.
  • Support people’s capabilities to better work together – develop the right skills.
  • Develop new opportunities for patients to influence decision-making – create new roles.

THE PATIENT DIRECTOR

Becoming the first Patient Director in the NHS (there are now two of us) I have had the chance to put my money where my mouth is.

I have written about some of the excitement and challenges of the role here.

In its first year, our partnership has worked hard to get things right for and with patients. We receive referrals from GPs for patients with musculoskeletal (MSK) problems. We screen them (triage) to make sure they get to the right place at the right time and can offer people appointments in our community specialist clinics.

We got the contract for overseeing all MSK work across Brighton and Hove, Mid-Sussex and Horsham and Crawley, partly because we promised things would be truly patient-centred. This includes making sure people have choice of where to go, are supported to look after themselves and manage their own conditions better and take part in shared decision-making.

But developing systems and processes and at the same time improving and transforming services has been hard (for example moving locations, getting different clinicians to work together in different ways, integrating IT systems).

We know that waiting times for some of our services, and into secondary care are still too long. We also know that many patients are unhappy with the pre-appointment booking process.

CHANGING THINGS WITH PATIENTS

As a patient and a carer, I’ve always been struck by the impact on patients of poor processes outside the immediate clinical encounter, particularly when it comes to access and communication. I have written about this here.

Early on, I shadowed Sally York, an excellent Extended Scope Practitioner (ESP) who now leads our physiotherapy services. We discussed ways we could improve patients’ understanding of what was said during the appointment, and how patients might come better prepared for the appointment.

Having looked at our (not very good) appointment letters, we changed the way we communicated with patients about their first appointment. This led to a new appointment letter that includes a series of questions and prompts so as to prepare for a more effective appointment. I have written about that here.

Next up was to find other ways to improve the pre-appointment process.

We had set up a Patient and Carer Forum. Each of these starts from a patient perspective. Yes, we have a patient tell their ‘story’, but patients and staff reflect on the learning and we try to come up with solutions.

At the first of these, Jenny, someone who had used our services, spoke about her own (good and bad) experiences. We got on to talking about problems with appointment systems and this aided the development of the new appointment letter. But it did more than that – it primed everyone in the room to thinking more about our systems and processes.

After the Forum, I tapped into some work going on to improve our systems and processes. We invited Jenny back to be part of this ‘systems thinking’ work that took place over several intensive days.

I was determined that Jenny (and other patients) would not just ‘feedback’ on their story – powerful though that was. Jenny and I made sure that she stayed in the room as an equal partner.

Her role was to ask the questions that brought people back to what matters to patients, to challenge professional assumptions about what was needed to address problems or about interpretations of why things were as they were, to identify other ways of doing things – in short to be an equal partner. Or, a Patient Leader (see here for articles on patient leadership, co-written by me and Mark Doughty, co-founder of the Centre for Patient Leadership).

As the workshops moved towards thinking about solutions, staff began to discuss how to change the appointment booking process. Jenny listened and then said: “Sometimes when I get your calls to make an appointment, I may be in Tesco without my diary. Or, if you fix an appointment and send a letter, it may not be convenient. Then I waste my time and I suspect yours, by ringing to change it”.

There was silence and nods around the room. Many of our Patient Care Advisers – great staff who have contact with patients on the phone and help them through the system – are on the receiving end of frustrations about the system that sometimes doesn’t work. And we get complaints and lots of cancellations or DNAs (people who do not attend) as a result. In fact, we know that about 70% of calls we get are as a result of poor processes – this is known now in the jargon as ‘failure demand’. It is a vicious cycle.

But it’s what came next that was the real surprise. Jenny said: “Why not send me a letter that asks me to phone in at a time convenient to me so as to make an appointment”.

Those around the room were immediately sceptical. What if the patient did not phone in? What if appointments were left unmade? Could we trust patients to take that responsibility? Was it an unfair expectation? Wasn’t Jenny just one patient with one ‘anecdote’? How representative of others’ views was this idea?

And yet… It might be worth a try?

THE OPT-IN LETTER

Many organisations get no further than hearing the ‘Jenny story’ (some don’t even get that far).

Many staff may feel the importance of such a story and are converted to believing that the story indicates a more general problem. But they stop short of doing anything about it. Perhaps because they lack the power to do so?

Others might go a step further and identify solutions. But without patients still in the room, professional interpretations of the problem can lead to erroneous solutions. Without challenge in the room, perhaps we assume that patients don’t turn up to appointments, not because of our poor systems, but because they are feckless in some way, and need more assertive reminder letters in bold red font, or a policy that threatens to ‘discharge’ them if they don’t turn up.

Shouting always helps, doesn’t it? smiley

But, because of the way that Jenny had become a trusted member of the group, because she had been there for the whole time as a co-researcher, because the group itself had developed its own trusted relationships and really wanted to get it right, because they had delegated authority to try new things – for all these reasons, the team decided to do an ‘experiment’.

The team arranged for 100 people referred to us by GPs in Brighton and Hove with hip problems to be sent a letter asking them to phone us to arrange an appointment. The findings after a month are encouraging. 76 out of 82 patients who had a view about the process were happy with it. Cancellation rate in this cohort was 5% (compared to 14% over the last year for all Brighton hip patients). The team calculate that if a similar improvement was made throughout our service, there would be 3,542 fewer cancelled appointments each year. Staff on the phones report they like the process and feel less stress as a result.

And all because of Jenny’s gentle suggestion – “what if you tried this…”

We still need more evidence, and to know if this will work for all our populations, so we are thinking about how to roll the experiment out to other sorts of patients (e.g. with knee problems) and in different areas, for example in Crawley (where there is a high proportion of people from black and ethnic minorities).

NEXT UP…

We now have three projects linked to our CQUIN targets (these are projects that are tied to getting extra cash from the CCG, or at least not losing it!).

In each of these – one on pain service redesign, one on shared decision-making, one on improving patients’ outcomes – we will be involving patients as partners. Those patients will be paid and supported to play a similar role to Jenny’s.

This early pool of patient partners will be bolstered by the recruitment of a further half a dozen in the autumn, so we will get a pool of about 12 patient partners by the end of the year. These people will be provided with support and training and we will identify a range of continuing improvement activities for them to be involved with.

The things that seem to make a difference in this ‘patient as partner’ approach are:

  • Meaningful, influential and well-defined opportunities for patient partners.
  • Clearly defined role that goes beyond feedback or representation.
  • Proper support (practical and administrative, reflection and learning) for patient partners.
  • Staff involved being able to change things – this is often the limiting factor in improvement projects in my opinion.
  • Directors and other decision-makers who are supportive of the changes.

And what if you tried involving patients like this?

By the way, this does not replace other involvement work. It will augment wider work, for example, surveys, focus groups, learning events, the Forum, co-designed research to get views from patients who use services.

It’s been a year since I became a Patient Director. It has taken a long time to find my feet. And god knows it has not been easy! (See, for example, this blog.) But things are becoming more exciting. It is the likes of Jenny, and the willingness of my colleagues to work with Jenny et al that make the future even more so.


If you liked this blog, read more at www.inhealthassociates.co.uk or follow David on Twitter: @DavidGilbert43.

You can also see David and fellow Patient Leader, Alison Cameron, presenting on ‘Patients as partners’ at a MES conference, Challenge 2020: Advancing Health Engagement & Involvement, on Wednesday 6 July 2016 in London.

 

 

Patient As Refugee

“All I ever wanted was to come in from the cold”. Joni Mitchell

Patient as refugee

When people suffer from life-changing illness, they are expelled from the life they once knew and uprooted from their ‘home’ – aka their previous body or mind. They are isolated in a new, confusing, ever-shifting world (of daily experiences and healthcare) not of their choosing.

They are in pain, vulnerable, dependent and yearn to belong again. Often they are faced with the fate of all outsiders – loss of identity, stigma, labelling, infantilisation and powerlessness. They are refugees.

My mum was a refugee, a kinder-transport child, who came from Vienna at age nine, speaking no English, arriving at Liverpool Street Station with one brown suitcase.

Many of my ancestors moved across Europe. My grandfather on my dad’s side was from Prague, his father from Frankfurt. My grandparents came to England just before the first world war, and changed their name from Guggenheimer to Gilbert, to avoid anti-German feelings. We are a family of refugees who wanted to belong.

Belonging or seperateness?

When I had mental health problems, all I wanted was to be safe and belong again. The low level generalised anxiety that I still live with means that safety and belonging are the drivers of my life, love and work. My mum, all her life, wanted to be safe and belong. Her experience of war, I often feel, was akin to my six year experience of mental illness hell. We both have wanted to come in from the cold.

Many patients are now connecting with each other and forming a sort of diaspora – a community of interests and common values, based on shared vulnerability and humanity. Whether this be through social media, community development or through ‘patient and public engagement’ activities, this steady growth in communal strength is rooted in the ‘refugee’ experience.

People who suffer from life changing illness are forming new bonds, new ways of sharing and learning from each other, and new collective strengths founded in the crucible of pain.

Ironically, it will be these refugees who save healthcare, by finding new solutions to unmet needs and creating organisational forms that re-link healthcare institutions to their original purpose of public value and service. And, most patients I know who want to change the healthcare world, want to work with health professionals and build trusting relationships. We want to belong.

p.s.

By the way, the EU Referendum will not be decided on facts or evidence. It will be decided on feelings – whether we believe in belonging or separateness. And I know where I stand on that one – with my mother, both of us with our refugee hearts – knowing that there is only one way to go in this life, in this work, in this decision. I will never vote for seperateness.

InThroughOut: Poems of Illness and Recovery

These are the poems I will be reading at this year’s Critical Voices Arts and Health Festival. I hope you like them. I hope you will come and hear me read them, and to see a wonderful array of artists and healthists.

 

Please note: These are best viewed on a PC, not a smart phone. The latter disrupts line breaks.

 

These Middle-Men

These middle-men, these old men, these mothers, the wheel, the chosen and praised, despised, the praising and querulous, the erudite, unvoiced, ancients at the mountain and wall, these exotic diehards, sand falling through long, long fingers as they traveled. The tablet, nail, ghetto, sewed on stars, these boxed and crated, the wheels, tracks, tattoos, sheds and piles of shoes. These Jews, their silences, these jokes about the two men and three arguments, these dreams of the desert, the calling of names, covering of eyes, the squabbles, the fights, the ladle, the soup, sharing of recipes, medicine when you couldn’t sleep, things better left unsaid, these grandmothers, second cousins, bitten fingernails, paired ironed socks with blue crosses, the smallness of you against the bigness of it, your useless words, that useless god, these candles you were told outlasted night, these doubts, this wheel

 

 

Jab

I slid between rooms
Severing wires

Unscrewing bulbs
And scissoring magazines

Limbs became heavier
And heavier to operate

I sat cross-legged
Fending off evil

While the bedroom wall
Grew dangerously thin

The black house began
Its whispering plots

My brother was sent
With poisoned Jaffa Cakes

Then came the scraping
And bleeding sound

Of thousands of chairs
Falling over themselves

Midnight’s rush
Of telephone calls

Rose wailing and wolf-like
Four men arrived

Serious and muscular
The quiet jab came

And my mother’s voice:
Please look after him

 

Morden Via Bank

Fell asleep at Tufnell Park missed Camden Town went sailing via Charing Cross, came up at Warren Street. Well, what the hell, I thought turned right, zigzagged unfamiliar streets walked into a foyer, took a lift to an office that sort of looked OK sat down at a desk, scanned the in-tray then got up to make a coffee. Don’t think anyone noticed till lunchtime when a guy with blue eyes said: Hey, Dave. You all right? You look kind of pale. Must have been a rough night. A woman with glasses said: Have you done something to your hair? Suits you. Then she left me with papers to read and file. Drafted a couple of emails then realised I had a one o’clock meeting with the senior management team: Nice tie said the Chief Executive before we got down to business. It’s been a long day, I thought later as I wrote an overdue Board paper on Exception Reporting. I hadn’t even had lunch. It was already getting dark. I put my coat on, headed back to the station and wondered whether I’d get home too late or find another one.

 

Birdsong

Sparrows rat-a-tat the double-glazing.
Matted feathers, smatterings of blood
and smeary wing-prints stain the glass.
The garden is a reddened blur.

There’s a soot-blast at the fireplace.
Seven blackened birds with gaping beaks
tilt their heads and fix us with yellow eyes.
One has a broken leg. Still it hops.

A screeching. The puffed up Robins
have done for Max (we taped the cat flap).
A swarm of collared doves descend
to join the magpies strutting the roof.

A scream. We turn. A thousand wrens
stream like jets through the letter box.
We hack at them with tennis rackets
fall back and jam the kitchen door.

They batter for hours, then all goes quiet.
The fuses blow. We wait into the night
tune and re-tune the old radio:
Nothing but the blast of birdsong.

 

Close Obs

I’m curled into a ball
on a thin mattress on the floor
covered with a crinkly nylon sheet
smelling faintly of sick and piss.

Outside the heavy brown door
sits Len, muscly, tanned,
with the Mirror crossword.
Not much older than me,

he’s done his fair share
of hurtling down corridors
readying needles full of Depixol
to slam into the arses of lunatics

like me I suppose.
As my sobbing slows
I hear him humming tunelessly
and clicking the end of his pen:

‘Mate, your mum said
you didn’t use to be such a dickhead.
Let’s see. Try this for starters:
French for dead-end, 3-2-3?’

I don’t know whether he’s
smart enough to be taking the mick
but I’m damned if this mad man
will ever tell him the answer.

 

Admission

I want to help
on your first night in

because I heard them stay you
in that room

and through the door’s grilled window
is a still body in the dark.

Though I can make nothing
from the outline of you

I recognise your shuddering
at secret sounds.

I want to talk in cliches:
‘Here, we are all boats

harboured in strange waters’
and want to say:

‘Yes, I will be your lighthouse –
A steady pulsing lookout’.

But in truth, at best
here, we are all dogs.

See how we stray
and roam the dock in packs

sniffing at the dregs
ready to turn on each other.

No, none of us know how to help
and I will not help you sleep.

 

Visiting Time

It takes a while to notice
the absence of flowers or get well cards.

The visitors arrive in dribs and drabs
without grapes, bowing their heads

as if in prayer, or maybe to avoid
being recognised. We herd ourselves

into a corner far from the worst –
my friends the shakers, the lurkers, the prowlers –

and sit, hands clasped on our laps
mirroring each other’s spaces,

the unspoken guilt rising like smoke:
Will they find forgiveness for leaving

loved ones here so as finally to get around
to cleaning the house and breathing?

And surely, we are safer now?
Who of us can blame them,

their trust pinned on furtive telephone calls:
‘Doctor please, what’s wrong with him?’

And so our threadbare minutes hang
without the meeting of eyes

or the dread ‘How are you?’ Instead:
‘The nurses seem nice. Are you eating?’

Let’s not mention the children of friends
doing well, careers, weddings, holidays

or hope. But here is mine: next time
bring flowers.

 

Two Types

There are two types of suicide:
Those that dabble
and those that are done with doubt.

The former can easily fall prey
to slight miscalculation of the dose
a sudden unbalancing gust at the edge
or late arriving ambulance.

I didn’t know which I was at first
but each night’s hesitation at the seventh or eighth rung
of the spiralling steps of the water tower
gradually told. I could only

watch with awe the ones
in bare feet, who beat a deliberate track
to the cold, deep, moonlit reservoir.

 

Stepping Out

Even then I was sorry
for the man who drove the white van.

Afterwards, the police
made us both a cup of tea

milk and three sugars for him
black for me.

It was hard to see
a man so shaken.

Now I have
an almost invisible scar.

But he saw ‘this mad lad’
stepping out

took in the dull thump
then had to explain

to them, his wife, his mates…
Or else keep it in

and the next day
get up and drive again.

 

Swarm

When we met and held on
in the lengthening days
a couple of weeks after rain,
they were underground

the wet warm soil made ready
while we – astonished strangers –
faded into each other
and a subterranean signal sent

for the buried colonies to rise
for avenues to boil
for lawns to blister in the sun.
They swarmed

through pavement cracks
spilling into eyes and gardens
clouding the sky on silvery wings
the bodies in this once blue town

whited out and harried
until we all became
senseless scurrying shadows
drawn together, the odds stacked,

while they mated on the wing
the males soon to die,
the queens to feed off the vestiges
and live for another 15 years.

All is luck. I walk and I walk
without knowing where
grit between teeth
tongue and throat furred

picturing through the blur
us last night
heads lowered against the hurt
trying to find the long way back.

 

Lake

I couldn’t work out what was happening.
I walked to the end of the rickety pier,
drew a bucket of cold water from the lake
and saw things I had not seen the day before

though the weather seemed much the same:
Silvery fish darted under the surface,
water boatmen skedaddled on its skin,
ripples from a long gone motorboat

lapped the large flat stone at the shore’s edge
and the brown stems of giant lily pads curved
down into the murk. A cormorant flew
low and fast across the bay’s wide mouth

and out of sight, while the deep cells continued
their slow work of invisible rewiring.

 

Finland

When I trusted enough
you threw me a lifeline
and we flew to your Finland.

It was dark by two thirty
and on the first night
a blizzard from the steppes

dipped the temperature
to minus twenty one.
Even your countrymen

drove wildly on that ice.
The news was full of it.
An alcoholic fisherman

was found belly up
by the silent morning dock,
swollen fingers stuck

to a frozen cigarette.
I was glad to feel at last
the shock of weather

that had been and gone
six years without me noticing.
‘I glove you’ I joked

into the bone-stripping cold.
Then, breathing the burning air
in thermals, layers and hats,

like a pair of Michelin Men
or throwback to the ward –
two shuffling roly-polys –

we slid blindly to the store
and stumbled back laden
with enough Lapin Kulta,

chocolate and pickled herring
to last a lifetime – a new
big fat lucky lifetime.

 

Walk with Adam

The muggy evening walk to the Sainsbury Local
for white sliced bread, bananas, honey, milk
and something else we couldn’t remember.

A black cat, then a grey tabby
both rolling over so we could tickle their tummies,
them for a while following us.

Me talking about my job, how busy I was
and trying to explain the EU Referendum
Him, why he likes Jayden so much.

Him taking a photo of a tree against the sky
that came out too light.
Me explaining apertures and shutter speeds.

Him admiring the grass by the road,
clipped tight to the edge and mown smooth.
Me, preferring it wild, with daisies and dandelions.

The tall security man having to point out
the big sign: ‘Eggs’
so we could find the eggs.

Us having to phone mum to remember
what we had forgotten. Him blaming me.
Me, him. Her not remembering either.

Him fishing out a big box of Magnums.
Me putting them back. Me relenting.
Us on the way home, sharing a packet of Rolos.

 

The World Is Full of Toilets To Cry In

Old smelly ones of course, uninspected, with cracked floor tiles, damp inglorious seats and broken locks, where one tap gushes forever hot and the dryer doesn’t work, even if you bang it several times. And where you’re not so poorly as to fail to notice the plethora of metaphors.

I can feel more at home in posh ones, conference centres, government agencies and four star hotels (you can sometimes sneak in if you’re desperate) where Mozart streams in from unidentifiable wall speakers and the soap and incense sticks, in your justifiable fury, are easily nicked.

There was one (soon after she left me) where the urinals were ringed in a hazy ultraviolet light like the one that went round and round in Captain Scarlet and the Mysterons (though maybe I’m wrong. She said I was a lot of the time. Maybe it was white). It could be some sort of futuristic antiseptic. But it had me so captivated that I forgot. For a while.

But mostly I prefer the everyday ones, in railway stations or shopping centres, just about clean enough mostly, to let you know you’re alright in the end, not too shiny to make you feel awkward for feeling so rubbish. And at least you’re never alone. I don’t mind paying 20p for one of those.

My Imperfect Blog – How to be a good enough Patient Director

This is not a perfect blog. In fact, this blog is about not being perfect. And if I can get it out in half an hour, then I will make a virtue of its imperfection.

With a year almost gone in my role as Patient Director, I have come to see a few of my faults close up. Or, should we not call a spade a spade, and label them ‘challenges’? Maybe that’s more charitable.

1. Too much to do – overwhelm

I feel overwhelmed by the amount of work on my plate. Given that I have to cover four territories – patient and public engagement, patient experience work, patient communication and information, self-management support – it can feel too much.

I do not have a dedicated team, so rely on building trusting informal influential relationships. This is going well, and with the help of Jo Howe (on complaints and some of the experience work), Marina Asaad (on information) and now Chloe Stewart (the new self-management lead), things will get easier. But I still feel the need to have to do it all. Now is the timeto build the gang – and include the informal amazing helpers, such as the clinical leads and patient care advisers (those talking to patients and arranging appointments, etc).

Knowing what to prioritise and what to let go of is an old habitual weakness. I want to be superman, and this stems from childhood (and led to my nervous breakdown). How to manage my energy and prioritise my work into small chunks is the next step. With help from those around me, this is going to get better.

2. The work is too complicated – I don’t understand

I am decent at the patient and public engagement stuff. I am excited about ensuring there is meaningful engagement in our developing CQUIN work (that is, targeted improvement work that is aligned with dosh from the CCG). We are focusing on improving pain services, through in-depth systems redesign, improving shared-decision making (at first for patients facing choices about treatment for hip and knee osteo-arthritis) and improving outcomes for patients (initially with spine problems), drawing upon a new measurement of outcomes, called the MSK-HQ.

In all these, I am working with clinicians and other staff to ensure patients are partners in co-design. This is relatively familiar territory, but for higher stakes – and is testing my navigational and relationship skills to the utmost.

But the engagement work is easier than the patient experience work.

With the latter, though I have written reports on how to best use patient experience data, the technical and logistical problems sometimes get me down. We have fixed some problems with the questionnaire itself (patients getting multiple copies as they get discharged from different ‘pathways’ so get one for each of them; wording on covering letters, etc).

Now the main task is making sure that reports we get from the survey provider allow (a) clinical leads to get the intelligence they need to take to others and how to ensure that this leads to conversations that will change things (b) the corporate team to know we are doing OK, and what to do if not. This is not an area of strength, and is leading to a few sleepless nights. I am drawing on other people’s expertise (outside the organisation as well, such as the amazing Anne Laverty at Northumbria Care Trust).

But the need to trust my intelligence in an unknown area takes me back to the days when I never felt good enough. Learning to trust and let things emerge is not easy for a ‘J’ (in Myers Briggs terms). Dealing with uncertainty is not easy for a control freak. I say it’ll be OK, but believing it in my heart is more difficult.

3. I just want to be loved – Dealing with potential conflict

I want to be loved. Doesn’t everyone? One of my skills is facilitation and with this job I know I can’t please everyone. Navigation and compromise seem to be at the heart of a job that also involves keeping the rudder square on to the needs of patients and bringing them into conversations at every opportunity. But I also need to steer between the needs of clinical and operational requirements. Sometimes this feels like swinging across choppy seas rather than a smooth steerage.

This is the essence of patient leadership in my eyes – how to build and model a ‘trialogue’ between clinical-managerial-patient purposes. Stepping up with authority means though I have to make quicker decisions, and not let a need for involvement get in the way of a clear vision for what I, and hopefully patients, want to see.

And I need to keep gently challenging assumptions. I went along with a key corporate decision last week and later regretted it. I have gone back and said so. I was pleased with that.

4. Good enough?

All the above need me to be ‘good enough’ and not perfect. I don’t need to do it all now. I don’t even need to do it all. One of the tricky things in this job is that I have made three significant transitions. Firstly, from being an outsider to an insider. Secondly moving ‘up’ into a position of authority (I have never been a Director before). Thirdly, this is a new role.

Moreover, this is is a new role within a new organisation. Finally, it is in a new organisation that is trying to change things at speed and at huge scale. Everyone says I shouldn’t expect things to happen fast. But I do. And that may be both a blessing and a curse. I need to slow down, breathe, and be good enough. All things I have been pretty hopeless at when younger.

And that is my half hour blog. Now, back to some Sunday morning poetry – because we need to give ourselves a little bit of loving time. And that is my way. Be gentle with yourselves.

Junior Doctors and the Dishwasher Dispute

Junior Doctors and the Dishwasher Dispute

 

When I was 15, I witnessed my mum and dad arguing about how to organise the cutlery in the dish washer. The dispute escalated.

Soon she was accusing him of being ‘sloppy’ and he labelled her ‘controlling’. The arguments moved from dishwasher to personality faults. The stakes were higher. Cutlery was thrown rather than put away. Both sides invoked past hurts and the discussion moved swiftly to divorce proceedings.

I had no chance to have a say. Perhaps I could have said: ‘if this is about the cutlery, I am sure you could sort it out without shouting, or even divorcing’. Or: ‘if this is about wider stuff and how you feel about the future of the family, let’s all talk’. At the very least perhaps ‘treat me like a grown up here’.

By the time the bitter rows erupted, I was too scared to say anything. When I did raise my head above the parapet, my brothers told me ‘don’t make it worse’. Or my mum or dad accused me of ‘sticking up for her/him’ and got angry with me.

Does this sound familiar? I am sure we all have our versions.

When the BMA and Jeremy Hunt were discussing pay and conditions, patients witnessed them arguing about how to resolve a seemingly technical dispute. The dispute escalated. It was not apparently ‘just’ a technical issue. Dishwasher technique was symbolic of wider, deep-seated issues.

Soon one was accusing the other of dogmatism or of potentially harming patients (now or in the future). The stakes became higher – this was about how we want to organise the NHS, whether we want better weekend care, or even according to some, about privatisation, etc etc.

Patients have had no say. There has been no discussion with patients and carers about the wider issues above that affect them (as users of the service) or a voice in policy for the future vision of the NHS (as taxpayers and owners of the NHS). Jeremy Taylor, Director of National Voices and I have written about this here.

Now, as belligerence and bellicose rhetoric rise, and as strike action escalates, lots of patients I have talked to are scared of saying anything publically, of asking questions too loudly or having a view – too frightened of the flak to put their heads above the parapet (a forthcoming BMJ article looks at this issue). Offers from patient groups to help have been ignored. See here.

Even writing this blog feels risky. A few people warned me against it. It makes me feel like that scared child again. It should not be the case that I have to defend myself. But I feel so nervous of stepping into this debate, that I want to state that I have worked 30 years trying to support patients to work with clinicians and doctors as true partners within the NHS – see here for example. I am all about improving things together.

With the future of the NHS family at stake, it’s high time for patients to be involved in the trialogue. And please can all the ‘grown ups’ get their wise heads screwed back on and hot foot it back to the table. Before it is too late. Please.

___

p.s. Any analogy has its limitations. For example, the government and doctors can’t get divorced (I hope).  They are going to have to work it out.

p.p.s. There are some articles recently which, from different viewpoints, stress the need for a wider perspective, cooler heads, space for reflection and dialogue. Here are a few which I have found interesting:

p.p.p.s You may not agree with the article, but I hope it leads to more constructive conversations about dishwashing🙂

 

 

Patient and Public Engagement for Real: What we are doing at the Sussex MSK Partnership

This blog serves two purposes. Firstly, it’s going out to colleagues – the fab Clinical Leads and other staff – to update them on our patient and carer work; secondly, as a public post.

My role is all about how Sussex MSK Partnership (Central) can work with, and for, patients, carers and citizens. As Patient Director  I want us to have the sort of cultures and systems to make this part of everyday business. And make sure this matches our vision of providing people with a great service, helping them look after themselves as best they can and be part of decision-making. This includes all staff modelling trusting relationships between each other and with patients and carers – wherever they are in the organisation.

In Control: Self-Management Support

We have finalised agreements on work with the National Rheumatoid Arthritis Society (NRAS) to provide self-management programmes for people with Rheumatoid Arthritis. In the Autumn, a NRAS worker will be ensconced in our offices co-ordinating this work.

Meanwhile, The Fed – who are leading work on helping people with MSK conditions to be active in the community – held a launch event for the project ‘Right Track’ in Brighton last week. Over a hundred people came to learn about self-management and what the voluntary sector are up to. It was a busy and buzzy event.

At one stage, 25 people from the Chinese community rolled up. The interpreter asked if we could hold an impromptu Q&A for them over lunch. But no, we couldn’t do that could we? We had an agenda set up, didn’t we? Step forward Gareth, one of our physios, who said ‘let’s do this’ and took them through what our service can do. We brought lunch to them and shifted the agenda. It felt like a symbol of how the NHS should adapt professional-centric behaviours to patients, rather than fit them in to our institutional systems!

From this, Kieran Barnard, one of the clinical leads, has invited The Fed to come and present the Right Track work to the MDT (Multi-Disciplinary Team) on hip and knee conditions. The voluntary sector will also come to the next GP Education Session where we will be talking about our service to GPs and Practice Managers across Mid Sussex and Horsham and Crawley – partnerships in action!

The most exciting news is the arrival of Chloe Stewart, our new self-management lead (though I prefer the label ‘self-care’!). She will work with clinicians and staff to get self-management right up there on the clinical agenda. We will work together (and with the voluntary sector and our Patient and Carer Forum) to develop a self-management strategy.

This will also bring together self-management work we are doing in the pain service, fibromyalgia and probably areas I don’t even know about yet! The next Patient and Carer Forum in late May will focus in depth on self-management support.

What Matters: Improving Patients’ Experiences and Outcomes

Data is rolling in from our new patient experience survey where we are asking patients who have been discharged from our community specialist clinics (yes I hate that word ‘discharge’, as most people know). Clinical leads – we have one for each of our ‘pathways’ – will receive data monthly about what people think about their service.

I will be writing quarterly reviews of what has been done with the data and identifying cross-cutting corporate themes. There is no point in gathering data if we do not do anything with it. You can find out more about my thinking on this in a report I wrote last year ‘making sense and making use of patient experience data’.

Meanwhile, one of our other clinical leads, Hilary O’Conor (lead for ‘shoulder and elbow’ – I know, it’s a bit like that song ‘heads, shoulders, knees and toes…’). Anyway, Hilary has been leading fantastic work on finding out whether patients feel involved in decisions about treatment options. Starting off in hip and knee OA (Osteo-Arthritis) we are implementing the SURE Score – a measure of people’s confidence on whether they have been involved.

At the same time, in our spine service, Johan Holt, is leading work on helping clinicians and patients assess ‘pain chronicity’ using a measure called ‘STarT Back’. This will help clinicians identify whether patients are at risk of developing chronic back pain and therefore who needs targeted interventions.

Zoe Schaedel, our lead for how we work with primary care, is hatching plans for ‘patient-reported outcome measures’ (PROMs). We will be rolling out the MSK-HQ survey that has been designed to look at outcomes for people with all MSK conditions. How we roll that out is a challenge – we don’t want to over-burden patients with questionnaires! We need first to start in the spinal pathway and then see where next.

Back to patient experience: I am kickstarting a project with a Senior Patient Care Advisor, Stephen Cracknell. He helps to manage our Patient Care Advisers (PCAs) who staff the telephone lines and support patients (e.g. in booking appointments, dealing with their issues). We believe that PCAs know a lot about what matters to patients, as they are talking to them, and listening to them every day (just like clinicians).

The ‘PCA Sponge’ project (better title needed?) will work with PCAs on how they can better pick up on patient experience issues, either being able to deal with them on the spot, or better translate what they find out into service improvements. I am very excited by that one!

Patients as Partners

Next week, we go to the CCG to find out whether our plans to develop a People Bank – a dozen trained, supported and paid patients/carers – gets the green light. This will mean recruiting folk over the Summer so that they can get involved in service improvement work, governance (e.g. on the MDTs), research and training.

Already this week, one of our early People Bank members, a patient with RA, joined a discussion of how we take forward our work on instilling our vision and values. Another patient is set to help us with our work on redesigning pain services (alongside people from the voluntary sector).

If you are reading this as a person with a MSK Condition… watch this space. We will be recruiting for members soon as we widen this pool of talent who should get access to the most wonderful ‘patient leadership’ training in late Autumn.

We have patients and carers lined up to join the rheumatology MDT and as the work to redesign pain services evolves, I will be working with Jonathan Kenyon, the lead there, to support patients and carers to be on that MDT as well.

Better information and communication

Our website has improved, though it’s by no means perfect! Guided by the sterling work of Marina Asaad, our comms lead, we now have better patient information up there. The work on improving appointment letters is getting good feedback and we hope it leads to patients being better prepared for consultations. And I am going to work with Paul Macauley, part of an internal improvement team, on developing a bank of digital patient stories.

We need to match how we communicate with health professionals about service changes with messages going out to the public. We will be developing our communications strategy alongside our neighbours – the Sussex MSK Partnership (East) who have a terrific Patient Director, Anne Sabine.

Final word

One of the best things so far about my (not quite so) new role is the emergence of trusting relationships between myself and the clinical leads – and the way they just ‘get’ the patient partnership agenda.

I got a call from Kieran Barnard this afternoon. We discussed how patients could be involved in research about a particular type of knee and hip surgery (especially when there is evidence that it doesn’t work for all patients). This could lead to focusing shared-decision work in this area.

I am struggling with how to keep up and communicate what I’m up to. I am having exciting, but quite fragmented discussions with all sorts of people. I want to find ways to frame information about the patient and carer work without overburdening people with numerous useless emails.

It was Sally York, our new physio lead who suggested a regular blog for clinical leads. And I think it will be useful for other staff, and for a wider audience.

So if you like it, praise me. If you don’t, blame Sally🙂

(c) David Gilbert 2016