listening

Open dialogue

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I went to a conference in Nottingham yesterday to learn about a technique called Open Dialogue. I wanted to know more because of how it has revolutionised the care of people who are in crisis in parts of Finland and the US, reducing demand on mental hospitals and transforming lives.

I care deeply about mental health services, although I don’t run them any more. These days I campaign to make them better. I volunteer in suicide prevention. I chair the Time to Change mental health professionals project. And sometimes I need help from services myself.

I wish you could have been there too. Some massive pennies dropped, not just for me but for everyone who hadn’t already appreciated the possibilities. We learned that Open Dialogue is about being with people rather than doing something to them. And we realised that here was a way to mend things that previously seemed unfixable.

Let me explain.

There are some who say that the NHS is broken. And that mental health services are badly broken.

I’m not sure that broken is a helpful way to describe things. I prefer to think of them as badly wounded. And when someone is wounded, you take care of them.

I believe that people in highly influential positions do care about mental health. They are just unsure about what to to do, other than saying they care. They know that mental health services around the country are buckling under the strain of increasing demand. Referral rates have never been higher. And continue to climb. Services find it increasingly difficult to discharge people because there is nowhere for them to go. Staff are overwhelmed, and there is a growing recruitment and morale crisis.

Added to which, successive governments say one thing about the importance of mental health but allow the opposite to happen regarding funding. Despite the fine words and promises in the response to the Mental Health Taskforce report published in February, we heard just a few weeks ago from NHS Providers that mental health trusts are not seeing the promised investment and some are reporting funding cuts in 2016 – 2017. Parity of esteem? Actions speak louder than words.

How might Open Dialogue help?

Firstly, it isn’t simply a technique for listening really carefully to people who experience trauma and distress AND their families so that together they can work out their own solutions, with support. It is also an extremely respectful way for people to relate to one another, in teams, across teams, organisations, health care systems and society. Even the NHS.

Secondly, Open Dialogue is the antidote to what is sometimes called the biomedical model, when doctor knows best and patients are compliant. This works when there is a fairly simple problem and solution. For example, a broken leg. It doesn’t work for the vast majority of health conditions in which people need to become the expert themselves if they are to lead fulfilling lives. And it certainly doesn’t work in mental health. Mental health professionals know this. But we organise and regulate mental health services as though we were fixing broken minds instead of legs.

Open Dialogue builds on what some call the Recovery Model, based on hope and fulfilment rather than simply diagnosis and treatment. It provides a method to apply a recovery-based approach, involving the whole family and team. It is the antidote to outpatient clinics and ward rounds.

Thirdly, Open Dialogue provides the basis from which to challenge many of the perverse incentives and restrictive practices that have grown up in mental health care out of fear of incident, media criticism or what a regulator might say. Such as staff spending more time documenting care than in giving care. The absolute adherence to risk assessment even though successive independent investigations show it to have limited predictive value. And risk management, which taken to extremes means that those who might possibly pose a risk to themselves or others, are cared for in inhumane conditions with no privacy or dignity, no sheets, cutlery, shoelaces, phone chargers or indeed any other item that someone somewhere has said might pose a risk. And yet we know that ligatures and weapons can be fashioned from almost anything. And that people who are ill, frightened and alone can be driven to do increasingly desperate things. The greatest risk management tool available is compassionate, skilled attention. Open Dialogue offers high quantities of that.

Open Dialogue is being used in a growing number of services in the UK. A research bid has been submitted and passed the first round of scrutiny. If successful, it will explore human, clinical and cost effectiveness, as well as developing a model that is scalable and sensitive to local circumstances.

I want to thank everyone at the conference for opening my eyes. Including Tracey Taylor, Simon Smith, Pablo Sadler, Lesley Nelson, Jen Kilyon, Russell Razzaque, Mark Hofenbeck, Julie Repper and Steve Pilling.

And to Corrine Hendy, who I first met at an NHS England event about putting patients first last year: Your journey from being locked in a mental hospital to becoming a skilled mental health professional, public speaker and highly effective advocate for Open Dialogue, is more inspirational than any you will hear on X-Factor. I want to repay the inspiration you have selflessly given.

I’m going to do what I can to spread the word.

 

How do you feel today?

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They say you should do something scary every day. I’m not sure. Although I do know that I need the occasional exhilaration of putting myself in an uncomfortable position and overcoming my nerves to make me feel fully alive. Such opportunities came along a bit too frequently when I was a chief executive. But these days I probably don’t scare myself often enough.

Today is the annual Time To Change #TimeToTalk day. Last night, the choir I recently joined held an open mike session. And I decided to terrify myself at the last minute by offering to do a turn.

Although I can follow a tune and love to sing, I am not like the other wonderful acts that got up and entertained us. I have no special musical talent. But I can talk about stuff.

So I found myself standing there and explaining to a packed pub why I had decided to join the choir. Which is that singing with other people is really good for me. Since school choir days, I have yearned to sing again in a choir. I am full of wonder at being part of something greater than myself. I love having to concentrate really hard in order to follow the music. It moves me when a piece we have faltered over suddenly comes together in glorious harmony. Singing with others of a much higher standard helps me to raise my own game. It feels visceral yet sublime.

And I told them about my history of anxiety and depression, and the impact it has had on me, off and on, over 45 years since I was 15. I talked about stigma, including self stigma. And I told them them that I knew I wasn’t alone, because at least 1:4 people in that pub were like me, possibly more. I told about the research of the positive impact of singing on mental well-being.

And then I asked them to join me and celebrate Time to Talk Day by talking to someone else about mental health.

How did it go? Well, I was nervous of course. But they were lovely. I got clapped and cheered. There were a few tears. And some lovely conversations later. I shouldn’t really have expected anything else. The choir is amazing and our conductor MJ is not only a multi-talented musician. She is also an inspiring, compassionate leader. She gets the best from all of us, as singers but also humans.

If you have experienced mental illness but feel shy about telling people in case they judge you, maybe you could do something scary today? Please think about taking the plunge and talking to someone about it, what you do to cope but also how it is only one thing about you. Talk to a colleague, a friend or just someone you happen to bump into. Use Time to Talk Day as your excuse. And ask them about their own mental health. Listen really carefully to what they say. I think you will be pleasantly surprised by your conversation.

And how do I feel today? I think you can probably guess :):):)

The ones left behind

It’s been a month for losing people from the soundtrack of our lives. David Bowie, Alan Rickman, Mott the Hoople and Bowie drummer Buffin, and Glen Frey of the Eagles. If there is a heaven, may they rock on up there together.

But ….I’m also weary of gushing eulogies from people who never saw any of them live. Public outpourings of grief about people we have never met started to grow to excess after Princess Diana’s death. And social media has allowed this to multiply. There is even fear of criticism among those in the public eye if, on hearing about a death, they don’t immediately tweet a brilliant yet touching epitaph.

I remember being told at school that “empty vessels make most noise”. It’s not the kindest quotation from Plato. But there is truth in it.

Perhaps I’m feeling less sympathetic because my small family got even smaller with the loss of a dear relative over Christmas. She was a very private person. I don’t have permission to say anything about her or other family members. All I can say is that I have been very sad. Which is horrible, although better than depression because it a clean emotion and has a point. It also puts the sadness I feel about David Bowie et al into perspective. I miss them being there. But I am not bereaved by their deaths because I didn’t know them.

When someone we know dies, whatever their age, we can help by remembering them with love and by caring for those closest to them who are left behind. There is usually a flurry of activity at the time of a death. Phone calls and social media messages can all help. Even better are letters and cards that the bereaved person can read time and again. The right words may be hard to find, but they can bring great comfort. I know this.

What helps even more is keeping in touch with the person who is bereaved. The first few weeks and months are bewildering and lonely. Bereaved people may seem to shun others, but they desperately need social contact. Most people will at some stage go through a phase of feeling angry, sometimes for being left behind, sometimes even directed towards the person who has died. This is normal. The loss they feel is raw and cruel. They need an outlet, someone to hear and acknowledge their anger and allow it gradually to dissipate.

Later, when they can bear it, they will find that they yearn to talk about the person who has gone. To go through photographs and remember things they said and did together. The kindest thing you can do for them is to listen really carefully, to show true interest, and do nothing to stifle these reminiscences. They are vital for the gradual healing process.

Sometimes being bereaved can make you feel like a pariah. People seem to cross the road to avoid you. You may no longer be invited to social events where you were once welcome. I have heard those who are widowed and parents who have lost children speak of the added pain this can cause. And it is so unnecessary. Grief isn’t catching. What difference does it make to have an odd number at dinner, for example, or for someone to attend a birthday party even if they no longer have a child to bring?

I hope the families of David Bowie, Alan Rickman, Buffin and Glen Frey encounter kindness, and have friends who stick around for them over the coming months and years. The accolades of fans will offer some small comfort. But like any of us, the thing they will most need is love and support from those close to them.

There are many ways to be a good Samaritan. And the best one is by being there. I send love to all who have lost someone dear. May their dear souls rest in peace. And may those who are left behind find comfort and kindness from others as they grow accustomed to their loss.

 

January can be a wicked month

Whether you call it Seasonal Affective Disorder, the winter blues, even depression, January can be a wicked month for those of us who have problems maintaining our mood. The combination of miserable weather, not enough light, post-holiday flatness and getting back on the treadmill can feel pretty grim.

So what to do? Reading breezy articles in lifestyle magazines might lead you to believe that the answers to your woes lie in spending money you almost certainly don’t have on new clothes, visits to spas, holidays or even a home makeover.

Such advice can make people like us feel even worse. As can admonishments to start a new you via a radical change to your diet, new hobbies or an unrealistic exercise regime. When we are feeling low, stuff like this plays into the isolation and hopelessness that already beset us. We know we probably should do these things, but we can’t because we believe we are hateful and lazy and useless and undeserving and anyway, there isn’t any point because nothing will ever get any better.

From my somewhat extensive experience of Januaries past, I offer an alternative list, proven, on the occasions when I have actually taken my own advice, to work.

  1. Stop being mean to and about yourself. You deserve kindness. Start thinking of yourself in a kinder way. When you find yourself putting yourself down and focusing on your deficits, turn this on its head and make a list of your assets instead. Practice being proud of who you are.
  2. Walk places, if possible every day. Walking is proven to lift our mood. It releases endorphins. And it’s free. The first ten minutes may be hard going but after that it will feel a bit easier. The rhythm of walking is soothing. It strengthens the heartbeat. And even if you find meditation impossible in the more usual way, walking will help calm any troubling thoughts.
  3. Tidy something small. Start by making your bed. Do the washing up. Put out some rubbish. Creating order in our surroundings helps to us to create order in our minds.
  4. Whatever you are doing today, do it to the best of your ability. Even if it something you hate, like cleaning or filling in forms. And at the end of the task, take pride in what you have achieved. Tell yourself you did well. And remember to praise yourself not for the outcome, but for the effort you put in to achieving it.
  5. Force yourself to talk to someone else. It may feel easier to hide away, but this is statistically proven to make things worse. Humans need contact with other humans. Parties and large groups can feel overwhelming unless you are at your best. Instead, arrange to have a cup of tea with a friend. Or pop round to see a neighbour. Ask how they are. And when they ask you, answer them honestly. If you are really isolated, think seriously about calling a helpline.

If you are feeling desperate, please, please seek help. Try this wonderful app created by Grassroots, a charity I am deeply grateful to be associated with as a trustee. Or call Samaritans,  who are there 24/7 to listen, without judging. They really can help. I know, as I’ve tried them myself in the past.

January can be a horrid month for many of us. But we can get through, if we are kind to ourselves and reach out.

Because, as the advert says, we’re worth it.

 

The hardest thing of all

I’ve been watching the desperately sad story unfold of the awful, untimely, preventable death of a young man with learning disabilities. Only those most closely involved can comment on what led to his death. But what happened afterwards has become extremely public.

Having done the job I once did, I feel the need to share some thoughts.  I know this may provoke strong reactions. But to be silent suggests complicity about unfair discrimination of vulnerable people, lack of compassion and the opposite of openness in how the NHS too often deals with mistakes. And I am not complicit.

The media, including social media, can be a massive force for good. The media can shed light on things that need to be uncovered, especially where the interested parties are far apart. And in the case of campaigning journalists like Shaun Lintern, they can help families eventually get to the truth. Although they really shouldn’t have to.

The NHS is at long last waking up to the fact that the public understand bad things can happen. The public know that the NHS is staffed by humans who, by dint of being human, make mistakes. And that there are risks inherent in almost everything that the NHS does or doesn’t do. They know some mistakes occur because staff are careless or stressed or tired or overstretched or poorly trained or badly led. And they are realistic; they also know that a small number of staff do terrible things deliberately. But the NHS still needs to appreciate that the public will not accept cover ups.

Below are some of my lessons on running services for vulnerable people, learned the hard way, by experience. And by not getting things right myself all of the time.

  1. Running NHS services is very, very hard. The hardest part is when things go wrong and patients are harmed or die in circumstances where this could have been prevented. It is what causes those in senior positions, like the one I once held, sleepless nights and to question our own fitness to lead. If leaders don’t have sleepless nights like this, they are almost certainly in the wrong job. Being a decent leader in one of these very hard jobs starts with having respect and compassion for those we serve. And the humility to admit mistakes.
  2. Leaders in the NHS need to be curious and ask questions. They need to seek the truth, however hard this may be. They should surround themselves with others who are curious too and not afraid to challenge their leader. They need clinicians of the highest integrity with deep knowledge of the care they are responsible for to advise them. And although NEDs and governors who pose difficult questions may occasionally be wearisome, good leaders know that such people are invaluable at questioning what might seem obvious and to upholding core values. I may not always have shown this, but it is what I truly believe.
  3. Some time after I left, I noticed that my old trust had been criticised for apparently taking too long to complete serious incident reviews. And I recalled my own occasional frustration at the length of time it took to receive outcomes from a review when I was desperate for answers. But now I’m thinking again. Investigating something properly takes time, especially when extremely distressed people are involved. Those investigating must be open minded and objective. They need to be released from other duties. They must not take everything they are told at face value. And they need the remit and backing to do whatever is needed to get to the facts. Timeliness is important, but not at the expense of uncovering the truth.
  4. I recall an attempted homicide by a patient. We were so concerned to find out whether we risked a recurrence that, rather than an internal investigation, we immediately commissioned a specialist independent organisation to investigate and report to us, with no holds barred, on the care and treatment of this patient. This informed us about some changes we needed to make. This approach was later commended by the coroner. But when a statutory independent review was eventually carried out more than three years after the incident, the reviewers devoted space in their report to criticising us for having commissioned that first report, even though they broadly concurred with the findings. There is no rule book for NHS leaders. You must work out what to do yourself. And often only learn with hindsight whether you got a decision right or wrong.
  5. The media onslaught that can occur after a serious incident can be all consuming and deeply distracting. The worst thing that can happen is that you are diverted from the real job, of providing good care and rooting out any that is less than good, into so-called “media handling”. I have been very close to getting badly distracted myself on occasions. My saving grace was probably having been a nurse first. But I don’t think that being a clinician is by any means essential to being a good NHS leader. Caring about what happens to patients is the only essential qualification.
  6. Apologising is never easy. But it can mean so much. Apologies should be sincere, whole-hearted, unqualified and platitude-free. They may not be accepted initially. They may have to be repeated, sometimes many times. The hardest meetings for me and those I worked with during my 13 years as an NHS CEO were with families whose loved ones had come to harm in our care. But I am so grateful to those people for giving me the opportunity to listen really carefully to them and to apologise to them in person. It may take a long time to achieve such a meeting, and sometimes several are needed. The effort is really worth it.
  7. The NHS is a microcosm of society and is institutionally discriminatory towards those who experience mental illness or have a learning disability. This is manifest in poor staff attitudes, low expectations, inadequate investment, silo thinking, paucity of data including comparative benchmark information on incidents, and the negative way the rest of the NHS treats those who raise concerns about such things. I’m doing my tiny bit as a volunteer to improve matters but there is so much more for all of us to do.
  8. Talk of “numbers” without benchmarks and other good quality comparators can also be a distraction. Every unexpected death of a vulnerable person needs to be investigated to see if it could have been prevented. And that takes resources, which are in short supply in mental health services these days where the brunt of cuts have been made despite all the rhetoric about “parity of esteem”. Coroners are also overwhelmed; it often takes years before inquests into such deaths are completed, which is agony for the families.

It really shouldn’t matter whether the person who died was young, talented, beautiful, courageous, funny or anything else. They were a person who mattered. My heart goes put to anyone who has lost a loved one, and especially to those whose deaths were in some way preventable. You have to live with “if only” for the rest of your lives.

And that is the hardest thing of all.

 

Welcome back

Hullo you.

So you’re back, are you? Please forgive me if I haven’t exactly laid out the red carpet. It’s just that the last time you were here, you caused havoc. It took me a year to deal with the consequences. You wore me out. My family and friends were extremely glad to see the back of you. My own feelings, as you well know, were more mixed. Because I recognised that you had, quite literally, become part of me.

What I can tell you, as you so cleverly insinuate yourself back into my life, is that I’m better prepared for you this time. I’ve done a lot of soul – searching. And I’ve had professional help. I have slowed down my thinking, and learned the painful lesson of sharing, with a few trusted people, that I’m not always OK, and in particular the devastating effect you can have on me if I don’t take care.

I’ve also made some new friends, who know you too, or someone like you. At great personal cost, they have developed ways of living in harmony with their cruel demon. I am indebted to the generosity of these new friends. I am even grateful to you, because, were it not for your last, most shocking visit, I would never have met these extraordinary people.

I have again only recognised your arrival with hindsight. A disapproving little voice whispering in my ear at my 60th birthday party, at the very moment I told those closest to me that I had finally got my mojo back, saying: have you? Have you really??

This makes me question myself. Was I pretending, all those months after I thought you’d left? Faking it till I baked it, as the saying goes? I don’t think so. Because faking is almost impossible with you around. My razzle-dazzle, such that it is, fades in your presence. My smile becomes less convincing when it is painted on. Plus, and this has been a very important lesson, pretending not only hurts me. It does damage to others.

This month, you appear a few times, in the small hours, when I should be turning over from the first refreshing sleep of the night and falling quickly back into the next slumber. Instead I become alert and watchful. At these times, you make me go over past failings, magnifying them out of all proportion. In the mornings, there you are again, a dank blanket, ready to spoil the day. Not every day, but enough of them to make me worried that soon, you might not be leaving.

Most wicked one, you mess with my head. You have ways of making me feel responsible for everything that has ever gone wrong that I have had remotely anything to do with, and for not doing enough to solve the ills of the world. You force to me go over and over stuff that makes me feel bad or sad, and guilty for my luck at any of the good things that have come my way. You tell me I am undeserving, selfish, lazy, intellectually weak, self-indulgent, tedious and evil.

And I believe you, to some extent, but not quite so much as before. Because I have learned about your psychological tricks. In a straight fight, I know you will always win. I need to listen to you, because occasionally you are right. After all, you are merely an extension of my conscience, aren’t you? I just mustn’t try too hard to placate you, or listen so much that I stop hearing others who speak more kindly to me.

As I’ve grown older, I’ve tried to take myself less seriously. To be less certain and to listen with greater care. And I’ve learned that to be kind to others, which after all is the whole point of having been put on this earth and being human, I must first be kind to myself. So I’m trying more of that now, mainly in my internal world, but also by sharing how I am feeling with those close to me and some of my newfound friends.

I’m not going to try to banish you from my life. I can’t; you are a part of me. But please don’t get big ideas. You are only a part. Despite your mean little voice telling me I don’t deserve professional care, I have again sought it. It is already helping. But in the end it’s up to me, and only me, whether I allow you to become my defining feature. I am determined that you won’t be. To achieve that, I must also never again pretend that you don’t exist at all. That is why I am writing this blog, for all to see. I will face you, and not allow you to win by making me feel ashamed of your occasional visitations. There should be no shame.

Welcome back, my friend. Today the sun is shining, and you are quiet. But I know you are still there, waiting for me in my weaker moments. And I’m ready for you.

I hope.

 

 

Sussex will never be the same. But we stand together

Saturday 22 August 2015, lunchtime. I’m looking forward to football – Brighton and Hove Albion v Blackburn Rovers. We got back from holiday last night. Steve has gone to Storrington via the A27 near Shoreham Airport to collect William from his cattery. They should have been home an hour ago. I notice via Twitter that there has been an incident at the air show affecting the A27. Slight anxiety till husband and cat return.

At 2.15 I set off on my bike to the Amex. The air is warm and still, the roads empty. At the stadium, we learn that kick – off will be delayed as the A27 at Lancing is shut both ways. Several thousand spectators fail to arrive. We win, not especially well. People keep checking their phones for news.The atmosphere is muted. Son, 28, hugs me spontaneously.

It is only the next day, as estimates of the number who may have been killed keep rising that the enormity of that Saturday moment really begins to sink in.

As I go about my Sunday, I think of those anxiously awaiting news. The names of two 23 year olds are released as the first to have lost their lives.They were semi-pro footballers at Worthing United, en route to a match in Loxwood. One was an Albion employee, both were Albion fans. Tony Bloom, our chairman, loses his composure as he pays tribute to two lovely boys. There will be many mothers like me feeling guilty for being thankful we have no-one missing.

Monday 24 August. On the Today programme, John Humphrys allows his exasperation at the dissembling of an aviation authority representative to get the better of him. He refers to the German Wings incident and talks of “Mad people getting into the cockpit”. A gratuitous, stigmatising link. I recall an appearance myself on Today earlier this year to challenge the German Wings coverage.

A planned day out with a friend to celebrate our 60th birthdays starts with an exhibition at the Imperial War Museum. The poignancy of the loss of young lives catches me unawares.

Much later on my way home, I check the BBC website. There are now six named dead or missing, at least five more to come. The A27 will remain closed all week. The West Sussex Coroner calls for patience; the scene of devastation is beyond comprehension, and identifying the bodies is painstaking work.

Tuesday 25 August. The national media has moved on. But Radio Sussex and our local paper The Argus continue to dedicate much space to the incident. The reporting is beautiful in its sensitivity and as far from sensationalist as you could hope. Careful attention is paid to those already known to be lost, those waiting for news, the ones involved in the clear up and local people who are just shocked and stunned. MP Tim Loughton does what leaders should in times of crisis and is present, calm and thoughtful in his comments. The police, ambulance, fire and rescue teams and volunteer helpers are heroic. The NHS is doing what it does best, saving lives, or trying to. News of the pilot isn’t good but people pray for him. There is no finger pointing. But there are understandable queries about whether vintage planes should be used in air displays over built up areas. The Shoreham Airshow as we know it may be no more.

We all have mental health. Events such as these don’t cause mental illness. But they affect our wellbeing in many ways. It’s wonderful to see Sussex Partnership and the rest of the NHS offering advice and help to those who need it.

And I’m pleased to see my friend Daniel from Brighton, Hove and District Samaritans speaking about voluntary support, including Samaritan volunteers who have been making themselves available to talk to distressed folk paying tribute to the dead. I can think of no-one better placed in such circumstances.

Thursday 29 August. This morning, two days after posting the original version of this blog, I get a call from Radio Sussex. They are doing a programme on Saturday lunchtime live from Shoreham Footbridge to pay tribute to all those who have died, been hurt, have helped in the clear-up or been otherwise affected in any way. Presenter Neil Pringle has suggested they ask me to appear in the programme. I couldn’t be more honoured. I will do my best to say things that will help people.

These are troubling times. Sussex has been dealt a body blow. How can we all help one another? By standing together, being patient, thankful, hopeful, and relentlessly kind.