compassion

Don’t be mean*

In my blog last week, I mentioned that my next one might be contentious. This is it.

Tonight, Health Service Journal (HSJ) have announced their inaugural list of Patient Leaders.

I am stunned to be on it. Plus a little bit anxious and also prouder than I have felt for a long time. Here’s why.

I’ve been on a few lists in my time. I remember the first one of influential women in the NHS. Some of us got a bit of stick for that, as did HSJ – “What about the influential men?” came the cry. Take a look at the top of the NHS, and you will see why there is a need for a list with just women on it. Even more so for Black and Minority Ethnic NHS leaders. Hats off to @NHS_Dean who has been open about changing his mind recently regarding quotas on Boards. It’s not too late to join him.

There are many other reasons why such lists can cause controversy. One is that they seem to include all the obvious people, who have reached positions of influence “just” by the nature of their jobs. Who have apparently been in the right place at the right time. Whose mistakes haven’t yet caught up with them. Or who are lucky enough to have a face that “fits”.

I’ve been there and even made such remarks. And I know that, although doing so might have made me feel better about not being on some list or another myself, it also introduced a tiny chip of meanness into my heart which I then had to work very hard to eradicate. Or it risked undermining me and any future good I might bring to bear.

To the people who are feeling mean about this latest list, I say this. Yes, some of the names on it may seem obvious to you. But only they know the personal cost of being there. And yes, there may be some, me included, who are relatively late entrants to the patient leadership world. But that doesn’t make them, even me, unworthy, nor does it in any way diminish the extraordinary contribution of those who have been doing this labour of love for much longer than the rest of us.

Being a member of an exclusive, perhaps even excluded club may feel good, especially one whose purpose has been to act as a ginger group. But patient leaders are doing work that is too important to remain on the outside looking in. One day, and I don’t think it will be all that long, we will see experts by experience appointed into paid leadership roles right across the NHS and care system, as a matter of course. We must of course protect their independence. But we must also stop seeing them as an optional, expensive, fortunate and patronised extra.

There is nothing I did throughout my 41 year NHS career that was harder than sharing my own experiences of mental illness, facing up to going back to work after my last episode of depression, and then retiring, I hope with dignity, to forge a new career as a writer and mental health campaigner. I know it will have been equally hard for others to have followed their personal, not always chosen, path.

So let us warmly thank EVERY patient and carer leader for the courage, wisdom, creativity and generosity they bring to improve our less than perfect, still beautiful, deeply precious NHS. And to all those on tonight’s list, here’s to you. I feel humbled to have joined your extraordinary ranks.

*With thanks to the extraordinary Kate Bornstein, whose philosophy on life is “Do whatever it takes to make your life more worth living. Just don’t be mean.”

 

Please don’t walk by on the other side

Suicide is one of the last taboos. So much so, that some internet service providers (ISPs) block websites that name it, for fear they are pro-suicide or that just mentioning the word may somehow encourage it. Even my little blogsite has been affected. Thanks to those who told me about two ISPs who were blocking me, and to BT who fixed it fast. And thumbs up to Virgin Media whose initial excuses were unimpressive, but who sorted it out eventually.

I was thinking of the taboo of suicide when I met some wonderful people in Devon recently. Some had been directly affected by suicide, such as the couple who lost their 18 year old son in 2011 and now campaign to raise awareness, and promote a young people’s helpline and two excellent training courses, Safe Talk and ASIST via suicide prevention charity Papyrus. Some were like me and experience suicidal thoughts from time to time. And some were just good, kind people who help others in their chosen careers or as volunteers. They are all part of the South West Suicide Prevention Collaborative.

I shared some of my personal story with them and why I believe now more than ever that preventing suicide is everyone’s business. It is definitely not just the responsibility of staff who work in mental services, who can get blamed for not keeping someone alive, rather than praised for all the times that they have. Staff need support at such times because they feel devastated at the loss of a patient who they care about deeply. How can we expect them to be compassionate to others if we treat them with so little compassion?

Actually, this applies to all of us. Telling people who work in public services to be more compassionate while treating them without dignity, respect or kindness is the ultimate irony. And yet it is played out in many places every day. Including much of the media.

I said something at the event that isn’t currently fashionable. I don’t think it is is possible to prevent every death by suicide. But I do think that we can do very much more IF we make suicide prevention the business of families, friends, neighbours, schools, workplaces, all public services rather than just the obvious ones, the media, shops, cafes, bars, the voluntary sector, faith groups, social groups, sports clubs…everyone. And if we talk about it with more understanding and less rush to judgement, I believe we will gradually lose the taboo. But we still have far to go.

It isn’t just those of us who experience mental illness who think about killing ourselves. Death of a loved one, job loss, other sorts of loss, crippling debt, loneliness, isolation or an overwhelming sense of hopelessness about the future can all be causes. One of the people at the Devon conference spoke bravely about the corrosive impact of the downturn and benefit changes on those who are least well-off.

Only those who have been directly touched by suicide can possibly know just how raw and awful it feels. It is a grief like no other, because of the guilt and the shame that is still associated with it. I don’t get cross about those who still describe the act as “committing” suicide. They usually mean no harm. Suicide hasn’t been a crime since 1961, but we have some way to go to incorporate that change into our values, attitudes, behaviours and language.

I have spent a lot of my life being ashamed of having occasional suicidal thoughts. I was lucky to learn about Samaritans via an article in Reader’s Digest when I was 15, the same year I saw my first psychiatrist. Their kind, wise volunteers have helped me several times in the past. I even became one myself for a while in my early 20s. But I was going through a rough patch and left without explaining why.

Now it’s payback time. I’m doing a big bike ride to raise money for Samaritans. Apart from a handful of staff at their HQ, all Samaritans are volunteers. Like the two lovely women who spoke at the Devon event about the work they are doing in local schools to raise awareness and offer support in the event of a death by suicide. I am donating my £500 fee from the event this week towards my fundraising target. Every penny I raise will go to keep local branches across the country running and to pay for the calls desperate people need to make. I have a big birthday in August. I’m asking my family and friends to make donations in lieu of presents. I can’t think of a better way to celebrate reaching 60.

We can all help one another. That man sitting on the station platform all alone? How long has he been there? Could you get over your reluctance to appear interfering and take a moment to ask him how he is? What about the elderly neighbour whose partner has recently died and who hasn’t been seen for a while? The young person at work who takes frequent days off? The friend who has been made redundant? Even the chief executive who has apparently made a mistake and is getting a mauling via social media. We can all do our bit to be kind, because that is all it might take to save a life.

And as we say at Grassroots, the wonderful suicide prevention charity in Sussex of which I am a trustee, here’s to life.

It could be you

I’ve had a mixed week. Yesterday I was in Leeds with people who mainly work in the local NHS, voluntary sector and local authorities and share an interest in helping vulnerable people. The conference was called #puttingPeoplefirst. It was enlightening and uplifting. I observed a groundswell of support for a different way of being at work, where people bring their whole and unique selves to bear on issues that matter, where failure is seen as an opportunity for learning rather than a weakness to be vilified,  and where treating patients/clients/service users with deep and real compassion is underpinned by working with love and compassion with one another.

Sounds a bit wooly and Buddhist for you? Then listen up. There is an increasing body of evidence that staff, from cleaners to chief executives, who are encouraged to operate with integrity and openness provide better, safer, kinder care. And this stuff isn’t new. Thank you @jackielynton for reminding us of our old friend Donabedian, who wrote wisely about improving quality before anyone else had thought of it, and said that it started with love.

If you don’t already follow @johnwalsh88 on Twitter or read his Yes To Life blog, and you like the sound of the conference, I’d encourage you to do so. I cannot thank John enough for inviting me. Or to the other organisers and speakers and to everyone there who was so honest and kind, including when they challenged one another.

Meanwhile, in another part of the forest,  a senior public servant has selflessly stepped down from a job they openly loved despite having done absolutely nothing whatsoever wrong, and indeed a considerable amount right, in order to meet the political ends of people who appear simply to be throwing their weight about. And is being vilified online for it. What does that say to the thousands this person leads? Are they at similar expedient risk?

And in yet another part of the forest (I do like that saying, please tell me if I overuse it) senior people who should know better have been talking about “Never Events” as if by giving something a threatening – sounding name, it will stop it from happening. Actually, what it does is make staff very, very scared. And scared people are less creative and more likely to cover bad things up and to go off sick with stress. Or worse, come to work when they aren’t psychologically fit enough to care for themselves, never mind others.

Here’s a precis of what I said at the conference about authentic leadership:

  1. Bad things happen. Good leaders look after their people at such times. We live in a blame culture so this is very, very hard.
  2. The more rules and procedures you impose, the less creative and compassionate your people will become. Resisting the external demands to introduce even more is also very hard.
  3. We performance manage and inspect individual organisations at the expense of the good of the collective system, and the patients who struggle across the bits of the system. Moving to a more collective approach is a goal we could all agree on. But what about accountability, comes the cry. Or, who would we blame when things go wrong?
  4. There is a leader in all of us, whether we are a patient or family member, work on reception or sit at the board room table. Work hard, if needs be against the grain, to be defined by what you do best, not by what scares you most.
  5. Bring all of you to what you do. It took me far too long to learn that being all of me, including the bits I was less proud of, even ashamed of, made me a more authentic leader. Don’t try to hide your imperfections like I did. It’s an added burden when things are hard enough already.
  6. Many people are privately saying that everything now isn’t right, and some things intended to improve care are actually conspiring to make it less compassionate and safe. If you agree, find the courage to speak truth to power, which is what I am trying to do in this blog.

If you are in a leadership role and you see a colleague who is having a tough time, please don’t metaphorically cross to the other side of the road as though they had some toxic disease you might catch. And please don’t believe the shit you read online or even join in the anonymous bear – baiting that passes for acceptable comment these days. Instead, offer them your genuine support.

Because you never know, one day, it could be you.