suicide

Let’s keep on keeping on

We’ve had a mini mega-burst of mental health media already this week.

Surely a self-confessed mental health campaigner like me ought to be pleased about all this increased profile? Actually I feel three things:

Frustration

I feel frustrated and very angry for my fellow patients and erstwhile colleagues because of the cuts in care, both statutory and voluntary, that have led to the only “safe” place for people who are very unwell being in hospital, and to every acute mental hospital bed being full. It is not only cruel for the patients, it is deeply counter-productive. The young woman with a personality disorder languishing in an acute ward in North London (whilst funders slowly cogitate whether she should get a more appropriate service) is deteriorating daily and her problems are becoming ever more intractable and corrosive. If she had cancer, people would be doing marathons and having cake sales to support her. As it is, millions of people like her are seen by society only for their deficits rather than the assets that may lie buried deeply but are undoubtedly there. Parity of esteem? We’re having a laugh.

Love and gratitude

I feel huge love and gratitude to brave people like Professor Green for dragging mental illness and the stigma of suicide kicking and screaming out of the shadows and into the sunshine. I was moved by so much in Suicide and Me , including the rawness and vulnerability of the rugby coach as he bared his psychological all about feelings of worthlessness and what he is learning to do to protect himself from suicidal thoughts.

Today, the day after the programme was shown, I have a regular Board meeting with Grassroots, the small but highly effective suicide prevention charity of which I am a trustee. I love my fellow trustees and the amazing people who work and volunteer for Grassroots. We know what Professor Green has discovered for himself: suicide thrives where there is secrecy and shame. One of my shameful secrets used to be all those times in my life when I faked physical illness because I couldn’t get out of bed for feeling so hopeless, helpless and full of self-hatred that I wanted to stop living. It’s still very hard to ask for help, but many times easier now that I’ve outed myself. Bringing these shameful secrets into the sunlight and talking about them is our greatest tool to keep ourselves safe and to live a full and beautiful life in recovery.

Responsibility

I listened to All in the Mind this morning on iPlayer as it clashed with Suicide and Me. I salute the wonderful Claudia Hammond for dedicating her first programme of this series to young people’s mental health. I’ve written before about my concern that there is a lalala-I’m-not-listening response to the considerable increase in demand for children and young people’s mental health services. The programme takes a forensic interest in trying to find the reasons for this rise. There are various theories, mainly societal and social, but no conclusive explanation that could be used to stem the demand.

For staff working in these services, there is great anxiety – that they will miss someone extremely vulnerable, that the treatment they are giving is not sufficient, that they are spreading care and themselves too thinly. The pressure can feel close to unbearable.

We should be indebted to those who speak up about the challenge of working in mental health these days, like those on All in the Mind and the staff and leaders at Barnet Enfield and Haringey Trust on Panorama. Their courage and compassion shine.

These programmes stir up triggering thoughts and feelings in those who are susceptible. Social media can be a great source of support,  but only if you are open, which also increases vulnerability. Twitter and Facebook have been very active this week.

I’ve had many thoughts myself. And I’ve come to a decision. I have more to give. I’m going to look for new ways to continue to tackle the stigma that affects not only those of us who experience mental illness, but also the availability and capacity of services to be able to tackle problems early with effectiveness and kindness. Watch this space.

And in the meantime, here’s to everyone who does what they need to do to keep on keeping on.

Go us xxx

 

No them and us. Only we

Some people call antidepressants “happy pills”. I’m not keen on this description. In my experience, they slice the top and bottom from my emotional range and I feel neither happy nor sad. Instead, they bring a calm which is welcome but can leave me feeling blunted, even flat. I know others describe similar effects.

Antidepressants helped me go back to work very quickly after my breakdown in November 2013. Skilled care from my psychiatrist and GP, timely psychological therapy, and the kindness of colleagues helped even more. Plus an over-developed work ethic. For those lucky enough to have decent jobs, going back to work and feeling useful can play a big part in our recovery.

I mention this because I want you to understand my state of mind on 24th February 2014, 6 weeks after I went back to my job at the time, running a mental health trust. Going back to work was probably the hardest thing I have ever done; one day, I hope to feel able to share why.

Anyway, on this particular day, I attended a round-table event arranged by Time To Change. Had I not been on my medication, I might have felt the need to challenge what we were being told. Or wept. Because I and the other NHS leaders present heard stuff at that meeting that we desperately wanted not to be true. And yet deep down we knew it to be so. It was like learning about institutional racism. Only this time, it was institutional stigma and discrimination from the services we were responsible for towards people who use our services.

We heard that, despite the measurable shifts in attitude of the general public (published in July by Time to Change for 2015 and again showing small but significant improvement), attitudes within the NHS haven’t shifted. In some cases, they have got worse. And the places where they appear most entrenched, as reported by those who know, ie patients, are within mental health services. And it rang horribly true.

From this meeting was born a desire amongst a number of us to do something to change this. Five months later, at my retirement party, I listed some of the things I planned to do with my new free time. One of them was to offer my services to Time to Change to help tackle this intrinsic issue within mental health services. And although I planned to earn a modest living writing, speaking and coaching others, I wanted to do this work as a volunteer. I felt I had something to pay back.

It has taken time to set up the project. But now it is underway. Time to Change are working with two mental health trusts, 2Gether and Northumberland, Tyne and Wear. Like me, they are volunteers. The trusts were selected because they could demonstrate their readiness at the most senior level to address stigma within their own services with integrity, hard work and, most importantly for me, compassion. On the working group, which I chair, we have reps from the two trusts, four experts by experience, our full time project manager, senior colleagues from Rethink and Mind who together are responsible for running Time to Change, and two people from a social research company who are doing the work on attitude measurement.

You can read more about the purpose  and details of the project here on the Time to Change website, including quotes from those taking part.  And Community Care have published a piece about the project today.

Stigma towards those who need mental health support is alive and kicking within the NHS. It manifests itself with lack of empathy towards those who self harm or are otherwise in crisis, as described in the recent CQC report; low expectations from clinicians about future prospects for people who experience serious mental illness; lack of investment in research into new treatments; marginalisation of mental health in the way the NHS is planned and organised; and unfair treatment of mental health services by local and national commissioners in their expectations and funding decisions.

But I have high hopes. There is an absolute acceptance amongst those involved in our project that things need to change. And that instead of simply asking people who work in mental health to be more compassionate, that the change needs to start at the most senior level. We have sign – up for this work from the very top of NHS England, Mind, Rethink, Time to Change and at the trusts. And we agree that for staff to work respectfully with patients and treat them with optimism, expertise and compassion, they need to experience the same from their colleagues, including their most senior leaders, their commissioners and their regulators.

It was a long time ago that I was told by a nurse that I was a waste of space and that looking after me after I had hurt myself took him away from patients who were truly deserving of his care. At the time, I absolutely believed him. It took me many years to unlearn what he said. And it nearly broke my heart to hear, at that meeting back in February 2014, that such attitudes are still relatively commonplace today. The difference now is that we are talking about them. And acknowledging a problem is the first and most important step towards solving it.

Please don’t just wish us luck. Please join in and help us tackle stigma towards people like me and millions of others who experience mental illness from time to time. I’ve been off my antidepressants for several months now. I feel like the whole me again, which has one or two negatives but is mostly pretty amazing. And whilst I am doing lots of things to look after my mental health in my new world, who knows if I will need treatment from mental health professionals again one day?

Because there is no them and us. Only we.

 

Lisa’s ten mental health rules

Rules are made to be broken. And anyway, these days we have far too many of them. Those who work in public services have little hope of remembering them all.

Despite all that, I wrote this list in tribute to the wonderful work of @nurse_w_glasses. And Moses. It applies as much to regulators, commissioners, leaders in NHS trusts, local authorities, private providers and charities as it does to frontline staff.

And all humans.

  1. Thou shalt always remember that the mind and the body are intrinsically linked. There is no health without mental health. And mental health is everyone’s business.
  2. Thou shalt always present a positive image of people who need help with their mental health. It is nothing to be ashamed of.
  3. Do not take the name of people who experience mental illness in vain. Never use terms such as nutter or psycho, even in jest. We may pretend we get the joke, but inside we weep.
  4. As with religious practice, working in mental health requires humility. Do not be dogmatic or rush to judgement of others. Instead, practise acceptance and loving kindness.
  5. Honour the people who choose to work in mental health, whatever career you personally have selected. They have not chosen the easy road.
  6. Killing other people is illegal. Killing oneself is not, but it carries huge stigma and casts a terrible shadow over those left behind. Learn how to help prevent suicide. And never condemn those who might consider it. They need your understanding if they are to seek help.
  7. Mentally ill people can be trusting and vulnerable. They may lack inhibition. Never abuse a position of power physically, sexually, financially or psychologically.
  8. Never treat people who experience mental illness with anything other than compassion and patience. If they make you feel angry or mean, get some help yourself.
  9. Try to tell the truth about mental illness and the current state of services. This is neither easy nor straightforward. They need serious attention and investment in the UK. There are no quick fixes. But relatively little will go a long, long way.
  10. Be hopeful about mental illness. Those who experience it from time to time can lead full and rewarding lives, with just a bit of love and support.  Like me.

If I ruled the world…

In a previous life, I ran a mental health trust for 13 years. It was really hard, but it brought some influence to bear on something that matters very much, i.e. the experiences of 1:4 people, who, like me, are sometimes mentally ill.

In 2010, as Chair of the Mental Health Network, I shared a platform with Health Minister Paul Burstow, Paul Jenkins, then of Rethink, Sarah Brennan of Young Minds and others at the launch of the coalition government’s mental health strategy No Health Without Mental Health. In 2013, I met Norman Lamb (who took over the ministerial role in 2012) and a few other senior colleagues to discuss why it was that the strategy hadn’t completely worked, in our opinion. The shocking evidence of widespread disinvestment in mental health services was by then becoming clearer, rigorously uncovered by investigative journalists Shaun Lintern (HSJ), Andy McNicholl (Community Care) and Michael Buchanan (BBC). Who are heroes in my opinion.

In times of plenty, mental health services have received at least a small share of extra resources available. Professor Louis Appleby’s excellent National Service Framework was delivered from 1999 – 2009 through increased investment in crisis services, early intervention and assertive outreach teams. And it was strictly monitored. Commissioners and/or trusts who thought they knew better than the best evidence of what underpinned compassionate, effective care for people with serious mental illness were found out and given no option but to improve. The architecture that did this monitoring has since been dismantled. We are left with regulation, inspection, adverse incident reporting and stories in the media.

The pressure by local commissioners on providers to swallow the current disinvestment medicine is considerable. Mental health leaders who make a fuss are viewed as lacking loyalty to their local health system. Were the same cuts made to cancer or heart services,  there would be national uproar.

This tells us something, which is that stigma towards the mentally ill is alive and kicking within the NHS.

A true story: the other day, I mentioned the wonderful Alison Millar’s Kids in Crisis  programme to someone senior from NHS England. I could tell they were irritated to be reminded that very sick children are currently languishing in police cells or being shipped hundreds of miles around the country while desperate clinicians spend hours trying to find a bed. This person actually said that parents are prepared to travel all over the world looking for the best treatment for conditions such as cancer. So why should CAMHS be different? When I reminded them that this wasn’t about highly specialist care, just access to care anywhere, they blamed the failure on local services and moved on to share their insights with someone else.

So we have denial about the impact of disinvestment, as well stigma. And I realise that in my new freelance world, I have a different sort of influence.

Thanks to Paul Jenkins, now CE of the Tavistock and Portman Trust, for his blog this week on the paucity of investment in mental health research. Another example of how stigma is flourishing towards those least able to argue for resources. And to Andy McNicholl for his piece on the bed crisis in adult mental health services, mainly caused because people are being hospitalised when other services have closed, or there is nowhere safe for them to go when they are ready for discharge.

Regarding the NHS Five Year Forward View (5YFV) here’s my 6-point plan for making mental health more mainstream. With measurements. Because if you don’t measure, you can’t manage.

1. Suicide prevention

Make suicide prevention the business of every citizen of the UK. Stop blaming mental health trusts and their staff for failing to keep people alive. The responsibility is much broader than that. Locate suicide reduction planning with Health and Wellbeing Boards. Make it their number one priority, with proper support as well as sanctions for lack of progress.

2. Mental health within the NHS

Expect every provider and commissioner to make the care of people who happen to experience mental illness their explicit business. Start with primary care. Require every NHS employee, including reception staff and everyone who works in a commissioning organisation, to do a minimum 1/2 day training, with an annual update, delivered by experts by experience. Report on compliance via the annual NHS staff survey.

3. Integration

Require local systems to produce integrated commissioning plans for all primary and secondary services. Particularly crisis care; dementia; all major physical conditions such as heart disease, strokes, obesity, diabetes and cancer; neurological conditions such as MS and MND; and musculo-skeketal conditions including chronic pain. Draw on the RAID model for measurement. Allow organisational form to flower according to local need. But also require investment in integrated services through an annual reduction in organisational overheads, and increased investment in the third sector.

4. Public health

Reduce premature death rates in people with serious mental illnesses of up to 25 years by making mental health promotion core business for primary care and secondary health providers in the statutory and non-statutory sectors. Target supportive, evidence based obesity reduction, smoking cessation, substance misuse harm reduction and exercise programmes for people with diagnoses such as schizophrenia, bipolar disorder, PTSD and personality disorder. Set ambitious targets over the next 25 years and monitor hard against them to help turn around the life chances of some of the most marginalised people in society.

5. Making the business case

It is up to the NHS to articulate and prove the business case for a change of approach in welfare for people with long term conditions such as serious mental illnesses. Commission the best brains eg Professor Martin Knapp at LSE to put the evidence together. Which is that it is considerably more costly as well as more cruel to condemn people who experience mental illness to poor, insecure housing and limited, insecure income, and for them to appear frequently and often pointlessly within criminal justice services.

But these costs do not occur in one place. Creating exciting opportunities for engagement and volunteering such as The Dragon Cafe can help people move from being recipients to full participants. Placing employment specialists within mental health teams and incentivising pathways into work are also proven to be highly successful. The alternative, i.e. penalising those in need of help, is counter-productive. It forces people to have to make themselves appear less able, makes them reticent about coming off benefits for fear of never getting them back should they need them in the future, as well as being extremely detrimental to their long-term well-being.

6. Research and improvement

Shine a light on why so little is spent on mental health research, given the financial and life chance costs of mental illness. Do something serious ang longlasting to reverse this. And then measure the impact longditudinally. No-one says we’re spending too much on cancer research, do they? Use that as our benchmark.

AND listen to the eminent and brilliant Professor Don Berwick, who makes the point that inspection never improved any health system. We need to invest in improvement science, architecture and skills for the whole NHS, of which mental health is an intrinsic, integrated part. Calling something NHS Improvement doesn’t necessarily make it an improvement body, by the way. But it is a good start.

 

I’ve shared these thoughts with the fabulous Paul Farmer, CE of Mind, who is leading one of three national task forces set up to help deliver the NHS England 5YFV. The other two are on cancer and maternity care. I know he wants to do the best he can. But he needs your help.

If you are part of the mental health family, and I would argue that every human being should be, please join in. Let’s seriously increase our ambition for those of us who experience mental illness, and focus hard on a small number of really important things that will really change lives. And then let’s concentrate and not squabble amongst ourselves as we set about achieving them.

That’s how winning teams win, against all the odds.

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.