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Blessings

Books that have inspired me this year by @Suzypuss @jamestitcombe and @molly_speaks

To keep depression at bay, it helps to count one’s blessings. My Twitter friends are a very big blessing. Here are some thank you messages for 2015:

To campaigning journalists @andymcnicoll and @shaunlintern for supporting underdogs including mental health care and people with learning disabilities. Please never stop.
To Adam and Zoe Bojelian who lost their dear son @Adsthepoet in March 2015 but keep his legacy alive via Twitter. You are in our thoughts as you face a first Christmas without your wise, beautiful boy. We will never forget him and what he taught us.
To @JamesTitcombe who lost his baby son and has courageously campaigned for greater openness over mistakes in the NHS, despite some vile online abuse. I treasure my copy of Joshua’s Story. And I thank James for all he continues to do to make the NHS safer for patients and their families.
To all who bravely act as patient representatives, such as the indomitable @allyc375, and remind regulators, commissioners, managers and clinicians what the NHS is actually for. Only they know the cost of speaking up. Go Ally, @anyadei @ianmcallaghan @DavidGilbert43 and others who’ve earned the right to call themselves patient leaders.
And to @HSJEditor for taking a risk and running the first HSJ list of patient leaders. Thank you Alastair. I think it was a game-changer.
To those who’ve grasped one of the most feared conditions and are making life better for those living with it. I mean you, @dementiaboy and @dr_shibley. To you and others like you, thank you for refusing to leave dementia in the too-difficult box.
To @Liz_ORiordan who is generously sharing her experiences of breast cancer care, which for a breast surgeon is a pretty massive deal. And for some other stuff.
To @EastLondonGroup, who introduced many of us to a group of previously little known landscape artists from the early 20th Century. Sunday Morning, Farringdon Road has become a landmark of my week.
And to @penny_thompson, for pointing me to ELG and for always being true to her values.
To poet @Molly_speaks for painting pictures with words in her lovely new book Underneath the Roses Where I Remembered Everything
To @HPIAndyCowper, for his excoriating, original analysis of the NHS, and for his support to me in my scribblings.
To @clare_horton for running the excellent @GuardianHealthCare and even including some of my pieces. This meant so much.
To @seacolestatue @EAnionwu @trevorsterl @thebestjoan @pauljebb1 @joan_myers and many others for plugging away in the face of seemingly impossible odds. The Mary Seacole Statue will rise in 2016 as a permanent memorial to someone who showed how, if something matters enough, we should never give up.
To @nhschangeday @PollyannaJones @helenbevan dani_ellie @jez_tong @LydiaBenedetta @cjohnson1903 @WhoseShoes @fwmaternitykhft @DaniG4 @damian_roland and so many others for including me in NHS Change Day 2015. I was meant to be helping you but I gained many times more than I gave.
To @TimetoChange @suebakerTTC @paulfarmermind @carolinewild @danbeale1 @2gethertrust @NTWNHS @rethink @mindcharity and a whole raft more for being a major part of my life this year, working together to tackle the stigma that still exists within the NHS towards folk who, like me, experience mental illness from time to time but are so much more than our diagnoses. Here’s to you.
To @nurse_w_glasses @anniecoops @drkimholt @gourmetpenguin @AlysColeKing @DrUmeshPrabhu who show by words AND actions that compassion is alive and kicking amongst health professionals
To wonderful women leaders such as @SamanthaJNHS @BCHBoss @JackieDanielNHS @ClaireCNWL @CharlotteAugst @KMiddletonCSP @Crouchendtiger7 @DrG_NHS @VictoriBleazard @JaneMCummings @CarolineLucas @juliamanning @TriciaHart26 @clarercgp who stick their heads above the parapet and make the world a better place
And folk like @NHSConfed_RobW @ChrisCEOHopson @cmo @profchrisham @ProfLAppleby @WesselyS @nhs_dean @NHSE_Paul @ScottDurairaj @stephen_thornton @jhazan @rogerkline who prove that leaders on Twitter don’t have to be women to be fabulous
To bright, bubbly new leaders like @anna_babic and all those I’ve met via @NHSLeadership, who fill me with hope for the future. And to @Alannobbs @kirsti79 @NoshinaKiani and all the other great folk at the NHS Leadership Academy. You do stunning work.
To @GrassrootsSP and everyone who works to prevent the long shadow cast by suicide. Thank you.
To everyone who supported me in my bike ride for @samaritans in the summer. Especially @NurseEiri and @JackieSmith_nmc. They know why.
To @Suzypuss whose book The Other Side of Silence has inspired me to get on and finish mine.
To wise owls @johnwalsh88 @TelfordCC @KathEvans2 @gracenglorydan @timmkeogh @RecoveryLetters @profsarahcowley for being beacons when the world feels a bit too hard
To friends who also experience mental illness from time to time and who share their thoughts and feelings so generously. Thank you @BipolarBlogger @Sectioned @BATKAT88 @annedraya @clareallen @corstejo @schizoaffected @rabbitsoup_zola and many, many others. On a not-so-good day, yours are the tweets I look out for. You bring me hope.
If I could, I would add everyone else I’ve chatted with on Twitter this year. To everyone I follow and who follows me: Twitter is 97.5% good for my mental health, and that’s because of all of you. Thank you all so much. I wish you all much love for 2016. You rock :😎💃❤

What Recovery Means to Me

I wrote a piece recently for HSJ about the importance of recovery in the upcoming Mental Health Taskforce report. And it got me thinking about what that much overused but, to me anyway, beloved word “Recovery” means. Here are my thoughts.

Some people think that recovery is about getting better and then doing everything possible to forget that you were ever once unwell. But that would be a complete waste of the experience.
Our minds are like our bodies. They never forget being hurt or ill. If we let them, they will incorporate the scars from our experiences and use them to make us stronger and better people.
Recovery is about celebrating everything that has happened to us as an essential part of who we are, even those things that we may prefer to forget. This knowledge will help us as we face challenges in the future.
There are no sudden or miracle cures for psychological ill health. Recovery is slow, often unsteady, and at times very painful. That is why we should celebrate those who have achieved it as much if not more than those who have borne and overcome physical illness.
Sometimes we must go backwards in order eventually to go forwards, for example during therapy when exploring painful memories or damaging patterns we find ourselves repeating. And as with physical wounds, we cannot truly heal if we try to bury bad feelings deep inside ourselves. They have ways of getting out and causing harm at unexpected moments.
The word Recovery has nicer connotations than Rehabilitation. But they mean essentially the same thing. Recovery does not mean that everything is the same as it once was. That would be impossible. Even the healthiest and luckiest people encounter loss and pain from time to time. Recovery means harnessing the lessons we can learn from life events, however terrible, and incorporating them to make ourselves wiser, kinder but also more vigilant of the triggers that cause us pain or are the warning signs that we need to take care.

Like many of you, I am reading the excellent but troubling report by the King’s Fund into the state of our mental health services. I thought Stephen Dalton, Chief Executive of the Mental Health Network of the NHS Confederation was sharp yet lyrical on BBC Radio 4 Today in his analysis of what patients and staff are facing, and in his condemnation of the government and NHS England for saying one thing but apparently doing exactly the opposite at the same time. And that made me think as well.

It seems to me that our mental health services will forever be in a state of recovery. We cannot forget the changes we have experienced, including many hard-won and stunningly positive ones, particularly in the last couple of decades. But we also must face up to the damage that is currently being caused by the ongoing service cuts, and the havoc wrought by ill-thought through initiatives to save money or confuse prevention and early intervention with specialist care. Imagine the uproar if excellent cancer services were to be cut because money was being invested in health promotion and cancer screening instead?

These cuts to mental health services are carried out through fear on behalf of providers who get ferociously criticised if they don’t accept the unpleasant medicine willingly, and ignorance rather than cruelty on behalf of commissioners who are cushioned from the direct impact of the risks faced by patients and staff. The story on the Today programme of a dangerously ill man taken by ambulance to a voluntary café as a place of safety, who then had to wait 3 days with his desperate family before a hospital place was found was not a one-off. This is the result of too many bed closures alongside near collapse of community services in many places. We must face up to what is happening and not pretend it is all OK, or we risk slipping back all too quickly to the horrors of the past.

So we must be vigilant, wise and compassionate about the state of our mental health system. For me, compassion doesn’t mean keeping quiet. It means speaking up with intelligence, evidence and passion for something that matters more to me and to those reading this than almost anything else.

Let’s get together and let’s keep making a noise. Mental health services are not some luxury item that we can do without when times are tough. They are the essential bedrock of our society. In tough times, we need to invest in them even more.

Being able to say this with courage, conviction and purpose is what recovery means to me.

Please do this and please don’t say that

Since coming out about my on-off relationship with depression, I’ve lost count of the number of people who’ve asked me stuff and told me things. Some have been extremely helpful, some not so much.

Here’s my handy guide on what not to say to someone like me:

Please don’t ask “So why do you think you get depressed?” If I knew that, I’d fix it. I’m trying to find out, but it’s a work in progress.
Please don’t say “Have you thought about exercise?” You bet I have. And now I’m in recovery, I’d love you to come for a walk or bike ride with me. And see if you can keep up.
Please don’t say things like “When I retire, I’m worried I might get depression like you did. How can I avoid it?” I don’t know! What I do know is that depression isn’t caused by one thing. If you’ve got to this stage in life without experiencing it, chances are you never will. But I can’t make any promises.
Please don’t say “When I get depressed, I always…. (insert favourite pastime/exercise/indulgence.)” Thanks for the information, but you haven’t had depression. Or you wouldn’t say that.
Please don’t say ” Do you think talking/writing about your depression might make it worse/bring it on?” No I don’t. Sure, exploring this stuff is painful. But psychological wounds are like physical ones. They won’t heal if you simply cover them up. They will fester. To heal properly, wounds need sunlight and oxygen. Being open is the antidote to the nasty old stigma which makes people who don’t experience mental illness feel embarrassed about it and people like me who do feel ashamed.
Please don’t say “I never thought of you as the sort of person to get depression. I always thought you were so strong.” Yes. And that’s part of the problem. If you read Tim Cantopher’s Depressive Illness: The Curse of the Strong, it will help to invert your thinking about depression. As it did mine.
If I’m not on medication, please don’t tell me that I should be taking it. If I am, please don’t pass judgement, or ask if I have thought about talking therapies instead. And please don’t call antidepressants “happy pills”. People with physical illnesses such as cancer or heart disease don’t need well-intentioned, uninformed amateurs to opine on their treatment. People with mental illnesses are the same. It is neither good nor bad to take medication. It is just sometimes an essential part of getting better or staying well.
Please don’t say “You seem too jolly/optimistic to get depression.” Again, do read Tim Cantopher. Depression is rarely a permanent state. For me, the stark contrast between how I feel when depressed and my state when well is close to unbearable.

Depression isn’t the same thing as sadness. In my case, it is a combination of self-loathing and emptiness. But we are all different. See my letter to you for further info. It includes the details of the book I mentioned above.

Having listed some Please Don’ts, here is a precis of what I have found, through experience, really helps.

Do please:

Hold my hand when I need it
Be patient
Listen carefully and don’t overreact
Resist judging
Encourage me to seek professional help if I seem to be going round in circles
Tell me you won’t allow me to let this thing define me
Avoid defining me by it yourself
At the same time, allow me to incorporate it into my life.

Like anyone who experiences any form of mental illness, be it lifelong or more fleeting, I am so much more than it. But it is also part of me. I am learning to accept this, as I hope you can too. Not for me, but for the 1:4 people who experience mental illness from time to time. Because this is the only way we will truly eradicate the stigma that so besets us.

Thank you for your kindness in reading this. It means a lot.

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.

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.

Let’s not rush to judgement over Kids Company

I haven’t read every article on the demise of Kids Company. But I’ve read a few. They seem to fall into two categories: how terrible that this should have been allowed to happen. Or that its founder and chief executive Camilla Batmanghelidjh had it coming.

The truth will invariably lie somewhere in between.

I saw Batmanghelidjh speak at the NHS Confederation Conference a few years ago. I was an independent director of the organisation and felt uncomfortable, not so much for the paucity of her delivery (she read her speech of mostly incomprehensible psycho-babble and didn’t connect with what should have been a supportive audience) but more because of her intemperate, unjustified attacks on the services provided by some of our members. They had no right of reply. Nor did they enjoy her freedom to act outside clinical guidelines or good governance.

The following year I met a member of her executive team at another event. Again, psychological gobbledygook was passed off as groundbreaking work. The speaker couldn’t enumerate how many young people were being helped or what this nurturing cost or even consisted of. But she urged us to meet Batmanghelidjh, and appeared to be more than somewhat in her thrall.

I also read a recent leadership article in which Batmanghelidjh spoke in her own words of her legendary poor administration skills, how she needed not one but 5 PAs to keep her organised, and that her office was an extension of her large, warm personality and had been decorated accordingly. The photographs supported this and I recall wondering who had paid for the extraordinary artwork and upholstery.

I have been a trustee of several charities. And it doesn’t matter how small or niche you are, the first rule is that you must follow the rules of the Charity Commission and work towards creating a surplus which will act as a cushion should something go wrong with your funding or some other disaster occur. Small charities should have at least 3 months operating surplus available in cash, larger ones a minimum of 6 months. Why the trustees at Kids Company thought they were exempt from such sensible precautions is hard to say. Alan Yentob and the other trustees must carry a considerable burden of responsibility for the sudden collapse of this high profile charity.

Many people are rushing to put the boot in, as well they might given the patronage Batmanghelidjh enjoyed from senior members of the government and warm-hearted celebrities. This is no doubt fuelled by jealousy because she was such a smart operator. The sight of her continuing to attack and blame dark forces for her fall from grace throws some light on how she used guilt and guile to attract money for a cause that most of us struggle with, i.e. the mental health of children and young people.

Nevertheless, we need mavericks like her. She may have been economical with the truth about how many young people Kids Company helped. And what they did there may have been less than mainstream. But she has highlighted that there are young people that traditional services are simply not reaching, and that these services are in any case stretched beyond all limits. For that we should applaud her efforts.

I hope that the young people Kids Company helped will find support elsewhere. And that we all wake up to the fact that, if we don’t invest significantly in the mental health of our young people, we are setting the whole country up to fail.

Camilla Batmanghelidjh and others at Kids Company should be considered on their record. Let’s wait for whatever reviews that eventually come out, and not judge any of them, kindly or harshly, until then.

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.

I will not cease from mental fight

Sarah and Thomas, Seth and Lisa outside Dragon Cafe

Being freelance has many joys. One is being able to follow-up interesting invitations as quickly as I please. I met Sarah and Thomas Tobias at the Design in Mental Health Conference on 19 May 2015. Her description of The Dragon Cafe was really appealing. So yesterday I found myself there. It happens between 12.00 – 20.00 every Monday in the crypt of St George The Martyr Church in Southwark, London SE1. And it is like nothing else I have ever experienced.

In two large basement rooms plus limited outside space, an average of 220 people a week drop by to take part, free, in many activities including art groups, various dance classes – yesterday was a brilliant African dance session – Tai Chi, mindfulness, chess, well-being sessions, massage, creative writing, or just chilling out. Some chat, others sit or lie quietly on beanbags. Some are clearly not as well as others, but everyone attends as an equal voluntary member. I have signed up, as have 4,500 others who have attended since the cafe first opened in October 2012.

An important part of being a cafe is the food, which fills the air with fragrant herbs and spices to tempt any appetite, served with care on china plates and eaten at comfortable tables kept clean and fresh by volunteer staff. I ate a delicate cauliflower and vegetable stew with brown rice. It cost £5. I could have had soup with artisan bread for £2, tortilla with a bowl of salad for £4 or beans on toast for £1. I also spotted brownies, flapjacks and scones, all freshly made. For many members, this is the only opportunity in the week to eat home-cooked food.

The cafe is organised by Mental Fight Club, a charity which found its roots in the work of poet Ben Okri who himself was inspired by William Blake, and by Blake himself, whose words taken from Jerusalem I have used as the title of this blog. The charity embraces difference, and seeks to work in a complementary way with statutory services. They have achieved funding from the Maudsley Charity, Guy and St Thomas’ Charity and Southwark CCG to keep going despite swingeing cuts to voluntary services elsewhere. Long may they continue, because they are enabling people to live well and stay well, and to cope with life at times when they are less than well.

Increasingly, I am drawn towards magical realism in my creative reading and writing. Something Matt Haig said the previous day on Twitter chimed with what I heard and felt yesterday:

Annoying it always takes an Ishiguro or an Atwood to make people understand that even if something isn't realistic it can still be real.

— Matt Haig (@matthaig1) June 8, 2015

We need to open our minds to how we help people. I believe strongly in the need for NHS mental health services to be properly commissioned, funded and supported. But the NHS cannot and should not do everything. The voluntary sector, when it is good as The Dragon Cafe, can make the difference between existence and enrichment and fulfilment.

And it can teach the NHS how to do things. I wasn’t surprised to learn that Mental Fight Club has been working with senior psychiatrists in training to provide a safe space for them to explore the dilemmas and trauma they experience in the course of their work. If you didn’t see Alison Cameron talking about what happens if you don’t support staff who experience trauma, I highly recommend her session here:

What Alison said made me think very hard about how we do, and don’t, support staff who daily deal with matters of life and death, and sometimes feel traumatised because they cannot achieve what they consider to be optimal care. Inspection, standard setting, performance management, serious incident reporting, root cause analysis, NICE guidance and all the rest are, may I say, not the whole or even the most important part of the answer. Only by recognising the needs of those doing the caring, and meeting these in ways that are meaningful to them will we truly design compassion into public services.

Do visit The Dragon Cafe. You will see what I mean.

“I will not cease from Mental Fight,
Nor shall my Sword sleep in my hand:
Till we have built Jerusalem,
In England’s green & pleasant land.”

Mind the gap

It is Mental Health Awareness Week 2015. The theme is Mindfulness. These thoughts occur:

Mindfulness is a very helpful practice for those who can use it. But it won’t work for everyone, particularly if you are severely depressed or agitated. Seek advice from your GP or a therapist if you are unsure. And don’t believe everything you read about it on the internet – good or bad.
Mindfulness grew from the Buddhist tradition of meditation. You don’t have to become a Buddhist to use it. But in my experience, embracing some of the aspects of Buddhism, particularly loving kindness, really helps.
Mindfulness is like any exercise. It requires frequent, regular, focussed practice. Practice won’t make you perfect, but it will help you improve. As with physical exercise, I find myself making excuses not to do it, but usually feeling better when I have.
Becoming more mindful isn’t just about the allocated meditation period. You will gradually carry the increased serenity achieved through the meditation into your other activities and interactions. For me, this includes listening more carefully, eating more slowly, and appreciating loveliness in small things that would otherwise pass me by.
You don’t have to go to a class or retreat, but a short course will undoubtedly help you develop the discipline to practice. There are Mindfulness CDs and books to get you started. Here is a good local resource in Sussex with links to other sites.
Some people think Mindfulness is a panacea to make us more passive and accepting of bad things that happen to us. It isn’t. It is an exercise that helps us focus on what matters and become more effective in tackling personal and political challenges.
People who teach Mindfulness do not sit in judgement of those who do not. Nor do they advocate it as an alternative to prescribed medication for mental illnesses. Far from it.
Mindfulness can help people with no history of mental illness, as well as those (like me) who need help to stabilise our mood, lift depression and assist us to take control in our own recovery. It is powerful because it helps us manage our own negative thoughts. I use it in combination with what I have learned through Cognitive Behaviour Therapy (CBT) and other psychological insights gained through therapy.
My current negative thoughts include worrying that I am too psychologically weak to manage to come off my antidepressant medication. I hasten to add that I am doing so under clinical supervision. Today is my 2nd no tablet day for 18 months. My Mindfulness practice this morning was about recognising my own strengths, and counting my blessings such as having a loving family and a sympathetic, skilled GP. Plus accepting the temporary side-effects (feeling swimmy-headed and a bit fragile) as a necessary cost to achieving my goal. And reminding myself that if/when I need meds again, it won’t be a sign of moral weakness.
Mindfulness based therapy can be extremely useful for people who hear voices – voices that may or may not be symptoms of psychotic illnesses including schizophrenia. Some of my ex-colleagues wrote this lovely self-help book about using Mindfulness and CBT to manage such troubling voices.
One of the inequities of our health system is that people who would benefit from effective, life-saving and life-changing psychological therapies do not always receive them. Imagine the furore if there were cancer treatments that were known to work but were only offered to a small percentage of those who would benefit. Now that I am a free agent, I am campaigning to improve access to the right mental health treatments. And as I said last year, I can be difficult to ignore.
If you are one of the 75% of the population who didn’t vote for the new government last week, you may describe how you are feeling at the moment as depressed. Some people will point out that this isn’t clinical depression. I don’t personally mind what you call it (see my last blog). I simply note that Mindfulness might help you focus on what to do now so that you don’t feel the same way in 2020.

So why not give Mindfulness a try?

Happy mental health awareness week!

Are you feeling sad about the election?

The exit polls turned out to be right. And whilst Conservative and Scottish Nationalist supporters are ebullient, I’ve lost count of the number of people who have remarked on social media that they feel really depressed.

For the majority saying this, the feeling they are experiencing isn’t depression in any clinical sense. It is disappointment, sadness and loss. It is a normal grief reaction to something shocking and unexpected, which dashes hopes for the future. And it re-introduces and even expands fears that people who were hoping for a better result for Labour, the Lib Dems, the Greens and even UKIP had overcome, albeit just for a short while.

The five stages of grief model described by Dr Elizabeth Kubler-Ross was not intended to be prescriptive. It was an extremely well-received description of how people who are terminally ill get used to the idea of their own impending death. The stages of grief described are Shock, Denial, Bargaining, Anger, and Depression, better described perhaps as deep sadness. This, in time, leads to Accommodation/Acceptance. Depending on the nature of one’s loss, grief has to run its course. It is possible to get stuck at any stage, and for stages to have to be repeated. Trying to avoid the anger or sadness phases by keeping busy and pretending to be OK can be psychologically damaging; I have form on this myself.

There will be people today who will undoubtedly be at the start of a significant grief cycle, including the 3 party leaders who have resigned, those who have lost their livelihoods, and those closest to them. For the majority of the population, though, the cycle will pass quite quickly.

Some people are already into the angry phase; this is can be when blame gets sprayed about and bad decisions made. It is a time when we are advised not to make big decisions.

It is also important not to get stuck at the anger phase. Those who have learned to attribute responsibility for bad things that happen to them to others can waste huge amounts of energy re-traumatising themselves and failing to realise their own power to effect positive change.

Some people who experience mental illness get annoyed about the misuse of the term depression to describe feelings they see as relatively trivial compared to the self-hatred and hopelessness of clinical depression. I used to be one of them, but these days I am less fussed. As long as people understand that one word can have many meanings, I am more than happy to share it. But I do want everyone to understand that there are no such things as happy-pills. If you aren’t clinically depressed, anti-depressants won’t make things better. Only you can do that, by getting to know yourself, and being kind and compassionate to yourself and to others.

It is tough advice, but as Maya Angelou said:

If you don’t like something, change it. If you can’t change it, change your attitude.

The brilliant thing about our democratic system, apart of course from actually having one, is that MPs may only be elected by some of their constituents. But they are there to represent all of them. Occasionally they just need reminding.

I’m consoling myself about the the loss of the rainbow coalition I fondly imagined by thinking how to keep mental health on the agenda of the Conservative government, as they promised us during their election campaign. We have to make the business argument that investment in mental health treatment and support saves money in the long run. As well as the compassionate one about saving lives and making those lives worth living.

It is wonderful that there are millions of us who care enough to do the same.

Lisa Says This

Using what I've learned to help others