stigma

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.

 

Nobody said it was easy…

My last blog was about the launch of the Time to Change project, working alongside two volunteer mental health trusts to tackle the stigma within mental health services. It got lots of positive comments. And a few negative ones.

In the interests of improvement, I thought I’d share the latter, see what I can learn from them and also offer my response.

The comments fall into three broad categories.

1.People who do bad things need calling out. That is the essence of accountability. This project ducks the issue.

I understand what you mean. And I agree. If someone has done something wrong, they should account for their actions. That is what any fair and just system is based on.

But…We are talking about attitudes. And it isn’t possible to change these by telling people they are wrong. And shaming or even punishing them. It doesn’t work. It can actually entrench those attitudes.

The Truth and Reconciliation Commission in South Africa recognised this. It sought to use compassion and forgiveness to build bridges between groups who had done terrible things to each other. Archbishop Tutu used the learning from this work to build his worldwide Tutu Foundation, which teaches mediation to troubled nations and groups. Underpinning it all is his belief that people are made for goodness.

Time to Change has worked on this basis since 2007. They use facts and compassion to help change attitudes. They have had significant, measurable success. This project is no different. Facing up to what is wrong is not ducking the issue. It is honest and truthful and has taken huge courage. Changing things requires sensitivity and compassion. And that’s how we will be working.

2.Teaching staff about mindfulness and compassion is bollocks. It doesn’t work. There is a “happiness industry” out there ripping public services off and laughing all the way to the bank.

I use mindfulness myself, and am proud that my ex-colleagues at Sussex Partnership have been offering mindfulness-based CBT and mindfulness meditation to patients and staff on an increasing basis for the past 5 years. It does work. There is a large evidence base.

But I agree it is not a panacea. Nor does it work for everyone. Mindfulness doesn’t fix poverty, a housing problem or unkind treatment from someone else. What it does is enable you to control your emotional response to such challenges and not allow them to define you.

Our project will use a range of methods to help staff bring their whole, most compassionate selves to work. It won’t duck from identifying the cultural, organisational and external factors which affect the delivery of compassionate care. And this won’t be easy. But we are determined not to paper over problems.

3.Someone like you (me) who has had an occasional bout of depression has no idea about the stigma of serious mental illness. Thinking you are helping by disclosing your own experiences is self indulgent shit.

You have touched one of my rawest nerves. I shared your view for many years, which was why I kept my depression to myself. Added to that, I truly didn’t believe what I experienced from time to time was depression. I thought of it more as my own moral weakness and laziness. Words like self-indulgent were designed to perfectly describe me.

But now I’ve had some really effective therapy. I’ve learned that I’m not a bad person. And that my response to distress and dissonance is to turn in on myself with self-hatred that is greater than anyone else can ever feel towards me. I become my own worst enemy. This is a major aspect of my depression.

It is true that I don’t have the longterm effects of an illness such as schizophrenia to contend with. But just because I’ve managed to muddle through my life and have achieved a few things despite not infrequent bouts of depression doesn’t mean it has been easy. Judging me for not being more disabled is pretty sick, when you think about it.

So I’m going to continue being open about what I do to try and stay well, which I am at the moment, and about what it’s like when I’m not. And I’m going to listen to the thousands of people who have told me that coming out has helped them be more open. Rather than the handful who judge me as self-serving.

At least, that’s what I will try to do.

I’m looking forward to sharing these thoughts with members of the project working group and to hearing their own experiences and challenges. I’ll keep you posted on how we are doing.

And my final thoughts? Nobody said this project was going to be easy. But nothing worthwhile ever is.

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.

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.