Time to Change

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.

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.

 

 

 

Ignore Russell Brand and vote for mental health

I start by declaring an interest. I really like The Right Honourable Norman Lamb. He knows his stuff on mental health. His values are sound, and he is an unassuming, witty and extremely kind man. He has also been dealing with distressing family issues and still managed to maintain focus on his job as Minister of State for Care and Support. Senior staff at NHS England such as Professor Sir Bruce Keogh vouch for him “holding our feet to the fire on mental health.”

Yet I became tetchy on reading the Liberal Democratic manifesto mental health promises yesterday. It feels a bit rich that a party that has been in power for a full parliamentary term, albeit as a junior partner in a coalition, should be making promises now after 5 years of not making these things happen.

My supporting evidence:

  • I:4 of us will be mentally ill in any one year, according to the Mental Health Foundation. Yet mental health services are still the poor relation within the NHS family, missing out on new money and bearing the brunt when public sector “efficiencies” are required, as they have been during the last parliament. Under the coalition, this imbalance has grown measurably worse. The funding promises made in yesterday’s Lib Dem manifesto will to some extent redress the balance – but only if they come to fruition.
  • I will need persuasion to believe that we will see this money, given the promises made in 2010 not in the last Lib Dem manifesto, but after the coalition government was formed. I was chairing the Mental Health Network of the NHS Confederation at the time, and was invited to speak at the launch of the coalition’s mental health strategy alongside Mr Lamb’s predecessor Paul Burstow. We felt excited and optimistic that parity of esteem between physical and mental health services was being promised at the start of the new parliament and ahead of any other health announcements. What happened?
  • Children’s mental health services, one of the top priority areas in the manifesto, are in a state of particular crisis. This is because of cuts to local authority funding of front-line services in schools and those provided by the third sector, reductions to NHS community services, substantial increases in referrals linked in part to the downturn but also modern pressures felt by young people. There has been near-chaos in the commissioning of these services arising from changes to the NHS and Social Care Act, which although a Conservative-led initiative which they now admit was a mistake, could have been halted or at least improved by the Lib Dems. One of the most troubling outcomes is that sick children now wait regularly in police cells while desperate clinicians and managers scour the country for a suitable hospital bed. Staff are overwhelmed, and parents are desperate. Given that 75% of mental illnesses start, as mine did, before the age of 18, and that early intervention is now known to make such a difference, this situation is not only cruel, it is also extremely short-sighted.
  • According to W Edwards Deming, if you don’t measure, you can’t manage. Mental health services have been crying out for a commissioning currency so they aren’t expected to respond to infinite levels of demand under open-ended block contracts. They need national benchmarks, targets and some form of payment by results, otherwise bids for increased funding will continue to be trumped by those for diseases such as cancer or heart disease, where there are a wealth of measurements. This was promised by the last Labour government in 2005 and by the coalition in 2010. It appears again in this manifesto; if the Lib Dems help to form the next coalition, will we be third time lucky?

Here are Royal College of Psychiatrists’ President Professor Sir Simon Wessely and Time to Change ambassador Alastair Campbell explaining why in their view, when it comes to mental illness and mental health care and support, government actions speak louder than words.

It’s not just the 1:4 of us who experience mental illness who should carefully consider these promises and those made by each of the other political parties. 4:4 of us will be voting on May 7th, or rather, we have the right to vote that others have died to get for us. This will apparently be the closest election in a lifetime. We have the greatest ever diversity of candidates. If we don’t each exercise our democratic right, we risk allowing those more certain than us about matters as important as mental health to decide who will run the country.

According to pundits, the outcome of the election is likely to be another coalition with at least two parties. This time, whoever forms the new government, I intend to make a fuss right from the beginning about funding and evidence-based support for mental health services. The more of us who do, the more they will realise that we mean business.

The recent dog-whistle headlines about the aircrash co-pilot show that we have a way to go in tackling the stigma of mental illness. So please ignore Russell Brand and vote; being disenfranchised would be really bad for our mental health.

 

 

I think we are pretty amazing

I didn’t sleep much last night. I’d agreed to go on the Today programme at 07.40 to give my perspective on this week’s coverage of the terrible plane crash in the Alps, particularly the implications that it was caused by someone with depression.

I only came out about my own experiences of depression a year and a half ago, even though it has come – and gone – since I was 15. I’m not unusual; 75% of mental illnesses start before the age of 18. I’m also not unusual to be shy about sharing. There is still massive stigma. Including self-stigma, in which I am an expert.

Very gradually, things have become easier for the 1:4 people who experience mental illness, through campaigns such as Time to Change. Or so we thought.

I’m not going to repeat how disgracefully the majority of the print and even broadcast media have behaved this week. Others including Matt Haig, my 17 year old Twitter friend Stella and Stephanie Boland have done so much better than me.

And deepest thanks to Paul Farmer, CE of Mind, Sue Baker, Director of Time to Change and Professor Sir Simon Wessely, President of the Royal College of Psychiatrists for being so quick off the mark and setting the record straight. They have done a stunning job.

What I want to say is that, every time I have an opportunity to speak about the stigma that still affects people like me, I feel a little more nervous. It is an increasingly heavy burden of responsibility. For some, the impact of their mental illness means they lack the voice and opportunity to speak for themselves. They have to rely on others. And that means those of us who can must act with great sensitivity and respect. Including towards those who have lost someone to suicide, anorexia or lack of self-care.

Mental illnesses, by definition, mess with your head. They make you believe horrible, negative things about yourself, question your worth and the very point of your existence, and cause you to feel hopeless about the future. In some cases, people lose touch with reality. They hurt themselves, either deliberately or by failing to take due care. It is rare that they hurt other people. Far more rare than people who are NOT mentally ill hurting others.

There are other illnesses that carry stigma, but mental illnesses are in a class of their own. The media coverage this week may have set matters back.

But what gives me hope is that after speaking on the radio, I have heard from hundreds of people I didn’t previously know via social media. Many are like me, timidly but courageously speaking up about their own experiences in order to encourage people who are ashamed of their mental illness to seek help.

Together, we can metaphorically hold hands, step forward together and show that we aren’t murderous monsters. And that, with love, support and most of all our own courage, we can make a creative and compassionate contribution to the world.

Thank you to all my old and new friends. I think we are pretty amazing.

 

Pride and Prejudice: post NHS Change Day ponderings

20.30 from Birmingham New Street to London Euston

20.10 Birmingham New Street to London Euston

You know how it is. There’s been a big event in your life – a special birthday or a wedding. Even NHS Change Day.

Now the party’s over. Everyone’s gone home, you’ve done the clearing up and read the thank you texts. You’ve got a hangover and sore feet from dancing till dawn. And you feel a bit flat. And you wonder what the point of all that fuss was.

I was feeling a bit like that the day after NHS Change Day. Maybe you were too? I’d given my all to various events in Birmingham. I was made extremely welcome by amazing people at Birmingham Children’s Hospital, at Birmingham Community Trust, at two children and young people’s mental health services and by patients, users, carers and staff at a West Midlands Health and Care Voices event in the evening.

It felt very special to share thoughts with patients and staff about things we all care very much about. Everyone seemed up for playing their part in changes that needed to happen. And our NHS Change Day: Time To Change campaign also seemed to hit the mark for many of the folk I came across.

A student nurse called Ellie did something on NHS Change Day that I didn’t have the courage to do until I was 58. In this blog, she beautifully describes what happened to her in front of 40 other people. In our Time to Change video, I ponder what may have made me take so long.

So that’s the pride part. I felt proud of my small contribution to NHS Change Day.

And the prejudice? It was to realise that some of the naysayers also had a point. While NHS Change Day 2015 has been amazing, people who have never heard of it continue to do stunning stuff. Like my friend Alison, a sister in a hospice, who with her colleagues care for dying people with such skill and compassion, I defy anyone not be able to learn something from how they work. Their hospice is one of the most joyous and hopeful places I have ever been invited to visit.

Or another friend, a clinical leader in an acute hospital, battling to get colleagues to see people with dementia for what they really are, human beings with wants and needs, rather than “inappropriate admissions” or “delayed discharges”. Or a third friend, a health visitor with a caseload so huge, and with clients with so many complex health and social problems, I cannot imagine how she is coping. But she is, as are so many others like her.

On Friday, my mother and I went to visit my auntie, her only sister, in her care home. Most of the staff who work there earn not much more than the minimum wage. As always, we were moved by the tenderness shown towards those living at the home. These staff truly love the frail and confused people whose care has been entrusted to them.

People like this don’t need a special day. What they do every day is extraordinary.

The NHS has to change. We cannot go on as we are. It’s an honour still to be involved, as a helper now rather than a leader, and to play a small part in bringing some of those changes about. NHS Change Day is an enabler. But it is no more than that.

Life, and death, continue 24/7 across all parts of the NHS and the services that support it.

If you work in the NHS, I hope you had a wonderful NHS Change Day. Thank you for what you do every day. I am most humbly grateful.

 

#NHSChangeDay is not a distraction from #Kirkup. It is how we will fix things

This week, a number of people have been challenging those of us involved in NHS Change Day to demonstrate its value. Particularly in the light of the Kirkup report about what went wrong with maternity services at Morecambe Bay Hospitals over an extended period.

For example @GeorgeJulian wrote this interesting blog.

There are others questioning whether NHS Change Day is a cult, a cheer-leading exercise led by those with not enough to do, a distraction from the grindingly hard work of running the NHS without sufficient resources, even an opportunity for organisations to put a gloss on how tough things are for patients and staff.

I can see why they might think that. I have another take on it.

The Kirkup report was shocking, for me even more so than the Mid Staffordshire Hospitals report. It got to the heart of what can go wrong when staff go rogue and collude, when key professionals who should be working together in harmony for the benefit of patients declare war on one another, when clinicians are simply not competent to practice, and when managers, commissioners, regulators and even the ombudsman indulge in a form of magical thinking, ignoring the evidence of high rates of death and other serious incidents and accepting assurances that should never have been given. The courage of families, including the man who worked at the hospital and lost his wife and new baby, and James Titcombe and his wife whose baby son Joshua died, has been extraordinary. We owe them a debt of gratitude for never giving up and continuing to insist that the evidence must be looked at properly.

So how can NHS Change Day help? I write now as a nurse and a manager. There have been many times in my 41 years when I have been aware of something not being right. The first time I blew the whistle, I was just 18 and hadn’t even started my nurse training. You’ll have to wait for my book to read the details; suffice to say, I was ill-prepared, it didn’t go well and I was sent away with a flea in my ear. Sometimes it was me that made mistakes, sometimes it was someone else; these things can happen, and we were rightly taught always to own up if we had erred. But what about the surgeon with the shaky hands that everyone was expected to ignore, or the night sister who slept in the laundry room when she should have been supervising us? Who wants to be hated for being a sneak and reporting people who are liked, or may be experiencing personal problems?

My blood ran cold reading about those midwives at Morecambe Bay. They reminded me of maverick teams I have known. Teams who are brusque and unwelcoming however hard you try to engage them, who repel enquiries, describe managers who visit their services and ask questions as interfering, or even talk about bullying if an aspect of their working practice is questioned. And what about more senior clinicians, such as doctors, who are described by colleagues as brilliant but eccentric, and can be extremely unpleasant and difficult to deal with. The ones who write you long letters describing, with great charm, the stupidity of your ways for trying to introduce a change to improve the experience of patients. These people are the exception, but they have a massive impact. I can remember as an executive being told by a senior clinician that to expect to see the results of their clinical audit reports was tantamount to a slur on their professional standing. Eventually a brave junior member of staff blew the whistle on this person. They were dismissed for gross misconduct, upheld on appeal. But despite a ton of evidence, their regulatory body decided to allow them to continue in clinical practice.

The point I am making is that it isn’t easy to be a whistleblower, nor is it straightforward to tackle poor practice. The law is loaded on the side of employee rather than the employer, rightly so, but in healthcare this can and does affect patients.

Initiatives like NHS Change Day are the antidote. They put patients and caring, committed, non-defensive staff where they belong, in the driving seat. Leaders, including patient leaders, set the direction and tone, patients and staff come up with the ideas, and managers support them to deliver these together. Those who object to the change being proposed have the opportunity to discuss it and put the alternative case forward. Ultimately, the majority will decide. Encouraging an open, enquiring culture that is always seeking to improve practice is the best possible way for the NHS to become safer and more compassionate for patients and the vast majority of staff.

It isn’t easy always to be open to change, but we should all be learning and improving continuously.

I’m leading the Time to Change initiative for NHS Change Day. This video explains why – the key bit is from 3 mins 20 seconds. I hope it explains why I feel so strongly about change and in particular, reducing the stigma of mental illness within the NHS.

Thank you.