mental health

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.

Don’t be mean*

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

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

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

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

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

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

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

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

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

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

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

Why do you blog?

I’ve been collecting questions and comments about blogging recently. Here are some of them, with my thoughts. I’d love to hear yours.

1. Why do you blog?

This is a bit like asking why do you breathe. Because I have to. I’ve always used writing to explore ideas and work out what I think. And I’ve always shared it. Blogging is just the latest way to do this. There will no doubt be others.

2. I don’t know how you find the time

Writing a blog doesn’t take as long as you might think. Also, I no longer have a full time job – although I found it helpful to write a weekly blog even when I did. Nowadays, there are other things I don’t do as much of as perhaps I should. Such as finishing the book I am writing…

3. There are so many blogs. I don’t have time to read most of them

No one expects you to. There are also many millions of books, articles and other forms of writing. Some of us have voracious appetites for reading. Others are more choosy. Both are OK, as long as you don’t only read things you know in advance you will agree with. Reading is meant to broaden the mind. And make you think.

4. How do you know if people read your stuff?

This is why blogging is so great. Back in the day of articles appearing in print only, you might know how many people had bought the newspaper or journal. But you’d no way of knowing who had read your piece. With online blogs and articles, at least we now know exactly how many have opened it, even how long they have lingered there. Although whether they actually read it remains their private business!

5. What if no-one reads your blog?

That’s OK. I have had blogs that were looked at by 1,000 people within a few hours, and others which struggled to reach 200 people over a whole week. It can be hard to work out which will be which in advance. It helps to consider whether the title is appealing, and also whether I am saying something original or even interesting; sometimes only clear with hindsight! The ones that seem most popular tend to be when I write about something that other people might have wanted to say, but were too scared to. Or where I talk about my personal experiences of difficult stuff, and what I have learned.

6. I’d like to write an opinion piece but I’d hate to get some of the horrible feedback I’ve seen you getting

This is interesting. At first, the online mauling of people like me who express their views can be distressing. There is something about the ability to be anonymous or apparently unaccountable that makes some people behave in destructive, even vicious ways. I heard Stephen Fry on Desert Island Discs say that he now tweets but never reads the tweets of others. That is really sad. I’m similar to him in two respects: I experience depression from time to time. At those times, there is nothing anyone can say about me that is bad as how I view myself. And when I am well, I have in the past found it almost unbearable when people have criticised me. But…If you ignore negative feedback, you miss learning something. I’m slowly improving at rolling with the punches, and just tuning out the most obviously horrible responses. Increasingly I see myself as an incomplete project that I need as much help with as possible. This makes everything about being alive so much easier.

Also, my wise friend @AlexYLDiabetes tells me that the 80:20 rule should apply, i.e. at least 20% of people should actively object to what you are saying. If they don’t, you are being bland or populist. Thanks Alex, as you know that has been a stunningly helpful insight. Particularly as my next blog after this one might be quite contentious…

7. I’ve been told I should blog but I’m anxious about getting started.

No-one should tell you what you should do. It is your decision. But given that you might want to try blogging, I will just say this. All new things are scary. I have had palpitations just before pressing the Publish button on quite a few occasions. This was one and this was another. It is when you stick your head above the parapet and say what people might not be expecting that you will get the most reaction. I like it when I manage to articulate what others have been thinking but haven’t got round to saying yet. And I like it even more if I can help people to formulate their ideas. If you think you might like these things too, please do have a go.

8. How does blogging make you feel?

Mainly happy. I honestly love it. As I do discussing ideas face-to-face, reading and hearing what others have to say, finding my thoughts shifting, and finding ways to explain what I think through the powers of story-telling.

And I love online conversations, especially on Twitter, which is made for ideas. As well as pictures of cats.

William in the garden

Please don’t walk by on the other side

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

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

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

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

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

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

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

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

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

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

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

When I’m 94…(to the tune of When I’m 64 by the Beatles)

When the NHS was created in 1948, 64 was considered elderly. Both my grandfathers died during the 1940s aged 50 from what we now know to have been smoking related illnesses, having served in the WW1 trenches. My maternal grandmother died aged 65. My other grandma managed to last a bit longer; she died in December 1982 aged 79. 3 out of 4 died in their own beds at home.

I was born in 1955, a child of the NHS. I have worked in it since aged 18. The NHS was set up to improve the extremely poor health of the nation after World War 2, with clinics providing advice and free milk, vitamins, orange juice and cod liver oil, as well as weighing and measuring children, hearing and eye tests, free dentistry, and checking for lice, nits, scabies and rickets. A mass free screening and vaccination programme began for common killer diseases such as smallpox, diptheria, tetanus, polio and TB. Going to the clinic with my mother and younger brothers was fascinating and memorable. Providing care free at the point of delivery to people who were sick or injured was a massive bonus for the public, but its wasn’t intended to be the main aim of the new NHS.

Despite these wonderful founding principles, the NHS quickly began to increase its focus on treating sickness. The status of hospital medicine has always been greater than public health or primary care; this continues today. Radical health promotion initiatives such as the Peckham Experiment sadly closed down before they had a chance to prove themselves.

I trained as a health visitor in 1978, having been inspired during my hospital nurse training – in 1975 I went out for the day with the local health visitor. As well as admiring her cream Morris Traveller and adorable spaniel puppy, I will never forget one visit. In a tiny cottage in a village outside Cambridge, we called on an elderly lady. I remembered her in hospital after a massive stroke, lying with her face turned to the wall. Back home, despite needing two sticks and very limited speech, she ushered us into her cosy kitchen, all smiles, and made us tea and biscuits while her cat snoozed on the sunny windowsill.

Community services (those outside hospital that either help people to stay healthy or look after them at home when they are ill or dying) and mental health services have always been the Cinderellas of the NHS. Never more so than in the last few years, when they have experienced unprecedented cuts in order for commissioners to continue to pay for increasingly sophisticated physical hospital interventions.

Today I have a lovely gig: joining 100 or so folk from the NHS and social care system in Kent, Surrey and Sussex, all of whom want to improve care for older people. It is organised by the KSS Academic Health Science Network. Life expectancy in Kent, Surrey and Sussex is the highest in the UK. Were it not for pockets of significant deprivation along the Kent and Sussex coast, and the appalling fact that people with serious mental illness live 20 years less than the population average (25 years less than the KSS average), it would be even higher. It is common for acute hospital wards to be entirely populated by people in their mid 90s and above. The people attending the event know things have to change. Medicalising old age is cruel as well as extremely costly.

It is, fortuitously, Dementia Awareness Week and Dying Matters Awareness Week. I know from the research of my brilliant ex-colleague Professor Sube Banerjee that only 18% of people who have dementia only have dementia. The majority have between 2 and 7 other significant health conditions that seriously affect their lives. The way we run the NHS is simply not serving their needs, despite very elderly people being its majority users. I also know from the wonderful work of organisations such Dying Matters that these days, most people die in hospital despite very much preferring to be cared for at home.

Today, we will be encouraging the people at the event to face this enormous challenge together. We have to do things differently. It says so in the Five Year Forward View. The attendees at this event are to some extent, like those involved in the vanguard sites across the country, the converted. But even they will have to throw away beloved ideas and think the unthinkable.

I am indebted to @HannahTizard on Twitter for this lovely infographic about tall poppies.

Tall poppies may experience meanness from others because they are full of ideas and are not afraid to challenge the status quo. They are always thinking about how to do things better and are not prepared to accept mediocrity, especially when it harms others.

I will be using this lovely infographic today to encourage the people at the event, who I think of already as tall poppies, and giving them a link to this blog so they have a reference to keep.

I hope you find it helpful too. Please be a tall poppy; challenge the status quo if you think the care you provide or commission isn’t what you think you would want yourself when you are 94 or even older. And do something right now to start making things better for every elderly person who wants fewer tubes up their bottom and down their throat, and more time to enjoy their latter days with somebody kind to sit with them, help them to have a drink and hold their hand.

Meanwhile, as I intend to live until at least 94, I’m off to read Sod 70! by the indomitable Dr Muir Gray, to help me continue to treat my body hard but well, and How to Age by Anne Karpf, from the School of Life series, to help me manage my (sometimes fragile) psyche and approach old age with equanimity and joy.

Do please join me.

Post script: 11 hours after posting this, I’ve already had lots of feedback. One person feels I’m generalising and that the research quoted doesn’t support my view that older people would prefer to avoid unnecessary investigations. I agree that we must ask people and really listen carefully to their answer before subjecting them to invasive tests. Over 100 seem to like it so far.

I’ve also realised that I’ve been channelling the #HulloOurAimIs campaign from NHS Change Day led by my lovely Twitter and real life chum Alex Silverstein @AlexYLDiabetes. So I wanted to mention it. Alex is the tallest of poppies and despite being less than half my age, has taught me loads. Go Alex and thank you xxx

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.

Dear New Secretary of State for Health

Congratulations on helping to form a rainbow coalition government so quickly, and for your appointment. It is wonderful that a Conservative/Green/LibDem/Labour/National Health Action (delete as appropriate) MP is prepared to set aside political differences and take responsibility for the NHS in England on behalf of us all. What could be more important?

I expect you will get a few suggestions on what to do first. I thought I’d make it easy and send you my list at the earliest opportunity. It contains 5 things.

Pass an Act of Parliament that makes it illegal for any politician to use the NHS as a political football. This will allow you to make plans with all the coalition partners that transcend the short – sightedness of a 5 year parliamentary term. And if it puts the Daily Mail out of business, it will be have the added benefit of improving the nation’s mental well-being.
Appoint a group of well-informed independent thinkers to form your ministerial team. A few suggestions: Dr Sarah Wollaston, Norman Lamb, Dr Caroline Lucas, Liz Kendall, Dr Clive Peedell. They will help you remember the difference between the role of elected members – to set overall strategy and oversee governance – and of professional clinicians and managers, whose job it is to advise on how best to achieve your aims safely and then deliver them for you. Don’t be tempted to get involved in professional matters such as numbers of hospitals and staff, or specific clinical policies. The most important job for you and your team is the give the experts room to work and keep politics with a big P out of it while they do.
When fighting for the money needed from the Treasury to stabilise and transform the NHS and meet health needs today and for generations to come, think what Nye Bevan would have done if he had been told it couldn’t be afforded. Then do that.
Do what you must to sort out the mess that means that 7 people now do the job of one civil servant who used to run the NHS, and ties the hands of politicians like yourself in bureaucratic loops. Remove the tyranny of competition for competition’s sake. But don’t do a wholesale reorganisation. It is the way we provide NHS services that needs to change, not arcane aspects of structure.
Dump the phrase “parity of esteem”. It has lost all credibility. Instead, allocate funding on the basis of disease burden and the cost of not offering treatment based on the best evidence at the earliest opportunity. This way, children and young people’s mental health services will jump from the bottom of the priority pile to the top, with mental health services for adults of all ages coming a close second. If anyone complains, point out these three facts:

Psychosis is like cancer. The earlier it is diagnosed and treated, the better the prognosis and the least likely it is to recur. The same is true for all serious mental illnesses.
75% of mental illnesses start before the age of 18. Like my depression
People with serious mental illness die on average 20 years earlier than the rest of the population. From suicide, yes, but more frequently from heart disease, strokes, cancer and the complications of Type 2 diabetes. Putting mental illness first will save money and lives, and make those lives worth living.

The results of the 2015 election show that the public are fed up with media-savvy politicians who speak in sound-bites and put their own interests and those of their well-connected friends before the needs of ordinary people. But it will take us a while to relearn that honourable politicians sometimes make mistakes, that most mistakes only come to light with the benefit of hindsight, and that even the best decisions don’t invariably deliver the expected results. Being a public servant has never been harder. Please take care of yourself; we need you to remain compassionate, committed and to keep telling it to us like it is.

With loving kindness,

Lisa

What I did during National Depression Awareness Week

Now I no longer have a wonderful communications team to keep me briefed, awareness weeks like this one can pass me by. It was serendipity that I saw my GP yesterday and we agreed that I would start the final reduction of my antidepressants prior to stopping them altogether.

There are side effects to reducing modern antidepressants, also known as SSRIs, as well as significant risks. Reduction should be done carefully, with expert supervision. My GP has specialist mental health training and experience, which is also serendipity, as I didn’t know this when I shuffled into her consulting room at an acute stage of my last depression. She listens carefully to her patients, and works closely with us and secondary care staff including my psychiatrist. I am confident that I don’t get special treatment; she is equally compassionate and skilled with everyone. I do know that I am lucky.

It is shocking how many people think that you can go on the internet and become an expert in the treatment of mental illness. Without me asking for their advice, someone suggested that now we know that mindfulness works just as well as antidepressants, maybe I should try that instead? This made me smile to myself. I have given a presentation about the importance of access to mindfulness as a treatment option for anxiety and depression with the report author Professor Willem Kuyken to the Permanent Secretary of the Department of Health, Una O’Brien, and her senior team. So I do know a bit about it. But even so, with my own treatment, I need help.

As my dear friend @BiPolarBlogger said on Twitter, telling someone they should have a go at mindfulness is a bit like telling a person who can’t swim that doing the butterfly stroke is good for you. Such psychological techniques need to be taught with skill and practised regularly. And they are not for everyone. Mindfulness can be increase problems for someone with a trauma-related illness such as PTSD.

Actually, once I got over the hiding-under-the-bed-stage of my last depression, I found mindfulness to be a great help, and I use it most days. Yesterday I looked into a top-up course because, like all exercises of the body or the mind, repetition and building mastery are essential. Which isn’t the same as taking a tablet.

I have to confess to feeling anxious about coming off my little pills. There is something about putting them out before I go to bed, and then taking them on waking in the morning, that helps me remember my own fragility. It is a little daily act of self care. I might forget to floss my teeth, but I have never forgotten to take my medication.

People like me who experience depression have a tendency to be extremely hard on ourselves. I’ve written about this here and here. Medication prescribed by a doctor that you cannot buy over the counter is a reminder that someone who knows what they are doing believes that you need and deserve help – even if you don’t believe it yourself.

As well as upping my game on mindfulness, I am also doing more work (paid and voluntary) and preparing for a gruelling bike ride. And I’ve bought a new book called Reasons to Stay Alive by the wonderful @MattHaig.

Reasons to Stay Alive

And finally, I am using CBT techniques – facing the thing that frightens me and through this, allowing the fear to subside naturally – to help me. My blog is part of this.

Thank you for reading it. I hope it helps you or someone else xxx

Please take care, Twitter can be cruel

I love Twitter. But it can be a cruel place. Personal attacks and even threats of death are not uncommon. Sue Perkins and Jack Monroe are the latest high profile quitters following unrelated horridness – in Sue’s case, she was attacked for being (wrongly) tipped as Jeremy Clarkson’s replacement on Top Gear. Jack’s was about supporting the Greens on the election. Death threats for this? There are no words.

I’m nowhere near their league, but I’ve had my share of online nastiness, and it continues. It can be overwhelming when you are under an onslaught from many directions. And unless you reply and risk even worse, other more measured folk won’t know what’s happening, because the vile stuff won’t appear in their time line.

I am of the “Whatever we wear and wherever we go, Yes means Yes and No means No” generation. I don’t see why bullies should frighten us away from places that belong to us all. But I’m also concerned for my own wellbeing and that of others.

It is good that Twitter are cracking down on abuse – better late than never. Meanwhile, here are my tips for staying emotionally safe and still getting the best from Twitter.

Be yourself but think really carefully about how much you share. Social media is still a relatively new medium. Some are already regretting earlier openness. I’m thinking particularly of people like me who experience mental illness from time to time. Talking with others who have similar experiences really helps, because with diseases of the mind, unchecked irrational thoughts about ourselves can snowball and be really bad for us. But sharing also makes us vulnerable. Only a handful of people have accused me of psychological weakness, attention seeking or of using my depression as an excuse for past failings. Even fewer have defaced my image, called me vile names, and traduced my appearance, intelligence, morals, motivations and career. I have forgiven but I cannot forget their words. On a bad day, I imagine that others may feel the same way about me. On a really bad day, I may even agree with some of this shit. So please, take care.
Be wary of individual tweeters who follow few people themselves. They may say interesting stuff, but they are unlikely to be interested in an online conversation with you. Maybe you don’t mind just reading their views? It’s a good way to start, especially if you are shy. But most of us are on social media because we want to exchange thoughts, share experiences and ideas.
Don’t just follow those you know you will agree with. It might feel cosy to be in a cocoon of like – minded folk, but it won’t stimulate or enlighten. If it weren’t for Twitter, we wouldn’t know the odious extent of the views of, say, Katie Hopkins on people seeking asylum. What better spur to get the previously disaffected to vote than the thought of people like Hopkins (who always vote, by the way – they know their rights) getting more of a say than us non neo-Nazis? We need to know these things.
Take the plunge and join in conversations when you haven’t got a view or are still making up your mind. Some people think that being open – minded, even undecided, is feeble or wishy-washy. I disagree. Just be sure that when you in one of these discussions, everyone is treated with politeness, including you. Be prepared to walk away if that doesn’t happen.
Join in with conversations that are happening at the time you are actually on Twitter. Prepare yourself so you don’t feel too hurt if people whose views you admire don’t respond. Just move on and chat to someone else. Don’t assume people are being rude; they might be but that really isn’t your problem. Easier said than done when you desperately want a reply, I know!
Try not to get involved in those angry ding-dongs where an increasing number of @names get added, until in the end there is no space to say anything. If you get copied in, these are best ignored, in my experience.
Don’t be heavy – handed with the Block button. Some people collect blocks like trophies, and will proudly list you as a person who lacks empathy along with others you may prefer not to be associated with. And you won’t know about this if you have blocked them. Save blocking for porn sites, annoying bots and people who are genuinely harassing you. And for the latter, do also report them. Twitter are rightly upping their game in dealing with online harassment. If you are being repeatedly harassed by someone, you may also need to check if they have other profiles. In my experience, these are relatively easy to spot. And do also report them to the police. They definitely do take action when serious threats are made.
My thoughts here are aimed at people like me who are able to tweet as individuals. The freedom we enjoy compared to those in public positions cannot be underestimated. I’ve been in one of those jobs, and written about use of Twitter from that perspective here. It is great if such people can share something personal of themselves, but it is a big ask, given what can happen and the impacts. Which leads me to my final point.
Don’t rush to judgement of others. No-one knows what it’s like to sit where they are sitting, other than they themselves. Be kind, always. Never, ever make remarks like James May did recently about those who made death threats towards Sue Perkins. He only made a bad situation worse. If you can’t be kind, walk politely but firmly away.

I’ve blogged in the past about forgiveness. If you haven’t seen it and are interested, here it is.

I’m still practising by the way.

Lisa Says This

Using what I've learned to help others