Blogging

Please join my social media experiment

I haven’t done a blog like this before. I’m trying what I hope will be a relatively simple experiment to help me run some seminars on Thursday 3 March 2016 for the East Midlands NHS Leadership Academy.

And you can help me!

  • If you read the blog before Thursday, I would love to have your comments at the bottom of this blog to help me help the people in the seminar groups think about the use of social media in the NHS.
  • And if you read it afterwards, you can help me to think about it some more. Comments would be really welcome from seminar participants and others. Because like all of you, I am a lifelong learner.
  • I intend to use this blog as my main audio-visual aid for the seminars. It is therefore shorter than usual and presented mainly as
    • Bullet points!
  • As well as seeking your comments in bold, I will be encouraging comments and discussion from the attendees.
  • I plan to start by asking people where they are on scale of 1 – 10
    • 1 = a social media virgin
    • And 10 = social media savvy warrior
    • I am pitching the seminars and the blog towards the people who place themselves towards the lower end of this scale, but I will try to engage the more informed attendees by inviting their comments, as I am inviting yours.
  • How does that sound to you?
  • I will then introduce social media as a form of media where the control lies with the individual.
  • I will illustrate my point with a newspaper story that ran about me recently (two blogs down from this one if you haven’t heard about it) and how I was able to redress the balance myself via Twitter, Facebook and my blog.
  • Is the above example too self-indulgent, do you think? And if it is, can you think of a better one?

I will then list the different forms of social media thus:

Social media products:

  • Facebook: An early product. I use it to stay in touch with family + friends. But people use it very successfully for work, even instead of a website
  • Instagram – good for sharing photos, I am told.
  • Linked-In: For keeping in touch with people at work, finding jobs, making connections. Again an early product. I don’t like the interface. But I’ve missed some important messages from people who have tried to contact me that way, so be warned!
  • Skype: Free video calls. Can be erratic. But great for interviews or meetings with people far away. Much cheaper than video conferencing
  • Twitter: Admission time – my favourite. I love the discipline of the character limit.
  • Viber: Similar to WhatsApp. Also free calls
  • YouTube: used by President Obama, Justin Beiber and me!

  • WhatsApp: Great for staying in touch with individuals and groups. And free phone calls!

Does that sound overwhelming? Any glaring omissions? And does expressing my preferences help or hinder?

Benefits of using any/all of the above:

  • Control
  • Thrift
  • Contacts and connections
  • Equality

Things to look out for:

  • No such thing as a free lunch – you are the product for the companies providing these “free” services
  • Warning: social media can be addictive
  • Loss of privacy with some formats (see my blog On Forgiveness)
  • Trolls and other monsters (see my blog Please Take Care, Twitter can be Cruel)

Again, your thoughts please?

Blogging

  • Why do it? (see my blog called Why do you Blog?)
  • And why not do it? (hint: there are lots of good reasons)

This is where I hope we will have the richest discussion.

I’d really welcome your comments here too please.

Some NHS-inspired bloggers that I think are worth following:

  • Zoe Bojelian Wonderful mother of a brilliant boy who we will never forget
  • Annie Cooper Senior nurse + social media genius – she will be at the conference
  • Andy Cowper The most original writer on health policy I know. Also v funny
  • David Gilbert Writes in a brilliant, challenging way about patient leadership
  • Paul Jenkins Ex CE of Rethink, now runs a mental health trust. Deep thinker
  • Liz O’Riordan A breast surgeon with breast cancer. Stunning
  • Charlotte Walker A mental health patient (like me). Writes in real time. Gutty, startling insights
  • John Walsh My personal compassion guru
  • Rob Webster A brave, wise leader who shares generously

The list is of course not exhaustive, but I’d love your thoughts – who would you add?

My plan is to share this blog via the seminars, including all comments received, to stimulate discussion. And I will invite those who take longer to decide what they want to say, to add their comments after the event.

My final question to readers of the blog is this:

  • Would you find a seminar structured in this way useful?
  • And if not, and I really want your honest answers, please tell me how you would improve it.

I promise to incorporate your ideas. And I will also let you know how it goes.

Thank you very much indeed for joining my social media experiment!

 

 

 

 

 

 

 

 

A bit of courage

The more worried I feel about expressing my views on a particular topic, the more interest a blog seems to generate.

I’ve written this in anticipation of the Mental Health Taskforce Report, finally due out next week. Although, I’m unsure what you’ll think, I feel the need to say some things I could not have said when I was doing my old job running mental health services.

  1. Mental health services are undoubtedly scary. But they are not all the same. The atmosphere and standard of care even on different wards in the same hospital can vary widely. It depends on the expertise and most of all the compassion of the doctors, nurses and the people in charge. If you have had a poor experience of care, either as a patient or a family member, that is terrible. It is vital that we face the fact that 1 in 3 people say they experience stigma within services. The Time to Change project I’ve been chairing addresses this, with more to report later this month. But at the same time, we must do all we can not to terrify people who need treatment. The chances are they will receive care that will really help. And if they start out assuming the worst, it will be even harder for the staff working with them to establish a therapeutic relationship. And this is the most valuable treatment tool available. I know this from personal experience.
  2. The standard and availability of care in mental health services also depends on the attitudes and expertise of those running and commissioning these services. There is a real and present danger that, faced with wicked choices of saving vast sums of money from the NHS, commissioners look to make savings which will cause the the least outcry, ie from mental health. This isn’t an opinion, by the way. It is a fact. In particular, they look at most expensive care, which happens to be in hospitals, and persuade themselves that the local population can do without most or even all of it. But they can’t. To try to “re-engineer” aka cut beds without careful testing and sustained investment in evidence-based alternatives is irresponsible and dangerous. And yet this is exactly what has been done and continues to be done all over the country right now. Lord Crisp’s report into the availability of acute mental hospital beds published yesterday laid the facts bare. It was a good start. And the access targets it proposes will help. But we still have a long battle to rid ourselves of stigma towards mental health services not only from society but also from the rest of the NHS.
  3. Alcoholism and misuse of drugs are symptoms of mental distress and/or of underlying mental illness. To treat them simply as addictions is cruel and pointless. It may seem cheaper in the short term to separate such services from the NHS and employ unqualified staff to provide care. And it may be politically attractive to take a punitive, non-therapeutic approach to those who self medicate with alcohol or illegal drugs. But to do so condemns vulnerable people to a half life of pain and a premature, horrible death.
  4. There are millions of treatments available for physical illnesses. The same is so for mental illnesses. But why is it that people think they have a right to comment on the treatment of others who are mentally ill in a way they would be unlikely to do for, say, diabetes or heart disease? It’s true that psychiatry and psychology are inexact sciences. This is why they take more expertise, humanity and humility than the other disciplines of medicine. So if you feel tempted to comment on someone else’s treatment, unless you are their trusted clinician, please don’t.
  5. There is no hierarchy of mental illnesses, and no patients who are more “deserving” than others. People who experience psychosis don’t deserve more pity than those who have bipolar disorder, or vice versa. And a short bout of clinical depression can be just as fatal as anorexia nervosa. Please remember this and put away your judgements.
  6. You can’t see mental illness. And that’s part of the cruelty. Getting up and going to a cheap cafe to spend the day with others who understand the challenges of mental illness might sound easy to you. If you feel inclined to bang on about the value of work to those for whom the thought of being compelled to attend a job interview causes them to seriously consider jumping under a train, please shut up. Just because some people don’t get sympathy from tabloid newspapers doesn’t make them any less of a human being than you.
  7. I’ve no problem with the use of words like bravery to refer to those experiencing cancer. And I know from friends with cancer that they have no choice but to be brave. But can we please recognise the courage, guts and determination of those who experience life with mental illness? And can we stop talking about suffering, because it implies passivity and weakness. The one thing I know about every person I have ever met who lives with a mental illness is that they are anything but weak. They are creative and heroic, in ways those who’ve never faced a life such as theirs can only imagine.

People who live with mental illness should be applauded and lionized. Not criticised, preached at, commented on, misunderstood and shunned. I hope next week’s taskforce report will recognise this.

Go us. Thank you.

Let’s be kinder about obesity

Fat-shaming is a recent phenomenon. People who do it include doctors, NHS managers, politicians, journalists, comedians and ordinary folk like you and me. I write as one who has done it as well as had it done to me.

I always liked the beach

I always liked the beach

Here’s me as a baby. Fully breastfed, I was bigger than my tiny mother almost before I could walk. I take after my father. I am robust. I love my food.

Humans are built for survival. Some are wiry and can run fast for long distances. Others have staying power. In an emergency situation, chunky people like me can cope with cold and hunger because we can survive on our fat stores. We are the polar bears and the Arctic seals of the human race.

Our modern Western world has played havoc with these survival characteristics. As long as you have money, food is plentiful. But the least nutritious, most fattening sorts of food are often the cheapest. And the combination of sugar, fat and salt in many processed foods such as cakes, biscuits, chocolate, ice-cream, crisps, milkshakes and even bread is, apparently, addictive.

This Ted Talk is enlightening. It helped me understand why losing weight is so hard. When you have gained weight, your body quickly adapts to being bigger, and adjusts your metabolism accordingly. Resetting the metabolic rate is extremely difficult. Once you have lost weight, you will probably have to eat fewer calories for the rest of your life to maintain your reduced size, even with regular, vigorous exercise. So you are fighting not only an addiction, but also your own nature.

And there is another factor. Many modern medications, particularly those used to treat various sorts of mental illness, have the unfortunate side effect of increasing one’s appetite. People taking them find they feel hungry all the time, and not surprisingly they eat more. I finished my antidepressants six months ago. Yet I have at least half a stone to shift, and despite extensive motivation and knowledge, it is proving a struggle. I know from chatting to others how distressing it is to gain four or five stone very quickly, with all the disability and stigma that goes with being overweight to add to the burden of the mental illness for which you have to keep taking the medication that leads to the weight gain.

I know people who have been to the doctor and been encouraged to lose weight. And then they go to the shop next door to buy a newspaper and are told that if they also buy a cheap monster size bar of chocolate (which contains more calories than they need to eat in a whole day but no protein, vitamins or roughage) the newspaper will be free. If this were cigarettes or drugs, we would be horrified.

Given the cost to the NHS of obesity, with its links to heart disease, strokes, Type 2 diabetes, cancer, arthritis and other long-term disabling conditions, not to mention depression, anxiety and agoraphobia associated with body image and self worth, you would think that investing in prevention and effective treatments for obesity would be the place to start.

I don’t like the term obesity epidemic. Obesity isn’t catching. Nonetheless, 60% of us in the UK are now either overweight or clinically obese.

There is mention of this in the NHS Five Year Forward View. But until this week, there has been no systematic appraisal of the best ways to help people achieve and maintain a healthy weight, nor a coordinated, evidence-based commissioning approach to weight-loss and healthy weight maintenance services. Public Health England have produced a report about sugar, but we have just learned that it has been withheld.

Who knows what the real story behind this is? I don’t really care. I just know that leaving obesity to individuals to tackle is unfair, ineffective and helps no-one but those who sell us all that stuff we don’t need.

Our current attitude to obesity is bizarre. Let’s tackle the food giants who push processed junk food at us from every direction. Let’s publish the public health report into sugar and do the economic appraisal that will prove beyond all doubt that helping people rather than criticising and lecturing them would in the end save a lot of money and even more unhappiness.

And most of all, let’s stop blaming people for doing what comes naturally.

This is an update on a blog I wrote earlier this year. I’m reprising it because of the fuss this week about Public Health England’s report into obesity and the Prime Minister’s apparent refusal to consider a possible tax on sugar.

 

Here’s to kindness

My friend Sara said yesterday that I seem to mention kindness a lot in my blogs. She’s right. I’ll explain what kindness means to me.

  1. Kindness is a gift we can each share with other humans, however rich or poor we are. It is remarkable that those with the least material wealth, such as people I know in Pakistan, are often the most generous to strangers as well as family and friends.
  2. Kindness means listening to another person as they seek meaning, understanding and eventually accommodation in bad things that have happened to them.
  3. I used to think kindness was about other people. Recently, I’ve learned that to be truly kind to others, one has to start by being kind to oneself. This is harder than it sounds. And it takes a lot of practice.
  4. Kindness includes going to an event, a leaving do, even a funeral, not because you necessarily want to, but because it would mean a great deal to someone else to have you there.
  5. Kindness is about reaching out to someone who is lonely, low or appears to be in need of help, and not minding if you are rebuffed.
  6. Kindness helps you to offer genuine congratulations to someone who has worked hard to achieve something admirable, even if you aren’t feeling great yourself. You may notice that their positive reaction will make you feel warmer and more contented.
  7. We saw great kindness in Sussex on Saturday, as thousands came to pay their respects to the 11 who died in the Shoreham air crash. By laying flowers on the footbridge, observing a minute’s silence, lighting a little candle or wearing a black armband, people showed love to the bereaved and to one another. Their kindness has made a terrible time feel slightly less terrible.
  8. I’d like to think that in the UK, we might extend our kindness to the desperate people currently queuing at Calais, being smuggled in containers or risking their lives in tiny boats to cross the Mediterranean. The so-called “migrant” crisis is actually a humanitarian crisis. The people fleeing torture, war and starvation from troubled parts of the world are not “benefit – cheats”. They come from all walks of life. They are doing what any of us would do in similar circumstances. And Great Britain is not really “full-up.” Compared with them, we have great riches, including plenty of room and resources. And if helping makes things a little bit less comfortable for some of us for a while, then so what? If we were in a lifeboat, would we prevent another person from climbing in, just because we liked our own space, and leave them to drown? I hope we wouldn’t.
  9. In Buddhism, kindness is named explicitly. But as a matter of fact, kindness is the fundamental feature of all world religions, including humanism. The parable of the Good Samaritan in the Bible, after which Samaritans are named, is about kindness. People who volunteer to help others enrich our world with their kindness.
  10. There are many people who write about kindness. The blog I’d most recommend is by @johnwalsh88. Here is a link to his latest. And here is the philosophy of the author.

In the 35 years that Sara and I have been friends, she has led by example and taught me a great deal about kindness. Everyone who knows her will understand what I mean. I will be forever grateful to her for this.

This will be my last blog for a while.  I’ve a book to finish and blogging, while good practice, is too easy a distraction.

I’ll be back. Meanwhile, let’s put pressure on our government. Let’s no longer feel ashamed of images of drowned people on the shores of seas close to our green and pleasant land.

Here’s to kindness. In the end, it is all that we have to give.

 

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.

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.”