patients

What would Mary Seacole do today?

Mary Seacole Trustees Karen Bonner and Jermaine Sterling

On International Nurses Day, I have been thinking about what nursing means in our troubled world. And how nurses through the ages and across the planet have devoted their lives to helping others.

It was lovely for the Mary Seacole Trust to be invited by one of our trustees Karen Bonner to hold a stall at St Thomas’ Hospital as part of the Guys and St Thomas’ NHS Foundation Trust’s International Nurses Day celebration. Our display was right by Mary’s beautiful statue. We sold books and badges and signed people up to our mailing list. But most of all we talked with nurses and members of the public about the legacy Mary Seacole has left us. Despite all the challenges she faced, she refused to give up on her mission to help the sick and dying, including soldiers in the Crimea fighting a world war. She knew that nursing, in the 1850s not yet a recognised, respected profession, is so much more than delivering medicine or other treatments. It is about being with people in life and also in death. It is about combining compassion with practicality. And it is about speaking up when something is wrong and fighting for the rights of those at the bottom of the pile.

Mary continues to be a role model for millions of us. As a middle-aged woman of colour, she knew discrimination and hardship. Mary’s mother was a free-woman in around 1805 when Mary was born, having previously been a slave. Mary experienced racism when she came to the UK, as well as many other challenges and setbacks. But through her courage, tenacity and entrepreneurship, she gained recognition and gratitude not just from those she nursed, but also the British government and media, and even Queen Victoria herself. And yet Mary died in penury. It is only recently that her legacy has begun to be recognised.

Some of the skills and knowledge I acquired as a nurse from 1973 – 2000 remain with me, although I would need considerable retraining if I wanted a job in nursing today. The same would apply to Mary. But the core qualities and values needed to be a nurse have not changed. The ability to listen without judging. To see the person not just their disability or disease. To stand up for those who cannot stand up for themselves. Never to give up on anyone. And to seek out and build on the shared humanity that brings us together rather than the differences that can drive us apart.

Were she alive today, on International Nurses Day 2017, I wonder what Mary Seacole would do? And as I look at her statue as she strides calmly but resolutely towards the Houses of Parliament, I can almost hear her telling me and others who have chosen to become nurses never to give up on our fellow humans. Because we are all part of one human race.

Be inspired #Confed2016

This time last year, I wrote a blog for newbies going to the NHS Confederation Conference. I decided to do an update for #Confed2016.

These are my top ten tips for having a fruitful time. By the way, you don’t have to be going to Manchester to make use of it 😉

Don’t try to see and do everything. Be choosy. Treat the conference like a festival. By all means tweet about what you hear. But do also give the events you choose to attend your undivided attention.
If you only seek out sessions and speakers to confirm your views, you will waste time and money. Arrive with an open mind. Ask questions. And be prepared to learn new things and to unlearn old ones.
Some people need no encouragement to network. But if you aren’t confident about bounding up to someone you admire with an outstretched paw, don’t worry. Practice saying #HelloMyNameIs to people who look like you feel – perhaps a bit lost or lonely. And remember what Dale Carnegie said: You can make more friends in two months by becoming interested in other people than you can in two years trying to get other people interested in you.
Dress for style AND comfort. These are not mutually exclusive.
Never forget you are at work. Stay out late if you must. But if someone makes you an offer you feel you cannot refuse, say No. And mean it. What goes on at conference does NOT stay at conference.
Take breaks. Go for a walk. Have a rest in your room. Do shopping or emails or visit the Lowrie. Drink coffee.
At the same time, stay focused on why you are there. The NHS is in a bad way. It is not only being slowly starved of cash. Services are overwhelmed because current methods of doing things are unfit to meet the demands of so many people with multiple problems. We need leaders like you to find two or three changes that will make the most difference. And to devote their careers to making these things happen.
Remember that innovation is as much about stopping things as starting them. That there are no quick fixes. And that culture eats strategy for breakfast*.
You will meet folk having a hard time. Please don’t avoid them. Despite all the talk about compassion, our beloved NHS has become less compassionate. There is too much focus on inspection, compliance and performance. And insufficient attention paid to recovery, renewal and support. Please spend time with people working in very tough places. Listen if they seem angry or frightened. One day, this could be you.
Take a look around you. Notice the top of the NHS. How very white and very male it is, despite the NHS workforce being 70% female and 20% BME. Ask yourself why this is so. And if you think it matters, do your bit to help to change it.

I’ve been to a few conferences. And been inspired. I hope you will be too. Have a wonderful time xxx

*This was never actually said by Peter Drucker or Edgar Schein, to both of whom it has been attributed. But it was what they meant. Sort-of.

Respect

With growing frustration, I watch how friends who are “experts by experience”* are increasingly being treated by the NHS and the various bodies tasked with inspecting and improving it. Such as being invited to be part of an inspection as an equal member of the team. But being paid many times less than anyone else, possibly even less than the living wage. Or being asked to join a group to produce guidelines or develop a new treatment or service change, bringing knowledge, skills and experiences that no-one else around the table can possibly have, for nothing or for a fee that is so close to nothing as to be insulting. Or being invited to speak at a conference but being told that “we have no budget for speakers” when clearly the conference is a commercial event AND the other speakers are being paid either by virtue of being in full time employment or a handsome fee.

I had an NHS career spanning 41 years, including 13 as a chief executive. My career as an expert by experience only began officially in 2013. But I have the benefit of an index-linked pension, which allows me to live well (although not as well as some might think because of decisions made when I was young and poor). Plus I can still earn money doing other things. So I can make choices about how I respond to people who invite me to speak at their events or otherwise draw on my experiences.

But many of my friends do not have that luxury. Opportunities to develop careers have been fractured by illness, disability and arcane, terrifying benefit rules which are themselves disabling. Their earning potential is therefore limited.

And my friends find that their generosity, goodwill and desire to help others is increasingly being abused. Despite rhetoric about patient centred care, co-production, peer-learning and a whole load of other worthy aspirations spouted by leaders in and around the NHS, those very same organisations are showing an increasing lack of respect and value for the only people who can truly help them achieve their improvement aims.

I’ve done it myself. Years ago, when I saw the size of the budget allocated to service user involvement on an important capital scheme, I knew it would be the first place I would have to go to make savings, should any be needed, despite it being a pittance compared with the professional fees being paid to architects, quantity surveyors, lawyers and the like. I did it, and at the time I rationalised it because I felt I had no choice. Looking back, I feel ashamed.

Why do we, as a society, place so little value on what matters most? Why do we pay the person who cares for our loved ones when they are dying barely enough to cover the rent on a pokey flat, whereas a man running some oil company gets £14 million a year? And why we do only see success in terms of earning potential, rather than the gifts a person brings to other humans and the planet?

I can’t change societal values. But I can make an impact on what we do in the NHS. I am lucky to have a voice. And I’m going to use it.

Wise managers understand this:

If you can save money and achieve the same outcomes, that is a cost saving
If you spend the same amount of money but do something better, that is a service improvement.
If you spend more money to achieve a better outcome, that is a service development
If you spend less money and achieve less, that is a service cut
But if you spend less money and pretend you are doing it to make an improvement, that is usually a lie and a cop-out

So to the people who say that they’d love to pay experts by experience what they used to pay them, or even anything at all, it’s just that the money is really tight and it’s getting even tighter, I say this. Please think again. What else are you spending that public money entrusted to you on? What really matters to you? And if you must make draconian savings, why not try being as parsimonious with your auditors, your bank, your staffing agency, all your other contractors for professional services, your regulators. Even your directors and your staff.

And let’s see what happens.

And to my expert by experience friends I say this: we have something that the NHS should treasure, our personal intellectual property. Let’s continue to be generous and compassionate in how we share it.

But let us also expect respect.

*Post Script: I understand that the term “expert by experience” is of itself problematic. It implies that all the person brings is their experience of a condition and the treatment for that condition, rather than a much wider set of skills and attributes that, almost certainly, will bring richness and intelligence to the debate and from which those who work in the system will benefit in ways they had never envisaged. If, after conversations with wise people, I can work out something useful to say on this, I will. For now, I apologise about the paucity of the term.

Post Post Script: It is less than 48 hours since I posted this blog. It has been looked at 700 times, stimulated over 500 responses via Twitter, and comments such as the ones below. It seems that I have touched a nerve both for those affected by the things I have written about, and for those working in organisations that describe one thing in their values but seem to act in a different way. That was the purpose; there is no point blogging if there is no subsequent debate.

I am grateful to all of the commentators, but especially Alison Cameron @allyc375 who helped me over the terminology and with whom I am hopefully going to be doing a double act soon on this very subject – watch this space. To Dr Shibley Rahman @dr_shibley whose original thinking brightened my Saturday evening. And to David Gilbert @DavidGilbert143 who reminded me that Patient Leadership is a useful way of thinking about this. He kindly agreed to me referencing this series of articles co-written by him and Mark Doughty @markjdoughty which I would urge anyone who wants to think more deeply about this to read.

Time are indeed tough. And in tough times, it helps to know who our friends are, and whether the values they tell us they espouse are really their true values.

I send loving kindness to everyone reading this.

Blessings

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

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

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

The hardest thing of all

I’ve been watching the desperately sad story unfold of the awful, untimely, preventable death of a young man with learning disabilities. Only those most closely involved can comment on what led to his death. But what happened afterwards has become extremely public.

Having done the job I once did, I feel the need to share some thoughts. I know this may provoke strong reactions. But to be silent suggests complicity about unfair discrimination of vulnerable people, lack of compassion and the opposite of openness in how the NHS too often deals with mistakes. And I am not complicit.

The media, including social media, can be a massive force for good. The media can shed light on things that need to be uncovered, especially where the interested parties are far apart. And in the case of campaigning journalists like Shaun Lintern, they can help families eventually get to the truth. Although they really shouldn’t have to.

The NHS is at long last waking up to the fact that the public understand bad things can happen. The public know that the NHS is staffed by humans who, by dint of being human, make mistakes. And that there are risks inherent in almost everything that the NHS does or doesn’t do. They know some mistakes occur because staff are careless or stressed or tired or overstretched or poorly trained or badly led. And they are realistic; they also know that a small number of staff do terrible things deliberately. But the NHS still needs to appreciate that the public will not accept cover ups.

Below are some of my lessons on running services for vulnerable people, learned the hard way, by experience. And by not getting things right myself all of the time.

Running NHS services is very, very hard. The hardest part is when things go wrong and patients are harmed or die in circumstances where this could have been prevented. It is what causes those in senior positions, like the one I once held, sleepless nights and to question our own fitness to lead. If leaders don’t have sleepless nights like this, they are almost certainly in the wrong job. Being a decent leader in one of these very hard jobs starts with having respect and compassion for those we serve. And the humility to admit mistakes.
Leaders in the NHS need to be curious and ask questions. They need to seek the truth, however hard this may be. They should surround themselves with others who are curious too and not afraid to challenge their leader. They need clinicians of the highest integrity with deep knowledge of the care they are responsible for to advise them. And although NEDs and governors who pose difficult questions may occasionally be wearisome, good leaders know that such people are invaluable at questioning what might seem obvious and to upholding core values. I may not always have shown this, but it is what I truly believe.
Some time after I left, I noticed that my old trust had been criticised for apparently taking too long to complete serious incident reviews. And I recalled my own occasional frustration at the length of time it took to receive outcomes from a review when I was desperate for answers. But now I’m thinking again. Investigating something properly takes time, especially when extremely distressed people are involved. Those investigating must be open minded and objective. They need to be released from other duties. They must not take everything they are told at face value. And they need the remit and backing to do whatever is needed to get to the facts. Timeliness is important, but not at the expense of uncovering the truth.
I recall an attempted homicide by a patient. We were so concerned to find out whether we risked a recurrence that, rather than an internal investigation, we immediately commissioned a specialist independent organisation to investigate and report to us, with no holds barred, on the care and treatment of this patient. This informed us about some changes we needed to make. This approach was later commended by the coroner. But when a statutory independent review was eventually carried out more than three years after the incident, the reviewers devoted space in their report to criticising us for having commissioned that first report, even though they broadly concurred with the findings. There is no rule book for NHS leaders. You must work out what to do yourself. And often only learn with hindsight whether you got a decision right or wrong.
The media onslaught that can occur after a serious incident can be all consuming and deeply distracting. The worst thing that can happen is that you are diverted from the real job, of providing good care and rooting out any that is less than good, into so-called “media handling”. I have been very close to getting badly distracted myself on occasions. My saving grace was probably having been a nurse first. But I don’t think that being a clinician is by any means essential to being a good NHS leader. Caring about what happens to patients is the only essential qualification.
Apologising is never easy. But it can mean so much. Apologies should be sincere, whole-hearted, unqualified and platitude-free. They may not be accepted initially. They may have to be repeated, sometimes many times. The hardest meetings for me and those I worked with during my 13 years as an NHS CEO were with families whose loved ones had come to harm in our care. But I am so grateful to those people for giving me the opportunity to listen really carefully to them and to apologise to them in person. It may take a long time to achieve such a meeting, and sometimes several are needed. The effort is really worth it.
The NHS is a microcosm of society and is institutionally discriminatory towards those who experience mental illness or have a learning disability. This is manifest in poor staff attitudes, low expectations, inadequate investment, silo thinking, paucity of data including comparative benchmark information on incidents, and the negative way the rest of the NHS treats those who raise concerns about such things. I’m doing my tiny bit as a volunteer to improve matters but there is so much more for all of us to do.
Talk of “numbers” without benchmarks and other good quality comparators can also be a distraction. Every unexpected death of a vulnerable person needs to be investigated to see if it could have been prevented. And that takes resources, which are in short supply in mental health services these days where the brunt of cuts have been made despite all the rhetoric about “parity of esteem”. Coroners are also overwhelmed; it often takes years before inquests into such deaths are completed, which is agony for the families.

It really shouldn’t matter whether the person who died was young, talented, beautiful, courageous, funny or anything else. They were a person who mattered. My heart goes put to anyone who has lost a loved one, and especially to those whose deaths were in some way preventable. You have to live with “if only” for the rest of your lives.

And that is the hardest thing of all.

I’m sorry. No ifs and no buts.

Last night, I glanced through a well-written Guardian Healthcare piece about the distress experienced by a psychologist over the death by suicide of a patient. It touched a nerve deep in me, and I tweeted this:

Those who rush to judge mental health staff should read this honest piece. In my exp, every loss is as keenly felt
https://t.co/WGM0S2lALL

It got 15 retweets, 9 likes, some positive comments from people who work in mental health services but also a few more questioning ones from people who I would describe as experts by experience. And it was these, plus my initial reaction to the article, that have had me thinking rather hard over the past 24 hours.

I want to make some unequivocal apologies:

I am sorry for my initial tweet. It is sadly not true that all such deaths are so keenly felt. Many are, but by no means all. I desperately wish they all were.
I apologise to all those staff at the mental health trust I once ran who experienced the death by suicide of a patient and who didn’t get the support they needed to help them cope with such a loss or learn valuable lessons that would help them and other patients in the future. Despite my sincere wishes otherwise, I wasn’t always as consistently effective as I intended to be in this regard. I am so sorry for this.
The people I was referring to who “rush to judgement” and look for people to blame after a death by suicide are NOT people who have experienced care, good or poor, or their families. In my not inconsiderable experience, such people are often the most moderate, thoughtful and compassionate towards the staff. Those who DO rush to judgement are some, not all, of the media; some, not all, politicians; and a tiny but vociferous minority of the general public. It can nevertheless feel overwhelming to be under such an onslaught. I have experience of this. But I should have made what I tweeted clearer. I am really sorry that I didn’t, because I upset and hurt people whose feelings matter very much to me. I may have done so inadvertently, but I was careless. And I am truly sorry.
This stuff is particularly painful to me because of my own experiences many years ago when I made an attempt at suicide. What the nurse in A and E said to me, that I was selfish and a waste of space and keeping him away from patients who were really ill, had a deep and lasting impact. It took many years before I confronted my shameful secret and quite a few more before I came to accept that he had been wrong. So I am especially sorry that my tweet wasn’t well-constructed. Of all people, I should know better.
It was after I returned to work in 2014 after my worst-ever depressive breakdown that I fully confronted the reality that staff who work in mental health are not all as compassionate as we might hope. There are many wonderful people, but there is still some downright cruelty, some poor attitudes and practices and some not inconsiderable compassion fatigue. I have written about this and my contribution to changing things here and about how challenging it is here. Today, we had a really good, honest project working group meeting, which I chair. This is extraordinarily difficult stuff. It cuts to the heart of things that matter deeply to me and to all the others around the table. So I am especially sorry about my tweet. As a writer, I should be more precise and thoughtful. As a chair, I have responsibilities. As a human, I should have taken more care.

I thought about just deleting the tweet. But that won’t make what happened go away. An unequivocal apology seems a better response. That, plus continuing the work with Time to Change to tackle what we know from countless surveys to be true, that stigma and discrimination are still alive and kicking within mental health services. And if we allow ourselves or anyone else to go la-la-la-la-We’re-not-listening, we, indeed I, are/am complicit in letting it continue.

You will be hearing more on this from me and others in due course. Our work will, I hope, feature in the upcoming Mental Health Taskforce report and in the future work plans for Time to Change.

The death of anyone by suicide casts a long and painful shadow. It is right and to be expected that staff should feel distressed. But they also need compassionate support so they are able, eventually, to carry on being compassionate themselves. And the ones who can’t be compassionate need to be helped to find something else to do.

One of my big lessons in life has been that I can’t be truly compassionate towards others if I am not compassionate towards myself. This means forgiving myself for making mistakes. I hope the people who I carelessly hurt by my tweet will forgive me too. Eventually.

PS In fact, within a couple of hours of posting this I had heard from all those mentioned. I feel deeply blessed to know such kind and forgiving people :):):)

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.”

What goes on at conference doesn’t stay at conference

This week, NHS folk (patients, policy makers, clinicians, managers) gather in Liverpool for the NHS Confederation Conference. I’ve been to quite a few in my time. Here are my tips for getting the most from this annual NHS jamboree.

Treat the event like a great art gallery or music festival. Don’t try to see and do everything. Be choosy, and give the things you choose your undivided attention.
Travel with an open mind. Be prepared to learn new things and to unlearn old ones. If you only seek out sessions or speakers that you think will confirm your views, you will waste your time and the money of whoever has paid for you to go.
Some people need no encouragement to network. But if you aren’t confident about bounding up to Simon Stevens or Jeremy Hunt with an outstretched paw, don’t worry. Practice by saying hullo to people who look like you feel – perhaps a bit lost or lonely. And remember what Dale Carnegie said: You can make more friends in two months by becoming interested in other people than you can in two years trying to get other people interested in you.
When meeting new people, try to be neither boastful, facetious or enigmatic. If they ask you what you do, tell them. Self deprecation is good, but only if you mean it.
Dress for comfort AND style. These are not mutually exclusive. And ladies, remember that hobbling about in heels that may be causing you permanent disability is not a good look.
Don’t be a killjoy. If you get invited, go to the conference dinner. This is where you will get to mingle with very senior people once the pudding has been served. I’m expecting some serious selfie action from NHS management trainee chums.
Burn the midnight oil if you must. But never forget you are at work. Even if someone makes you an offer you feel you cannot refuse, say No. What goes on at conference does NOT stay at conference.
Take breaks. Go for a walk. Have a rest in your room. Do shopping or emails or visit Tate Liverpool or watch triathletes training in the dock. Drink coffee. But stay focussed on why you are there. The NHS is in desperate need of radical change. We are relying on people like you to work out the two or three things that will make the most difference, and then to deliver them. So you need to be in good shape.
Be kind. You may see folk who you know are having a hard time. Please don’t avoid them. Some of us older hands worry that, despite all the talk about compassion, the NHS has become less compassionate, with considerable focus on inspection, compliance and performance but insufficient attention to recovery, development and improvement. And we have jettisoned most of the architecture that helped senior people to step aside with dignity when circumstances required this. The best you can do is say hullo to people working in very tough places, and listen if they seem angry or frightened. You never know, one day, this could be you.
Bring back stories. I remember one year Roy Lilley started his session with the sound of an unanswered phone ringing while he did a voiceover about being a worried relative. He went on to demonstrate an inadequate vacuum cleaner, dropped it off the front of the stage, introduced us to a new bagless vacuum cleaner, and brought on then little-known James Dyson to chat about quality. He ended with a duet with his brother on keyboards. It was fabulous. This year I highly recommend Alison Cameron at 9.30 on Friday morning. I will be watching online as she reminds confetence why we all do what we do.

You can prepare by following some great NHS people on Twitter. I’ve already mentioned @allyc375. Here’s a few more: @WhoseShoes, @NHSConfed_RobW, @NHSE_Danny, @ChrisCEOHopson, @Saffron_Policy, @HPIAndyCowper, @Crouchendtiger7, @HSJEditor, @SamanthaJNHS, @antonytiernan, @anna_babic, @DrBruceKeogh, @JaneMCummings, @helenbevan, @jackielynton, @DrUmeshPrabhu, @JamesTitcombe, @NHS_Dean, @KarenLynas2012, @yvonnecoghill1, @2020Health, @Damian_Roland, @BCHBoss, @nickyruneckles, @paulfarmermind, @KMiddletonCSP. Of course there are many more wonderful NHS folk on Twitter, but the ones on this list are definitely at the conference this year. Please seek them out and say hi, and send best wishes from me. And expect a warm welcome back.

I recommend that you follow the conference chair @tweeter_anita. I hope she will mention her stunning new book Sophia, the biography of a forgotten Indian Princess who became a suffragette. It has reminded me that keeping quiet and toeing the line never got anything important done. And causes me to wonder how it can be that in 2015, with NHS staff being 70% women and 20% BME, Anita was left to interview 6 white men who are, collectively, in charge of NHS commissioning, public health, regulation and training. I’m not criticising the incumbents, just the system that perpetuates this shocking lack of diversity at the top. All the more reason to dig deep and support the statue Mary Seacole, which will commemorate not only Mary, but all women and BME people who have dedicated their lives to caring for the sick and wounded.

Please support the Mary Seacole statue appeal http://wp.me/P4ZnZz-3Y

So listen hard, make some noise, have fun and be kind. I hope you have a wonderful conference.

With thanks to @MarkAxcell for the lovely poster.

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

Lisa Says This

Using what I've learned to help others