compassion

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.
image

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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!
  6. 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.
  7. 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.
  8. 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.
  9. 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.

 

Let’s stop being mean about people who are fat

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.

Fat-shaming is a recent phenomenon. People who do it include doctors, nurses, NHS managers, politicians, journalists, comedians and ordinary folk like you and me. And it is weird, because according to statistics, over 60% of us in the UK fall into the category of people being vilified for our weak will, stupidity, greediness and for costing a lot of money in unnecessary healthcare.

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 grew 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.

But our modern Western world has played havoc with these survival characteristics. As long as you have money, food is plentiful. 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 Talkthis 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 buy a newspaper and are told that if they also buy a 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 it 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 linked to body image and self worth, you would think that investing in prevention and effective treatments for obesity would be the place to start.

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 is there 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 learned this week that it has been witheld. Who knows what the real story is about who did this? I don’t really care. I just know that leaving obesity to individuals to tackle is unfair, ineffective and helps mo-one but the commercial giants who sell us all the 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 possible. Let’s publish the economic appraisal to prove 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.

 

I think we are pretty amazing

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

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

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

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

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

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

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

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

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

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

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

 

Sometimes it’s good to feel angry

One effect of antidepressants is to knock the top and bottom from one’s emotional range. After dark weeks of despair, self-loathing and nothingness of my most recent depression, I welcomed this. It was a relief to feel calm, even blunted.

Now I’m on a reducing dose of medication, I notice a gradual return to a more responsive emotional state. I’m more joyful, sometimes a little more anxious. And I find myself getting angry again about things that matter to me.

Actually, I felt angry today.

While it’s great that NHS England and the government recognise the need to invest in children and young people’s mental health services (CAMHs), why has it taken so long to find this out? And why is investment an election manifesto promise, rather than simply the right thing to do for our young people?

I have two interests I should declare.

  1. I ran such services for 20 years, including 13 as a chief executive.

  2. I first saw a psychiatrist myself aged 15.

The current system isn’t working. But we need to understand how we reached this position, or we risk not improving things far enough, even at all.

CAMHs staff are, almost without exception, amazing people. They don’t look after one patient at a time. They deal with the complications of whole families. They have extraordinary skills, vocation, patience and perseverance plus bucket loads of compassion. But across the country, many are fed up with being blamed for failing children and young people. Because they aren’t failing them. We all are.

The current “commissioning” arrangements could not have been more badly designed unless they were intended to be poor value and counter-productive. It is unacceptable that the different “Tiers” of care are purchased by unrelated parts of the so-called “system”. And that when children fall between the gaps, it is the clinical staff and their employers who face the blame.

Local authorities are under even greater financial challenge than the NHS. Many have made massive cuts to the first line, lower tiers of these services, or made them even harder to access than the higher, NHS tiers. Yet their members sit, by statute, in judgement of the NHS through Health Overview and Scrutiny Committees. Watch me and colleagues participating in this arrangement at Kent County Council a year ago, during which time one councillor publicly suggested that commissioners had set up the trust and staff I then led to fail.

Commissioners of such services have in many cases not been given the chance to argue for increases in resources, or even to defend the services they commission from cuts. Some have even felt the need to assert that providers were exaggerating the now-proven, substantial national increase in referrals. The causes are multi-faceted.

In many unrelated parts of England, services are inundated and can’t cope. Crises occur daily and children wait in police cells to be assessed by hard – pressed clinicians who know there are no beds available anywhere in the country even if the child is in desperate need of admission.

3 useful facts:

  •  Anorexia isn’t a young person’s lifestyle choice. It is a serious mental illness that, without effective treatment, carries a 30% mortality rate.
  •  Psychosis is like cancer. The earlier it is diagnosed and treated, the better your prognosis and the least likely it is to recur. The same is true for most other serious mental illnesses.
  •  75% of mental illnesses start before the age of 18. Like my depression

My 8-point plan for NHS England

  1. Do not ask management consultants or experts in commissioning to design solutions. Ask the people who know. The ones who work in and run these services
  2. Stop setting organisations against each other by competitive tendering. This may be OK when you have time, but with this, you don’t.
  3. Commission one local statutory organisation in each area under the greatest pressure to be the system leader for all aspects of CAMHs except secure care, with commissioners working within the local system. Avoid competition challenges by declaring an emergency, setting targets for engagement with CCGs and GPs, and requiring the lower tiers to be expanded and provided outside the NHS, either directly by schools and/or the not-for-profit sector. Do this for long enough to allow things to settle and thrive, ie a minimum of five years.
  4. Don’t allow anything to cloud your judgement. It isn’t social care good, NHS care bad. Or vice versa. CAMHs teams should be multi-disciplinary and multi-agency. Parents and children don’t care who staff work for. What they care about is getting help that is responsive and effective.
  5. Carefully consider secure services for children and young people. Are they good value? Clinically effective? Compassionate? Safe? And are children in these services only because there are insufficient non-secure services? Only national commissioners can do this.
  6. Work as hard with the next government for increased funding for CAMHs as you would for heart disease or cancer care, were these services in an equally challenged state.
  7. Celebrate the amazing staff who do this work. Encourage ministers, the media, CCGs, trusts, schools and the third sector to do the same.
  8. Imagine what you would want for your children, were they suicidal, self-harming or hearing voices.

What could matter more?

 

 

 

 

What I have learned through recovery

An episode of clinical depression isn’t sadness. For me, it starts with brittleness and a growing sense of doom. I stop sleeping and become increasingly irrational and irritable. Beyond a certain point, I am unable to ignore or control it. Eventually, something snaps. I am smothered by a suffocating blanket of nothingness. The only feelings to permeate are deep guilt and self-loathing. All perspective is gone; I ruminate endlessly over things I have messed up and those I have hurt. I am frozen, unable to speak, or crying. The tears do not soothe. I detest myself.

Luckily I don’t feel like this all the time. Having been on my latest road to recovery for the best part of a year, I have learned a few things about looking after myself that I want to share.

  1. Choose to be all of me: having learned that it is so much better to be open about my experiences of mental illness, I now have to work hard at not allowing depression to become my defining characteristic. It is just one thing about me.

  2. Expect less: if someone likes something I have done, that’s lovely. But I need not feel disappointed if they don’t.

  3. Mindfulness: live in the world and be in the moment. Enjoy the little things – rinsing a cup, the warmth of the cat’s fur. Stop rushing.

  4. Going out: notice how exercise in the fresh air, even in wind and rain, makes me feel strong and alive. Embrace it and do more.

  5. Stop ruminating: I’ve wasted a lot of time going over and over things. It is important to learn lessons when something goes wrong – CBT has taught me to face the difficult stuff with less fear. But knowing when it is time to move on is a skill that needs frequent practice.

  6. Choose to forgive: This goes with number 5, and I like to think I am better at it than I was. Again, I have to practise every day.

  7. Create order from chaos: people think I’m tidy, but the more distracted I am, the messier I get. I have learned that, on a day when I am feeling low or anxious, I need to create order. Write a list, tidy a shelf, weed a flowerbed – completing a small task that brings order is soothing.

  8. Buy less stuff: I thought I loved shopping, but it made me feel guilty to spend money I couldn’t afford or could have given to someone more in need. Now I try to buy less. Except fresh vegetables.

  9. Make do: this goes with 8. I gain increasing satisfaction from mending things, making something from something else, or giving something of mine to someone who can make good use of it.

  10. Treating myself: on bad days, addictive substances such as alcohol, caffeine and chocolate can seem like treats. It takes some of us a lifetime to learn that they aren’t. A soak in the bath, a walk by the sea or some quiet contemplation in a sacred space can feed the soul rather than flooding the brain with dopamine.

  11. Competition: for me, best avoided, except with myself when trying to improve personal performance.

  12. Listen hard: I used to miss so much or misunderstand because I was too busy interpreting what people were saying and working out what response I should give. I am learning the value of listening really carefully. It is amazing what you hear when you listen properly.

  13. Don’t shy away from things that feel difficult or scary: it takes huge courage even to leave the house when you are in the early stages of recovery from depression. Standing up in front of 200 people in my first week back at work, I wanted to die. But I am so proud that I did it. I have found that, as I get better, I thrive from the boost to my endorphins that comes from feeling fearful yet excited about a new challenge, preparing carefully and managing my nerves so that I do a good job. I feel very lucky that in my new world, there are plenty of opportunities.

  14. Stop pretending: when someone asked me how I was, I used truly to believe it was a dereliction of duty to say I was anything other than great. I have learned to tell the truth about how I am – some days I am good, and some just OK. And when I am not OK, I am better at saying this too.

  15. Choose kindness: people have often said of me that I am kind and generous. This came at a cost. I have learned that to be truly and effortlessly kind, one must start with oneself. The love I feel for other people and the kindness that flows from me towards them has multiplied as I have let go of negative feelings towards myself. I am far from perfect and still have many faults, but I am worthy of love. This helps me to help others more than I ever could before.

These are just my thoughts; if they help someone else, that’s great. But please, don’t shout at me if you disagree. We are all different. And that’s what makes us so amazing xxx

 

 

It’s #NHSChangeDay. And it’s #TimeToChange

My blog today may be the most important thing I write this year. So forgive me if I seem to be plugging it rather a lot!.

We all have mental health. And we all experience mental distress from time to time. But only some of us (1:4) get mental illness. This 3 1/2 minute video explains it well.

One of the hardest things about mental illness is the stigma associated with it. From society but also family, friends and work colleagues. But most of all from ourselves. It stops us seeking help. For example, people wait a year on average before talking to someone else about their depression. This delay causes great suffering and harm.

Time to Talk Day  took place last Thursday, part of the national Time to Change campaign. The purpose of setting aside a day every year is to open up conversations of just 5 minutes between people, and to help each other. I had some amazing conversations via Twitter and face to face with people, including at a reception for the national mental health heroes held by Nick Clegg, Deputy Prime Minister.

You may feel that politicians are jumping on the mental health bandwagon in the run-up to the General Election. But I think that’s OK. Because after the election, we can join together and hold whoever is elected very firmly to account to make sure that mental health services stop being the Cinderella of the NHS that they still are. It’s not enough for politicians to say nice things. We need carefully thought-through policies that make a positive difference, and significant investment in real terms over the life of the next parliament.

Stigma has many other negative impacts as well as on policies and funding. Time to Change have found that, while the public are gradually improving their attitudes towards people who experience mental illness, there has been no discernible improvement of attitudes within the NHS. In fact some people who use mental health services say things have got worse.

This produces all sorts of horrible results:

  • People with mental illness can be treated without the compassion and respect that are essential for effective health care
  • People with mental illness may not receive the treatment that they need in a timely manner. They may have to fight to get the right care. And they may not even receive the right treatment at all
  • The links between mental and physical illness can be forgotten or ignored, causing detriment to people with either or both. For example, people with serious mental illnesses die on average 20 years earlier than the general population, often linked to preventable diseases such as heart and/or lung diseases, some types of cancer and strokes. People are people, not single diseases
  • People with mental illness report that NHS staff can have a pessimistic outlook on their life chances, including relationships, education, employment and social contribution
  • Staff who work in mental health services can be blamed for things that are not their fault, or criticised for not providing a service when it hasn’t been commissioned or adequately funded
  • NHS staff who themselves experience mental illness often feel the need to hide it from their colleagues, and when applying for jobs. Mental illness is not seen as something to be proud of overcoming in the way that some physical diseases are portrayed

Part of our #NHSChangeDay #TimeToChange campaign asks NHS staff who have experience of mental illness to consider talking about it with their colleagues. Please be assured, we are not in any way pushing people to do this. We ask anyone who is considering doing so to think about it carefully, and look after themselves, including getting support. There are some good resources here. I know from my own experience how hard making such a disclosure can be, and how significant are the ramifications. But that takes us back to stigma. It really shouldn’t be so hard. And if we cannot be compassionate towards our colleagues who may be experiencing mental illness, how can we, and they, be expected to be compassionate with patients?

When we find ourselves troubled about something that we hold dear, it is human to want to disagree. Or run away. I felt very upset when I first heard the findings of the Time to Change research, and wanted to say no, surely it must be better than this. But then I listened again, and realised that, unless we face up to what has been uncovered about attitudes within the NHS, things will never improve.

If you have 6 minutes to spare, you can watch me talking about it here. Including the long-lasting effect that one nurse’s probably unintentional lack of compassion had on me, also a nurse.

The #NHSChangeDay #TimeToChange campaign aims to tackle this stigma within the NHS head on, with compassion, but also with wisdom and hard work. From it, we are building a programme within Time to Change that we hope will leave a very important legacy for NHS staff and patients.

Whether you are a patient or an NHS clinician, a catering assistant or a Chief Executive, please join us. Everyone can commit to one of our actions or create an action of their own. It’s NHS Change Day on 11th March 2015. And it’s Time to Change.

Thank you.