cruelty

What should poor Helen from TheArchers do now?

It was nice to get such a lot of interest in my blog about whether it was Helen or Rob Titchenor who needed to see a psychiatrist. As they are both fictional characters, it felt OK to surmise about their relative states of mental health, and also to remind people who were getting excited on Facebook and Twitter that having a mental illness is not a character flaw.

But right now, Helen is in turmoil. And because the writers, the producers and the actress have created someone people care about, there is a lot of advice flying around – to Helen herself, to her friend Kirsty, to her parents Pat and Tony, to her odious mother-in-law Ursula and to her abusing control-freak husband Rob. I realise that the scripts have already been written and the recordings made weeks ago, but nonetheless, here are my thoughts. They can’t help Helen, but they might help someone like her. Or their children, family and friends.

Should Kirsty break her promise and tell Pat that Rob hit Helen?

No. Because Helen has only just started to confide in her. It is really important for women who are abused by their partners not to experience what might feel like abuse from others. Helen is not in immediate danger. The best thing Kirsty can do is be there for her, listen to her and gently help her work out what to do for herself. It helps that Kirsty has sought advice from a domestic abuse website such as the wonderful Rise UK http://www.riseuk.org.uk/ It is important that Kirsty stays calm, despite how angry and upset she feels. There may come a time when she has to break her word, but not now.

Why hasn’t Helen’s psychiatrist done something already?

Again, it is vital to build trust. If the psychiatrist is doing their job properly, they will be carrying out a careful assessment of Helen. This should include checking for signs of abuse. I just hope they don’t allow Helen’s history of previous mental illness to mislead them. It is one of the curses for people who, from time to time, experience mental illness, that they can become defined by their medical history rather than it simply being a small part of who they are.

Isn’t it a good thing that mother-in-law-from-hell Ursula is going home?

I’m not sure. While Ursula is truly ghastly, she does offer some degree of protection from Rob’s more diabolical deeds. As far as we know, she isn’t the one who has been tampering with ovens and bathwater, hiding things or messing up orders at the shop so that Helen has started to doubt her own sanity.

What should Pat, Tony and Tom be doing?

They should also be listening to Helen, which means not necessarily believing everything they see or hear. And they should talk to each other and give voice to the individual concerns they are undoubtedly keeping buried under the surface. Family secrets are rarely a good thing.

But then they should be careful not to approach her together, as that could feel like ganging up. I think Tom might be the one most likely to gain her trust. Pat and Tony should make it clear that they are always there for her, no matter what has happened.

And finally, they should avoid recriminations and guilt. None of this is anyone’s fault. Except Rob’s.

Surely the idea of Henry being sent away to boarding school will bring Helen to her senses?

That’s a comment I read on Twitter. It is unkind and judgemental. Helen is vulnerable, abused and unable to think clearly. The chances are, Rob will make her believe that the pain of sending Henry away is something else she must bear for the greater good. But it could well be the trigger for Pat and Tony to stop trying to convince themselves that Rob is a wonderful husband and stepfather. Because whilst there are those who extol the benefits of boarding school, Pat and Tony are unlikely to be amongst them, especially not for their beloved five year old grandson.

What will happen to the evil Rob Titchenor?

Who knows? If life were fair, he would be prosecuted under the new laws covering psychological domestic abuse. He would go to prison, where he would get help to recognise that his own narcissistic tendencies are not only hurting other people, they are also damaging to him.

But life isn’t always fair. The chances are, Rob will somehow get away with having nearly ruined Helen and Henry’s lives, wrecked Charlie’s career, punched the saboteur, damaged Adam and Ian’s relationship, plus whatever he really did in the flood. And anyway he will be part of Helen’s life forever because of the baby, not to mention the claims he will undoubtedly make on her inheritence.

So we will have plenty more opportunities to discuss him on social media.

Surely this storyline has gone on too long? It’s making me distressed/mentally ill myself.

I disagree. Domestic abuse and mental illness are commonplace. If soaps were realistic, they would have many more such storylines. And this one is subtle. The woman is mature and the abuse is mainly psychological. I like the different angles the storyline takes. And that we can’t guess how it will end. If the most exciting thing to happen in The Archers was a risqué calendar, we’d be disappointed.

So I hope this particular storyline is allowed to run its course. It certainly isn’t making anyone who listens to it become mentally ill. That isn’t possible.
But it may trigger feelings in those who have been abused. Which is why helpline numbers are given at the end of the programme.

If you or someone you know needs help, call the National Domestic Violence Helpline on 0808 2000 247 http://www.nationaldomesticviolencehelpline.org.uk/

And if this story saves even one woman – or man – from domestic abuse, won’t that be wonderful?

A bit of courage

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

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

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

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

Go us. Thank you.

What Recovery Means to Me

I wrote a piece recently for HSJ about the importance of recovery in the upcoming Mental Health Taskforce report. And it got me thinking about what that much overused but, to me anyway, beloved word “Recovery” means. Here are my thoughts.

  1. Some people think that recovery is about getting better and then doing everything possible to forget that you were ever once unwell. But that would be a complete waste of the experience.

  2. Our minds are like our bodies. They never forget being hurt or ill. If we let them, they will incorporate the scars from our experiences and use them to make us stronger and better people.

  3. Recovery is about celebrating everything that has happened to us as an essential part of who we are, even those things that we may prefer to forget. This knowledge will help us as we face challenges in the future.

  4. There are no sudden or miracle cures for psychological ill health. Recovery is slow, often unsteady, and at times very painful. That is why we should celebrate those who have achieved it as much if not more than those who have borne and overcome physical illness.

  5. Sometimes we must go backwards in order eventually to go forwards, for example during therapy when exploring painful memories or damaging patterns we find ourselves repeating. And as with physical wounds, we cannot truly heal if we try to bury bad feelings deep inside ourselves. They have ways of getting out and causing harm at unexpected moments.

  6. The word Recovery has nicer connotations than Rehabilitation. But they mean essentially the same thing. Recovery does not mean that everything is the same as it once was. That would be impossible. Even the healthiest and luckiest people encounter loss and pain from time to time. Recovery means harnessing the lessons we can learn from life events, however terrible, and incorporating them to make ourselves wiser, kinder but also more vigilant of the triggers that cause us pain or are the warning signs that we need to take care.

Like many of you, I am reading the excellent but troubling report by the King’s Fund into the state of our mental health services. I thought Stephen Dalton, Chief Executive of the Mental Health Network of the NHS Confederation was sharp yet lyrical on BBC Radio 4 Today in his analysis of what patients and staff are facing, and in his condemnation of the government and NHS England for saying one thing but apparently doing exactly the opposite at the same time. And that made me think as well.

It seems to me that our mental health services will forever be in a state of recovery. We cannot forget the changes we have experienced, including many hard-won and stunningly positive ones, particularly in the last couple of decades. But we also must face up to the damage that is currently being caused by the ongoing service cuts, and the havoc wrought by ill-thought through initiatives to save money or confuse prevention and early intervention with specialist care. Imagine the uproar if excellent cancer services were to be cut because money was being invested in health promotion and cancer screening instead?

These cuts to mental health services are carried out through fear on behalf of providers who get ferociously criticised if they don’t accept the unpleasant medicine willingly, and ignorance rather than cruelty on behalf of commissioners who are cushioned from the direct impact of the risks faced by patients and staff. The story on the Today programme of a dangerously ill man taken by ambulance to a voluntary café as a place of safety, who then had to wait 3 days with his desperate family before a hospital place was found was not a one-off. This is the result of too many bed closures alongside near collapse of community services in many places. We must face up to what is happening and not pretend it is all OK, or we risk slipping back all too quickly to the horrors of the past.

So we must be vigilant, wise and compassionate about the state of our mental health system. For me, compassion doesn’t mean keeping quiet. It means speaking up with intelligence, evidence and passion for something that matters more to me and to those reading this than almost anything else.

Let’s get together and let’s keep making a noise. Mental health services are not some luxury item that we can do without when times are tough. They are the essential bedrock of our society. In tough times, we need to invest in them even more.

Being able to say this with courage, conviction and purpose is what recovery means to me.

Let’s be kinder about obesity

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

I always liked the beach

I always liked the beach

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.”

 

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

 

 

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.

 

Ignore Russell Brand and vote for mental health

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

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

My supporting evidence:

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

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

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

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

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

 

 

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?