The thing I learnt most strongly when I joined a mental health charity nearly 8 years ago was that stigma and negative attitudes towards mental illness added an enormous burden to people affected by mental health problems and their families. Indeed it wouldn’t be overstating the matter to see stigma as the single biggest obstacle to improving the outcomes for those individuals.
I have always stressed that there were three reasons for this. First of all, stigma impacts dramatically here and now on the life chances of people with mental health problems. It prevents them getting jobs, it encourages social isolation, as friends and even family offer rejection rather than support, it leads to people getting a second class response from public services as is evidenced by the appalling physical health inequalities experienced by people with schizophrenia and other severe mental illnesses. Second, stigma and the fear of mental illness, prevents people being open about mental health issues and from seeking help. At the same time, it closes down the channels of peer support which sustain us through many other types of adversity. Finally stigma cuts off the public debate about mental health which, as is clear from so many other issues, is the engine house of getting politicians and others to change the system or make investment in better services.
Things are changing and my proudest moments as a mental health campaigner was to have been associated, while at Rethink Mental Illness, with Time to Change which over the last 7 years has made a very significant contribution to combatting stigma and changing attitudes for the better. Through social marketing and a range of local engagement activities Time to Change has helped to deliver a statistically significant shift in public attitudes and a reduction, in some areas of life, in the reported experience of discrimination.
Just as importantly Time to Change has not done this on its own but has successfully drawn on a wide range of organisations in communities and amongst employers to help spread the word and share the task. A clear mark of this has been the more than 200 organisations, in all sectors of society, who have signed up to the Time to Change pledge and made their own commitment to support the fight against mental health stigma. I am delighted that today my new organisation the Tavistock and Portman NHS Foundation Trust will be signing the pledge.
Signing the pledge is not a mark that we, or anyone else, has got everything right but it is a sign that we care and that we are prepared to commit focus, effort and resources to ensure that people who use our services and their families do not experience stigma and that we are prepared to welcome and support staff and students who have their own experience of mental health problems. Above all we are saying loud and clearly that this is something we are prepared to talk about and consider no differently from any physical illness or any other issue.
While I am delighted my own Board has so enthusiastically embraced this agenda and committed to signing the pledge and the resulting action plan, I am disappointed that so far so few NHS organisations have engaged with this agenda. There are honourable exceptions but in general it is fair to say that the NHS has been slow off the mark to take action to stamp out stigma and discrimination towards people with mental health problems who use it services. It has also been slow to recognise the impact which mental health problems have on its own workforce and to match the “best of class” good practice which employers in other sectors have followed in creating a mental health friendly workplace.
This is disappointing in its own right but it’s impact goes much further when surveys of the experience of people with mental health problems indicate that health and social care services can be one of the most significant sources of stigma and discrimination and one which has shown the least improvement in recent years. Behind the statistics are some terrible stories or people who have been treated judgementally when they have presented with suicidal thoughts or following self-harm or whose physical health needs have been overlooked because they are seen, inappropriately, as a consequence of their mental health diagnosis.
There has been much talk in recent years about the idea of “parity of esteem” between mental and physical health. If the NHS is really serious about delivering on this, one very good place to start would be for all NHS organisations to take the issue of mental health stigma seriously and commit to signing the Time to Change pledge. This is not beyond us, even in times when resources are badly stretched.
The NHS is one of our most treasured national institutions but it is put to shame if it is not prepared to challenge negative attitudes towards mental illness. It is time to change.
Details of Time to Change and how to commit to the organisational pledge can be found at the following link:
One of the most interesting issues I have worked on since returning to the NHS has been chairing a group of providers working together from across the statutory and voluntary sector in City and Hackney to design and deliver a system of integrated care for some of the most vulnerable patients in the area. Last Tuesday we sat down to review how our system would work when presented with some of the real life situations faced by patients and clinicians. It was a fascinating and productive afternoon and drew out, for me, some important and more generalisable lessons about what needs to be in place if we are to deliver effective models of out of hospital care which deliver better outcomes for patients and avoid or reduce the occasions on which patients are unnecessarily admitted to or detained in hospital.
The first was the frustration of not being able, routinely, to share information in a timely manner about patients’ history, needs and preferences. In the absence of this it can be all too easy in a crisis situation for an ambulance crew or others to admit a patient as a way of avoiding risk. The availability of the care plan at the point of care might make all the difference if that gave clear details of a pre-established crisis plan or of another source of advice with whom the decision about the risk of leaving a patient at home could be shared. If we cannot share the information electronically (and I think it is still a major indictment of a supposedly National Health Service in the 21st century that we haven’t cracked this) then there must be a place for approaches such as “Message in a Bottle” where a care plan is left in the patient’s home with a visible indication to visiting practitioners of its existence.
The second lesson was about the value of working with patients and families in advance of a crisis to discuss with them their preferences and to work out who to contact and how best to manage when a difficult situation did arise. This kind of preventative work ought to be the heart of effective care planning and can do so much to ensure that all parties are prepared in the event of a crisis when decision making inevitably tends to be less than perfect. It also reflects the opportunity to build up the kind of trust between patients, families and health and social services which make shared risk taking that much easier to deliver.
Some of the cases we considered highlighted the challenges of fitting care around the, sometimes messy, complexities of patients’ lives. There is a difficult boundary at times for practitioners working in circumstances where they have concerns about individual’s home circumstances. However either ignoring those issues or being too judgemental helps no one and where, for instance, such concerns turn a routine day admission into a hospital stay of 4 months the system is not working. Resolving such issues often play better to the skills of social work and the voluntary sector and they need to be given the opportunity to work with patients to find a way forward which works.
Time was often the key factor. Where a range of interventions whether clinical, or as often social or practical, could be accessed quickly then it would be possible to keep a patient at home. If not then a hospital admission inevitably became the default position. Alternatively the issue of time related to the ability for busy clinicians to spend the necessary time when required to contact other services and negotiate the necessary support. At times, even for the most dedicated clinicians, that became too difficult and, again, a hospital admission became the only viable option. In City and Hackney we have recognised the need for including in our model individuals who have the capacity and authority to resolve such issues.
The final lesson was in the very process we were engaged in. Facilitated multi-disciplinary discussion of individual cases helps identify what works and does not work in the way in which practitioners and organisations work together. Where this is done in a supportive and “no blame” manner and where action can result from the lessons learnt then it is possible to organically improve the integration and outcomes of care. Again such a “learning system” is central to the approach we are trying to put together in City and Hackney.
For me this was a good week for the integration agenda. The excellent report of the Barker Commission, published on Thursday, set out a compelling case for addressing the structural dysfunction of separating health and social care. Tuesday’s workshop highlighted for me how, at the local level, that when practitioners and managers are focused on patients not on organisational processes and interests real steps forward can be taken. That’s got to be the goal.
Like many mental health conditions, depression suffers from a stereotype. If schizophrenia is characterised by an inappropriate association with violence, depression can tend to be trivialised as something which is within an individual’s control to “pull themselves together” from – more of an issue of attitude than a real illness.
As Robin Williams’ experience and many powerful testimonies from people who have lived with depression show all so clearly, nothing can be further from the truth. To be stuck in the depth of depression is a truly awful place to be, a place which can lead someone to consider that taking their own life is preferable to continuing to live through what they are experiencing. Whether in touch with mental health services, or more likely not, people with depression will account for a large proportion of the more than 4000 people who take their own life in this country each year.
Even if not as extreme as that, depression can be a profoundly debilitating condition which significantly impacts on an individual’s quality of life, their ability to hold down a job, their ability to make and retain relationships and family life. From a societal perspective, depression is one of the largest causes of health related unemployment as well as impacting on the productivity of those who are able to stay in work.
Furthermore there is a strong link between depression and long term physical health conditions and where there is co-morbid depression it is likely that outcomes for individuals will be much poorer. So for instance, people living with diabetes are 2-3 times more likely to have depression than the general population and patients with chronic heart failure are 8 times more likely to die in 30 months if they have depression. All in all, poor mental health in this population is estimated to cost the NHS at least £8 billion every year.
Like many conditions, however, depression presents itself on a spectrum. For some people depression can be a self-limiting condition, the symptoms of which they are able to manage without medical intervention. For others medication, CBT or other short forms of talking therapies can provide effective relief of symptoms. However for a significant group of people symptoms are severe, long term and deeply disabling.
The Government has taken some action to address the individual and societal impact of depression and the introduction of the Improving Access to Psychological Therapies (IAPT) Programme in 2007 has made an important start to improve access to talking therapies for those affected. Those such as Lord Richard Layard and others who have campaigned and cajoled Governments of all hues to invest in this programme deserve much credit.
It would however to have been criminal not to accept this case and there is much more to do. 70% of people with depression do not have access to treatment – just try repeating that sentence with cancer rather than depression in the sentence. For those who do get access to treatment, waiting times can still be too long – it was very saddening to read, last week, the account of a father whose son with depression took his own life while on waiting to access the IAPT service.
Furthermore the options for people with depression are still too limited. Cognitive Behavioural Therapy (CBT) is a good intervention which offers benefits for many patients. However it does not work everybody and it is still very difficult for people, especially with more chronic and intractable problems, to seek a wider range of longer term therapies. There is the option to use the new right of choice in mental health introduced this April to address this but it is still hard to see how this would work in practice and how funding would flow to support patient preference
So this is yet another illustration of the scale of the challenge which faces Governments and the NHS if we are to deliver to worthy intention to create a parity of esteem between physical and mental health. Given the numbers affected (it is estimated that 8-12% of the population will experience some form of depression in any given year) and the impact the condition has both on those individuals and our society and economy more generally this is a challenge which cannot be ignored.
Picture thanks to Emma Scutt – @emmylouscutt
At the end of last week I was able to take a couple of days off to walk part of the Thames Path with my son, starting in Wandsworth and ending up in Cholsey in Oxfordshire. Blessed with some lovely summer weather it was a thoroughly enjoyable and refreshing break but it also made me reflect on rivers and, in particular, the Thames.
From a modern perspective it is easy to underestimate the significance of rivers in previous ages. While the Thames is at the heart of London’s identity and its most important cultural reference point it is hard today to imagine how completely central it was in the past to all aspects of London life. Since the invention of the railways at the end of the 19th century, we have been used to travelling, with relative comfort, to all parts of the country by land. Before then, however, water was by far the most important means of transporting both people and goods. Even the Romans with their fabled reputation for roads were heavily dependent on river transport.
The Thames has had a particular significance which has been central to the dominance of London, connecting, as it does, the capital both to the agricultural heartland of Southern England and to the sea. The Thames path, largely based on the original towpath, is itself a testament to the importance of the river as an economic highway.
A string of royal palaces: Hampton Court, Richmond, Windsor, to name but those we walked past, are a tribute to its political importance. Now, as in the past, the rich and powerful have chosen the Thames as the place to settle and display their wealth, and in many but not all cases, their taste.
Its economic importance may be diminished but the Thames remains a busy place with the river full of pleasure boats of all shapes and sizes. Our first day included the course of the Boat Race, our fourth that of the Henley Royal Regatta (with its elaborate village of restaurants, bars and other sources of riverside entertainment in the process of being taken down). We passed tens of rowing clubs on our journey and many rowers: the very serious and those just messing about on the river.
The Thames is a now an ecological success story. 50 years ago it was a dead and dirty river but as in other cases where our industrial past, has faded nature has fought back and reasserted itself. As we walked down the river we saw a wealth of birdlife, some of it familiar some more exotic. All sorts of fish now live again in Thames where only too recently nothing could survive. A series of nature reserves along the route such as the London Wetland Centre provide the opportunity to see and learn about some of the rare wildlife which has remerged around the river.
A river makes a brilliant companion for a long walk. It remains beside your side while slowly changing in its own character as it casts off its urban regalia and puts on my comfortable country garb. A particularly attractive discovery of the trip was the succession of aits or eyots (an old anglo-saxon term) small islands which bedeck the river like jewels along its course.
Then there are the bridges, the most obvious landmarks for progress along the river and each with their different character. Some like the bridges at Hammersmith, Richmond and Chertsey provide some of the most elegant viewpoints on the route; others like those which carry the M3 or M25 across the river are a less welcome intrusion of contemporary things onto the more tranquil world of the river. The private toll bridge between Pangbourne and Whitchurch on Thames (in the course of being rebuilt) was a lovely discovery and an interesting reminder that private enterprise has a long track record in the control of means of transport. In the past, as well as bridges, as series of ferries would also ply the river. Few now survive but it was good that our journey included one from Weybridge to Shepperton, a touching reminder of times past.
The river has its literary associations. We followed in the steps of some of Dickens’ characters, ambled along stretches of the river in which Kenneth Grahame set Wind in the Willows and were often reminded of Jerome K Jerome’s hilarious Three Men in the Boat.
I have often thought that a river provides an apt metaphor for the passing of history and one’s own life. Much of the character of England is played out along the Thames . A few days walking along its banks are a good and peaceful way of reflecting on both.
One of the best insights I took away from the recent NHS Confederation conference was the point made by Rob Webster in his keynote speech that it was time that we saw the NHS, less in terms of buildings and kit, and more in terms of it being a collection of people: clinicians, volunteers, patients and carers. I’d like in this blog to take that point a stage further and to focus on the issue of relationships and why investing in good relationships may be one of the best things we can do to help transform the NHS.
That is not to belittle the logistical aspects of healthcare delivery. In a system as complicated as the NHS, it is crucial that we become better at understanding the optimal approaches to deploying what are often expensive resources to deliver the best outcomes for patients within the finance which is available at any given time. But if we focus exclusively on those issues, as we often seem to do, then we are missing a big deal because effective relationships between the different players is, in my view, key to high quality and sustainable healthcare.
Let’s start with the most fundamental relationship of all – that between those providing and receiving care. Despite all the wonderful developments in science and medicine, human relationships are still a crucial therapeutic ingredient. It is perhaps easier for us to appreciate this in the world of mental health with its tradition of talking therapies but I would argue that it is of great importance in other areas of care too. Medicine is not always an independent agent and patients, especially those with long term conditions, have a major role in their own recovery or, at least, in the management of their own condition. Clinicians who work on relationships, who listen and treat patients with respect, who involve patients in decisions about their care, who coach them effectively in the skills of self-care will, in my view, be more effective.
This is not just about being nice or having good communication skills, important than though those things are, it is the recognition that therapeutic relationships are fundamental to good clinical practice. Many clinicians do this instinctively but it seems to have little place in clinical training and the way in which we organise care on an increasingly fragmented basis serves to discourage the development of such relationships.
The second area is the relationships between practitioners. Much healthcare is delivered in teams. Good teams are greater than the sum of their parts. They share their knowledge and they often share the practical and psychological responsibility for patients. I was very moved in a recent meeting with one of our clinical teams to hear the intensity of a collective sense of pride and relief of how they had successfully supported a young person in a period of acute crisis.
Bad teams are dysfunctional. It would be an interesting piece of analysis to identify in many occasions poor relationships and a lack of effective joint working had been a root cause in a patient safety incident. Poor relationships also help engender a poor culture in organisations. It was very powerful hearing Helene Donnelly, a whistleblower at Mid Staffordshire, and now an Ambassador for Cultural Change at Staffordshire and Stoke NHS Trust, describing how poor relationships undermined the relationships between professionals which should have supported a collective interest in good standards of patient care.
Sadly as a particular factor in healthcare, relationships can be undermined by examples of tribalism between different groups of professionals or what Freud described as the “narcissism of small differences”. The diversity of professional perspectives can be a very positive force for good in healthcare but when energy is narrowly focused on defending a profession’s own ideology or resources it is less so.
The last crucial strand of relationships are those operating across organisational boundaries. The integration agenda and the challenges of meeting the needs of patients with the most complex requirements has highlighted the need for us to find effective means of developing effective models of care which can operate across organisational boundaries. So often the NHS reaches for structural solutions to issues which, like integration, are fundamentally about relationships, between senior leaders and between practitioners on the ground. It is striking, in my book, that some of the best progress on integration is being made in places where continuity in leadership has allowed relationships to develop over a period of time.
So what does all of this mean. Again three things.
It means the NHS should recognise the importance of relationships both in the heart of the therapeutic process itself but also in how it mobilises itself with its partners to deliver complex goals.
Second it highlights the needs for skills around relationship management and systemic thinking to have a much bigger role in the training of clinician professionals and NHS managers.
Third it points to the case for investment in building, maintaining and repairing human relationships as just as an important an element of service transformation as buildings and technology.
Good relationships are indeed at the heart of better care.
One of the advantages of having a classical education is having some insight into the origins of words in our own language. The term “idiot” is an interesting case in point which originates from the Greek word for “private citizen.” In its linguistic journey to modern English it has acquired the meaning of somebody who is stupid and uneducated. It’s worth dwelling though for a moment on the insights provided by the original Greek meaning.
Despite its different meaning the ancient Greeks, and especially the democrats of ancient Athens, were no greater lovers of idiots than we are today. In his famous funeral oration for the first victims of the Peloponnesian War, and still one of the best bits of political oratory you can read, the Athenian statesman Pericles says:
“We do not say that a man who takes no interest in politics is a man who minds his own business, we say he has no business here at all.”
For the first democrats the active participation of citizens (or at least male citizens – a whole other story there!) as equals in the business of the state was an essential characteristic of the model of government they had created.
The Athenian democracy was not a perfect institution and, as in all cases of human behaviour, some of its fine words were followed more in the breach than in the observance. However this vision of active citizenship still has a resonance today. I would like to use this blog to set out 5 characteristics which set us apart as active citizens and not idiots:
At the heart of our democracy is our right to use the ballot box to elect those who govern us. While having sympathy for the frustrations which many have with conventional politics we cannot expect more of politicians if we cannot be bothered to vote. A turnout of 36% in this year’s local elections or even the 65% at the last General Election shames us. The ability to change the Government through the use of the ballot box, rather than at the point of a gun, is aspect of civilised life which many brave people have given their lives for in the past and which some parts of the world still do not enjoy today. Think of the Suffragettes or of the queues patiently waiting in South Africa in 1994 to cast their ballot for the first time.
A healthy democracy is distinguished by an informed debate of the issues of the day in which citizens themselves are able and have bothered to participate. Not everything has gone backwards, but it is disappointing to see how often it is portrayed as a virtue not to be interested in politics and how trivialised aspects of public debate have become. Television has a lot to answer for but I would also point a finger to a general shift in our values and, in particular, the values of our educational system which increasingly stress economic usefulness over the skills which contribute to the active citizen. The Internet and social media with their democratisation of debate offer a chance to redress the balance and give ordinary people a vehicle to influence debate and decisions. Of course with debate comes the need for tolerance. At times we need to remember the words of Voltaire:
“I do not agree with what you have to say, but I’ll defend to the death your right to say it.”
Meeting our obligations
In the Funeral Oration Pericles also says:
“We are free and tolerant in our private lives but in public affairs we keep to the law”
At its best Britain lives up to this adage but there are also many worrying signs of the idiotic tendency to look after own interests above any respect for the common good. Whether it is cyclists jumping lights, MPs and expenses or rich people and corporations looking at how they can avoid taxes there are growing areas of life where the bonds of common life are undermined by a sense that it is justifiable to see “what we can get away with”. In a democracy it is possible to have a debate about what laws we are governed by and what level of financial contribution we are asked to make. Once made as active citizens we should respect the laws or campaign for their change.
Making a difference
The same spirit of participation in Pericles’ eyes also stretches to private relationships between citizens.
“We make friends by doing good to others, not by receiving good from them.”
Beyond public debate active citizens can also find ways to make a difference directly. It is definitely one of the positive things about this country that it has such a rich tradition of charitable and other kinds of voluntary endeavour. Charity should not be an alternative to what the state should provide but it is a powerful channel for those who believe that the best way to change the world is to do something about it yourself, today. For a more eloquent account of what I mean, look at the Independent on Sunday’s List of 100 Happy People published today.
My final plug for the active citizen relates to good old fashioned qualities of courtesy and friendliness. If we find the energy (yes London I am talking about you) to recognise each other as human beings rather than irritating obstacles in the way of us achieving our next personal objective then that will be one small step to making the world less idiotic.
For the full text of Pericles Funeral Oration look up Book 2 of Thucydides’ History of the Peloponnesian War
Picture courtesy of @journodave
For the link to the Independent on Sunday’s 2014 Happy List: