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No matter how good their medical care, people with long-term physical illnesses also need time and space to talk
Making time to talk
Almost one in three people in the UK – 30 per cent of the population – have a long-term health condition (or more than one) that significantly affects their quality of life. Some of these conditions can be managed, and self-managed, thanks to developments in medical treatment – diabetes, asthma and arthritis, for example. Some used to be more immediately terminal than they are today – for example, HIV and Aids, cardiovascular disease and cancer. There are approximately 15 million people living with these significantly disabling health conditions in the UK.
The same proportion – 30 per cent – of people with long-term conditions (LTCs, in NHS jargon) will also have a mental health problem: depression or anxiety or other affective mental health problems, or an organic mental illness such as dementia or some cognitive disorder that is linked to their physical illness. Depression and anxiety are particularly prevalent among people with cardiovascular disease, diabetes, chronic obstructive pulmonary disease (COPD) and arthritis, and among those with cancer, HIV/Aids and asthma. More than one LTC increases the risk.
So far, so predictable: you would feel anxious and depressed if you had a life-limiting or severely disabling or very painful condition (for some, it can be all three). However there is clear evidence that, as the Government states on the title page of its 2011 mental health strategy, there is indeed ‘no health without mental health’. People with long-term physical health problems have poorer outcomes and cope less well with their illness if they are also depressed. This is spelled out with terrible clarity in the statistics. There is a direct association between poor mental health and poor physical health. Patients with heart conditions and depression have higher mortality rates than those without depression: one study found that people who have chronic heart failure are eight times more likely to die within 30 months if they also have depression. People with diabetes and depression are 36–38 per cent more likely to die than those without depression. People with COPD and depression suffer worse health and more breathlessness than those who are not depressed. In at least one study, people with asthma and depression have been found to have twice the mortality rates than those with asthma alone.
The links are complex and not yet fully understood. They involve biological, psychosocial, environmental and behavioural factors. The relationship is also two-way – having an LTC is a risk factor for depression; having depression is a risk factor for a range of long-term physical illnesses, in addition to the greater risk of mortality, and can increase that risk by up to 100 per cent (in the case of heart disease). Multiple comorbid physical and mental illnesses multiply the risks. And if you factor in social-economic conditions, a third, very significant dimension emerges: people living in poorer areas are not only more likely to have long-term physical illnesses; they are also more likely also to have depression and other mental health problems. In one study, more than half of people with three or more long-term conditions living in areas of high deprivation had mental health problems.
These facts are all summarised incisively and concisely in a report, Long-term Conditions and Mental Health: the cost of comorbidities, published by the King’s Fund and the Centre for Mental Health in February this year.
The biology is about stress and its physiological effects. At an emotional and material level, depression is linked with low motivation, low self-esteem and low self-worth, which leads to poor self-care, which doesn’t help if you have a long-term illness that requires you to take good care of your physical health. Long-term illness, whether mental or physical and even more so when you have both, inevitably leads to poorer quality of life. For most people it means reduced income, increased poverty and risk of debt, decreased independence, increased social isolation and exclusion and increased anxiety, all of which can perpetuate the depression.
The King’s Fund report is, as its title suggests, concerned mainly with cost-efficiency. Between 12 and 18 per cent of all NHS expenditure on treating long-term conditions will be spent on treating issues related to poor mental health, the King’s Fund estimates: that’s £8–13 billion in England a year. It says that ‘integrated care’, or ‘collaborative care’ is the answer. In NHS jargon, this means developing a combined medical and mental health care package for people with LTCs. Importantly (this is where the collaborative bit comes in) it also means involving people with LTCs more in their care and treatment – doing with, not simply doing to.
This is not a new issue but the Government has bumped it up the agenda by putting ‘personalisation’ at the top of its health and social care agendas. People/patients should (or must) take more responsibility for managing their own health and care needs. How you interpret this will depend on where you are coming from: for some, this is a long overdue recognition of the rights of disabled and sick people to be treated as individuals and to have a greater say in their care and treatment. For others, it threatens a loss of desperately needed care and support services in the name of cost-cutting and involuntary independence.
The Government’s mental health strategy, No Health without Mental Health, also foregrounds the links between mental health, throughout the lifespan, and physical health and wellbeing. NICE guidance on long-term conditions recommends the use of psychological therapies. The latest Department of Health guidance on LTCs, the Long-Term Conditions Compendium of Information, the third edition of which was published last month, specifically says that people with a physical long-term illness should be routinely assessed for depression and anxiety as part of their care package.
IAPT is picking this up in a new ‘pathfinder’ initiative, launched just last year. People with LTCs have always been part of its remit, as have people with medically unexplained symptoms (MUS) – a condition also regarded as having a strong psychological component. The new ‘pathfinder’ programme is supporting local IAPT services to develop models for working more closely with primary care services to give patients with LTCs and MUS better access to IAPT talking treatments.
Says Andre Tylee, Professor of Primary Care Mental Health at King’s College London and IAPT National Advisor on Long-Term Conditions: ‘We know that there is a psychological side to long-term conditions, as well as biological mechanisms and social factors. Here at KCL we researched coronary heart disease and depression and when we talked to people they gave us a long list of negatives in their lives. We found that loss was the main feature in these narratives: loss of role, loss of relationships, loss of work, loss of physical health, loss of youth.
‘There are lots of possibilities for helping people. Very often talking treatments can help with the coping side, with problem-solving and relationships and social networks, because very often people become socially isolated. Men in particular, will often say they have never talked to anyone about it. They stay at home. They never go out and meet other people. Peer support is tremendously important.’
There is certainly good evidence from existing research and practice that the cognitive behavioural treatments that predominate in most IAPT services are effective in helping patients manage the cognitive processes directly related to their symptoms: panic, for example, in relation to breathlessness; disordered eating in relation to diabetes; stress and anxiety in relation to cardiac disease. The evidence for the effectiveness and role of other talking treatments is less robust.
However, talking to people who are working with people with LTCs and MUS, it is equally clear that cognitive behavioural approaches have their place, but they are perhaps limited to the bits of the iceberg that show. Delving beneath the waves may require a more relational approach, and often over a longer time scale.
Stephanie Singham is Senior Psychotherapist at the diabetes centre run by Guy’s and St Thomas’ NHS Foundation Trust in central London, where she has worked for 12 years. The centre offers a one-stop-shop for people with type 1 and 2 diabetes. It takes referrals from the trust’s secondary care diabetes team and from primary care services, and offers medical treatment, podiatry (essential for people with diabetes) and dietetics. The psychotherapy service provides brief (up to 24 sessions) cognitive analytic therapy (CAT) to patients struggling to manage their diabetes, and assessment and referral to other treatments, including clinical psychology and long-term psychotherapy and group therapy at St Thomas’ Psychotherapy Department.
‘A large proportion of the population with diabetes are struggling with their diabetes care not because of lack of knowledge or education about how to manage it but because of emotional, psychological and social barriers that make it hard for them to self-care,’ Singham says. ‘It’s essential to tackle the emotional and psychological issues. If you’re struggling with low mood and depression, it’s hard to feel motivated to exercise, cut out smoking and alcohol and eat healthy foods. You can get away with these behaviours if you are physically well, but when you have diabetes, they can be extremely dangerous.’
Some of the people referred to her have social difficulties that are getting in the way of their ability to manage their diabetes. ‘I see people with housing, money, employment and other social issues that affect their self-esteem and mood and that in turn affects their diabetes care. We draw our patients from Lambeth and Southwark, both very deprived areas with high numbers of Asian and black African people. Diabetes is a self-managed condition, and when someone is depressed or anxious it’s very difficult to feel able to manage the level of self-care necessary. Some are struggling to adjust to a new diagnosis or the impact of living with diabetes for a number of years.’
But many of her patients bring more deeply rooted problems. A psychodynamic psychotherapist and cognitive analytic psychologist by training, Singham’s approach is guided by relational theory. ‘I’m looking at their early relationships and how that impacts on their ability to self-care. If someone has experienced neglect and deprivation in their childhood, if they’ve grown up feeling they weren’t noticed, or their primary carer wasn’t emotionally available to them, or if they grew up feeling abandoned or they weren’t somehow good enough, they will often act out these patterns of relating towards themselves.
‘Some people are driven to succeed because they’ve never felt good enough; their own health, and that means their diabetes self-care, has gone to the bottom of their list. Some people with early deprivation have no internal model of self-care; they really do not know how to take care of themselves. That is where the analytic aspect of CAT comes in – it addresses the ways in which people have internalised their experience of care in their early lives and are now acting it out in their adult life. We can understand why people neglect their diabetes self-care as a form of deliberate self-harm. Part of my job is to open that out to people and explore it and free them to address their health.’
The psychotherapy service was established in response to the realisation that there was a group of patients who had become trapped in a revolving door: no matter how much psycho-educational information they were given, they still kept coming back saying their diabetes was out of control and they didn’t know why. ‘It would lead to frustration and despair in the patient and the professional and we realised another approach was needed. It is very, very difficult for people to resolve their health care difficulties until they have resolved their psychological difficulties because these will always be a barrier,’ Singham emphasises. ‘It always comes back to “No health without mental health”. Without mental health, things can’t move forward and we get stuck in a revolving door.’
Not everyone referred to the service has arrived at a place where they can benefit from CAT. ‘People need to have some insight. If we can apply our understanding to their difficulties and they can make sense of what we are telling them, we know that we can help patients change their behaviour,’ Singham says. She offers between six and 24 sessions of CAT. ‘We work alongside the patient. We don’t do things to them. The patient is expected to be active and participate in the thinking. The psychotherapy is targeted at a population for whom this number of sessions is enough and will enable them to make changes. We are not aiming to solve all the problems in their lives. We’re aiming to equip them with the tools to continue the work when the therapy has finished, and the skills to be their own therapist. Sometimes people don’t feel able to make the changes, or aren’t in a place at the moment where they have the insight or feel they can make changes. I either refer them to their GP or to a counsellor in primary care or to their local community mental health team, where they can get some supportive work. We tell them our door is always open to them if and when they want to come back.’
Julia McLeod is a lecturer in counselling at the University of Abertay Dundee and formerly manager and counsellor at the Tayside Centre for Counselling, a community counselling research clinic within the university. The clinic, has had to close due to lack of funding, offered open-ended integrative/pluralistic counselling to patients referred by GPs from Dundee city centre. McLeod noticed the centre was receiving an unexpectedly high number of referrals of people with LTCs.
‘I had assumed that the clients we would be seeing would reflect the kinds of issues I had come across in other places where I’ve worked as a counsellor – mainly anxiety, depression, relationship problems, bereavement and loss. Instead I found that a significant proportion were people who were struggling to cope with the consequences of long-term health problems, such as heart disease, chronic fatigue syndrome, multiple sclerosis, diabetes and cancer and people living with agonising pain for which there was no cure. I was also struck by the limited and short-term nature of the therapies offered to people with long-term conditions, which seemed at odds with the complex nature and needs of their conditions.’
Intrigued, she chose to focus her MSc dissertation on three case studies of women with LTCs with whom she was working, using transactional analysis (TA) within a pluralistic framework. They were all older women, married with adult children: one aged 54 who had been diagnosed with multiple sclerosis nine years previously; one aged 49 with fibromyalgia, and one aged 46 who had breast cancer and, following a double mastectomy, had other major health problems, including heart disease and recurrent chest infections.
McLeod’s exploration of the research on effective therapeutic interventions with people with LTCs produced some interesting findings. Most of the studies were unable to distinguish which elements of a multi-component care package were making the difference, she says. Her three case studies cannot, of course, be generalised to a wider population. But she was able to identify some key common elements that contributed to the successful outcomes reported by her clients. One was the importance of a caring relationship, which she says may reflect the fact that the person is mostly being ‘done to’ by medical care teams, rather than being involved as a partner in their own care. Another was ‘counsellor curiosity’ – the counsellor showing genuine interest in the client’s medical condition. Another was the client being able to tell their story and express their feelings in the counselling sessions, and having time to explore issues in depth. Learning coping skills was also important, as was getting support from the counsellor to face up to the possibility of death.
The flexibility – that she could, if needed, visit her clients at home or in hospital (one was taken very ill during the course of the counselling, but McLeod was able to continue to see her for her weekly sessions while she was in hospital) – was another key factor, and also that the counselling was open-ended. ‘An approach that limited the number of sessions available might have made it impossible for these women to work through the range of issues they needed to deal with,’ McLeod believes. Equally, an approach that offered just one model, such as CBT or psychodynamic psychotherapy, ‘would have run the risk of failing to give them what they needed’.
McLeod argues that TA and other integrative and pluralistic approaches to counselling are ideally suited to this client group because they are able to address the breadth of issues someone with an LTC might bring to counselling, not simply the issues directly related to their health. ‘How the illness affects each person is influenced by a whole range of factors. An integrative approach like TA means you can draw on a wide a range of resources, either sequentially or in combination to meet often highly complex and rapidly changing needs.
‘Some of the issues the women brought would have been appropriate for a cognitive behavioural approach, but after a couple of sessions they would want to return to very relational issues. They had all sorts of things going on in their lives that they needed to talk about and they had no one to talk to. Their families were frightened by their illness. They couldn’t cope with the fact that their mother or wife was no longer the strong one. Generally, their medical team wasn’t open to talking about issues outside their medical condition. Behavioural approaches are tremendously valuable for some things, like pain management, where CBT is really effective and works. But there is a need for something else that stays with the person over the long haul, through this huge transition in their life.’
Another important feature of TA is its collaborative approach. ‘With TA it’s not just the counsellor acting as expert; it’s about shared decision-making, what we can do together,’ McLeod says. ‘TA also takes account of therapeutic possibilities and activities outside the therapy room – the cultural, social and community resources on which the client can draw.
‘One of the ongoing strands of my work with these clients was about checking out what else they were doing or wanted to do, and if they needed help from me to try out new things. It wasn’t just the application of therapeutic techniques within the treatment room.’
She recalls the words of one of her clients who, having been very reluctant to follow up her GP’s referral for counselling, then became angry that she had not been offered it sooner.
‘Out of all drugs… it’s the counselling that’s got me through it. And had I been offered counselling at my diagnosis, then I would have handled it so differently, so much better… It would have been a totally different journey for me.’
Felt in the body
Medically unexplained symptoms are the bane of GPs’ lives. These are the ‘heart-sink’ patients, whose condition has no identifiable medical cause yet brings them back to the surgery again and again and prompts numerous, expensive and often highly invasive surgical investigations, often to no avail. As many as half of all new referrals to hospital medical clinics have MUS, as do one in five new GP consultations. The symptoms, in most cases, disappear without treatment within a year, although for some it can take up to 10 years. But for a small number the problems are chronic and multiple, and these are the patients who present the real challenge to GPs and NHS services.
Else Guthrie is Honorary Professor of Psychological Medicine at Manchester University and a consultant in psychological medicine at Manchester Infirmary. She is an expert on MUS and their treatment and has extensively researched psychological interventions that may help people with these persistent and multiple problems.
She says patients with chronic symptoms often have high rates of anxiety and depression, and many will have experienced childhood neglect and abuse. CBT approaches have been shown to be very effective at secondary care level but their benefits are less clear in primary care settings. Re-attribution – a technique commonly taught to GPs that involves giving patients a psychological explanation for their symptoms – can improve doctor–patient communication, but has been found to have little or no impact on the symptoms, and can sometimes make them worse.
Guthrie has researched the effectiveness of brief psychodynamic interpersonal therapy (PIT) for treating MUS in primary care. PIT, which is also known as the ‘conversational model’, was developed by psychiatrist Robert Hobson, who coined the evocative phrase: ‘Experience is felt in the body.’ It is based on psychodynamic principles but also incorporates humanistic and interpersonal elements. ‘The conversational model’ refers to what Hobson called the development with the patient of a ‘mutual feeling language’ and a relationship of ‘aloneness-togetherness’. Hobson deliberately wanted to move away from the one-sided psychoanalytic approach and establish a more equal partnership with the client. The therapist and client together develop a shared understanding of how the MUS are linked to interpersonal difficulties, and these difficulties are then explored through the dynamics of the interactions between client and therapist in the treatment room.
Guthrie says there is good evidence for the long-term effectiveness of brief PIT (seven sessions, including a three-hour introductory session, plus a final, important letter) with this client group in primary care settings. But, she says, GPs can also do much to improve the care of these patients by changing how they relate to them in the consulting room. In Hobson’s words: ‘It’s the stories that matter and how they are told.’ The conversation between GP and patient should be, not about the symptoms but about the interpersonal issues; the focus should be on relational, not cognitive, processes, she says.
‘It’s about understanding, about communicating a model of their symptoms that makes sense to the person. Doctors often fail to pick up on the psychological cues and focus just on the physical. It’s about achieving a balance. They need to continue to investigate the possible physical causes for MUS, obviously. But while they are going through this process they should also be exploring the psychological and social factors.’
In Hackney, north London, local GPs were behind the decision to commission, in 2009, a pioneering specialist primary care psychotherapy service to work with patients who were constantly coming to their surgeries with MUS and other complex needs, whom they felt powerless to help. The City & Hackney Primary Care Psychotherapy Consultation Service (PCPCS) was developed by the Tavistock and Portman NHS Foundation Trust for City & Hackney Primary Care Trust to help its GPs and surgery teams respond more effectively to the needs of these patients.
‘These are patients who, despite having very complex needs, don’t meet the criteria for referral to other primary or secondary mental health services and don’t fit the IAPT stepped care model advocated in NICE guidelines,’ says Brian Rock, the Service Lead at PCPCS.
The PCPCS was designed to work in GP surgeries, offering treatments to patients but also helping GPs and their surgery teams understand their patients’ needs and manage their care more appropriately and effectively themselves.
Engaging with the patient and winning their trust are essential, Rock says. ‘We are working with people who don’t necessarily have good reasons to trust professionals. They often have difficulty engaging with services, or have had negative experiences of treatment from other services. Many don’t think their difficulties are either caused by or lead to psychological difficulties. We start where the patient thinks she or he is. We listen to what they are telling us is going on. We take time to gather this up and to get a sense of what the difficulties might be.’
The PCPCS uses a range of therapeutic approaches, including brief (up to 16 sessions) individual therapy (dynamic interpersonal therapy, supportive psychotherapy and CBT techniques), group therapy (structured psycho-educational groups and mentalisation-based approaches), couples therapy and family therapy and therapeutic case management, including face-to-face and telephone contact. They also draw on community resources to provide support outside their own service and work with local ethnic minority community groups (Hackney has a high population of Turkish speaking people).
‘The reality of primary care is that patients present with conditions characterised by complexity, chronicity and severity. These patients need a response that can match this complexity. We offer a highly flexible model of care, including case management, that allows us to work across conventional service silos and to draw together a wide range of services and professionals around the needs of the patient,’ Rock says.
‘Our work is all about engaging people, ensuring they feel listened to, enabling them to tell their story, thinking with them about their symptoms and how they manage them and developing with them better ways of coping. Our ultimate aim is to help the person gain relief from their symptoms, or become better able to manage them. We are not in the business of engaging people in long-term therapy; we are here to help them move on.’
A central feature of the PCPCS approach is to support the ongoing involvement of the patient’s GP and surgery team. The referring GP is often invited to attend the assessment interview and PCPCS will work directly with them to help them gain more insight into a patient’s life and into their own responses to the patient. ‘We are interested in relationships, the nature of relationships, the feelings that may be raised in the practitioner when working with the person and how these feelings may be part of coming to understand their difficulties. We aim to help the GP understand their patient,’ Rock says.
PCPCS was originally expected to work with half the GP surgeries in the borough but has exceeded expectations. It supports 90 per cent of local surgeries, and has achieved impressive results. In its first two and a half years it has taken over 1,500 referrals. Of patients who were assessed and treated, 77–82 per cent report an improvement in symptoms, and 52–55 per cent have recovered.
Local GPs also report high levels of satisfaction: 88 per cent said they felt better able to manage their negative feelings towards these patients; 75 per cent said they felt better able to manage them within primary care; 74 per cent said they felt better able to help and support these patients themselves.
What all these services appear to offer are time to talk and someone who listens. They work with the person, rather than on them, and address wider, relational issues that may be affecting their ability to communicate not just with their family and social networks but with those responsible for their medical care. In an age of increasing compartmentalisation driven by evidence-based practice (services in silos are much easier to evaluate), these essential features may be harder and harder to find.