Living with a long-term condition: the importance of psychological support

Guest blog

In a guest blog to coincide with the launch of our report on integrating physical and mental health care, Tessa Jelen writes about the importance of information and support – for both physical and mental wellbeing – for people diagnosed with a long-term condition. Tessa was a member of a focus group we ran as part of our research that explored service user perspectives on what well-co-ordinated, integrated care would look like.

The first shock after being diagnosed with emphysema and fibrosis was when I researched it on the Internet at the local library with my eight-year-old grand-daughter sitting next to me. ‘Incurable’ and ‘progressive’ was the verdict; ‘Goodness, that means I am going to die of it’, was my first thought.

Understanding my condition, the first step in coming to terms with my diagnosis, was frightening. I bombarded my respiratory consultant with questions in the short space of time allowed in outpatient clinics. But the help I was offered to enable me to come to terms with the condition in a positive fashion was very thin on the ground. Although my clinical questions were answered, there was little understanding among the health professionals I saw that I was asking so many questions because I needed mental re-assurance. I felt sorry for consultants managing patients during this phase: really good information sessions soon after diagnosis would help reduce the psychological impact for people diagnosed with a long-term condition.

I am lucky that I am able to research my condition, but I find that more and more respiratory patients lack basic understanding, for example, about how to take their medication properly or what the medication does. They are often confused and unable to find a route to gain help. There is uncertainty as the GP often relies on the consultant to be the focus for patients’ respiratory care.

At present, respiratory patients can access extra advice – for example, about diet – through psychological and community programmes, but this support is not available at diagnosis, only further down the line after the hospital consultant or GP recommends it. Learning to live with a long-term condition needs to be done through continual re-enforcement of messages: an 8-week/16-session programme does not achieve this.

Six years ago there was little or no community support in Westminster for people with respiratory conditions, so with the help of a local physiotherapy team we launched Breathe Easy Westminster, under the umbrella of the British Lung Foundation. Now, our Breathe Easy group works with both local community groups and national organisations.

A good example is our work with Dying Matters, a service that encourages people to talk openly about death and dying. We also offer Tai Chi and art classes, as well as befriending services linked with social housing as it became apparent that people were struggling with isolation, a lack of reliable transport and difficulty in knowing what services were available. Some people with respiratory conditions that we meet are sorely frustrated, which aggravates their condition. There are often communication breakdowns around their care and many are deeply unhappy. Other national organisations offer information and guidance – although the emphasis is usually on the physical rather than psychological impact of the condition.

I have only just realised how vulnerable people with long-term conditions can feel even long after their diagnosis. I realised this when I experienced a painful, sporadic problem with my shoulder: suddenly I felt out of control and experienced a complete loss of self-management. I just felt so vulnerable and depressed. Poor communication between health professionals, delayed procedures, my concerns not being listened to, nowhere to go to find re-assurance while I awaited a diagnosis all contributed to this. As the fear that this condition would be unresolved became more intense my need for psychological support became deeper, but this support was not available.

Perhaps this is why health services are experiencing more angry patients and nurses are having to cope with aggression. Surely this is a symptom of the need for deeper mental health support for those with long-term conditions, so that patients can realise that they can change their situation for the better, and not totally rely on the current relationship of ‘being done to’.

Perhaps this fear of ‘being done to’, of someone else taking control is a major cause of patients not taking up opportunities for support. There is a fear of loss of control, fear that someone else will take over, that they will be sectioned or hospitalised indefinitely. Those individuals that take advantage of community support are usually those who are mobile, still active, self-managing and who do not feel vulnerable. We need to consider how we approach and support those people living with long-term conditions who are experiencing fear and loss of control of their lives.

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#545886 Kirit mistry
Leicestershire south Asian diabetes support group

Excellent tessa this blog is great to read as I do think it's very challenging with the lack of information and services to support people with long term conditions more to help them manage better.
Having been a carer for both of my parents who first language was not English I had to ensure that I attended all of their appointments to ensure that they were not misrepresented and their received appropriate support and culturally sensitive services for their conditions as well as relevant information.

As a diabetic patient after being diagnosed in 2009 after 5 years trying to manage my condition and meeting other patients with diabetes from south Asian communities I decided to set up a south Asian support group In Leicester to help others and myself manage the condition and start to influence and get our voices heard due to being very disappointed not being engaged or lack of services that was culturally sensitive. Also I have found lack of bame patient voice so now trying to empower other patients to have their voices heard.
So final point I would like to raise after reading this blog i need to highlight challenges patients from bame/ diverse communities who have communication barriers and lack of awareness of support services so how do we ensure their needs are met in a sensitive and competent way? Thanks Tess for the blog which made me think in 2016 we are still facing challenges around equality , communication and representation to help us address the importance of adequate support and cultural appropriate and sensitive services for patients with long term conditions so do we need to champion and be engaged in co-production to ensure better outcomes for all long term conditions . Best regards kirit Mistry

#545892 Geraldine Child
Direct Voice Manager
Agewell CIC

Agewell works with older people on health promotion , falls prevention and discharge support.
We welcome this report. Highlighting these issues is long overdue.
One of the gaps we have noticed is support for stroke patients in dealing with the psychological, affective and cognitive problems caused by the brain damage which strokes brings. Rehabilitation seems to have a tunnel vision focus on physiotherapy.

#545896 Philip Baker
Director Commissioned Services
National Rheumatoid Arthritis Society

The 10 Priorities make perfect sense and Tessa eloquently underlines some key elements around LTCs. Whether the diagnosis indicates life-limiting or not it will certainly be life changing, and no one should underestimate the nature and degree of the shock and the adjustments that have to be made. With a condition like RA swift and aggressive treatment is essential at the outset, but we often see people who delay because they are frightened of the impact of the medication and haven't come to terms with the `life-time' implications. Simply delivering the (bad) news and leaving people to fend for themselves is inhumane and bad economics in the long run.

#545903 Michael Held
External Liaison

Suddenly discovering that you have a pretty much untreatable long term condition results in a kind of bereavement. You have lost the life (and expected future) that you had planned for - which can be psychologically the same as the death of a spouse. Current NHS mental health services do not provide the necessary counselling for this. Third sector groups can be useful but do not have the time or resources to do much more than offer a consoling hand.

#545906 dawnmignon.smit...

Absolutely agree.

As someone with a life-long rare disease, with which I lived successfully for many years, I experienced significant impact upon my emotional wellbeing following many changes in my health which coincided with and in part contributed to a sudden change/loss of the person and life I'd known. My story is here

I was lucky, in part, in that a short-term CBT model of psychological support was built into my specialised team. However. whilst, for me, CBT is a model I’ve found to be effective at an early point of adjustment to a new set of circumstances and when I have the resilience and resources to bring to the process; I personally have not experienced it as an effective intervention once issues have become enduring, complex and deep-seated and at the point of me, the patient, having lost resilience and internal resources in the context of a downward trajectory of physical symptoms.

Whilst entirely understandable, in the absence (I understand) of any other form of service being commissioned, and as an action driven by the best intention: the practice of passing the me from one short-term CBT approach to another because my needs had not yet been resolved, resulted in repeated re-assessment and starting from scratch with each new practitioner. I would want to pose the questions:
• What is the clinical rationale for multiple repetitions of a regime that has not had an effective outcome?
• How harmful is it to pass a patient from a regime which has not had an outcome to another service to offer the same regime from scratch?. I personally experienced this as my ‘failure’, particularly when, in spite of best efforts, I was unable to adopt recommended strategies due to failing health at the time. Also, the approach did not allow processing of any of the central issues which were not so much behavioural: that in spite of many successful years of employing successful strategies to self-manage I was now being overwhelmed by multiple traumatic and sometimes conflicting diagnoses, multiple uncoordinated appointments, multiple confusing/erroneous communications and deteriorating health which meant if I got to the CBT session in the first place I was doing something pretty miraculous.
• Is this commissioning model best value? If all the 6 or so assessments and short-course programmes I received within about 4 years were costed – how much money was spent on interventions that were not producing an outcome for me? What could be commissioned differently in the future?

My aspiration would be that the valuable CBT resource be directed at those most likely to benefit from short solution-based intervention, with others who continue to have unresolved or unmet needs that require deeper processing and coming to terms with loss being identified effectively at the end of the first one or two CBT interventions - making the case for the commissioning model to include a pathway that can support and enable timely, supported transition to longer term skilled talking therapy/psychotherapeutic support.

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