Try to see it my way

As part of the programme we held a workshop about the Schizophrenia Commission which we have recently set up under the chairmanship of Sir Robin Murray. Around hundred people with direct experience of schizophrenia as service users or carers helped debate the issues and refine the questionnaire we plan to issue as part of a public call for evidence.

In a wide ranging discussion I was struck how frequently contributors came back to the issue of how they felt they had been treated by the system or by individual clinicians.

Not just what was done, but how it was done.

This issue strikes me goes to the heart of any vision of personalising care. It’s especially relevant in mental health care where personal interactions and relationships between those who provide and those who use services are a crucial currency of effective therapy.

Participants reported being treated without a sense of dignity and respect. They reported the lack of any meaningful information about the condition which they or a family member had been diagnosed with. They reported being told they were being given certain medication or other treatments without any explanation or the opportunity to debate and discuss options. They reported soulless environments on acute mental health wards with no interaction between service users and staff. 

Carers reported how considerations of confidentiality were used to exclude them from decisions about the care of a son or daughter when in the wider sense they would be a crucial part of the care network available to that individual.

None of this sadly sounded terribly new although I was struck by how common an experience it appeared to be in this group. There were exceptions and some participants had more positive experience of care and had encountered professionals who showed a great level of understanding of their condition.

All in all it sounded a long way away from the rhetoric of “No decision about without me”.

Why is this the case and what can be done to address the shortfall? I am sure that if I asked the majority of clinicians and others working in the mental health system it’s not how they would aspire to respond to the needs of people with mental illness and their families.

There are two sets of issues:  one to do with the “system” and another relating to the attitudes of professionals and the level of empathy they are able to demonstrate to the people in their care.

For those running the system and someone in each locality ought to, in some sense, be able to be answer to that description there are some obvious things to look at.  What about thinking through introducing a process of induction for new long term patients?  Universities now recognise the value of organising a welcome programme for students addressing both their academic and social needs and usually enrolling other people who have been through the experience (ie fellow students) to deliver it.  Why does the NHS not think of organising something similar for those who may be living with a condition for years if not decades and who are going to be major users of its resources?

Robust and formal care planning, so often talked about but so rarely seen in practice, is a powerful mechanism for forcing a more balanced and structured conversation between professionals and those using services. In the 2005 General Election organisations representing 17 million people with long term conditions demanded to have a care plan. In 2011 there aren’t 17 million care plans.

There is a need to work out what to do about confidentiality, crucially important, in particular to a small proportion of people with mental illness but a major hindrance for a bigger proportion of people and their families where it can get in the way of integrated care, at times putting people, needlessly, at risk.

There is a case for putting much greater emphasis on communication skills and the development of genuine empathy with the experience of those living with long term conditions like schizophrenia at the heart of professional training and development.

There is an obvious role for the employment of “peer workers”, professionals with a direct experience of mental illness as an integral part of mental health services and a clear role for service users and carers in delivering aspects of professional training.

As I said none of these things are new. Sadly they suggest to me that the things which matter the most to service users and carers are not the same as the things that matter the most to professionals and the NHS bureaucracy.  They also point to a lack of effective listening to and valuing of the opinions of those who use services and those who, outside the limits of the formal care system, provide the majority of care.

My proposition would be that this wouldn’t be how a supermarket chain like Sainsbury’s would look to run their business and it’s by time we stopped thinking it was an appropriate way of running the NHS.