Joyrider - capturing the feedback of mental health patients Claire Ginn And David Halsall NHS England Analytical Services September 2014

In response to the Francis review it was recognised that the needs of the patient should be the first priority of all staff working for the Department of Health and NHS The Department of Health committed to working together for patients 1. “Patients come first in everything we do. We fully involve patients, staff, families, carers, communities, and professionals inside and outside the NHS. We put the needs of patients and communities before organisational boundaries. We speak up when things go wrong” Patients first and foremost 1 Patients First and Foremost - Gov.uk

In the NHS reforms many of the responsibilities held by the Department of Health transferred to a new body, NHS England. The DoH directs NHS England through a “mandate” This includes 2 : Developing better healthcare services for offenders and people in the criminal justice system which are integrated between custody and the community, including through the development of liaison and diversion services. Championing the Time to Change campaign to raise awareness of mental health issues and reduce stigma, including in the NHS workforce. The Mandate from The Government to NHS England includes specific references to mental health and the criminal justice system 2

Mental health has been the Cinderella of the NHS for too long…. NHS England non-executive director Lord Victor Adebowale has called for mental health to be put at the forefront of its reforms to the health and social care system It is the role of operational researchers within NHS England to ensure that positive steps are taken to ensure mental health issues are embedded in the culture of NHS England in general and Analytical Services in particular The challenge is to get analysts to move out of their “white coat” comfort zone being observers and reporters of the mental health system and become more involved with the issues patients face on a day to day basis.

Mental illness is defined by NHS Inform as “A diagnosable condition that significantly interferes with an individual's cognitive, emotional or social abilities e.g. depression, anxiety, schizophrenia.” Mental Health (MH) definitions generally exclude addictions such as drugs and alcohol, although people with MH issues are often also substance abusers. Around one in six of adults have a common mental health disorder (for example anxiety or depression). One in one hundred people have a severe MH problem such as psychosis or schizophrenia Adult mental health services cost the NHS around £7bn per year So what is mental illness?

Psychoses are disorders that produce disturbances in thinking and perception severe enough to distort perception of reality. Symptoms include auditory hallucinations, delusional beliefs and disorganised thinking. These may be accompanied by unusual or bizarre behaviour, and difficulties with social interaction and activities of daily living. Patients are seldom dangerous to others. People with a psychotic illness can make a full recovery, although a majority will have repeated psychotic episodes over their lifetime or some degree of persistent disability. Psychoses can be serious and debilitating conditions, associated with high rates of suicide, emergency hospital episodes including being held under “section” What is psychosis

A significant number of prisoners suffer from a psychotic disorder. 14% of women and 7% of men serving prison sentences have a psychotic disorder; 23 and 14 times the level in the general population. Personality disorders are particularly prevalent among people in prison. 62% of male and 57% of female sentenced prisoners have a personality disorder. 46% of women prisoners reported having attempted suicide at some point in their lives. This is more than twice the rate of male prisoners (21%) and higher than in the general UK population amongst whom around 6% report having ever attempted suicide. Prison Reform Trust Mental Health care in prisons

The community mental health survey – A questionnaire survey of 13,000 patents primarily intended for use by NHS trusts to help them improve their performance. Key finding the latest survey include positive finding about the health or social care worker that they had seen most recently improvements can still be made in most other areas including medication. care planning. care reviews. crisis care. support with day to day living. So how do we currently seek the view of mental health patients?

Questionnaire surveys and face-to-face interview can be a very effective way to collect patient feedback. But when patients experiences fall very short of expectations they seldom trigger the action needed. “Evidence-based decision making is great in theory. However, the environment we operate in is fast-moving, uncertain and complex. It throws up lots of noise that gets in the way of the useful information we need to take effective decisions. To achieve their full potential, today's public sector leaders need a tool that enables them to filter out this noise so they can quickly focus on what's important in any situation, and take decisive action” Organisational Storytelling: Reading Between the Lines The problem – Can we improve the way in which we collect the experiences of MH patients?

A core competence of operational researches is to analyse situations and structure problems in a way which leads to effective policy intervention. NHS England analysts have been recently been more involved with talking to patients as a way of improving evidence based policy making and meeting the commitment to the response to the Francis review. We have now experimented with moving from collecting and presenting evidence from patients to using real patients experiences as the basis as a storytelling narrative. In the case we are presenting today in the form of a short film – Joyrider Using storytelling to influence analysts and policy makes

Link to the film

Find a patient who wanted their story to be told who was sufficiently representative to influence policy making but also controversial to simulate debate Have a first interview with “Alex” Write a business case for funding the filming (£800) Have further interviews with “Alex” Write draft script and share with Alex Hold auditions for an actor to play lead role Find locations for filming Have a rehearsal day with actor and key crew Film in one day Edit and share at analysts Awayday How did we make Joyrider?

Interviews with Alex Alex had been involved with us before the Joyrider project and we had build up a degree of trust. We held an initial 90 minute taped interview which covered the key points of his story. This was mainly him telling his story but there were point where he became defensive and tense at which point we moved quickly onto another topic From this key themes which aligned with NHS priorities and commitments were identified. Non-mental health issues with Alex and relatives were also identified and used within the script to reinforce the issue of the inter-relationship between the two

Using an actor to play Alex Why didn’t we use a documentary style interview with Alex? A key issue with this project is that we wanted to concentrate on honing into the key issues. It can be argued that documentary film making can be just as staged as a scripted narrative using a actor. We want to test out if a scripted narrative using an actor had more impact than a documentary style film The real Alex was present for part of the rehearsal. It was a significant unknown how the real Alex would take to seeing an actor play his role. A number of analysts who had no previous experience of film making got involved in the project at this stage and actively participated in the rehearsal process. “Seeing the actor and the real Alex work together made me understand for the first time how hard it must be to go through life with schizophrenia” Amy, NHS England analyst Actor Wilson Green

The day of filming The filming in some ways was the easy bit It is a project like any other project, to be planned and executed. On the filming day we had a mixture of NHS England analysts and film making professionals working together It was all shot on location in Huddersfield at one of our relatives house, who was also roped into playing the police officer. The car crash was an interesting section to film as it needed a lot of blood !

The completed film was shown to the 150 NHS England analysts at a national away day event. The objective of showing the film was to help make the link between what NHS analysts normally measure and report and the outcomes that the NHS is trying to achieve for patients. It has also been used by a number of front line organisations as a training video It has also been used to build credibility wider than the analytical community that we are able to reflect soft and hard measures on patient experience. The world premier of Joyrider

The analytical staff involved in the Joyrider project have gained confidence in working in the area of mental health. The Joyrider project has challenged many of our pre- conceptions of how the NHS works in practice and helped us to think of problems from a patient rather than a service perspective. It has made us even more determined to use analysis to improve care for all patients, especially for those with the most complex needs. What we have learnt