Sarah Rae, a mental health service user, has brought together a nationally recognisable team of leading academics from across the country to develop a new innovative study.
Content warning: this article makes reference to suicide.
The study called MINDS, funded to the tune of £1m by the National Institute for Health Research (NIHR) and led by Norfolk and Suffolk NHS Foundation Trust, aims to improve the outcomes and experiences of those discharged from mental health hospitals by developing a new set of support packages and procedures inspired by the principles of healthcare engineering.
What are the experiences of people discharged from hospital?
Around 50,000 people leave mental health hospitals each year. However, research on hospital discharges shows that for a large proportion of those people, they have no care plans to support them after they leave.
In 2020 MINDS conducted a national survey of 120 discharged patients, which discovered:
- Over 50% of patients had no or little involvement in their discharge planning, and only 17% felt very involved.
- 52% had a discussion about discharge towards the end of their admission, but significantly for 46% of respondents, this only happened, either immediately before they left the hospital or not at all.
These findings collaborate the results of a more extensive 2017 study of patient experiences, run by the leading mental health charity Mind, which discovered:
- 31% of survey respondents were not involved in their care planning
- 23% were unaware of any plan
- Fewer than 9% felt very involved
- A third of respondents received less than 48 hours notice of their imminent discharge from hospital, and one in five was given no notice at all despite National Institute for Health and Care Excellence (NICE) guidance recommending at least a 48 hours notice.
Overall, the two surveys (totalling the experiences of 1,341 people) found that 40% of people leaving mental health hospitals have no concrete plan in place to support them once they have left hospital. Furthermore, NICE guidelines state that discharge planning should be co-produced between patients and staff. However, the combined surveys reveal that over 50% had little to no involvement in their post-hospital treatment planning.
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Patient testimony, detailed in the MINDS survey, demonstrate this on-the-ground reality and what effects this has had on the mental health of people being discharged from hospital. One respondent wrote:
‘The consultant literally woke me up at one in the morning and told me that I had 10-15min to pack all my belongings because I was being discharged. There was no warning so that I could have been able to mentally prepare.’
Another stated: ‘I was discharged straight to Jimmy’s night shelter. Jimmy’s weren’t expecting me. I’d been in hospital for two weeks. No care plan, no follow up.’
What might this mean for patient care outcomes?
Mind’s 2017 study concluded that patient recovery was being put at risk by far too many cases not following the standards outlined in the NICE recommendations. The study also pointed to research evidence indicating this lack of adherence may be leading to preventable escalations, including further crises, readmissions, and even suicides.
This conclusion is reflected in NHS data, suggesting that around one in twenty are readmitted to hospital within 30 days of discharge. Research also shows that people are most at risk of suicide post-discharge in the first week, notably on day 3, after leaving hospital.
To more fully understand this elevated suicide risk and its relation to the quality of post-hospital care, Mind in 2017 submitted a Freedom of Information (FOI) request to all mental health trusts in England and Wales. The request aimed to find out the proportion of post-discharge patients who were contacted by care services within the current NICE guidelines, which recommends a follow-up at least within seven days, or in 48 hours where a suicide risk has been identified. Mind’s analysis of their FOI request determined that at least one in ten people are not being followed up within seven days, amounting to at least 11,000 people in England and Wales.
Understanding why this situation is happening and how outcomes can be improved: the MINDS study
Sarah Rae and the MINDS study joint chief investigator, Doctor Jon Wilson, spoke with Mental Health Today about what they think about the material circumstances underpinning the current situation of hospital discharges and how their study aims to improve upon standards of care and outcomes.
Dr Wilson said that the research would look into multiple factors that may be exerting pressure onto the inpatient mental healthcare system, for example, material factors such as not enough beds, staff, or investment. However, he was keen to highlight that the current state of affairs is a “false economy… probably serving no one in the system”.
“The wards are chaotic. There are lots of readmissions, leaving people dissatisfied and not engaging in treatment; the community teams are not prepared. So, [the way it's working at the moment] is not helping anybody. [The solution] could be about finance, or it could be about just doing things differently.”
Ms Rae emphasised that the solution to the problems in inpatient mental health systems should not be thought of solely as a resource-dependent issue but must consider “what [staff] do when you're in hospital, to help you recover and get back to a meaningful life.”
Speaking about her personal experience of hospitalisation, said continued: “I was sat on that ward for eight months, totally bored out of my mind, nothing was happening therapeutically. So, it's also thinking about how the time on the ward is used. Some of that time could also be used for discharge planning and thinking how people are going to manage when they get out of hospital.”
Due to start this year, the MINDS study will be conducted in three distinct phases: a realist review, a cutting-edge utilisation of theory from healthcare engineering design, and then a practical application of these conclusions in hospital wards. Ms Rae and Dr Wilson said that the purpose of the realist review, including the use of ethnographic observations, is to come up with theories as to why the pressures are at pitch point in mental health hospitals.
While the second phase is will involve working with healthcare systems engineers at the University of Cambridge to improve the aiding and planning of the discharge process.
Ms Rae explained that this stage would use an interconnected systems approach, usually used in engineering, to address the challenging and complex problems currently present, ensuring that the whole system performs as required.
She said: “’Engineering, better care’ is a design tool developed by the University of Cambridge. It has never been used on this scale and in mental health to look at complex systems. Using the principles of engineering, rather than health, to inquire ‘why is this part unique and how is it related to the overall system’.”
“So, whereas a doctor might say, ‘okay, well, then we will give the patient more of these tablets, and that have this desired effect’. [That thought] is very linear. This is looking at a whole interconnected system, in the way you’d make a plane fly or design a car… Involving all the stakeholders: the patients and nurses on the wards, the operation managers, the Trust Boards, and the commissioners. Asking ‘what is your perspective on what's going on here’... Not just starting to design with them but looking at how we how could make this work as a holistic whole.”
The final stage of the three-to-four-year project will be implementing the first two stages through randomised control trials, which will then go ahead in London, Hertfordshire, Norfolk and Suffolk. Both Ms Rae and Dr Wilson stressed that this final process would have individual experiences at the forefront, tracking patient and staff members experiences in detail rather than viewing the success of their health engineering project from a macro, bird’s-eye view.
Ms Rae concluded: “We're not coming at this research with a hypothesis or an idea of what we're going to find. We don't know yet what we're going to find and what the end product will be… We don't even know what the problem is. So, we're going to back design the issue to solve that problem, and then try to develop something new, whatever that might be.”
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