Mental health, including inpatient mental health, is in the news. In 2011, the government released a strategy entitled No Health Without Mental Health to close the gap between physical and mental health services.1 It stated ‘We are clear that we expect parity of esteem between mental and physical health services’ (contains public sector information licensed under the Open Government Licence v1.0).1 More recently, the 5-year forward plan now includes parity between mental and physical health2 and a policy document now promises to remedy the crisis in mental health care.3 The Guardian4 also ran a feature in the same week describing the deleterious effects of bed closures on mental health inpatient services. These problems, although highlighted in 2014, were on the horizon when this research programme was developed and its results are now even more relevant with the recognition of further problems and the political support for parity between mental and physical health services.
In this chapter we describe the background, rationale and aims of our programme, which investigates the inpatient experience of mental health service users. We do this from a stakeholder perspective by involving both mental health services users and clinicians in all phases of the study. Throughout the report we refer to the programme as PERCEIVE which refers to Patient Involvement in Improving Patient Care. PERCEIVE consists of four work packages (WPs), two methodological and two investigating innovations into inpatient mental health care. PERCEIVE’s overarching aim is to investigate and improve the delivery of inpatient mental health services. This descriptive information can also be found on www.perceive.iop.kcl.ac.uk/about.html.5
Background
In the UK, as well as internationally, there has been a gradual move to treating mental health service users in the community and a reduction in the number of mental health hospital beds. Alongside this there has been an unceasing pressure on mental health services to reduce costs. Inpatient care is the costliest component and so has been at the forefront of these cost-saving exercises. A great deal of effort, time and money has gone into improving mental health services over the past 50 years, often without any rigorous evaluation. This project seeks to examine the costs, the effects of innovative organisational changes made to service delivery, what activities service users engage in while inpatients and, most importantly, the experience of inpatient care from a stakeholder perspective.
Pressure on the number of inpatient beds available
Advances in psychopharmacology, changing attitudes towards mental illness and institutionalisation and the growing concerns about the quality of life in asylums have led to the gradual transition from the long-term hospitalisation of those with mental health problems to an increase in community treatment. However, hospitalisation for working-age adults is still an indispensable feature of mental health care and in 2011/12 accounted for around 40% of the NHS budget on mental health care for this group.6 Bed numbers have continued to fall over the past 50 years, although the need for them to provide respite for the acutely ill remains the same. This reduction in the number of beds means that wards are now generally reserved for the most acutely ill. Consequently, there is an increase in the proportion of inpatients who are compulsorily detained and in the levels of behavioural disturbance.7–9 In turn, this fraught environment can lead to difficulties in staff recruitment and retention. Taken together, this often brings about ward environments that appear to be more custodial than therapeutic.
Therapeutic activities and positive interactions on wards
Despite heavy investment, service users and front-line staff continue to complain about the quality of inpatient care.10 More than 50 years ago, when institutionalism was being re-evaluated, Wing and Brown carried out their well-known Three Hospitals study which confirmed that the hospitals that provided richer social environments and social opportunities had markedly less disturbance in verbal and social behaviours.11 Over the 5 years of the Wing and Brown study, the social environment improved in all participating hospitals and the clinical condition of patients improved alongside it. Those patients with the least access to the outside world, the least amount of social interaction and with the fewest interesting activities to take part in and who spent the majority of their time doing nothing were the most unwell. However, the study found that as their environments became more stimulating, they too showed some improvements.
All inpatient wards strive to provide an environment that is conducive to recovery and the importance of the social environment and therapeutic activities is recognised not just by those providing services, but also by those who use the services. For instance, a Mind report10 examining acute wards across England and Wales found that service users often complained about the intense boredom they experienced. The lack of therapeutic activities (or the cancellation of those on offer) is often as a result of staff shortages and/or too many demands being placed on staff. Service users are aware of this dilemma.10 Nurses are often blamed for being immersed in the crisis management for a minority of patients or for spending time on administrative duties; both of these problems have increased as the acuity on wards increases. Nurses are therefore much less able to spend time on therapeutic activities or in direct patient contact.12,13 Another reason often given by staff for not providing or running groups on acute wards is that service users are too ill to appreciate or take part in structured activities. However, it is not obvious that this is the case and it is the subject of some of our studies. This is not borne out in empirical studies. For instance, Kavanagh et al.14 showed that education groups for individuals on a psychiatric intensive care ward were beneficial in improving knowledge of medication and the side effects of medication, and were appreciated by service users despite high levels of acuity in this group. A further barrier to the regular provision of therapeutic activities might be that the nurses lack the skills or confidence to run them. Hence, we included training and increasing skills for all staff on the ward. Although the majority of research in this area has originated in the UK, a recent review of the literature on patient activities and interaction encompassed international perspectives and found that this lack of service user engagement seems to hold true across North America, Australia and Europe.15
A Sainsbury Centre for Mental Health report16 provided a more optimistic view of inpatient care, finding that nearly three-quarters of ward managers across England reported that both practical activities (e.g. cooking skills) and talking therapies occurred regularly on their wards, and 64% reported that leisure activities (e.g. bingo) occurred regularly. However, therapies with a strong evidence base, such as cognitive–behavioural therapy (CBT), occurred only on 20% of wards. The recommendations included increasing the availability of training in therapeutic activities that have an evidence base.16 What remains unknown from the report is how often therapeutic activities happen because, although activities may be something the wards aspire to provide and schedule into the ward timetables, how often they happen in practice may be a different matter.
Innovations in the service pathway have also been suggested to improve the therapeutic atmosphere of wards by reducing the patient flux where recovery-oriented approaches might be made. Hence, we included a comparison of two different service systems that might show how changes in patient flow could affect service user views. The innovative change was the introduction into one system of a triage ward where service users were assessed for longer-term care or a return to the community with the support of the home treatment team (HTT).
Stakeholder involvement
Our programme of research sought to involve relevant stakeholders in all aspects of the programme, not only in the WPs themselves but also in the analysis and publications from the programme. PERCEIVE was proposed by a group of clinicians, NHS managers, clinical academics and service users. Our stakeholders were represented on the steering and management committees. A senior service user researcher (DR) who spent time on inpatient wards contributed to the overall design of the programme as a whole. WP1 was wholly dedicated to stakeholder involvement and was co-ordinated and run from the Service User Research Enterprise (SURE). This is a research unit which is co-directed by a service user researcher and employs people who are skilled researchers and who also have experience of using mental health services. WP1 [Lasting Improvements for Acute Inpatient SEttings (LIAISE)] researchers were situated in SURE, supervised by DR, making LIAISE a user-led programme of work.
We involved service users and nurses in developments in each WP. The largest input was to WP1, which involved producing both a service user and nurse measure of perceptions of inpatient wards. To do this, a participatory model was used,17 such that service user researchers facilitated the production of the service user measure and nurse researchers the generation of the nurse measure. It was made clear to participants that the researchers themselves were like them and that it was their experience that counted, something that is not always the case in health services research. At all stages of the measure development, including the measure developed in WP2, researchers met with service users for feedback at various stages and changes were made based on their suggestions. In all WPs, we also employed service user and nurse researchers to collect data and to develop the programme of activity. At the completion of WP3, we returned to the wards involved and sought feedback from service users and nurses on the impact the project had and what we could have done better.
Additional studies that flowed from the programme were nearly all the result of service user suggestions (see Appendices 1–4 for details).
Involving service users as researchers and seeking to focus on the patient experience is a vital component of this project. The Francis report18 has highlighted patient experience as important in terms of both clinical outcomes and safety and quality, something which has been a key part of our project from the start.
Health economic considerations
Given the high cost of inpatient care and, in particular, the context of limited health-care resources, it is essential to consider issues of cost-effectiveness in evaluations of new and existing interventions. However, there is a paucity of cost-effectiveness evidence pertaining to interventions focused on psychiatric inpatient wards such as increased therapeutic activities or triage models. Indeed, the methods used in most economic evaluations may actually be deficient in evaluating inpatient care because these frequently just record the number of days an individual spends as an inpatient and combines this with a standard unit cost. This ignores the fact that there will be heterogeneity in the number of staff who inpatients are in contact with and the uptake they have of activities irrespective of length of stay. The health economic component of the programme addressed these shortcomings by (1) developing an inpatient-focused resource use questionnaire and (2) using this questionnaire in the evaluations described in WP3 and WP4.
Work package 1
The first WP has the acronym LIAISE standing for Lasting Improvements for Acute Inpatient Settings. This was the WP that constituted service user-led research and extended that model to nurse research. The aim of the WP was to produce two measures capturing the experience of living and working in acute inpatient settings. The measures were generated using focus groups, expert panels and a feasibility study. The researchers for the service user measure were service user researchers [Views On Inpatient CarE (VOICE)] and the researchers for the nurse measure were nurse researchers [Views On Therapeutic Environment (VOTE)]. Both measures underwent psychometric testing and showed sound properties.
Work package 2
This WP was called Client Services Receipt Inventory – Inpatient (CITRINE) and had as the main aim the development of a measure of staff contacts and use of therapeutic activities on inpatient wards. As a precursor to this we conducted a systematic review of the literature to establish how inpatient activities had been measured in previous studies. This was then followed by the development of a draft questionnaire to record contacts and activities over a 1-week retrospective period. Consultation with clinical staff was crucial in this process and the questionnaire was piloted to determine its validity, reliability and acceptance from service users. The final version was then used in WP3 to evaluate the introduction of therapeutic activities to the wards and WP4 to evaluate the triage model.
Alongside the development and use of the questionnaire, we also reviewed the literature to identify economic evaluations of inpatient-based interventions. Our expectation was that these would be limited in number and, as an alternative to trial or observational methods, provide a demonstration of a decision modelling approach to conducting such evaluations.
Work package 3
The third WP [Delivering Opportunities for Recovery (DOORWAYS)] aimed to increase staff training and thereby increase the number of therapeutic activities occurring on the wards. Nurses working on the participating wards were offered training in a number of evidence-based therapeutic activities. After extensive discussion with nursing staff and their managers, a menu of therapies was chosen, from which each ward could choose the activities best suited to their needs. A stepped-wedge design was used to investigate the effect of the intervention on staff and service user perceptions of the wards. Nurses on all wards were offered the training, with two wards receiving training in each 6-month period. The order in which the wards were offered the training was determined by randomisation.
The wards randomised to the intervention would then receive the training. This consisted of a series of workshops involving a service user trainer and a clinical psychologist. For psychological activities, the clinical psychologist then demonstrated the group on the ward to the nurses, who then co-facilitated the group with the psychologist until ward staff were able to run them independently. Data collection on service user and nurse perceptions of the wards were completed before and after each randomisation and are the main outcomes in this WP.
Work package 4
The final WP [Bringing Emergency TreatmenT to Early Resolution (BETTER PATHWAYS)] involved evaluating a unique admission system with a traditional admission system. One service within our catchment area developed a novel approach to solving the overcrowding and long admissions problems usually associated with inpatient care. They designated a specific ‘triage’ ward to accept all acute admissions in the catchment areas with immediate discharge planning beginning at admission, a guarantee to be assessed by senior members of the team and a tight working relationship with their HTTs. At the end of 7 days, service users were either discharged back into the community or transferred to one of three locality wards providing longer-term, more rehabilitative care. Initial reports suggested that it was working well but whether or not this has been maintained has not been evaluated. We undertook this WP in order to investigate whether or not the triage system does indeed reduce lengths of stay in inpatient care and whether or not it leads to a greater number of re-admissions than a more traditional system of inpatient care. Furthermore, we also investigated service users’ and nurses’ perception of these two systems to see if there were any clear preferences.
Objectives
We had six principal objectives:
- To use methodology throughout the project which involved stakeholder participants.
- To use stakeholder participatory methodology to develop and validate a measure of service user views of inpatient care.
- To use stakeholder participatory methodology to develop and validate a measure of nurse views of inpatient care.
- To develop and validate a patient-reported measure of staff contacts and uptake of activities while on inpatient wards.
- To develop a training programme for nurses to increase their skills in running therapeutic activities and evaluate its effects on nurses’ and service users’ views of the wards.
- To evaluate and compare a novel admission system to a traditional one on the perceptions of nurses and service users.