Summary of the findings
This study found examples of good practice and a willingness to improve care for patients with learning disabilities across all six participating NHS hospitals. However, the study also found that, despite this willingness, and despite the implementation of strategies to achieve improvements, such good practice remained haphazard and people with learning disabilities remained at risk of suboptimal care and support within NHS hospitals. This study has not been able (and did not intend) to quantify this risk. With only six study sites and a large number of variables, it is not possible to say whether some hospitals were better than others at providing safe care for patients with learning disabilities, or to ascribe examples of good or poor practice to particular differences within organisations. However, there is sufficient evidence to suggest that the vulnerabilities of patients with learning disabilities can, and do, lead to compromised patient safety.
The most common safety issues were delays and omissions of care, ranging from delays and omissions of basic nursing care (for example, unmet nutrition needs) to delays and omissions of medical treatment (for example, treatment not given because of perceived inability to cope with or consent to treatment or because of staff assumptions about the patient’s quality of life). Although acts of omission (failing to diagnose or provide required care) are thought to be twice as prevalent as acts of commission (providing the wrong care),127 acts of omission are known to be more difficult to recognise, capture and monitor.128
The strategies put in place by the hospitals’ management include the implementation of the LDLN role, carer policies, easy-read documentation (including patient-held information documents), staff training and the inclusion of people with learning disabilities and carers on advisory bodies. Overall, the situation appears to be improving somewhat. Many carers reported that hospital care for the person with learning disabilities is better than it was several years ago, with some wards and some staff described as excellent. However, most carers could also point to wards and staff where the opposite was true. Examples of poor practice were identified even where there appeared to be good policies and management support for learning disability issues. It seems, therefore, that policies and strategies do not reliably translate to better practice in the clinical areas. Furthermore, there was a lack of effective hospital structures to ensure that the pockets of good practice were consistently replicated hospital-wide.
Barriers
The study identified a number of major barriers to better and safer hospital care. The most significant of these appear to be:
invisibility of people with learning disabilities within the health-care system
widespread lack of staff understanding of learning disability, the vulnerabilities of people with learning disabilities and the reasonable adjustment they may need in order to access health-care services
lack of consistent and effective carer involvement
lack of clear lines of responsibility and accountability for ensuring that each individual patient with learning disabilities receives co-ordinated, appropriate and reasonably adjusted health care.
Invisibility of patients with learning disabilities
The fact that most people with learning disabilities are unknown to any health and social care services, and the current lack of effective systems for communicating information about known learning disability between primary and secondary health-care services, constitute significant cross-organisational barriers. Organisational barriers include a lack of effective systems for flagging learning disability and a considerable lack of staff expertise and staff willingness to identify and flag learning disabilities, encompassing not just junior but also the most senior staff.
Lack of staff understanding
Many of the staff interviewees were dedicated to improving care for people with learning disabilities and wanted to do the very best for their patients. However, there was a widespread and persistent lack of understanding across all staff groups and all levels of seniority of the ways in which the support needs of people with learning disabilities might differ from those of the general population. There was also a lack of staff understanding of the fact that delays in, or omissions of, care and treatment are a particular safety risk for people with learning disabilities, and of the reasonable adjustments that may be needed to ensure that they do not happen. Staff lacked understanding and skill in applying the Mental Capacity Act correctly to patients with learning disabilities. There were indications from all stakeholders that staff apprehension about caring for a patient with learning disabilities can lead to omissions of care.
Lack of consistent and effective carer involvement
Staff did not always understand the essential role of carers and the importance of including carer expertise. Although the study found some excellent practice, where carers were supported in their caring role and their expertise was sought and utilised by staff, many of the examples of compromised patient care involved carers that were not listened to. Carers were appreciated for the help they could give with patient care, communication and patient reassurance, but their crucial knowledge of the patient was often disregarded. Patients were put at further risk by staff making assumptions about the input of carers; at worst, there were examples of hospital staff failing to provide basic care.
Lack of clear lines of responsibility and accountability
Those with specific responsibility for the safe and reasonably adjusted health care of people with learning disabilities within the hospital, and for co-ordinating their care, varied across study sites and included the LDLNs, the trust’s clinical lead for safeguarding vulnerable adults, and hospital matrons. Most of these (and the LDLNs in particular) had learning disability expertise and demonstrated passion and drive to improve patient care. Their roles included co-ordination of care and ensuring that the needs of individual patients were met. However, patients with learning disabilities were not reliably referred to them, partly because of a lack of effective flagging systems. Several of these roles were part-time.
The lines of accountability and responsibility were not clear. It was not clear exactly what responsibility or accountability LDLNs had for the care of patients with learning disability, and who carried accountability, awareness and expertise in their absence.
At ward or clinic level, there was a lack of clear allocation of responsibility and accountability for ensuring that patients with learning disabilities had their care and treatment needs met. Carers reported seeing different members of staff on each shift. Given the significant lack of staff knowledge and understanding of learning disability and associated vulnerabilities, this led to good practice being haphazard throughout the organisation.
Enablers
Without board-level managers who are actively supportive of improving care for patients with learning disabilities, it will be difficult to sustain and replicate good practice. Supportive structures and policies are also important, including carer policies, the provision of accessible information and the implementation of flagging systems. Such policies and schemes were quoted by hospital managers to demonstrate commitment and effectiveness in providing reasonably adjusted health-care services.
However, the translation of such policies into practice at the point of patient contact was inconsistent and often depended on ward culture and the attitudes of individual staff. Therefore, the key enablers found in this study were the LDLN and the ward manager.
Learning disability liaison nurse
The LDLN role was pivotal in a number of areas. Hospitals with a LDLN were best able to identify patients with learning disabilities within their services. LDLNs identified individual needs for reasonable adjustments and were able to ensure their implementation. They were able to co-ordinate care that could be highly complex. They provided staff training and, possibly more importantly, they were a role model for staff and an effective advocate within the hospital, raising awareness and championing the needs of people with learning disabilities.
The lack of staff understanding of learning disability issues and associated patient safety risks, together with the invisibility of patients with learning disabilities within the health-care system, made the presence of on-site learning disability expertise particularly important in reducing patient safety risks. On-site LDLNs were better than community-based LDLNs at raising staff awareness, gaining staff trust and increasing the numbers of patients with learning disabilities identified within the hospital.
However, this enabling role could easily be undermined by a lack of resources (including a lack of cover), lack of senior management support, lack of clarity about the role and a lack of authority to act. The enabling role of the LDLN needed to be embedded and backed up by the hospital structures.
The ward manager
Wards that received the highest praise from carers, with reports of consistently positive staff attitudes and consistent provision of reasonable adjustments, were those where the ward manager ran ‘a tight ship’. LDLNs could pinpoint which wards were ‘good’ and which were less so; this was mostly dependent on a ward manager who understood the issues around learning disability, supported junior ward staff and called for learning disability expertise where needed. Front-line staff were key to delivering a better service to people with learning disabilities and their carers; ward managers were critical in ensuring that care was delivered well.
Generalisability to other vulnerable patient groups
The lack of integrated records across NHS services, with information about vulnerabilities not consistently passed on by GPs, poses challenges with identification and flagging that are likely to be similar for other vulnerable patient groups.
Issues around reasonable adjustments, including their cost implications and the lack of recognition of this through PbR, are also likely to be generalisable.
The challenges around carers of patients with learning disabilities were unique, in particular identifying the need for the involvement of long-term family carers with high levels of expertise as well as the involvement of paid carers.
The complexity of the needs of patients with learning disabilities and the lack of staff exposure to this group of patients makes the need for a LDLN particularly acute.
Putting the findings into context
During the final month of this project, two major inquiries reported their findings to parliament. The Francis Inquiry,85 which investigated the high numbers of patient deaths at Staffordshire Hospital, highlighted systemic failures and poor culture within the NHS, leading to severely compromised patient safety and, in particular, a lack of patient-centred care. The recommendations include an increased focus on a culture of compassion, better ward leadership and clear lines of responsibility for each patient’s care.
The CIPOLD report3 identified deficiencies in the quality and effectiveness of health care given to people with learning disabilities, contributing to premature deaths. This included a lack of identification of people with learning disabilities within the health-care system; delays in identifying, diagnosing and treating ill health in people with learning disabilities; a lack of systemic embedding of reasonable adjustments on a day-to-day basis, therefore disadvantaging people with learning disabilities at crucial stages of the care pathway; and a lack of co-ordination of care. There is a strong degree of coherence between the CIPOLD findings and the findings of the current study.
The CIPOLD recommendations3 include the following:
clear identification of people with learning disabilities on the NHS central registration system and in all health-care record systems
reasonable adjustments required by, and provided to, individuals to be audited annually
a named health-care co-ordinator to be allocated to people with complex or multiple health needs
Mental Capacity Act training and regular updates to be mandatory for staff involved in health-care delivery
patient-held records to be introduced and given to all patients with learning disabilities who have multiple health conditions.
The evidence provided by this current study is fully in line with most of these CIPOLD recommendations. The study findings also support the recommendations of the Francis Inquiry85 that there is a need for culture change, effective ward leadership and clear lines of responsibility for patient care.
One area where the study evidence is less strong is that of patient-held records. This study found no strong evidence that hand-held patient records made a significant difference to patient care and patient safety. This seemed to be mostly due to the fact that knowledge about and use of these documents was not sufficiently widespread, limiting their usefulness.
Study limitations
This study has added significantly to the current knowledge base. The evidence that patients with learning disabilities are vulnerable within health-care services and face safety risks that can be serious has been mounting through the publication of a range of reports, research studies and inquiries over the past decade, and this study adds to the evidence. The study has provided deeper insights into the reasons for hospital failures, and the barriers to be overcome for hospitals trying to ‘get it right’.
However, there are a number of study limitations. One was the limited number of study sites, which meant that any differences in study findings across sites could not be confidently attributed to differences between the study sites. In order to do so, a much larger sample is needed.
Another significant limitation was sampling bias. Although the sampling of staff was fairly straightforward and well facilitated by senior managers, sampling of patients and carers was much more difficult and was facilitated by the LDLN or learning disability lead at each hospital. This meant that the patients and carers sampled were more likely to have had LDLN involvement, and that it was more difficult to access the views and experiences of those who had not. It also meant that there was no access to a sample of patients who had not been flagged or identified as having learning disabilities; sampling through community contacts may have addressed this somewhat. In addition, the sampling strategy meant that large numbers of potential participants were not accessed as the LDLN was busy or absent.
However, saturation of data was achieved for these groups. The sample sizes of people with learning disabilities and carers in this study are large in comparison with existing published studies, and this study therefore adds significant insights.
The study was further limited by the sensitivity of the topic area and a desire by the participating trusts to be seen to be ‘doing well’ in caring for people with learning disabilities. A number of staff members were concerned about possible negative publicity for their hospital; this may have made staff try to present the hospital in a positive light.
The exploration of issues for other vulnerable patient groups was limited by the lack of scope within this complex study to investigate them in depth. This could only be an initial and fairly superficial exploration, highlighting areas for further investigation.
The empirical framework
The above is a summary of some of the most crucial barriers and enablers, but there was a very wide range of factors that affected the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals. The empirical model () is a synthesis of all subframeworks given in Chapters 5–8.
Empirical framework showing the factors that affect the promotion of a safer environment for patients with learning disabilities. LD, learning disabilities.
