Introduction
At the start of the study and throughout the study period, the initial literature review was updated and expanded to incorporate the specific issues addressed in the study. This chapter provides important context for the findings reported in Chapters 5–10. It presents an overview of national developments, inquiries and reports that affected the course of this study, as well as a more detailed literature review around the following aspects of the study: identifying patients with learning disabilities in NHS hospitals; providing reasonably adjusted services; involving carers as partners in care; and patient safety issues for people with learning disabilities.
Progress and national developments since Healthcare for All
The study follows four recommendations of Healthcare for All,4 but it was not conducted in isolation of events. Following another of Healthcare for All’s recommendations, the time-limited CIPOLD was set up and this published its final report in March 2013.3 Furthermore, a learning disability public health observatory, the Improving Health and Lives Learning Disability Observatory (IHAL), was established as a 3-year project in 2010.35 This has published a range of documents, data and reports on health inequalities and the progress that health and social care services are making in addressing these.14,24,36 It includes a wide range of good practice examples, but also evidence that people with learning disabilities remain disadvantaged when accessing health services. The evidence from CIPOLD in particular is highly relevant in relation to this study; this is further discussed in Chapter 12.
In 2010, Mencap launched its campaign Getting it Right When Treating People with a Learning Disability, providing guidance for health care services.5 It invited NHS hospitals to sign up to a charter of pledges to ensure that a range of reasonable adjustments were made (see Reasonable adjustments for people with learning disabilities in NHS hospitals). In 2012, over 200 health-care organisations had signed up, and Mencap reported excellent examples of good practice. However, Mencap claimed that the NHS continued to fail people with learning disabilities, leading to avoidable deaths, and in 2012 published a follow-up report in which it concluded that not enough progress had yet been made in addressing the health inequalities experienced by people with learning disabilities.34
The issue of discrimination and abuse of people with learning disabilities within health and social care services was kept in the headlines through the disclosure in May 2011 of appalling criminal abuse practices at Winterbourne View, a care home for people with learning disabilities, and the subsequent Department of Health review.37 This highlighted a widespread failure to design, commission and provide appropriate services for people with learning disabilities, and an unacceptable tolerance of people with learning disabilities being given the wrong care.
During the time this study was conducted, the NHS experienced one of the largest-scale structural changes in its history, with the transfer of commissioning responsibility from PCTs to clinical commissioning groups (CCGs) and the new NHS Commissioning Board, and responsibility for public health moving from the NHS to local authorities. Pressures on NHS services have increased. Although NHS funding has stayed broadly level in real terms since 2010, hospitals are dealing with a growing population, increasing numbers of older people, people with complex care conditions and people with dementia needing hospital treatment. The CQC reported that NHS services struggled to make sure they had enough qualified and experienced staff on duty at all times (with 16% of NHS hospitals being understaffed), and also struggled to make sure staff were properly trained and supervised.38
It is important to remember that the first core value underpinning the NHS, as set out in its constitutions, remains a commitment to providing:
. . . a comprehensive service, available to all irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status.
p. 3.39 We acknowledge The National Archives as custodian of this document
Identifying patients with learning disabilities in NHS hospitals
Healthcare for All4 states that:
. . . chief among the obstacles to delivering and evaluating the effectiveness of health services for people with learning disabilities is a lack of information about them . . . it is difficult for services to prepare properly or make the necessary ‘reasonable adjustments’ if patients’ communication and other special needs are unknown.
p.36. Reproduced with permission from Michael J. Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Aldridge Press; 2008
The report recommended that health-care organisations should ensure they collect the data necessary to allow people with learning disabilities to be identified by the health service. This was accepted by government and a pledge was made in the White Paper Valuing People Now to work towards better systems for general practitioners (GPs) to identify people with learning disabilities and share that information with other NHS sources.20
General practitioner practices have been given guidance by the Department of Health to carry out annual health checks for people with learning disabilities, which come with financial entitlements. This has encouraged GP practices to identify their populations of patients with learning disabilities. However, despite investments in a major overhaul in NHS information technology (IT) systems,40 the aim to achieve effective sharing of patient information between different NHS services through fully integrated electronic patient records by 2010 has not been achieved. The implementation of summary care records is still under way; around one in three people in England have one.41 Summary care records contain key medical information, such as medication and allergies, made available across England to NHS staff involved in treating the patient. Mencap supports the summary care records in principle, observing that there would be a benefit if people with learning disabilities were able to add key information about their needs that they wanted clinicians to know, for example, information about how they communicate, or contact details for their carer.42
In 2012, IHAL published the report Have You Got a Learning Disability?,43 which considered the difficulties NHS services face in identifying and recording the presence of learning disability. The authors pointed out that learning disability is always relevant when caring for someone in hospital, so, where present, it should always be recorded as a comorbid condition. Without this information health services cannot adequately discharge their duties under equalities legislation or meet the requirements of registration legislation (see Equality legislation and reasonable adjustments). However, one fundamental difficulty with recording the presence of learning disability is that only an estimated 21% of people with learning disabilities in England are known to health and social care services. This means that even if communications with referring GPs are good, most people with learning disabilities will not have been flagged in the referrals. People with mild learning disabilities are most likely to be missed. This group of patients may have difficulty with written materials, keeping appointments, understanding consent procedures and complying with treatment regimes.
The authors argue that it is down to NHS services to identify this population at all care delivery points, but particularly at those points where patients enter care. They propose that all patients are asked questions to screen for disability, in the same way as they are asked questions about ethnicity; and they suggest specific ways in which NHS staff (in particular, nurses and administrative staff) can screen patients in this way. The implication is that such staff need training in learning disability.
Another way in which hospitals record patient characteristics is through clinical coding, used for statistical purposes to calculate how much the hospital should get paid for the care of each patient under the Payment by Results (PbR) system. Since March 2011, new minimum data sets from the NHS Data Standards Board have started to include a question about disabilities for statistical purposes. Glover and Emerson43 identified significant problems with the system. Current codes that can be used for learning disability are inadequate and misleading, with coding clerks commonly assigning the wrong code. The reasonable adjustments needed by people with learning disabilities are likely to require additional resources, but this is not reflected in the PbR system.
Providing reasonably adjusted health services
Equality legislation and reasonable adjustments
It is a legal requirement for public services to ensure that their services are accessible to people with disabilities. The Disability Discrimination Act44 came into force in 1995 and sets out the legal duties of service providers to make adjustments. Subsequent Acts have reinforced this legal requirement.45,46
Where a provider of services has a practice, policy or procedure which makes it impossible or unreasonably difficult for disabled persons to make use of a service which he provides, or is prepared to provide, to other members of the public, it is his duty to take such steps as it is reasonable, in all the circumstances of the case, for him to have to take in order for him to change that practice, policy or procedures so that it no longer has that effect.
Part III, section 2144
Having due regard for equality means removing or minimising disadvantages suffered by people because of their protected characteristics, and taking steps to meet the needs of people from protected groups where these are different from the needs of other people.47 There are three requirements that apply in situations where a disabled person would otherwise be placed at a substantial disadvantage compared with people who are not disabled:48
Changing the way things are done, where the disabled person is put at a substantial disadvantage by a provision, criterion or practice of the service provider (including written or unwritten rules). Reasonable adjustments could include changing or adapting the rules, or providing staff training. Barriers can include poor staff attitudes or a lack of knowledge and skills.
Altering physical obstacles or designs that put disabled people using a service at substantial disadvantage. The organisation must take reasonable steps to remove the feature, alter it, provide a reasonable means of avoiding it, or provide a reasonable alternative method of making the service available to disabled people. Physical features include steps and stairways, but also floor coverings, furniture, signs and toilet/washing facilities.
Providing extra aids and services like providing extra equipment or additional service (in law, these are called auxiliary aids). Examples include provision of accessible information, access to an interpreter, or offering a home visit when clients would usually come to the service premises.
Whether an adjustment is ‘reasonable’ depends on a range of factors, including whether it can actually be done, the cost, and the organisation’s resources and size. The guidance documents from the Equality and Human Rights Commission point out that ‘just because something is difficult does not mean it cannot also be reasonable’ (The copyright and all other intellectual property rights in the material to be reproduced are owned by, or licensed to, the Commission for Equality and Human Rights, known as the Equality and Human Rights Commission (‘the EHRC’). Reproduced with permission from Equality and Human Rights Commission. Your Rights to Equality from Health and Social Care Services. Equality Act 2010 Guidance of Your Rights, Volume 5 of 9. Manchester: Equality and Human Rights Commission; 2010, p.44.).48 If an adjustment is costly, the organisation’s resources must be looked at across the whole organisation, not just the branch, section or ward that provides the particular service.
The legal requirement is for services to put reasonable adjustments in place even if they do not have any disabled clients at the time. In other words, organisations should not wait until disabled people try to use their service; rather, they should be proactive and anticipate the need for adjustments.
Reasonable adjustments for people with learning disabilities in NHS hospitals
Healthcare for All4 noted that, despite examples of good practice across the country, the lack of knowledge and information means that timely, appropriate and reasonable adjustments as defined by the disability legislation are not easy to make, even when services are keen to adapt their approach for people with learning disabilities.
Mencap’s Getting it Right charter (2010)49 listed nine pledges, all of which amount to reasonable adjustments, and several of which echo the Healthcare for All4 recommendations:
make sure hospital passports are available and being used
make sure that all staff understand and apply the principles of mental capacity laws
appoint a learning disability liaison nurse in hospital(s)
make sure every person with a learning disability can have an annual health check
provide ongoing learning disability awareness training for all staff
listen to, respect and involve family carers
provide practical support and information to families and carers
provide information that is accessible to people with a learning disability
display the Getting it right principles for everyone to see.
Reproduced with permission from Mencap. Getting it Right When Treating People with a Learning Disability. London: Mencap; 2010
Several of the study sites were among the first health-care trusts that signed up to this charter.
Following the Health Service Ombudsman report in 2009,2 the Department of Health published a progress report.50 Having gathered evidence from a wide range of sources, the report stated that there were many good practice examples, but this was often dependent on individual staff and teams rather than embedded within organisational structures. Reasonable adjustments were less commonly mentioned in relation to acute care (compared with primary care). One frequently sighted adjustment was the provision of easy read information. The conclusion was that reasonable adjustments can hugely improve patients’ experiences and outcomes, and failure to make adjustments can have far-reaching negative consequences for patients; but there is a need for further work to ensure that reasonable adjustments are made within health-care settings.
The Chief Executive of the NHS, Sir David Nicholson, wrote to all Chief Executives of NHS trusts and NHS foundation trusts in England in 2008 and in 2010 (twice), reminding them of their legal obligation to make reasonable adjustments for people with learning disabilities, and to ensure that their staff are following the law in this respect.51
A practical guide commissioned by the Department of Health presents a range of examples of NHS trusts that have made reasonable adjustments.52 IHAL, set up by the Department of Health, has gathered data on the types and extent of reasonable adjustments made by NHS trusts. In its report,53 it summarises Giraud-Saunders’s comprehensive guidance,52 which:
. . . gives a very good sense of the wide range of systemic changes that are required for an NHS service to run a truly effective service for people with learning disabilities, including:
Information for people with learning disabilities
Working in partnership with families
Capacity, consent and advocacy
Service delivery (including making an appointment, initial attendance, receiving a service, discharge and follow-up)
Gathering, monitoring and reporting information about access and effectiveness of the health service by people with learning disabilities
Patient and public involvement
Employment of people with learning disabilities.
p. 12.53 Reproduced with permission from Hatton C, Roberts H, Baines S. Reasonable Adjustments for People with Learning Disabilities in England: A National Survey of NHS Trusts. IHAL report 2011-03. London: IHAL; 2011
Improving Health and Lives reported findings collected from 119 trusts who responded to its survey, including 61 acute trusts (36% of all acute NHS trusts in England). The most commonly reported reasonable adjustment was the provision of accessible information, although the authors comment that it was not clear whether this information was specifically designed or comprehensible for people with learning disabilities, nor whether it was routinely available. Similarly, accessible information for carers was reported, but robust evidence for this was lacking. Other areas of reported reasonable adjustments included policies concerning mental capacity, staff training, having trust patients with learning disabilities who make use of an Independent Mental Capacity Advocate (IMCA), using patient-held information documents and health action plans. The authors found that:
. . . the most common solution for trusts concerning face-to-face contact with patients with learning disabilities and carers was to rely on staff with specialist learning disability training, skills or roles to act as liaison between the person with learning disabilities, the carer, the various parts of the trust and other learning disabilities services involved in the support of the individual.
p. 8.53 Reproduced with permission from Hatton C, Roberts H, Baines S. Reasonable Adjustments for People with Learning Disabilities in England: A National Survey of NHS Trusts. IHAL report 2011-03. London: IHAL; 2011
Improving Health and Lives has now set up a public online database where NHS trusts can upload and share their good practice examples of making reasonable adjustments for people with learning disabilities.54
Involving carers as partners in care
Definition of ‘carer’
Carers Trust55 defines a carer as:
. . . someone of any age who provides unpaid support to family or friends who could not manage without this help. This could be caring for a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems.
Reproduced with permission from Carers Trust. What is a carer? 2012. URL: www.carers.org/what-carer
Family carers of people with learning disabilities are unique among carers. Many have decades of caring experience and of negotiating the health, education and social care systems through infancy, childhood and adulthood.55
Many people with learning disabilities rely on the support of paid care staff in their daily lives, including support staff working in the residential care, independent living arrangements and sheltered accommodation settings. Such care staff often provide support for people with learning disabilities when they attend hospital as inpatients or outpatients. Their expertise and knowledge of the person with learning disabilities may vary; whereas many may be highly experienced and trained, others are not. Paid carers range from experienced home managers who have known the person for many years to unskilled workers who do not know much about the person they support.
The Healthcare for All4 recommendation applies to these paid carers as well as unpaid family carers. For the purpose of this study and this report, a ‘carer’ is defined as any care giver who provides paid or unpaid support to someone with learning disabilities during their hospital episode, including both family carers and paid carers. There are overlaps but also distinctive differences in carer-related issues with regards to these two groups of carers, and where relevant, this report will differentiate ‘family carers’ (who provide unpaid help and support and have a relationship with the person with learning disabilities built on interaction and shared experiences) and ‘paid carers’ who are, by definition, paid to provide formal care.56
Evidence on carer involvement from Healthcare for All
The independent inquiry gathered evidence from 79 family carers. The largest categories for comments were the importance of listening to carers (mentioned by 58% of carers), the need for staff education and training (55%) and the problem of communication (52%). In particular, they reported on the following issues:
poor staff attitudes, including ignorance, fear and unwarranted assumptions about the patient’s quality of life
difficulties in communicating effectively with carers
inconsistencies in the quality of information sharing with regards to the health and needs of the patient
carers’ needs not being taken into account
difficulties in accessing health services
difficulties in negotiating transition (for example, between child and adult services).
The roles and experiences of carers in hospitals
There are a number of studies focused on the roles and experiences of, and the problems faced by, carers of adults with learning disabilities while they are in hospital.
Carers report support roles that include providing direct support with personal care and mealtime assistance; providing communication support; providing emotional support and reassurance; providing information about the patient to hospital staff; and advocating for the patient’s needs.56,57
Problems reported by carers of people with learning disabilities in hospital include ill-defined role boundaries, whereby hospital staff and carers (especially paid carers) are uncertain about what carers can and will do; not being supported to take a break from caring; and lack of recognition for carers’ expertise and advocacy role.56,58 Several studies found that the family’s expert knowledge was rarely solicited by hospital staff,59 and that this had led to compromised safety or increased suffering and pain.60
Other authors reported that carers felt they needed to be constantly present and vigilant, fearing that in their absence the patient’s needs, including basic care needs such as eating, drinking and toileting, would not be met and the patient could be harmed; this fear was often based on past experience.57,59,61,62
Allen63 used ethnographic data from a study in a UK hospital to describe the different degrees to which family carers were involved with patient care. Her study was not focused on carers of people with learning disabilities, but the descriptions have relevance. Family members could act as ‘visitors’, ‘workers’ (undertaking care-giving tasks and being of help to the ward staff) or ‘expert carers’. Allen found that relatives and friends who adopted a worker role remained subordinate members of the nursing team. On the other hand, expert carers focused more on the needs of the patient, rather than the nurses. Allen noted that this presented a challenge to the ward nurses’ ability to control their work and their claims to expertise. As such, expert carers’ actions:
. . . could lead them to disrupt fundamental features of the social organisation of ward work . . . Thus, whilst other family members could be integrated into the ward caring division of labour with relative ease, the integration of expert carers was infinitely more problematic.
p.15563
Allen also noted that carers were reluctant to make a complaint about perceived poor standards of care, fearing a negative effect on their relationships with hospital staff.
The role of the learning disability liaison nurse
One key way in which the health inequalities and safety risks faced by people with learning disabilities in secondary health care has been addressed is through the development of new models, whereby nurses experienced in learning disability work in general hospital environments. They take on the specific role of supporting patients with learning disabilities and their families as well as the hospital staff these patients come into contact with. The term used most widely for such a role is that of LDLN.64–67
The Department of Health has strategically advocated advanced nursing roles as a an effective way of overcoming problems facing the NHS.68
There are different models for developing LDLN roles, including posts or teams working in general hospitals; learning disability community teams providing support to people with learning disabilities before, during and after their hospital admission; training hospital nurses to act as a resource (‘link nurse’) for other hospital staff; and creating city-wide nurse consultant posts to facilitate the provision of co-ordinated care across multisite hospitals.69 A hospital-based learning disability nurse consultant post has also been described.70
A national survey of reasonable adjustments made for people with learning disabilities in NHS trusts36 reported that 55 acute trusts (95%) made use of liaison staff with a specific role in providing health facilitation, such as LDLNs. However, this covered a wide range of models, not all of which included specific learning disability expertise. Nine acute trusts said that they employed LDLNs. Other models included engagement in partnership with community or PCT health facilitation staff; identifying health facilitation for people with learning disabilities, as part of the role of the trust’s clinical lead for safeguarding vulnerable adults and other non-learning disability-specific trust personnel; and employing health facilitators or acute liaison nurses.
Healthcare for All4 reported unanimous support among witnesses to the independent inquiry for LDLN roles, but found that the impact of such roles on health or service quality was difficult to measure. The inquiry reported on an informal survey that found only 20 securely funded staff in England with the liaison role as an explicit part of their job description.
The 2010 congress of the Royal College of Nursing supported the following resolution with 425 out of 476 votes (92%): ‘That this meeting of the RCN Congress asks Council to lobby for a learning disability liaison nurse in all hospitals’.67,71 In its Getting it Right campaign, Mencap also called for an LDLN in all hospitals.5
A literature search found only one research study focusing on the effect of the LDLN in acute hospital settings. Brown et al.65,72 investigated the impact of LDLN services across four Scottish NHS boards. The authors found that the LDLN role was complex and had three key dimensions: clinical patient care, education and practice development, and strategic organisational development. Both carers and professionals viewed LDLNs as ‘credible ambassadors’ for people with learning disabilities and a positive driving force within the organisation.
Phillips73 observed that although there is evidence in the literature to support promotion of the role of the LDLN and implementation of such roles is generally considered to be good practice, liaison posts tend to be temporary and ad hoc.
Patient safety
Researching patient safety
Patient safety is concerned with any issue (separate to the natural progression of the patient’s illness or injury) experienced during a patient’s health care which could or did cause harm.74 Examples include acquisition of a hospital-acquired infection, receiving the wrong medication or the wrong dose, or falling while under the care of the service provider. Studies conducted within health-care services in the developed world demonstrate that approximately 1 in 10 patients encounter harm as a result of the health care they receive.75,76 It is estimated that around 50% of patient safety issues are preventable.75 While this figure is well known and often quoted within the patient safety arena, it remains alarming and captivates audiences because of the widespread and often unfailing perception that ‘hospitals make people better’. However, all patients are at risk of being unintentionally and avoidably harmed during the process of their health care due to the impossibility of eradicating human error.77
Reason78 highlights two approaches to understanding and ameliorating human error. The ‘person approach’ essentially blames the ‘aberrant mental processes’ of health-care professionals working at the ‘sharp end’ when an error is made (p. 768).78 For example, if the wrong drug was administered to a patient, the health-care professional who gave the drug would be blamed and it would be assumed that their cognition was at fault. Conversely, the ‘system approach’ recognises that mental processes are flawed and seeks to adapt the error-producing conditions that are ever-present within the environment (known as latent conditions) rather than changing the individuals within the system. For example, if the wrong drug was administered to a patient, it would be important to look at all of the factors in the environment that may have contributed to this, such as the labelling on the medication, the physical location in which the medication was stored, the clarity of the method used to prescribe the medication, the level of training and working pattern of the health-care professional who administered the medication, etc. Changing the ‘systems’ that surround an error reduces the likelihood that another health-care professional will make the same error in the future. This approach acknowledges that there are often a number of different ‘contributory factors’, spanning cross-organisational, organisational and individual levels, which lead to adverse outcomes. Thus, there is a consensus within the patient safety arena that systems and underlying contributory factors can be studied and changed to make patient care safer.
Patient safety issues for people with learning disabilities
Although we do not know the incidence of adverse events experienced by patients with learning disabilities in NHS acute hospitals, a small number of reports have outlined the types of patient safety issues faced and have begun to describe contributory factors which underlie these issues. In 2004 the National Patient Safety Agency (NPSA) studied ‘patient safety priorities’ for people with learning disabilities. They concluded that ‘people with learning disabilities may be more at risk of things going wrong than the general population, leading to varying degrees of harm being caused whilst in general hospitals’ (p. 11, reproduced with permission from National Patient Safety Agency. Understanding the Patient Safety Issues for People with Learning Disabilities. London: National Patient Safety Agency; 2004).79
Specific patient safety issues have been described surrounding: misdiagnosis or diagnostic overshadowing;1,3,4,34,79,80 inadequate treatment of pain;3,34,79 delayed diagnosis or treatment;3,6,34,80 inappropriate ‘do not attempt resuscitation’ (DNAR) orders;3,34 medication errors or omissions;3,81 over-reliance on psychotropic drugs to manage behaviour that is perceived to be challenging;6,80 inappropriate use of control and restraint;79,80 recognition of swallowing difficulties;82 lack of nutrition;1 pressure ulcers;18,83 and inconsistent personal care.34,80
Within this literature, factors cited as contributing to safety issues comprise barriers to accessing NHS services and lack of reasonable adjustments to facilitate access;3,80 miscommunication of pain or symptoms;1,3,34 patients’ lack of understanding of their medical condition and medical interventions;79,80 patient non-compliance with treatment;3 a shortage of accessible information;79 inappropriate procedures for gaining patient consent, a lack of staff understanding of the Mental Capacity Act and flawed best interests decisions;1,3,34 reliance on carers to provide nursing care;34,79 poor communication between carers and hospital staff;1,34 poor record-keeping of patient observations (e.g. food and fluid intake) and patient preferences;3 failure to follow clear care pathways;3 lack of continuity of care within hospital and lack of after-care post discharge;3 a deficiency of hospital staff knowledge and skills to enable recognition of the specific needs of patients with learning disabilities;1,34,79 a lack of value placed on the lives of people with learning disabilities;1,34 insufficient advocacy;3 and an inaccessible complaints procedure within the NHS which compromises learning from previous adverse events.1
At the outset of the research, an initial scoping review had suggested that preventable deterioration and, in particular, medication errors and misdiagnosis (due to problems with communication and comprehension), were particularly pertinent issues faced by patients with learning disabilities.25,81 These safety issues were therefore incorporated within the initial theoretical framework and formed specific lines of enquiry during data collection. Additional patient safety issues and underlying contributory factors emerged during the course of the research and were subsequently integrated into the strategy for ongoing data collection and analysis.
Incident reporting
The information in this section was provided by Vanessa Gordon (Associate Director of Patient Safety for Learning Disabilities, NHS Commissioning Board, 2012, personal communication) and Noreen Gul [Analyst, National Reporting and Learning System (NRLS), 2012, personal communication].
The NRLS was established in late 2003 as a voluntary scheme for the reporting of patient safety incidents and focuses primarily on learning from these incidents in the NHS. The NRLS, therefore, does not provide the definitive number of patient safety incidents occurring in the NHS. In April 2010, it became mandatory for NHS organisations to report all patient safety incidents which result in severe harm or death to the NRLS. Over 99% of incidents in the NRLS are taken from local risk management systems.
The national picture of patient safety incidents in England and Wales is published quarterly by the NRLS. For the period April 2011 to March 2012, 1,250,206 patient safety incidents were reported as occurring in England, with 24,686 incidents (2%) reported in the care setting ‘learning disability’. The most common incident type reported from learning disability care settings was disruptive/aggressive behaviour (28%) followed by ‘patient accident’ (26%).84
Identification of people with learning disabilities in acute care by means of incident reporting is particularly problematic as fields relating to any patient disability are poorly populated, and information contained within the free text description of an incident may not mention a patient’s disability or may be ambiguous. Phrases within an incident description, such as ‘a patient with complex needs’ or ‘a vulnerable patient’, can also mask a person with learning disabilities.
The reporting of incident types versus outcomes may be confusing to reporters and may result in the patient’s behaviour being recorded rather than a more appropriate incident type. The general taxonomies of reporting systems may also hinder appropriate reporting of patient safety incidents for specific types of patients, including those with learning disabilities. To reduce the burden on the NHS, the NRLS uses information from the individual organisation’s risk management system. If information regarding patient safety incidents and people with learning disabilities is not reported locally, it will not be collected nationally by the NRLS. Currently, the issue of identification of people with learning disabilities within reporting systems is a major barrier to analysis and to an understanding of patient safety for this group.
Organisational change
Following the report of the independent inquiry into widespread failings at one NHS acute hospital (the Francis Report),85 which identified lack of caring as an issue, discussions have tended to focus on measures to improve the attitudes and practice of individual staff, notably nurses. Less attention has been paid to the organisational structures and cultures that constrain or facilitate the adoption of good practice. Research suggests that successful implementation of the Healthcare for All4 recommendations will depend on changes in the organisational contexts that impact on individual behaviour, and that organisations vary in their ‘readiness’ or receptiveness to change.86–88 Thus the development of best practice guidelines is only a first step in effecting change.
In terms of the organisational characteristics influencing the change process, the extent to which a proposed change ‘fits’ with the strategic goals, structure and culture of the organisation and the external environment with which it interacts has been identified as a major facilitating factor.89,90 However, NHS trusts are set a wide range of performance indicators and are increasingly subject to resource constraints, so it is not clear how much strategic priority and resource is actually attached to dealing with learning disability. Moreover, alignment with government and trust strategy alone is not sufficient to bring about change: a number of studies have demonstrated how policies strongly supported by senior management can be undermined by the inability or unwillingness of line managers to implement policy and resources effectively.91–94 Other constraints lie with the siloed nature of organisational structures, which may impede the transmission across organisational and departmental boundaries of information necessary to identify and respond to individual patients’ needs. Moreover, bureaucratic systems of rules, processes and procedures may act to facilitate better practice, but can also impede it by setting conflicting objectives or inhibiting initiative.
Changing service delivery to respond to individual need also depends on good interprofessional working, but professional groups, with their distinctive identities, training, knowledge bases and communities of practice, may have difficulty in agreeing how to implement policy, share information and work together.95 Further, a number of studies have also documented the power of clinicians to block innovative practice.96,97 This raises questions regarding whether or not health professionals have the skills and the motivation to deliver the changes required, and whether their reputed power may act as a barrier to or facilitator of new ways of working.
A final consideration is whether organisations have the leadership competence and capability to manage the change process. Several studies suggest that the charismatic and transformational leadership associated with innovation is absent in many health-care settings.98–100 However, Balogun101 and Currie and Proctor102 concluded that, given discretion to act, middle managers in the NHS can play an important part in implementing strategic change.
All of this suggests that training and performance managing individuals, and putting in place dedicated professional posts such as that of the LDLN, though essential, may not be sufficient to bridge the gap between policy and practice. These changes will need the support of managers and professionals at all levels, and must be accompanied by changes in the organisational context, if they are to be effective.
