Synthesis and discussion

We set out to identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate or prevent children with LD and their families receiving equal access to high-quality care and services, as well as to develop guidance for NHS trusts about the implementation of successful and effective measures to promote equal access for children with LD and their families.

To achieve our aim, we needed to answer a number of RQs.

From the perspectives of families and clinical staff:

1. Do children with and children without LD and their families have equal access to high-quality hospital care that meets their particular needs?
2. Do children with and children without LD, assisted by their families, have equal access to hospital appointments, investigations and treatments?
3. Are children with and children without LD and their families equally involved as active partners in their treatment, care and services?
4. Are children with and children without LD and their families equally satisfied with their hospital experience?
5. Are safety concerns for children with and children without LD the same?
6. What are the examples of effective, replicable good practice for facilitating equal access to high-quality care and services for children with LD and their families at the study sites?
7. What indicators from the data and the literature suggest that the findings may be generalisable to other children with long-term conditions in the hospital setting?

We were able to generate a large body of evidence about the way in which hospital inpatient care is delivered to and experienced by children with LD and their parents, from the perspective of multiple stakeholders, as well as drawing comparisons with children without LD and their families. Synthesising these data reveals a range of barriers to and facilitators of children with LD and their families receiving high-quality hospital care in relation to (1) how their particular needs are identified and met in hospital (RQ1); (2) their access to investigations, treatments and procedures (RQ2); (3) their involvement as partners in their care (RQ3); and (4) their safety (RQ5) (Figures 25–29). Quantitative and qualitative data collected at the organisational level (phase 1) and at the individual staff level (phase 2) showed evidence of inequality in each of these areas, as well as how valued children were and whether or not they were treated with dignity and respect. There was no difference in these findings between children’s and non-children’s hospitals.

FIGURE 25 Synthesis of perceived barriers to and facilitators of identifying children with LD in hospital (RQ1). a, Organisation mapping, staff survey; b, staff interviews; c, parent interviews. LDLN, learning disabilities liaison nurse. (Figure not reproduced here; see the original article.)

FIGURE 26 Synthesis of perceived barriers to and facilitators of meeting the needs of children with LD in hospital (RQ1). a, Organisation mapping, staff survey; b, staff interviews; c, parent interviews. LDLN, learning disabilities liaison nurse. (Figure not reproduced here; see the original article.)

FIGURE 27 Synthesis of perceived barriers to and facilitators of children with LD gaining access to investigations, procedures and treatments in hospital (RQ2). (Figure not reproduced here; see the original article.)

FIGURE 28 Synthesis of perceived barriers to and facilitators of involving children with LD and their families as partners in care (RQ3). a, Organisation mapping, staff survey; b, staff interviews; c, parent interviews. LDLN, learning disabilities liaison nurse. (Figure not reproduced here; see the original article.)

FIGURE 29 Synthesis of perceived barriers to and facilitators of children with LD being safe in hospital (RQ5). a, Organisation mapping, staff survey; b, staff interviews; c, parent interviews. LDLN, learning disabilities liaison nurse. (Figure not reproduced here; see the original article.)

Findings from both quantitative and qualitative data indicated inequality with regard to children’s access to high-quality hospital care that meets their particular needs (RQ1) and children’s safety (RQ5) from the perspective of parents. Although the quantitative data did not show evidence of inequality in relation to parents’ perceptions of their child’s access to investigations, treatment and procedures (RQ2), there were examples in the qualitative data of parents describing their child’s access being affected by the presence of LD, including in terms of particular aspects of provision, such as the hospital play service, suggestive of inequity. Similarly, the quantitative data did not show evidence of inequality in terms of parents’ perception of their involvement as active partners in their child’s treatment, care and services (RQ3), and this was reflected in the qualitative data, with both sets of parents expressing very mixed views. Parents of children with LD expressed particular issues in relation to being listened to and having their expertise respected and their child being included in conversations and interactions. RQ4, related to parents’ satisfaction, was addressed through the inpatient survey only, and there was no evidence of inequality between parents of children with and parents of children without LD. The children’s inpatient survey showed no evidence of inequality in relation to RQ3, RQ4 and RQ5. The qualitative data, however, provided insight into what children with and children without LD like and dislike about being in hospital, with examples of both good and suboptimal experiences across many areas for individuals in both children’s and non-children’s hospitals. Data revealed the importance of all children having access to age and developmentally appropriate play facilities, television and Wi-Fi, as well as good food and sleep. Children generally found staff to be friendly, but did not always feel listened to or involved in their care or that staff knew what was important to them or had enough time to spend with them. Findings from the parents’ and children’s survey supported what families shared in their interviews: that, on the whole, being in a cubicle, which provided privacy, space and a quiet environment, was preferred. This presented a risk, however, of families being ‘out of sight, out of mind’, which was particularly challenging for children with LD, who were unable to ask for help or keep themselves safe.

A key factor to inequality appeared to be the lack of effective policies, systems and processes in place to support the provision of individualised care to children with LD in hospital, which often led to insufficient or, in some cases, a complete lack of attention being paid to their particular needs resulting in potential inequity. This stems from staff usually not knowing that the child has LD in advance of meeting them, and not having sufficient knowledge of the diagnosis or what it then means for that child, which is made more difficult by a lack of consistent terminology. When drawing comparisons between the views of parents of children with and parents of children without LD, a key difference appeared to be the scale of impact when care is not individualised. For example, whereas both groups of children may find it difficult to wait in hospital or have their routine disrupted, this can lead to a complete emotional breakdown for children with LD that can last for hours afterwards, rather than them being upset or fed up at the time. Furthermore, it might be easier for parents of children without LD to rationalise things with their child and find strategies to resolve situations than it is for parents of children with LD. Likewise, children without LD, especially when the admission is short, can often find other resources they can rely on when things are not available. As one mother said, ‘If you’re good enough to be interacted with, it’s time to leave. Which is fine.’ In relation to parents, the difference in scale of impact when care is not individualised is highlighted most clearly with regard to their safety concerns, with parents of children with LD expressing a level of hypervigilance that differed in scale and intensity from the continuum of vigilance described by parents of children without LD; although not sleeping was common to both groups, parents of children with LD might sleep with their child; although maintaining personal care was an issue for both groups, parents of children with LD might take their child with them to the toilet.

What largely appears to happen in practice is that children coming into hospital tend to be treated ‘equally’, rather than ‘equitably’, and are expected to follow the same care pathway, which is determined by their medical needs and the reason for their admission. Any adjustments in care, rather than being considered in advance, are largely made or not made as and when a child falls off the pathway; the multiple and compounding layers of complexity surrounding the care of children with LD places them at greater risk of this falling-off than other children. Getting these children back on the pathway depends on a number of factors, discussed below, but a lack of flexibility within the system is key. For children with learning difficulties, such as dyslexia or autism, but without LD, these same issues in following the pathway were described.

We know from other research99 that this is a common complaint from parents, not just those whose child has LD. One key factor seen to make a positive difference was staff knowing the child as a result of a previous admission, although, as parents highlighted, these staff were not always on shift or, if they were, were not necessarily allocated to them.

Another barrier to the provision of individualised care to children with LD in hospital is the lack of ‘nomothetic’100 knowledge that staff hold about children with LD in general. As reported elsewhere,56,57 with the exception of paediatricians, undergraduate training in LD is extremely limited, and opportunities for training in the clinical setting are almost non-existent. Hence, we found that in the most part, the knowledge staff developed about children with LD came from experience gained over time. This would explain why staff in children’s and non-children’s hospitals reported having less capacity and lower levels of capability and confidence to meet the needs of children with LD than of those without LD, particularly in relation to communicating effectively, assessing and managing pain, and managing behaviours that challenge. The findings closely resemble those reported in relation to adults with LD,32 in which limited staff knowledge and skills concerning LD and a failure at the systems level for required adjustments to be made were key factors in patients’ needs not being met.

Parents described three approaches by which staff appeared to generate ‘idiographic’100 knowledge about the needs of a child with LD: most commonly, the passive ad hoc approach of generating ‘knowledge by chance’ at varying points during the admission, with staff relying predominantly on parents actively sharing information about their child; the reactive approach of generating knowledge through ‘learning on the job’ and seeing what can or cannot be done with that information; and, rarely, paying complete attention through a proactive approach of asking parents in advance of the admission what reasonable adjustments are needed for their child, ‘leaving no stone unturned’ (Figure 30). This represents a lost opportunity for staff to build a complete understanding of the child’s individualised needs in a timely manner and use that knowledge to inform their practice. This lack of knowledge is reflected in the data collected from children with LD, with only 52% feeling sure that staff knew their likes and dislikes, and even fewer (41%) feeling sure that staff knew what was important to them. Compounding this situation is that inpatient documentation and communication about children with LD is overwhelmingly medically focused and, despite senior managers in nearly every participating hospital reporting having a hospital passport in place, few parents had even heard of this; those who had heard of it felt that this were not used well in practice, an issue that was also raised by staff. Good documentation is particularly important for unplanned admissions, where the opportunity to gather information that relates to medical and non-medical needs in advance is limited.

FIGURE 30 Approaches staff take to identify that a child has LD. (Figure not reproduced here; see the original article.)

Although some individual staff had concerns about labelling children with LD, parents valued being asked about the additional needs of their child, including any learning requirements, so that necessary adjustments could be made. This was also the case for parents whose children without LD had additional learning or behavioural needs. What parents of children with LD disliked was constantly repeating the same information, especially when it meant repeating their child’s entire medical history for no clear reason. This appeared to be particularly true when there were sensitivities surrounding the LD diagnosis.

Bringing the data from parents and staff together shows a relationship between the type of knowledge staff hold about disability and the skills and confidence of staff to apply that knowledge in practice (Figure 31). It shows the equal importance of staff undertaking training and gaining experience to build their knowledge about children with LD generally, as well as generating knowledge at the individual level for every child through proactively working in partnership with parents prior to the child’s admission to hospital. There were examples in the data that supported each component of this model; what is evident is that the LD nurse is well placed to have both good knowledge of the individual child and the confidence and skills to apply this knowledge in practice. They described numerous aspects to their role, which focuses on supporting individualised care for children with LD, and staff valued their input as well as that of LD champions, where these existed. Furthermore, the few parents in the study who had input from a LD nurse valued this highly, and some indicated on the parent survey that they would have valued input from a LD nurse had this been an option. At present, provision of LD nurses is patchy and there is a lack of consistency in terms of their seniority and remit. What is important is understanding how the LD nurse role is best operationalised in practice to have the greatest impact on families, supporting and empowering all staff to adapt their own practice and providing them with the opportunity to do so.

FIGURE 31 Relationship between types of knowledge staff hold about disability and the skills and confidence of staff to apply that knowledge in practice. (Figure not reproduced here; see the original article.)

The child and family in hospital exist at the centre of a complex series of interconnected systems within and across organisations. The huge variability in LD-related provision within and across these organisations results from the lack of a coherent, robust approach to the care of these children. The experience of individual children and families in our study, both those with and those without LD, was overwhelmingly affected by the individual health-care professional caring for them at any given time, with a lack of consistency in attitudes, practices, skills and knowledge of staff working on the same ward at the same time and across different wards and hospitals. Furthermore, the suitability of the hospital environment for children with LD and the availability of appropriate resources and equipment differ. This variability leads to uncertainty for parents and children, especially those with LD, about what to expect in terms of their hospital experience and the ‘rules of engagement’, leading to a strong preference for selected staff and creating heightened anxiety when those key people are not around. Similarly, for a multitude of reasons, including a lack of familiarity with the child, a lack of staffing or a lack of skills and confidence, staff can come to rely on parents being present with their child, thereby highlighting the particular strains that the current system inadvertently imposes on parents. The safety of the child underpinned the role that all parents played in hospital, including a general lack of willingness and ability to relinquish aspects of responsibility for their child’s health and well-being to hospital staff in whom they did not have complete trust. Sometimes even complete trust was not enough for parents to leave their child, as happens when children attend school. This is in stark contrast to parents’ willingness to hand over responsibility for their child to teachers at school. The safety concerns of parents of children with LD were heightened as a result of issues with the hospital environment and use of equipment, and their child’s restricted ability to ask for help, to spot danger and to keep themselves safe. Based on perceptions of risk, only in the rare cases that constant vigilance101 was offered by staff would parents of children with LD take a break, with a resulting impact on their own health and well-being that was similar to, but on a different scale from, that reported by parents of children without LD.

Although our phase 1 survey data found that staff perceive that children with LD are valued less and treated with less dignity and respect than children without LD, interviews with LD liaison nurses across children’s hospitals revealed evidence of an improving organisational culture and a commitment to getting it right. However, at present, the relevant policies, systems, and practices are not sufficiently embedded in clinical practice, with, for example, many senior managers not knowing whether or not a specific LD policy exists in their organisation. Only half of children’s hospitals have any form of flagging and alerting system in place, and these vary in terms of their effectiveness in informing staff of a child’s LD and what that means for them. Furthermore, only two hospitals reported having any formal mechanism for recording LD within complaints and clinical incidents, which represents a lost opportunity to compare group-level data.

What is needed is to ensure both equality and equity is a joined-up, cohesive approach to the management and governance of LD health care at all levels that facilitates the development of an ‘institutional memory’ of the specific child rather than relying on the ‘individual memory’ of a particular member of staff.

In Figure 32 we have brought together the factors at the cross-organisational, organisational, staff, team and family levels that are shown to facilitate equity and equality. This, together with our empirical framework (Figure 33), offers a level of detail to guide NHS trusts about service design and delivery. The acronym PROACTIVE is used to illustrate the factors that individual staff and teams need to consider when delivering individualised care to promote equality and equity for children with LD and their families through the provision of reasonable adjustments. It serves as a useful reminder of the importance of staff taking the initiative to identify reasonable adjustments in advance of a child’s visit or admission to hospital, as well as providing a useful way for staff to remember what factors to consider in practice. Being ‘PROACTIVE’ advocates staff working in partnership with parents and other community partners (P), having access to appropriate resources (R), taking the opportunity to understand the individualised needs of the child (O), asking parents and children what matters to them and advocating on their behalf (A), communicating effectively (C), having sufficient time and thinking about the timing of care (T), identifying children with LD within the organisation and having an inclusive approach to developing services to meet their needs (I), valuing every child as an individual (V) and adjusting the environment (E). Table 14 provides examples of good practice taken from our data for each of these factors. By applying these in practice for children with LD, it should be possible to get it right for all children irrespective of their age, cultural background or cognitive ability, including the issues related to teenagers highlighted by staff.

FIGURE 32 A conceptual model of the individual, organisational and cross-organisational factors relevant to the delivery of individualised care to children with LD and their families in hospital. (Figure not reproduced here; see the original article.)

FIGURE 33 Empirical framework. LDLN, learning disabilities liaison nurse. (Figure not reproduced here; see the original article.)

Although examples of individualised care were largely lacking in this study, this should not take away from the many examples of good practice that parents and children described in the care they received, with many individual staff being praised for going out of their way to give families a good experience. Furthermore, when it was provided, individualised care was highly valued by parents and children, with small gestures appearing to make all the difference. On the whole, the data show that staff are being let down by an inadequate system, and the negative attitudes and assumptions of the minority, which can have a lasting impact on parents and children, need to be addressed.

Cross-organisational

The results of this study are timely, underscoring the relevance that a number of recent developments at the national level have had to the care of children with LD in hospital, as well as adults, who hitherto have been the primary focus. The development of The Learning Disability Improvement Standards for NHS Trusts,102 the ongoing national mortality review programme,5 the increasing focus on LD in Care Quality Commission inspections,103 the Transforming Care agenda104 and recent guidance on issues such as reducing the need for restraint and restrictive interventions105 are important contributions to achieving quality care and provide a sufficient framework to support organisations to respond to the majority of our findings. The Learning Disability Improvement Standards for NHS Trusts, for example, highlight the need for a flagging system to identify patients with LD and for measures to promote antidiscriminatory practices, learning from complaints, services to be co-designed and to develop ‘workforce plans that manage and mitigate the impact of the growing, cross-system shortage of qualified practitioners with a professional specialism in LD’ (contains public sector information licensed under the Open Government Licence v3.0).102 They also require NHS trusts to demonstrate that they are making reasonable adjustments for patients with LD. All of these relate to issues raised in this study. What is missing from The Learning Disability Improvement Standards for NHS Trusts102 is a focus on the role of parents in hospital and their physical and emotional well-being; an improvement standard related to this is needed.

However, we cannot expect essential improvements to happen without an investment in education and training for all staff and a recognition that increased resources are needed. Undergraduate nursing courses are currently offered across five specialist branches, one of which is LD. A range of post-qualification courses are also available. We found only one that was a combined children’s and LD course. All education to qualify as a children’s nurse will include some content on caring for children with LD, but on the whole this will be a small part of any curriculum, and is known to vary across courses. Nurses can make a huge contribution to reducing inequalities and inequities of care for this patient group. This requires an understanding of the needs of these patients and when to refer them for specialist support, such as that provided by LD nurses. To do this, every nurse requires training that covers a ‘common core curriculum’.99 Our conceptual model provides a framework for this training that can be tailored accordingly to different professional groups and health-care settings. Trusts across the UK will soon be required to put in place mandated in-house LD/autism education and training, and essentially this must be supported by nurse leadership; a nominated executive LD lead must be in place. A core curriculum that standardises undergraduate training and continuing professional development provided by each trust is an important step forward.

Although the national commitment to providing mandatory disability awareness training for all hospital staff is welcome, this alone will be insufficient to address the issues our research has highlighted. If LD nurses spend years being trained as specialist nurses and hold the knowledge and education to help and understand the daily struggles of people with LD (www.mencap.org.uk/blog/daily-struggleslearning-disability-nurse), these skills should be utilised in all settings to help achieve, promote and drive equal rights in health care.

The data also highlight that a lack of shared language across health, education and social care organisations in relation to LD is a barrier to equality and equity, but more so is a lack of communication and documentation between health-care professionals about what any diagnosis or ‘label’ means for an individual child. Part of any training has to include an understanding of the need to individualise care for patients with LD, and for that we need consistent language, with less focus on diagnostic labels and more focus on asking families what is important to them.