Having established that children with LD and their families experience inequality (from the perspective of clinical staff) in relation to numerous areas of hospital care, our aim in this chapter is to explore the organisational factors in NHS hospitals that facilitate or prevent this inequality. The results of the organisational mapping exercise conducted in phase 1 are presented, pertaining to the policies, systems and practices related to the care of children with LD and their families that are in place in NHS hospitals. Also included are findings from the staff survey, related to whether having a flagging system or dedicated LD nurse provision has an impact on staff’s perceptions about the care of these patients.
Sixty-five staff members across 22 hospitals (Table 6) were interviewed, with at least two interviews conducted per hospital. Included was a subset of nine nurses and one allied health professional employed in a dedicated LD nurse role, or similar, the results of which are also reported.
| Method | Number of hospital sites | Number of interviews | Staff group (n) | |||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Doctor | Nurse | Allied health professional | LD nurse | Senior manager | Other | |||||
| Interview | 22 | Children’s n = 15 | 65 | Children’s n = 48 | 6 | 15 | 2 | 8 | 13 | 4 |
| Non-children’s n = 7 | Non-children’s n = 17 | 4 | 11 | 0 | 2 | 1 | 0 | |||
The findings presented in this chapter show that, nationally, there is considerable variation among hospitals in terms of the policies, systems and practices in place specifically for children with LD. Some appear to have little, if anything, in place, some have partial systems, policies or practices and some have a cohesive and comprehensive level of provision (Table 7). These groupings were decided based on what was described as being in place, as well as how well the senior managers in hospitals articulated their responses and the level of clarity and certainty with which they talked about LD provision.
| Type of hospital | LD nurse | Flag and alert | Hospital passport | Stand-alone LD policy or alternative | Planning services involving parents | Planning services involving children | Planning services involving children with LD | Feedback from parents | Feedback from children | Feedback from children with LD | LD identified complaint | LD identified clinical incident | |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Cohesive | C | ||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| N | |||||||||||||
| N | |||||||||||||
| Partial | C | ||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| Little or none | C | ||||||||||||
| C | |||||||||||||
| C | |||||||||||||
| N | |||||||||||||
| N | |||||||||||||
| N | |||||||||||||
| N | |||||||||||||
| N |
Policies
Across organisations, none of the interviewees reported that their trust had a stand-alone LD policy for children. More commonly, issues related to the care of children with LD were integrated into a range of policies (three hospitals) and/or other documents (five hospitals), such as a LD care pathway, a protocol, the Mencap Charter88 or standards. The LD care pathway was reported to offer a way of prompting staff to ‘think about what they need to do’ (nurse, specialist children’s hospital B) to make necessary reasonable adjustments for children with LD, for example in relation to the length and timing of outpatient appointments. A LD protocol was described as more prescriptive than, and different from, a pathway, in that it was for ‘staff to follow’ and was about ‘making sure that they make reasonable adjustments and giving them the tools to do so’ (nurse, non-children’s hospital J). One children’s hospital used standards rather than a LD policy so that it ‘could audit against it . . . because sometimes policies were there to refer to but the standard was trying to make it happen’ (play specialist, children’s hospital K).
The decision in one hospital to integrate aspects of LD into existing policies rather than have a stand-alone policy was intended to encourage staff to be ‘less reliant’ on LD nurses. In nine hospitals there was either a lack of knowledge at a senior level about what policies existed or a lack of consensus among participants from the same organisation.
Systems
System for identifying and flagging children with learning disability
Looking across organisations, fewer than half of the 22 hospitals (45%; eight children’s/two non-children’s) had an electronic flagging and/or alerting system in place for identifying children with LD. It was clear that no consistent formal or informal approach to identification existed, with various external sources of information being utilised in practice, including a general practitioner (GP) referral letter or liaison with a school. If a diagnosis of LD was made in a community setting, this might not be known in the hospital. Internally, information about a child’s LD was ascertained through various means such as hospital records, pre-assessment clinics or another hospital service/department or through discussions with parents during the admission or clinic visits. In four sites, staff felt that parents might not support the identification of children with LD because it felt wrong to ‘label’; emphasis instead was placed on children as ‘individuals’ who should be treated ‘the same’, with equality being favoured over equity. In one children’s hospital, staff actively sought permission from parents before a flag was applied, providing an opportunity for a ‘valuable conversation about the benefits of flagging’, and in another a personalised approach was taken, with the distinct needs of all children being ‘assessed and catered for’ (nurse, specialist children’s hospital F).
Once a flag was applied, the system for alerting staff varied. Most commonly, an e-mail was sent to the LD nurse team in the hospital, which could trigger a telephone call from the LD nurse to the ward to ask about making reasonable adjustments and/or providing a hospital passport. In one site, a children’s hospital, the e-mail notification went to multiple staff, including the ‘music therapist’ and the ‘disability teacher’. The only site that had a flagging system in place without LD nurse provision was a children’s hospital that relied on an ad hoc system of sharing information:
We will put a flag so that when they’re admitted it’s flagged up prior to their admission that they’ve got a LD . . . quite often that information is given to the wards . . . put in the diary about what they need. If I’ve got children with specific needs, such as they need a special bed with high sides . . . the consultant would flag that, quite often as part of the pre-assessment.
In some hospitals a flagging system was in place, but this was not accompanied by an automatic process of letting staff in relevant roles know that the flag existed.
In relation to the staff survey, one-quarter of respondents, including 19% of nurses and 28% of doctors, reported not knowing what systems their hospital had in place for identifying patients with LD. In some hospitals there was a lack of agreement about the systems that were in place. For example, in one children’s hospital, 62% staff reported that there was no electronic flagging system, whereas 38% staff reported the opposite.
Whether or not children with LD are identified was viewed as depending on staff receiving initial and ongoing training, gaining experience over time, having sufficient time with the patient and their family and having access to appropriate resources. Senior and more experienced ward staff were more likely to identify these patients and to implement reasonable adjustments to meet these patients’ needs. It was expected that staff involved in a child’s care would ask about any LD and/or would have read a patient’s notes. However, it was also recognised that insufficient knowledge about LD could mean that this would be omitted during admission.
Despite just under half (n = 998, 48%) of all survey respondents agreeing that they were routinely informed of a child’s LD, three-quarters felt extremely confident or confident in identifying that a child in their care or who they met had LD. Those from children’s hospitals reported feeling more confident (76%) than respondents from non-specialist hospitals (70%) and senior nursing and allied health staff (bands 7 and 8) felt more able to identify children with LD than their junior colleagues (bands 1–4, 5 and 6) (79% vs. 71%). Staff in both children’s and non-children’s hospitals were more confident when their trust gave them information about how to define LD. Furthermore, staff working in hospitals that had a dedicated LD nurse (see Learning disability nurse provision) were more likely to have been given information about how to define LD than staff working in hospitals that did not have a dedicated LD nurse (46% vs. 41%).
There appeared to be a correlation between the flagging of LD and staff’s views about reasonable adjustments and safety. Staff from hospitals that flagged felt more able to identify reasonable adjustments that are needed for children with LD than did those from hospitals that did not flag; they also felt more confident that any reasonable adjustments would be accommodated in a timely way. Furthermore, staff from hospitals that flagged were more likely to report working in an environment that was deemed safe for meeting the needs of children with LD, always being able to deliver safe care and feeling more confident to safely manage challenging behaviour. Despite feeling more able to identify children with LD, senior nursing and allied health staff (bands 7 and 8) were no more likely to implement reasonable adjustments than their junior colleagues (bands 1–4, 5 and 6).
System for recording complaints and clinical incidents
Interviewees from only two sites (a children’s and a non-children’s hospital) reported a specific mechanism being in place for identifying that a child at the centre of a complaint or clinical incident had LD, such as a tick box or a specific section on the complaints form, highlighting a lack of recognition of the importance of this nationally. A range of practices within and across sites was described that could result in a child’s LD becoming apparent:
Well you should be able to . . . hopefully someone will have documented within the incident that that had been the case, and also if you looked up that child, or that patient . . . then a flag should come up saying they have a learning disability.
Other factors that depended on an individual’s response to the incident or complaint included the staff knowing the child or identifying LD based on knowledge of the services the child used. Participants from two hospitals, children’s and non-children’s, said that complaints relating to children with LD were sent to LD staff, although no specific mechanism was described for identifying that the child had LD.
When asked about safety, staff from 12 sites (nine children’s and three non-children’s hospitals) felt that there were no differences in their concerns and/or the way safety is managed between children with and children without LD, with some suggesting that children with LD had the same safety issues as children without LD. Those who reported differences between the two groups identified six areas of risk specific to the care of children with LD (Table 8), most of which were associated with the characteristics of the individual child.
| Theme | Subthemes |
|---|---|
| Child | Challenging behaviour |
| Difficulties maintaining personal safety and/or reporting abuse | |
| Communication impairment | |
| Physical impairment – risks with moving and handling | |
| Feeding – risk of choking | |
| Need for routine/familiarity | |
| Complexity of care/comorbidities/medication regimes | |
| Lack of understanding | |
| Equipment | Lack of appropriate equipment |
| Staff | Reliance on parents |
| Lack of familiarity with moving and handling | |
| Lack of time | |
| Environment | Inappropriate space |
| Other people | May pose a risk to physical safety of children with LD |
| Information | Lack of hospital passport |
| Lack of information-sharing | |
| Insufficient risk assessment |
Practices
Learning disability nurse provision
The interviews revealed that LD nurse provision was in place in eight (53%) children’s hospitals and one (14%) non-children’s hospital. Provision ranged from one to four staff per site, working full- or part-time in various roles, including lead nurse, liaison nurse, nurse specialty, disability assistant and nurse consultant. Some worked across multiple hospitals, some worked across hospital and community settings and some worked in child and adolescent mental health services only.
Interviews with those working in a dedicated LD nurse role revealed elements of the role’s operationalisation in practice, as well as valuable insights into workforce and organisational culture. A key finding was the varying breadth and depth of provision across children’s hospitals; some worked in particular clinical areas, whereas others had trust-wide responsibility; some worked with all children with LD; and others worked with particular groups of children only, such as those with autism and LD. In addition, some LD nurses had been employed to work on particular projects for a defined period only. Nurses’ understanding about what was in place at the organisational level invariably differed, with some being knowledgeable only about their specific area of practice. One nurse was critical of the lack of LD nurses employed nationally at a senior level, indicating that this was seen as typical of the lack of value placed on the lives of patients with LD. Many nurses highlighted the value of LD champions or link leads, although one felt that most in their organisation were not actively engaged with the role.
Some staff talked about the culture of the organisation regarding the care of children with LD. There was a strong feeling that there was a lot of work to do and that things were far from perfect, with one nurse describing their trust as ‘tokenistic’ and risk averse towards LD care. However, some sensed a growing willingness and commitment within their organisation to get it right for this population, with the belief that ‘if we get it right for children with LD or additional needs, we’ll get it right for everybody hopefully’ (LD nurse, specialist children’s hospital A). As one nurse said:
We have very good support from people quite high up . . . we need to be doing more, we need to be reasonably adjusting. We want to listen, we want to improve things. We want children, their parents or carers to want to come to this trust . . . not be frightened to come back.
Each of the LD nurses interviewed talked about varying components of their role, and these were mapped onto previously developed role descriptors89 (see Appendix 6, Figure 35). A key focus was on their role as facilitators through contact with either families or supporting staff, especially in relation to supporting reasonable adjustments. The importance of individualised care for patients was described, for example in relation to hospital appointments, the physical and sensory environment, waiting and safety. Having accessible information was seen as key, including using symbols and photographs to make visual journeys of the hospital available to patients in advance of their admission, creating visual timetables and improving hospital signage. Hospitals varied, however, in terms of what they used, particularly in relation to knowledge and use of easy-read materials.
Although nearly three-quarters of sites were reported to have a hospital passport or equivalent available for documenting information about the needs of children with LD, particular issues were described by LD nurses with the use of these in practice. As one said, ‘we get complaints from parents that even when a passport has been pushed through to somebody’s hand, that they feel it hasn’t been read’ (LD nurse, specialist children’s hospital C). This nurse explained that families often do not come in with passports or they do not have the time to access and complete them, and that there are barriers for parents whose first language is not English, or who have LD or low literacy levels. Similar challenges were described in relation to staff utilising hospital passports:
We’ve rolled out the health passport but that’s in relation to the individual practitioner . . . it links to staff knowledge, time and accessibility of the document and the willingness of the practitioner to read or take information from it . . . trying to make sure that’s standard practice at the moment.
In another hospital, a lack of ‘organisational commitment’ was felt to have prevented the hospital passport from being implemented:
We were working with a group which included parents . . . to try and develop a passport for children with complex needs. It went quite well but really hasn’t, kind of, been used very much . . . I don’t think, real, kind of, organisational commitment to it.
A related challenge reported by one LD nurse was acquiring the relevant information to plan and make reasonable adjustments in advance, rather than having to adopt a reactive approach:
If a family can give us plenty of notice once they get their letter then we can start making adjustments but what we are not good at is picking up from the moment . . . to be proactive and to say ‘Hi, what do you need us to do?’ because children are varied and they change so quickly, so we tend to rely on families getting in touch with that.
Educating staff and students appeared to be another large component of the LD nurses’ role, and this was seen as fundamental to getting it right for families, alongside staff having opportunities to put their learning into practice. The link between training and confidence was highlighted, as was the need to empower and upskill professionals. A positive initiative in one specialist children’s hospital was training volunteers and staff across accident and emergency and reception areas in positive behaviour support to help children with behaviours that challenge.
Some LD nurses spoke about the strategic element of their role, and of trying to influence the culture and practices at the organisational level through the creation of systems, pathways and policies. These nurses tended to be employed at a more senior role with a trust-wide remit, rather than working in a particular department or with a specific group of children.
Comparing the views of staff working in the eight children’s hospitals with dedicated LD nurse provision (n = 752) with those of staff working in the seven children’s hospitals without dedicated LD nurse provision (n = 929), no significant differences were seen in relation to (1) staff being routinely informed that a child has a LD; (2) staff’s confidence, capability or capacity to meet the needs of children with LD; (3) perceptions of the hospital valuing children with LD; or (4) staff’s perceptions of safety. Furthermore, staff’s perceptions about the access that children with LD have to hospital-based education, medical care, play facilities and first/last or flexible appointments did not differ significantly.
Access to investigations, procedures and treatments
Staff were asked to identify barriers to and facilitators of children with LD accessing investigations, procedures and treatments (Table 9). Six areas were perceived to have an impact on access, of which two were family related (children and parents) and four were hospital related (staff, services, environment and resources/equipment). The over-riding message from these data is that children with LD need access to (1) staff with LD knowledge and training, who in turn can access specialist staff when needed; (2) appropriate equipment and resources; and (3) appropriate spaces. In addition, the ability of parents to advocate for their child should be considered.
| Barriers | Facilitators | |
|---|---|---|
| Staff | Lack of knowledge about needs of children, how to identify them | Knowledge of specific needs of children with LD |
| Lack of access to specialist staff | Access to LD nurses, named paediatricians, play specialists | |
| Lack of time – plan, meet needs | Preparation and planning | |
| Lack of training | Access to LD-specific training and information | |
| Lack of power | ||
| Negative attitudes – not wanting to care for LD patients, believing it is parents’ responsibility to provide care, children with LD will disrupt other patients | Trust recognition of need to focus on LD and staff ‘champions’ | |
| Reliance on parents | ||
| Environment | Lack of appropriate space/cubicles, too cramped | Access to appropriate space: cubicles, wet room, sensory room |
| Lack of quiet space | Access to quiet space | |
| Lack of wheelchair access | ||
| Service related | Lack of co-ordination between hospital services and between hospital and community | Streamlining/co-ordinating appointments and providing flexible services |
| Lack of specialist treatments and/or procedures | ||
| Lack of staff capacity | ||
| Cost – staffing | ||
| Waiting times | ||
| Disparity of care/services within/across hospitals | ||
| Children | Unable to cope with delays/disruption to routine | |
| Anxiety | ||
| Feeling stigmatised | ||
| Parents | Lack of knowledge of what is available | |
| Lack of ability to articulate child’s needs | ||
| Too embarrassed to ask for what they need | ||
| Having a LD themselves | ||
| Language barrier | ||
| Feeling overwhelmed/negative about what can be done | ||
| Do not bring in hospital passport | ||
| Listening to parents | ||
| Working in partnership with parents | ||
| Resources and equipment | Lack of communication tools | Access to communication tools and hospital passport |
| Lack of hoists | Access to hoists | |
| Lack of beds | Access to specialists beds | |
| Lack of bespoke equipment | Access to adapted eating equipment, developmentally appropriate toys |
Practice of involving children and parents as partners in care
When staff were asked about their trust’s policy for involving children and parents as effective partners in care, it was apparent that there was a lack of policies or formal practices. Rather, staff implied that there was an implicit inclusion of children and their parents as partners in care.
Providing information
There was variability in knowledge about what information was available for parents and children, with or without LD, to be partners in care. Most commonly reported was parents being provided with written information leaflets related to their child’s health condition. A guideline for parents of children with LD was reported in one site. Examples of information for children were leaflets, books, easy-read materials and photographs.
Six children’s hospitals and two non-specialist hospitals reported at least one adapted method for providing children with LD information about their condition or inpatient stay, such as easy-read materials, widget symbols or photographs. One hospital had clear guidelines for producing information, including a process to check the accuracy, readability and accessibility of this information, and the LD team worked with departments to produce easy-read materials. There were selected examples of inclusive practices, for example a young person with Down syndrome featuring in a video about a day procedure. Despite these positive examples, only one-third of hospitals in our study had any specific method of providing information to children with LD, with one interviewee acknowledging that engagement was better with children without LD.
Eliciting feedback
Trusts primarily used the NHS Friends and Family test90 to measure satisfaction with their services, alongside other local surveys, feedback sheets or patient narratives. Some reported their intention to collect feedback from all children using child-friendly methods, for example a visual method using a washing line with ‘vests’ and ‘pants’ to help children describe aspects of their care that were positive and negative, which may be a more inclusive way of gathering feedback. Another hospital encouraged children to make films about their hospital experience. Photography, texting, and sing and sign were also mentioned.
The majority of sites did not report having made a specific effort to collect satisfaction data from children with LD. Instead, sites appeared to offer children with LD (regardless of their communication methods or abilities) methods that were used for younger children, such as pictures or using a drawing on the Friends and Family Test. Alongside this, it was suggested that parents or ward staff could assist children with LD to complete any feedback. One site reported having a range of methods for engaging children with LD, including drawing, writing, recording a DVD, putting Post-It notes on a wall or using photographs.
Involving in planning services
Two-thirds of staff from children’s hospitals and one-third of staff from non-children’s hospitals described mechanisms for involving parents in planning specific services, such as parent groups/forums, staff interview panels, family days and listening events. The participation of children in a range of groups or forums was reported, for example, through the ‘15-step programme’, which is based on taking 15 steps into a clinical area and children providing their feedback. A further initiative is ‘a spoonful of sugar scheme’, whereby the nurse meets the child before a consultation to help the child prepare questions they may want to ask. Interviewees were less certain about the specific involvement of children with LD either to inform specific services or, more widely, though a Young People’s Advisory Group or similar. Three hospitals reported active inclusion and engagement with children with LD through children’s forums or the adaptation of, for example, surveys and interviews for those with LD.
Conclusions
The findings presented from both the mapping exercise and the staff survey reveal a range of cross-organisational, organisational, staff and family-related factors in NHS hospitals deemed to facilitate or prevent children with LD having equal access to high-quality hospital care. The diagrams that follow (Figures 4–8) highlight these factors in relation to our RQs, with barriers grouped in the red boxes on the right and facilitators grouped in the green boxes on the left. Using results from subsequent chapters in relation to hospital and community staff (see Chapter 7) and families (see Chapters 8–11), we will incrementally build a comprehensive picture of the factors that are key to ensuring equality, drawing out overarching themes.
FIGURE 4 Perceived barriers to and facilitators of identifying children with LD in hospital (survey data and mapping exercise) (RQ1). LDLN, learning disability liaison nurse. (Figure not reproduced here; see the original article.)
FIGURE 5 Perceived barriers to and facilitators of meeting the needs of children with LD in hospital (survey data and mapping exercise) (RQ1). (Figure not reproduced here; see the original article.)
FIGURE 6 Perceived barriers to and facilitators of children with LD gaining access to investigations, procedures and treatments in hospital (survey data and mapping exercise) (RQ2). (Figure not reproduced here; see the original article.)
FIGURE 7 Perceived barriers to and facilitators of involving children with LD and their parents as partners in care (survey data and mapping exercise) (RQ3). LDLN, learning disability liaison nurse. (Figure not reproduced here; see the original article.)
FIGURE 8 Perceived barriers to and facilitators of children with LD being safe in hospitals (survey data and mapping exercise) (RQ5). (Figure not reproduced here; see the original article.)