Chapter summary
The evidence from this study is that it is easiest for acute trusts with a LDLN service, particularly those with an on-site LDLN, to provide safe and good-quality health care for people with learning disabilities. The LDLNs were most effective if they had (a) a high level of expertise and understanding of the needs of people with learning disabilities and their carers; (b) authority to make decisions that change patient care pathways, as well as a good understanding of, and access to, all clinical areas within the acute trust structures; (c) high visibility and availability within the hospital; and (d) strong support from senior hospital managers.
The issues around patients with learning disability and the adjustments that may be needed were so complex that the support of a dedicated, highly skilled LDLN service was a key element of ensuring that preventable harm and preventable deaths were avoided in a number of cases. However, the effectiveness of the LDLN was often limited by a lack of cover for absence and by inadequate structures for senior management support and accountability, with a risk of the role being marginalised.
The learning disability liaison nurse roles at the study sites
Having a LDLN was a clear facilitator in every research question addressed in Chapters 5–8. This chapter reports on the study findings in relation to the LDLN role, the various elements of that role and the factors that made the role more or less effective at the study sites.
All LDLNs in this study were the first to occupy the post at each site, with several reporting that they wrote their own job description. At four of the trusts, the LDLN role was implemented in direct response to hospital inspections, national reports (including Death by Indifference1), inquiries (including Healthcare for All4) and recommendations. At one trust, the community learning disability nurses had successfully lobbied hospital management to implement the role. The roles varied, as follows:
Three trusts employed a LDLN who was based at the hospital. One of these worked part-time.
One trust was integrated with a PCT, which had one LDLN who was assigned to work at the hospital. Her base was in the community.
One trust worked closely with two LDLNs in the community, whose caseload consisted of patients within their catchment area who were in hospital.
One trust did not have a LDLN but worked with a number of learning disability community nurses, and was establishing the role of ‘link nurses’ on each ward.
Despite the praise that was heaped on the LDLN post holders by participants in this study, the continued existence of their posts was far from secure. Several LDLNs expressed concern that support for their post from senior managers and commissioners could wax and wane with changes in senior management positions and with the national profile of issues around health, safety, avoidable deaths and learning disabilities.
I’ve gone right down the pecking order because something else has come back up on the pecking order. And that’s so frustrating because it’s always on my agenda and in my head it’s the most important thing, but obviously in the Director of Nursing or Chairman’s head it isn’t.
P9, LDLN
Considerations of the cost of employing a LDLN, and the relatively low number of patients with learning disabilities identified within the hospital, led to some senior strategic managers concluding that implementing or maintaining a LDLN service was difficult to justify, particularly in an economic climate of funding cuts.
Elements of the learning disability liaison nurse role
Similar to the findings of Brown et al.,65 the LDLN role was found by this study to comprise three key elements: clinical patient care; education and practice development; and strategic organisational development. In addition, the LDLNs had a role as champion for the needs of people with learning disabilities that straddled all these elements. The extent to which the LDLN was involved with each of the elements varied considerably between trusts.
Clinical patient care
All LDLNs had a caseload of patients with learning disabilities. They provided support for patients, carers and staff throughout the patient’s hospital journey. Referrals came either through the hospital (referrals from hospital staff, or the LDLN actively looking for patients within the hospital) or through the community, by carers and patients contacting the LDLN directly or by community staff making referrals.
The role was often extremely complex and required significant skills in communication and negotiation. Key aspects of the LDLN role included:
the provision of expertise around mental capacity assessments and individualised communication
communicating and liaising with carers, ensuring that the carers’ voices were heard and their needs were met
liaising with other services, in particular primary care services
co-ordination of care, which included ensuring a wide range of reasonable adjustments were in place (see
Chapter 6).
Without [LDLN input] there is no sort of yardstick or benchmark. You know, a phone call: ‘Have you done this? Have you done that?’ Even if it’s ‘yes, yes, yes, yes’, that’s fine – but if it’s ‘no, no, no, no’, then she can either help, give advice. If you go and trawl through the intranet and it takes you half an hour to find the policy, you’re not likely to do it. And if the patient comes in on their own or there’s a problem with the relatives, then it also becomes problematic and [LDLN] can sometimes intervene.
P50, ward staff nurse
Education and practice development
The delivery of education and training to all hospital staff was an essential element of the LDLN role, although this was not straightforward in practice. Part of the challenge was finding effective ways of training a vast workforce. One LDLN had worked out that if she wanted to reach all the hospital’s staff in a formal training session across the year, it would mean training well over 100 staff members per week.
There was concern, in particular among senior managers, that having a LDLN could de-skill the workforce by ‘taking over’ patient care. However, there was no evidence in the study that the hospital staff were de-skilled by input from the LDLN. On the contrary, LDLNs ‘role modelled’ good practice, including possibilities for reasonable adjustments, that were then more likely to be taken up by hospital staff when the LDLN was absent.
Interviewer:
How do you think [employing a LDLN] has panned out in terms of staff being more skilled or not skilled?
P79, Deputy Director of Nursing:
Definitely more skilled . . . They see the different techniques that they can use, they then start to use those skills so she doesn’t get phoned to ask, ‘What do I do?’ She may well then get a contact which says, ‘I’ve done this, is that fine?’ The next step is then actually she doesn’t get called at all and it’s incorporated within the generalist care of the patient. And that is the end point, that’s what you want to achieve.
Strategic organisational development
The LDLNs, where there was one in place, were often a driving force behind the development of all policies, guidelines and resources related to learning disability. Several senior strategic managers indicated that they relied on the LDLN to be on top of relevant legislation and national recommendations as well as potential problem areas, as they themselves did not always have good understanding of the issues around learning disabilities.
Championing
Learning disability liaison nurses were enthusiastic advocates and champions of the needs of people with learning disabilities within the trust; this increased the effectiveness of the role. Some carers noted a positive change in staff attitude and hospital culture and thought that the LDLN was an important part of this change.
I’ve noticed a great sea change, it’s more an attitude on the part of the staff . . . [In the past] we were pretty much left to deal with things ourselves, you know, carrying trays whilst pushing a wheelchair. But now people help. [LDLN] has done a lot of work and I have seen the difference. Dealing with the staff, receptionists, doctors, they are more understanding of [my daughter]’s needs, even high powered consultants address [my daughter] now.
P157, family carer
Effective championing and awareness meant there was a greater likelihood that hospital staff considered the specific needs of individual patients with learning disabilities.
If I see those words [learning disability] come up [on the handover sheet] I think, ‘We must make sure that we let [LDLN] know they’re here’ . . . It just sort of clocks in my mind a little bit more.
P23, ward manager
Evaluation of the learning disability liaison nurse service
Although this study did not specifically address the levels of staff/carer/patient satisfaction with the LDLN service, it was clear from the qualitative data that such satisfaction was extremely high. Stakeholders reported improved communication, improved patient assessment (including capacity assessments) and improved patient pathways with good reasonable adjustments. Words such as ‘wonderful’, ‘brilliant’ and ‘amazing’ were frequently used to describe the individual post holders and their qualities.
We’ve got a [LDLN] and she’s absolutely brilliant. You can ring her with absolutely anything and she will endeavour to help you and always, always gets back to you. She’s really, really good.
P52, ward staff nurse
The only time that went well is when I saw [LDLN] . . .
P149, person with learning disabilities
Interviewer:
What was so great about her?
P149:
Because – brilliant.
Interviewer:
What made her brilliant?
P149:
Because she take – she took time. To speak to you.
The degree to which the LDLN role contributed to patient safety and avoidance of potential harm is more difficult to measure and quantify (see Chapter 10). However, there were a range of examples within this study where the intervention of the LDLN undoubtedly contributed to the safer care of patients with learning disabilities, including examples where death was avoided. For instance, in a number of cases skilled mental capacity assessments led to ‘best interest’ decisions to deliver treatment that would, without the LDLN’s intervention, not have been given.
Although all Healthcare for All4 recommendations were difficult to achieve, synthesis of the evidence from this study, presented in Chapters 5–8, suggests that hospitals with a dedicated LDLN service (and particularly the three hospitals with an on-site LDLN) were best able to:
identify patients with learning disabilities throughout the hospital and track their pathways of care
increase awareness of, promote and support the role of carers as active and necessary partners in care
ensure that complex reasonable adjustments can be made, in particular those that involve changes to structures, rules and systems
develop appropriate policies, pathways and tools to support the needs of patients with learning disabilities and their carers.
Factors affecting the effectiveness of the learning disability liaison nurse role
The study results indicate that in order for the LDLN role to be effective, she must have:
a high level of learning disability expertise and credibility with hospital staff
authority to make decisions that change patient pathways
high visibility and availability within the hospital
strong support from senior trust managers.
Learning disability expertise
The LDLNs’ high level of learning disability expertise was clearly recognised and valued by hospital staff. They mentioned the LDLN’s expertise with communication, knowledge of the Mental Capacity Act, help with assessing the patient (including assessments of capacity) and skill in liaising with families. Physicians noted that they found it difficult to do mental capacity assessments for patients with learning disabilities and to keep up to date with legislation, and depended on the LDLN’s expert help.
Hospital staff admitted that they themselves lacked the necessary expertise to provide a good standard of care for patients with learning disabilities, and therefore needed expert help.
The ward link nurse model
Several hospitals had systems whereby ward nurses were allocated a role as ‘learning disability link nurse’. They would act as a resource or point of contact for other staff with regards to issues around learning disability. The evidence from this study suggests indeed that ward link nurses lack specific learning disability expertise and cannot therefore be relied upon to provide the necessary support for staff, patients and carers. In particular, they do not have sufficient understanding of the sometimes complex adjustments needed to ensure that patients with learning disabilities receive adequate health care.
Authority to change patient pathways
For patients and carers, the fact that the LDLN was able to affect and change the patient journey made a huge positive difference.
In the last admission we were blocked by a nurse at A&E, but within five minutes of a call to [LDLN] things went OK. When he came to A&E this time I phoned [LDLN] beforehand, and she and the GP told them he was coming and they were ready for him.
P11, family carer/parent
As has been shown in Chapter 6, the provision of reasonable adjustments can require complex changes to patient pathways involving trust-wide structures and systems. For the LDLN to be effective in her role, she needed to have an in-depth understanding of the organisation so that she could determine whether, and how, its structures and systems could be adapted to meet the patient’s needs. This included a consideration of the pressures and capacity on general hospital services as well as the needs of the patients. For this reason, senior managers and LDLNs at several trusts argued that it was important for LDLNs to be hospital based. There was indeed evidence within the study that the community-based LDLNs lacked the seniority and inherent authority within the hospital structures to be effective change agents. They also seemed much less well known by hospital staff, affecting the readiness of the hospital staff to make suggested changes to patient pathways. They were more dependent on the active backing of senior hospital management when giving specific advice around changes to individual patient pathways.
I have more freedom just to move within the hospital, so I can go into places like theatres . . . And it’s about knowing the people in the hospital and getting them to know and trust and respect what you say. I’ve got the back-up of the fact that we are all on the same team, whereas when I was a community nurse, outside . . . it sometimes felt like ‘you’re trying to drop us in it’.
P9, LDLN (hospital based)
Visibility, approachability and availability
Visibility
For the LDLN to be effective throughout the hospital, it was important that hospital staff knew who the LDLN was, understood her role and knew how to contact her. This was easiest to achieve if the LDLN had a physical base in the hospital. It was also important that the LDLN was known among community learning disability staff and carers, so patients that needed hospital tests or treatment could be flagged up to the LDLN directly – as has been described in Chapter 5, many patients with learning disabilities were not identified by hospital staff.
Knowledge of the LDLN post was good among hospital staff in the three hospitals where the LDLN had an on-site base. It was less widespread in trusts with community-based LDLNs, where the following quote comes from:
Interviewer:
Do you have any connection with the [LDLNs] at all?
P211, consultant physician:
Not that I’m aware of . . . There’s a Child Protection Officer and if it was an adult then clearly – I don’t know what I’d do actually – it’s an interesting point.
Approachability
The personal qualities and interpersonal skills of the LDLN post holders were important factors in their effectiveness and were commented on by many staff across study sites. When the researchers shadowed two of the hospital-based LDLNs, it was obvious that they were known, liked and trusted by hospital staff, and that staff recognised them immediately as being associated with patients with learning disabilities.
Availability
One of the key barriers to the LDLNs’ effectiveness was a lack of cover when the LDLN was absent. Many respondents mentioned the fact that they could not access the LDLN when needed. This lack of cover seemed to suggest a lack of recognition at board management level that the LDLN post was important to the organisation.
Senior management support
Learning disability liaison nurses who had direct and easy access to the (Deputy) Director of Nursing and were strongly supported in their role felt empowered and were able to perform well. This could include support for clinical decisions and implementation of specific adjustments to patient care. It was also reflected in the ease with which LDLNs could carry out their responsibilities, and the presence or absence of organisational barriers. One LDLN said:
For a while I wasn’t even included in the training programme. I had to do it ad hoc. I had to book my own rooms, I had to manage my own bookings.
P48, LDLN
The line management structure and lines of accountability for the LDLN post were important, not only for the support of the individual post holder but also for the implicit value placed on the role within the trust if the LDLN reported directly to a senior manager such as the Director of Nursing.
I’ve had no clinical supervision. I could be doing anything, I could do whatever I like, I could be absolutely rubbish and no-one would know. There’s a lot of lip service from the management but there is no understanding of my role and no support. It’s not valued internally.
P2, LDLN
Hospitals with strong management support for the LDLN role were more likely to have adopted a wider range of measures to improve the care and safety of patients with learning disabilities. This in itself was more likely to make the LDLN role effective. Senior management support for the LDLN role did not always seem to be embedded, but rather depended on the enthusiasm of individual senior managers or on how ‘high profile’ the issue of patient safety for people with learning disabilities was perceived to be.
Is appointing a learning disability liaison nurse the solution?
Based on the findings reported in this chapter, it may be tempting to see the implementation of hospital-based LDLN posts across NHS hospitals as a solution to the issue of compromised safety for patients with learning disabilities. Indeed, the evidence suggests that without such a role, it is much harder for NHS hospitals to achieve safer practice.
However, such roles cannot be seen as a quick or easy solution to the problem. Implementing the LDLN role ensures access to essential learning disability expertise, but without sufficient cover and without ongoing structural support and accountability for learning disability issues throughout the organisation, this is unlikely to have a sustainable impact. One LDLN clearly cannot achieve organisational change in isolation. Therefore, senior management support for the role has to be embedded within the hospital structures. This includes ensuring that there is sufficient cover and that the role carries sufficient authority and seniority.
This appeared to be the case at one study site, where the issue of learning disability seemed to be ‘owned’ by a much wider group of matrons and senior managers in liaison with the LDLN. There were regular learning disability meetings attended by senior clinical staff, annual trust-wide learning disability training days and clear lines of senior management support for the LDLN, who felt empowered by this support. This particular trust had set up systems for learning from poor practice. Conversely, the LDLN at another hospital reported that, since the departure of a highly supportive Director of Nursing, support for her post from senior management seemed to have waned; this LDLN felt disempowered and frustrated.
There was a sense at some study sites that any questions and difficulties related to learning disabilities were the remit of the LDLN only. If the LDLN was absent at such sites, it was difficult for the research team to obtain answers to questions, and some LDLNs felt that there was a lack of accountability for their work within the hospital structures. It also seemed notable that a role that was hailed as ‘wonderful’ and ‘important’ by staff throughout the hospital (including senior managers) would be left without effective cover for absence, or even be at risk of being discontinued.
