All healthcare organisations, including the Department of Health, should ensure that they collect the data and information necessary to allow people with learning disability to be identified by the health service and their pathways of care tracked.
Recommendation 2 (p. 11).4 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
Chapter summary
Most patients with learning disabilities remain invisible within the health-care system. The majority of patients with learning disabilities enter NHS hospitals without being identified as such. To various degrees, the hospitals in this study failed to identify patients with learning disabilities at the point of entry into the health-care system or during their patient journey. Hospital-based LDLNs were best able to provide lists and numbers of patients with learning disabilities who had used the hospital service, but even these were not comprehensive, with particular difficulties in identifying learning disabilities in outpatients. The failure to identify this patient population was due to:
a lack of patient record systems integrated with those of other NHS services, including primary care
a lack of effective flagging systems within the hospitals
a lack of staff knowledge and skill in identifying the presence of learning disability, leading to both underdiagnosis and misdiagnosis of learning disability
widespread staff reluctance to record the presence of learning disabilities in a routine and systematic way. There was a lack of understanding of the need for identifying learning disability, a fear of putting a negative label on people and a reluctance to ‘ask the question’.
The barriers and enablers that have emerged in this study in relation to identifying patients with learning disabilities in NHS hospitals are summarised in an empirical subframework ().
Empirical subframework: barriers and enablers in relation to identifying patients with learning disabilities in NHS hospitals.
Identifying, flagging and tracking patients
There are two main reasons why health-care organisations should identify patients with learning disabilities: firstly, they need to be able to monitor their compliance with equality legislation, and secondly, if they are to implement adequate reasonable adjustments for people with learning disabilities, they need to be able to identify who needs them.
The importance of tracking patient care pathways is evident from the results presented in Chapter 6, which demonstrate the sometimes complex reasonable adjustments required by patients with learning disabilities. These may involve more than one ward or clinic (for example, a need to fast-track patients to a suitable ward environment or to limit the number of ward changes). Furthermore, people with learning disabilities are highly likely to have multiple medical conditions (CIPOLD found that 98% of people with learning disabilities had at least one long-term health condition or treatable medical condition, with a median of five conditions per person). This means that the co-ordination of care for people with learning disabilities is particularly important, and tracking the care pathway is part of this.
It is useful to differentiate between ‘identifying’, ‘flagging’ and ‘tracking’ patients with learning disabilities.
Identifying refers to the way in which the hospital and individual staff members recognise that a patient has learning disabilities. This could be through formal notification systems, or informally through handovers, GP letters, or through staff suspecting or noticing the presence of learning disability.
Flagging refers to a formal notification that the patient has learning disabilities. This can be done by adding a ‘flag’ or other notification to electronic patient records; using a system of marking patient notes (for example, using a coloured sticker); adding a mark against the patient’s name as displayed on the ward; having the patient carry a specific personalised information document; or through records kept by staff with specific responsibility for patients with learning disabilities (such as the LDLN).
Tracking refers to systems for monitoring the patient’s care pathway within the organisation, and the organisation’s ability to know where the patient is in their hospital trajectory at any given time. This ability is likely to depend on the presence of effective flagging systems.
These descriptions have emerged from reflections on the data. It has become clear that an organisation’s ability to monitor its overall performance in relation to patients with learning disabilities, including its compliance with equality legislation and the legal duty to provide reasonable adjustments, depends on the presence of effective flagging systems which retain information about current and prior users of the service. However, in order to identify and implement the necessary reasonable adjustments, simply flagging the patient is not sufficient; patients need to be identified by staff as having learning disabilities. It is possible to identify patients with learning disabilities (and put the necessary adjustments in place) without flagging them, but this is likely to lead to inconsistencies and a dependence on individual staff and teams. It is also possible to flag patients with learning disabilities without hospital staff identifying them as such, which may result in inadequate or absent reasonable adjustments.
Sometimes patients with learning disabilities are highlighted post admission through the clinical coding system. The real risk of miscoding43 and the fact that such flagging has no effect on the patient journey make this an inadequate method of identifying patients with learning disabilities.
How did the hospitals identify, flag and track patients with learning disabilities?
Policies, procedures and systems
Electronic flags
The participating hospital trusts used a variety of electronic patient record systems. Three hospitals were able to put a flag or alert on the patient’s electronic records to signal that the patient had learning disabilities; two were in the process of developing this possibility. These electronic systems relied on someone putting the flag on within the acute trust and often lacked integration with other systems in primary and secondary care. One hospital trust had tried to identify the local population of people with learning disabilities in order to enter the information proactively on the electronic hospital records, which had involved a laborious and inefficient process of writing to all patients identified by a local learning disability charity to obtain their consent. Towards the end of stage II, the trust had tried to overcome this problem by implementing a new flagging system where the need for specific reasonable adjustments was flagged, rather than the presence of learning disabilities.
Learning disability liaison nurse-kept records
Learning disability liaison nurses kept paper-based or electronic lists of patients with learning disabilities referred to them. Several trusts used this system as the principal way of knowing which patients had learning disabilities.
Ward checks
One trust had implemented a system whereby the bed manager visited each ward daily and specifically asked the ward managers whether or not any patients had learning disabilities; if so, details were passed on to the LDLN. Hospital-based LDLNs occasionally walked around the wards to see if they could ‘find’ any patients with learning disabilities, and found patients this way that had not been referred to them by staff.
If I found someone on the wards – ‘Well you didn’t tell me, why didn’t you tell me? They’ve clearly got Down syndrome.’
P9, LDLN
Identifying patients
Learning disability liaison nurses were often called upon by staff to assess whether or not a patient with suspected learning disabilities did indeed have learning disabilities. It was noted by the LDLNs that they were regularly called inappropriately to see patients who did not have learning disabilities but some other condition, such as mental health problems.
Tracking patients
Hospitals that were best able to track the care pathways of any patients with learning disabilities who had been identified through the hospital’s flagging systems were those that had allocated such responsibility to either the LDLN or a senior nurse manager, such as a matron or safeguarding lead. This member of staff would then make contact with the ward managers or clinical areas and follow the patient through the hospital system. Without such allocation of responsibility, hospitals were not able to track the patient’s hospital pathway in a meaningful way.
How effectively could study sites identify, flag and track patients with learning disabilities?
The collaborators were asked to provide the research team with the following data: numbers of patients with learning disabilities using the health-care service during the 12 months of stage II; which wards the patients were admitted to; lengths of stay; and numbers of readmissions within 7 days of discharge.
None of the hospital sites could provide the research team with comprehensive information. Three trusts could not provide any usable data. Two of these provided numbers obtained from clinical coding, which does not constitute identification of the patient during their hospital contact and is unreliable because of the high risk of miscoding.43
Electronic systems, where used, were far from comprehensive or reliable, and there was evidence of patients with known learning disabilities not being identified in this way. At one trust, an intensive audit of inpatients with learning disabilities (which involved checking electronic flags as well as daily ward rounds to try and ‘find’ patients with learning disabilities) revealed only three such patients in three weeks.
We have a flagging system for identifying people with a learning disability . . . that can only be put on when a patient comes in. We recently did an audit and found that . . . we couldn’t find anyone within the trust with a flag on their computer records when there WERE people with learning disabilities.
P61, matron
The most comprehensive records came from the hospital-based LDLNs, who could give concrete numbers of patients with learning disabilities referred to their service and demonstrated that they were able to both flag and track patients with learning disabilities through their own recording systems. However, all LDLNs observed that their systems were limited by a reliance on hospital staff to refer patients to them, and by the fact that most patients with learning disabilities come into hospital without a notification of their learning disabilities. They particularly noted their inadequacy in identifying or flagging outpatients.
How did staff identify patients with learning disabilities?
shows staff response to the question of whether or not they are routinely informed of a patient’s learning disabilities. Less than 8% of all staff stated that they are rarely or never informed. This figure is 2.8% for inpatient staff but rises to 17.3% for outpatient staff.
‘If a patient in your care has learning disabilities, are you routinely informed of this?’ Responses to staff survey question 6 [n = 783 (includes those who answered both survey question 6, ‘If a patient in your (more...)
shows staff response to the question of how they usually find out that a patient has learning disabilities. This shows that the majority of staff did not identify the presence of learning disability through formal flagging systems, but rather through information obtained from colleagues within and outside the organisation (handovers and referral letters) or through direct assessment of the patient.
‘How do you find out that a patient in your care has learning disabilities?’ Responses to staff survey question 7 (n = 987).
shows to what extent staff felt that they had been given sufficient background information about patients with learning disabilities to care for them in the best way. Although 69% of respondents (631 out of 915) felt that they were always or usually given sufficient clinical information, only 39.2% (359 out of 915) felt this way about information on the patient’s personal preferences.
‘Are you given sufficient background information to enable you to care for patients with learning disabilities in the best way?’ Responses to staff survey question 8 (n = 915).
Several hospital trusts reported that one way of identifying or flagging patients with learning disabilities was through the use of special patient-held information documents which are owned and updated by people with learning disabilities and their carers to provide detail about important aspects of a person’s medical, nursing, social and emotional care needs. Patients and their carers are encouraged to bring these documents into hospital so that staff can use the information provided to modify and personalise their care of the patient (and hence make reasonable adjustments). These information documents have been given a variety of names, for example ‘patient passport’, ‘hospital passport’, ‘health action plan’ and ‘About Me book’.103,104
The evidence from this study is that patient-held information documents are not a reliable way of identifying patients with learning disabilities. Patients do not always bring them in, particularly if the hospital admission is unplanned. Furthermore, many staff were unaware of such documents: although patient-held information documents had been introduced at all study sites, 61.1% of staff (601 out of 984) answered ‘no’ or ‘not sure’ to the question of whether or not their hospital used special patient-held information for people with learning disabilities (survey question 9).
Barriers to identifying patients with learning disabilities
It is clear that systems for identifying patients with learning disabilities are currently inadequate. Three key barriers were identified: lack of effective systems; lack of staff knowledge; and staff reluctance to flag patients with learning disabilities. There were also suggestions from staff that some people with learning disabilities may not want to be identified, although there was no evidence of this in the study sample of people with learning disabilities.
Lack of effective systems
The lack of effective systems for identifying people with learning disabilities stretches across and beyond organisations. The most significant barrier is the fact that the vast majority of people with learning disabilities (79%) have never been identified as such within any health or social care service system, and will therefore remain invisible within the hospital unless a system is implemented for screening and identifying this patient population.43 Such screening systems are currently lacking, although LDLNs reported that they do occasionally get asked to assess patients with suspected learning disability. However, most unidentified patients will have mild to moderate learning disabilities, which are less likely to be suspected by staff.
Hospitals were further limited by a cross-organisational lack of integrated patient records. Over half of the respondents to the staff questionnaire (51.7%, 417 out of 815) said that they find out that a patient has learning disabilities from a medical referral letter; this rises to 78.4% (109 out of 139) for medical staff. Yet interview data and free-text questionnaire data showed that relevant information about learning disabilities is often not passed on by GPs. As a result, the hospital was not always aware of known learning disability, even for planned admissions or outpatient appointments.
Frequently when booking appointments, we are not informed that patients have learning disabilities and doctors will request [magnetic resonance imaging] scans which when the patient arrives to have, it is immediately clearly completely inadequate for such a patient to be able to cope with the scan requested and therefore has to be abandoned . . . Were it to be made known to the imaging staff that the patient had learning disabilities, allowances could have been made before the time of the appointment to cater for them.
P300, radiographer
Within some organisations, there was a lack of adequate electronic flagging systems, although those organisations were in the process of implementing such systems. Senior hospital managers noted the difficulties of correctly identifying the presence of learning disability. This raised questions about who could or should put the flags on. It was also frequently observed by managers at all trusts that the presence of a flag for learning disability is no guarantee that staff know what the implications of this are, causing them to doubt the benefit of such flags.
The lack of effective flagging systems made it difficult for LDLNs to ensure patients with learning disabilities received adequate support.
The only database is the one I keep and that’s relying on hospital staff informing me that the patient comes in. So I can’t go into a computer today and see how many learning disability patients are on these premises. I was at outpatients this morning and that’s only because the patient phoned me and told me they were coming and that they would like me to attend their clinic with them that I was there. Otherwise I wouldn’t know where any of my patients are.
P1272, LDLN
The lack of integrated flagging systems was not entirely cross-organisational. In one trust, patients with learning disabilities were flagged in A&E but this flag did not follow them through the hospital.
Lack of staff knowledge
As most patients with learning disabilities have never been identified as such,8 and many people with known learning disabilities who enter the health-care system are not flagged, whether or not they are identified as vulnerable patients in need of reasonable adjustments will depend on the ability of hospital staff to identify the presence of learning disabilities. There is strong evidence in this study that hospital staff lack the knowledge and skill to do so.
During the staff interviews, some staff demonstrated good understanding of what learning disabilities were, but this was not universal. Some staff gave examples of patients with dementia or dyslexia when asked about patients with learning disabilities. Even some senior nurses and consultants were not clear about what groups of patients fall within the definition. Most doctors and nurses admitted that they would find it extremely difficult to know whether or not a patient had mild learning disabilities, and they were therefore reluctant to consider undertaking the task of identifying learning disability.
Whereas with dementia [my colleagues] and I are very used to going along and making a new diagnosis, we would be feeling very, very uncomfortable on how to make a diagnosis of learning disability in someone who just passes through our system for the three weeks in their entire life.
P1249, consultant physician
I wouldn’t feel confident in actually saying that person has, and that person hasn’t.
P52, ward manager
Staff reluctance
Although senior managers understood the need for flagging in principle, there was a strong feeling of reluctance to flag patients with learning disabilities which pervaded all levels within the organisation, from the most senior hospital managers to junior ward staff. There were three main reasons for this, as follows.
A lack of understanding that identifying patients with learning disabilities is necessary
There was an underlying lack of staff understanding that patients with learning disabilities are at risk and in need of specific attention and adjustments. A common theme across staff interviews was the notion that all patients should be seen and treated as individuals, and that identifying ‘learning disability’ would not lead to care that was different or better suited to their needs.
Interviewer:
If you found out that a patient has a learning disability, is it compulsory on this ward for you to record it anywhere?
P25, staff nurse:
I don’t know . . . I don’t see how it would affect their nursing – how we give them their care. It wouldn’t make any difference if they’ve got a learning disability or not.
I don’t want patients with learning disabilities to have that title and a great big sticker put on them to say, ‘I’m a patient with learning disabilities, treat me very differently’ because I don’t want them to be treated very differently, I want them all to be treated as patients with individual needs.
P94, Director of Nursing
Concern about ‘labelling’ the patient
Many staff worried that any formal identification of the patient’s learning disabilities would lead to the patient being ‘put in a pigeon hole’. There was concern that this would lead to the patient receiving worse, not better, care due to potential negative staff attitudes towards learning disability; or that it would lead to staff making wrong assumptions about the patient’s abilities and needs.
If they are functioning quite well outside who am I to give them that label and say ‘Learning Disability’, because quite often there can be that stigma to it as well.
P211, consultant physician
I have to question why are we labelling people, whether it’s with a learning disability or with diabetes or with dementia – what is the purpose of us knowing?
P1270, Deputy Director of Nursing
Reluctance to ask the patient about their learning disabilities
Many nurses said that whereas noting severe and profound learning disabilities might be fairly straightforward, the picture was complicated if learning disabilities were mild. They were reluctant to ask the patient in case the question was insulting.
People can look very childlike and if people aren’t telling you they have a learning disability on arrival you’re not going to be judgemental and just say, ‘Look, you appear slow to me’. You’re not going to have that conversation. You’re going to treat them like you would anyone else.
P28, ward manager
Barriers to tracking patient care pathways
Although LDLNs in particular were good at tracking the hospital care pathways of patients with learning disabilities, there was a lack of organisational systems to ensure that all known patients with learning disabilities had their pathways tracked and their care co-ordinated. There was no effective cover for LDLN absence, for example (see also Chapter 9). In the absence of effective flagging systems and a general lack of staff understanding that flagging or tracking pathways might be important, it seemed that senior nurses who had been allocated responsibility for overseeing the care of patients with learning disabilities (such as matrons) were much less likely to be reliably informed about the presence of such patients within the hospital and to be able to track their hospital pathways.
Patient and carer views
Carers
Carers showed overwhelming support for the principle that patients with learning disabilities should be identified and flagged by the hospital. They recognised the need for adjusted health-care services and felt strongly that recording and noting information about learning disability was an important first step.
I think it should be on a computer system. Or maybe a note on her notes. I understand that some people might not want to be labelled in that way, but if there is some sort of note on the system, that could lead staff to having a quiet word with the family to find out more. I don’t think anyone would mind that.
P89, family carer
Patients
All study participants with learning disabilities who expressed their opinion on this issue were supportive of flagging the presence of learning disability within the hospital. It must be noted, however, that all people with learning disabilities interviewed for this study were self-selected. They had taken an active step to contact the research team or attend an open day. They therefore clearly identified themselves as having learning disabilities, and were probably less likely to oppose the notion of having their learning disability identified and flagged.
I think staff should be made aware of it so that they know and then they know how to deal with it.
P114, person with learning disabilities
![FIGURE 3. ‘If a patient in your care has learning disabilities, are you routinely informed of this?’ Responses to staff survey question 6 [n = 783 (includes those who answered both survey question 6, ‘If a patient in your care has learning disabilities, are you routinely informed of this?’ and survey question 26, ‘Which clinical setting do you mostly work in?’)].](/books/NBK259495/bin/10-1007-22-fig3.gif)
