Caring for adults with a learning disability in acute hospitals

The aim of this report is to help improve the inpatient care of adults with a known learning disability in acute hospital settings. A person with a learning disability has a reduced ability to understand new or complex information, learn new skills and live independently. In the UK, it is estimated that approximately 2% of adults have a learning disability. Providing equitable care to people with a learning disability is a priority for the NHS.

Health and care services are required to identify and record the specific needs of each person with a learning disability and any ‘reasonable adjustments’ they require, so they can be cared for safely and effectively. Reasonable adjustments are changes made by organisations to make it as easy for people with a disability to use services as it is for people who do not have a disability.

As an example, which is referred to as ‘the reference event’, HSSIB investigated the care of a man with a learning disability who was admitted to hospital because of worsening health. Throughout the patient’s stay, his individual needs were not always identified and reasonable adjustments to meet his care needs were not always made.

The reference event found a range of factors within the health and care system that may have influenced identifying the patient’s needs and providing reasonable adjustments to meet these needs. These related to: identifying, assessing, recording and sharing information about the patient’s learning disability and the reasonable adjustments he needed; supporting staff without specialist skills or experience in working with people with a learning disability; and the availability of support from a learning disability specialist in the hospital.

An investigation was undertaken to explore the factors affecting:

• the sharing of information about people with a learning disability and their reasonable adjustment needs following admission to an acute hospital
• how ward-based staff are supported to deliver person-centred care to people with a learning disability.

The investigation engaged with: people with lived experience; 10 acute hospitals with acute learning disability liaison services; a provider of specialist learning disability services; experts in learning disability; safeguarding and mental capacity staff; and national bodies that influence policy and strategy within the NHS (such as government departments and national charities).

• The health and care system is not always designed to effectively care for people with a learning disability.
• People with a learning disability who are admitted to an acute hospital are often cared for by staff without specialist training, skills and experience in working with people with a learning disability. These staff often have limited support and are unable to take the time they would like to meet the person’s needs.
• There is no standard model or national guidance for an acute learning disability liaison service (that is, teams that are specifically trained in caring for people with a learning disability). Consequently, there is variation in how these services are funded, their availability, the size of teams and what they are expected to do.
• The quality of learning disability services is currently monitored via the learning disability improvement standards annual benchmarking survey which is funded until the end of 2023/24. Decisions on future years have yet to be made.
• Staff in acute hospitals may lack confidence and support in assessing the mental capacity of people with a learning disability, in line with the Mental Capacity Act (2005).
• There is no national shared system with a single point of access for storing and managing information about the needs of people with a learning disability and the reasonable adjustments required for each individual.
• Current mechanisms for sharing information about a person – such as ‘care passports’ (a document that gives staff helpful information about the person’s health and social needs, including their preferred method of communication, likes and dislikes) and alert flags (a way to highlight key information to staff) on the electronic patient record – can be unreliable. Instead, information is often gathered from friends and family.
• Evidence exists that people with a learning disability experience health inequities. Long-held societal beliefs about the abilities of people with a learning disability may influence the provision of and decisions made around their care.

HSSIB makes the following safety recommendations

Definition of a learning disability

1.1.1 The Department of Health and Social Care (2001) defines a learning disability as including:

• a significantly reduced ability to understand new or complex information, and to learn new skills (impaired intelligence)
• together with a reduced ability to cope independently (impaired social functioning)
• and which started before adulthood, with a lasting effect on development.

1.1.2 Every person with a learning disability is different and the effects can range from mild to profound. A learning disability is a lifelong condition that is neither an illness nor a disease. It results from the effects of various factors on the brain when it is developing (Department of Health and Social Care, 2023). A learning disability is different to a learning difficulty, such as dyslexia, ‘as a learning difficulty does not affect general intellect’ (Mencap, n.d.a).

1.1.3 In the UK, approximately 2% of adults are believed to have a learning disability. This equates to 951,000 adults in England (Mencap, n.d.b). However, it is thought that many of these individuals are not registered with services to enable this information to be captured. People who are known to health and care services often have a more significant learning disability (Department of Health and Social Care, 2023a).

Health of people with a learning disability

1.1.4 A learning disability annual health check is recommended for all people with a learning disability aged 14 years and over, to enable health problems to be found and treated early. This allows for any reasonable adjustments (see section 1.2.7) to be identified and planned (NHS, 2022a). People with a learning disability often have other challenges, such as multiple health conditions (Kinnear et al, 2018), sensory (sight and hearing), walking and posture problems, and communication difficulties (Royal College of Physicians, 2022). An inquiry into premature deaths of people with a learning disability (commissioned by the Department of Health) found that these individuals are at increased risk of dying early, compared with people with similar health problems who do not have a learning disability (Heslop et al, 2014). Dying early is not something that always happens because a person has a learning disability. Many of these premature deaths have been shown to be avoidable (Heslop et al, 2014; University of Bristol Norah Fry Centre for Disability Studies, 2017).

1.1.5 The differences in outcomes between people with a learning disability and people without highlight 'health inequalities' that have continued to be shown in the ‘Learning from Lives and Deaths – People with a Learning Disability and Autistic People’ (LeDeR) programme (previously the Learning Disabilities Mortality Review programme). LeDeR uses a standardised review process to look at the health and care support that the person received throughout their life, to identify any care that could have been better as well as good practice. The aim of the LeDeR programme is to improve the health of people with a learning disability and reduce health inequalities (NHS England, n.d.a). Integrated care boards (ICBs) ‘are responsible for ensuring that LeDeR reviews are completed’ (NHS England, n.d.b).

1.2.1 The care of people with a learning disability has evolved over time, with a move away from the ‘medical’ to a ‘social’ model. ‘The social model says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives’ (Disability Nottinghamshire, n.d.). By addressing those attitudes and providing support for people with a disability, the aim is for those people to take part in society in the same way as people without a disability – that is, without discrimination.

1.2.2 The NHS Long Term Plan commits to improving outcomes for people with a learning disability (NHS England, 2019). A person-centred approach is important when delivering care to people with a learning disability, which means that care should be tailored to the individual’s needs, strengths and preferences (National Institute for Health and Care Excellence, 2018a).

National learning disability improvement standards

1.2.3 In 2018, [the former] NHS Improvement launched a set of ‘learning disability improvement standards’. The standards that apply to acute hospitals relate to: respecting and protecting rights, inclusion and engagement, and the workforce. This prompted hospital trusts to measure their performance and plan improvements to the inpatient experience and care outcomes of people with a learning disability during the 5-year quality improvement programme (NHS Improvement, 2018). Hospitals are required to review their performance against the standards as part of the NHS standard contract (NHS England, 2022). The NHS Long Term Plan states that by 2023/24 the standards will apply to all services funded by the NHS (NHS England, 2019).

1.2.4 The NHS Benchmarking Network was commissioned to conduct annual surveys of hospital trusts during the 5-year quality improvement programme. In these voluntary surveys, management, staff and patients of NHS trusts are asked questions about whether the trusts meet the standards. Survey results are shared with the trusts to enable improvements, and are collated in national reports for wider learning (NHS Benchmarking Network, n.d.).

Ensuring equality in care

1.2.5 The Equality Act (2010) requires public services to anticipate and prevent discrimination against people with a disability. Many people with a learning disability have support and communication needs that, if unmet, will put them at a disadvantage when accessing and receiving health and care. This means they are unlikely to have the same health outcomes as people without a learning disability.

1.2.6 The Accessible Information Standard (NHS England, 2017) aims to ensure that people with a disability, impairment or sensory loss get information that they can access and understand, and any communication support that they need from health and care services. It came into force by law, in 2016 (NHS England, 2017).

1.2.7 Reasonable adjustments are a way of making it as easy for people with a disability, their family and their carers to access and receive health and care services as it is for people without a disability (NHS England, n.d.c). A tool to think through the reasonable adjustments that may apply is shown in figure 1.

Figure 1 TEACH tool to help with reasonable adjustments (Royal College of Physicians, 2022)

1.3.1 When a person with a learning disability is admitted to hospital, information about their needs and reasonable adjustments can be obtained from sources such as their family, carers, a care passport, GP records and learning disability specialist nurses (Royal College of Physicians, 2022). In healthcare record systems, alerts are also used so that staff can identify people with additional needs, such as a learning disability, and provide them with accessible information, and any reasonable adjustments.

1.3.2 A care passport is a paper based or digital document that gives staff helpful information about a person’s health and social needs, including their preferred method of communication, likes and dislikes. The passport guides staff on the best way to support the person when they come to hospital. The passport is held and maintained by the person with a learning disability and those who support them. It is known by a variety of names, including hospital passport, health passport, patient passport, healthcare passport, ‘My Care Passport’, ‘About Me’ and the ‘All About Me’ booklet. This report uses the term ‘care passport’ throughout.

The role of learning disability specialist staff

1.3.3 The National Institute for Health and Care Excellence (2018a) advises that trusts should have ‘at least 1 member of staff’ with specific knowledge and skills in caring for people with a learning disability who ‘acts as a champion, modelling and sharing good practice’. This staff member should be supported by senior leadership (Mencap, 2012), and may be referred to as the ‘acute learning disability liaison nurse’.

1.3.4 This staff member may be part of an acute learning disability liaison service, which will provide specialist advice and support for people with a learning disability, their family and carers, and hospital staff to ensure each person gets the care they need. This service will also help co-ordinate care between the hospital and other health and care providers. The service is often led by an acute learning disability liaison nurse who is a registered learning disability nurse, a registered mental health nurse or a registered general nurse with extensive learning disability experience. Staff working in the liaison service may come from other professional backgrounds, for example physiotherapy.

1.3.5 Research has shown the benefits of having a liaison service and highlighted how it enables people to receive reasonably adjusted care (Castles et al, 2014; MacArthur et al, 2015). These benefits have also been shown through the learning disability improvement standards surveys (see sections 4.4.8 and 4.4.9) and LeDeR reports (The Institute of Psychiatry, Psychology and Neuroscience, 2022).

Staff knowledge and skills

1.3.6 Employers are required to ensure staff have the required knowledge and skills to meet the needs of people using the service at all times (Care Quality Commission, 2022a). The ‘Core capabilities framework for supporting people with a learning disability’ describes the skills, knowledge and behaviours required by health and care staff (Skills for Health et al, 2019).

1.3.7 The Health and Care Act (2022) mandates that registered health and care providers (that is, all hospitals and social care services, among others) ensure all staff have received training on learning disability that is appropriate to their role. At the time of writing, a public consultation is underway on the Oliver McGowan draft code of practice on statutory learning disability and autism training (Department of Health and Social Care, 2023b). This sets out the standards that the training must meet to comply with the Health and Care Act (2022) and guidance on how organisations can meet the standards.

1.3.8 The Oliver McGowan Mandatory Training on Learning Disability and Autism is standardised training that is ‘the government's preferred and recommended training’ (Health Education England, 2023). This training was co-produced and is co-delivered by people with a learning disability, and has been piloted and evaluated (National Development Team for Inclusion, 2022a). When fully implemented, it will be available at two levels: general awareness training, and a higher level for staff who may need to provide care and support to people with a learning disability. At the time of writing, the initial e-learning module was widely available and the workforce was being trained to deliver the second interactive training.

Assessing mental capacity and seeking consent

1.3.9 Mental capacity refers to the ability of a person to make a specific decision when they need to. Capacity involves understanding information around a decision, remembering that information, using that information to make a decision and communicating that choice (NHS, 2022b). Capacity is not fixed and can change over time, and with the question being asked. So a person may have capacity to make a decision on one thing, but not another – and they may have capacity one day, but not the next hour or day (NHS, 2022b).

1.3.10 The Mental Capacity Act (2005) requires that people who may lack capacity to make a decision on their own are given the support they need to make that decision (Mencap, n.d.c). People may lack capacity for many reasons, including dementia or a brain injury. People with a learning disability may sometimes have difficulty making decisions, including decisions about receiving certain types of healthcare.

1.3.11 Health and care staff should presume that a person has the capacity to make decisions. However, in some circumstances staff may be concerned that a person is unable to decide on something for themselves. In these situations, the Mental Capacity Act (2005) describes the need to assess a person’s capacity via answering the following questions (Bishop and Spencer-Lane, 2019):

• Is the person unable to make a decision?
• Is there an impairment or disturbance of mind or brain?
• Is this inability because of the identified impairment or disturbance?

A person should not be treated as ‘unable to make a decision unless all practicable steps to help them to do so have been taken without success’ (Mental Capacity Act, 2005). Supported decision-making requires health and care staff: to build a collaborative and trusting relationship with the person; understand what is involved in a particular decision; and consider what aspects of decision-making a person may need support with, and why (National Institute for Health and Care Excellence, 2018). For example, ensuring that staff communicate with a person in a way that is meaningful for them and takes account of their communication needs (such as sign language or hearing aids).

1.3.12 The Mental Capacity Act (2005) allows a decision to made in a person’s ‘best interest’ if all the following apply:

• All practical steps to help that person make the decision at the time it is needed have failed.
• The person has been assessed as lacking capacity in relation to the decision.
• Staff have tried but been unable to find someone who knows the person well who could help make that decision.
• There is no one else who can legally consent for that person.

This should be a ‘least restrictive’ approach (which means that which least interferes with the person’s basic rights and freedoms) and take into account the person’s previously documented decisions (NHS, 2021).

2.1.1 The patient was a 79-year-old retired man who was recorded on his GP’s learning disability register as having a mild learning disability. This means that he was likely to be able to ‘manage basic self-care, domestic, and practical activities, and can live and work relatively independently, but may require appropriate support’ (World Health Organization, 2022).

2.1.2 The patient lived in a flat and had 10 hours a week support from a social care provider for shopping and social reasons. He wore hearing aids in both ears, had a speech impediment, did not read or write, and had limited vocabulary. Staff from the social care provider described him as “very private”, untrusting of people he did not know and “very set in his ways”. The patient’s GP record noted that he had not attended health appointments in the last 5 years and had not agreed to have blood tests.

2.1.3 Since the start of the COVID-19 pandemic and the restrictions imposed by lockdown, the patient’s mobility had declined. He had deteriorated physically quite rapidly before he was admitted to hospital in the summer of 2021. He was also receiving support for his personal care as he was no longer able to care for himself.

Events leading up to hospital admission

2.2.1 Eighteen days before he was admitted to the acute hospital, the patient’s social care provider contacted his GP with concerns about the state of the patient’s feet and lower legs. The GP prescribed antibiotics for cellulitis (a skin infection). Prior to hospital admission, the social care provider also noted that ‘his hearing aids don’t work or fit very well’ and the GP practice had referred the patient to the hearing aid service.

2.2.2 On the day that the patient was admitted to hospital, an occupational therapist (OT) reviewed the patient at home and referred him to the GP for declining health. The OT documented that the referral was a ‘Best interest decision made of behalf of the patient’ under the Mental Capacity Act (2005) (see sections 1.3.9 to 1.3.12). Later that day, the GP made arrangements for the patient to be transferred to hospital via ambulance.

Admission to hospital – acute medical unit

2.2.3 The patient was admitted to the acute medical unit late on a Thursday evening (day 1). It was noted on the hospital admission referral form that the patient had a mild learning disability, hearing loss, previous heart problems and ‘refuses bloods!’ The GP referral letter described the reasons for admission as ‘Deterioration over past week, cellulitis of legs, chest infection, increased confusion with dehydration.’ The letter noted the patient’s learning disability, hearing loss and cleft palate (when a person is born with a gap or split along the roof of their mouth, leading to speech problems).

2.2.4 In the early hours of day 2 (Friday), the admitting doctor examined the patient and made a provisional diagnosis of cellulitis with confusion. The plan for the patient included blood tests, pain relief and intravenous fluids. The patient had a blood test and the results showed no abnormal findings, except for a raised creatinine level (indicating problems with kidney function). A doctor noted in the clinical record that the patient may have acute kidney injury (where the kidneys suddenly stop working) based on the high creatinine result.

2.2.5 The patient was reviewed by a consultant on the morning of day 2 and a diagnosis of cellulitis was made. The plan was for oral antibiotics, physiotherapy and an OT assessment, followed by discharge if appropriate. ‘No history from patient’ was documented in the clinical record.

2.2.6 The patient was seen by an OT and a physiotherapist, who documented that the patient was ‘unable to give verbal consent [but] consented to therapy input by smiling when asked if we could see him’. They also documented that the patient’s severe speech impediment ‘made it difficult to understand [what he was] trying to say’. One of the patient’s hearing aids was cleaned and fitted in his ear, after which he appeared to hear what was said. It was noted that he was ‘very anxious’ and ‘struggled to follow verbal instructions’. The OT phoned the learning disability specialist nurse, but they were on annual leave until the following Monday.

2.2.7 On day 3 (Saturday), the physiotherapy entry in the clinical record stated that the patient’s hearing aid was ‘in pieces’ in his pocket. The physiotherapist was able to ‘put [it] back’ together and helped the patient fit it. The patient further said ‘“no” very clearly’ to the physiotherapist when they were seeking to provide care. The patient was further documented to have declined physiotherapy on day 4.

2.2.8 On the morning of day 5 (Monday), the patient was referred to the learning disability specialist nurse who visited the patient with a therapist for a joint review. The specialist nurse contacted the patient’s social care provider to gather background information on the patient and documented this in the patient’s record. The specialist nurse agreed that further assessment and planning were needed before the patient could be discharged.

Over the next 7 days

2.2.9 The patient received ongoing care, but there were multiple unsuccessful attempts to take further blood samples to monitor his progress, as documented in the clinical notes (‘refused to be bled’, ‘not cooperating’). It was noted that the patient became ‘irritable’ and ‘agitated’, and despite ‘explanation of the rationale [he] still refused’.

2.2.10 With a lot of encouragement, the patient sometimes agreed to physiotherapy. At times the patient was recorded to have become distressed while care was being provided, at which point he was reassured and the reasons for the treatment were explained. When initial attempts to engage the patient were unsuccessful, staff sought support from the learning disability specialist nurse.

2.2.11 Communication was problematic as the patient’s hearing aid was documented as ‘not working properly’ and his voice was ‘very hard to understand’. The learning disability specialist nurse referred the patient for new hearing aids on day 6 and in the interim explored other ways that they might support his communication needs. The one hearing aid that he had taken into hospital was lost, so the audiology department (the department that deals with hearing disorders) made plans for new ear moulds (the plastic piece that is shaped to the inside of a person’s ear) to be taken and new hearing aids ordered. This process was delayed by rescheduling of audiology input due to the patient having to move wards following contact with another patient with confirmed COVID-19; there was also confusion about the need to remove wax from the patient’s ears and whose role this was.

2.2.12 The patient was transferred from the acute medical unit to a healthcare of the older person ward, and then to a further ward. The further transfer was a result of being in contact with a patient with confirmed COVID-19 on the healthcare of the older person ward. On the further ward, the patient was cared for in a ward bay with other patients who had been exposed to COVID-19.

2.2.13 During this 7 day period there was a query in the medical records that the patient ‘may lack capacity on account of his learning difficulties’. On day 12 (Monday) the learning disability specialist nurse noted that when trying to explain the need for a blood sample, he ‘got cross.’ This nurse documented that it was ‘very difficult to assess capacity but given his poor understanding of the situation and weighing up the risk of deterioration should he not get the treatment he needs I would certainly say he lacks capacity’. Later on day 12, the physiotherapy team again visited the patient but were unable to gain consent for treatment. They described him as ‘not showing signs of wanting to engage’, but that it appeared he was ‘not fully understanding of what was being asked by the therapist’.

The patient’s deterioration

2.2.14 On day 13 (Tuesday), the patient was again seen by a consultant on the ward round. The plan was to take bloods to monitor his progress and the patient ‘indicated’ that staff could take a blood sample, following explanation by the medical team. Ten minutes after the ward round the patient was approached for bloods to be taken, but ‘refused’ and ‘withdrew his arms away’.

2.2.15 During the afternoon, a doctor specialising in care of the older person and the learning disability specialist nurse reviewed the patient because he had low oxygen levels in his blood, as measured using a pulse oximeter (a small device that is briefly attached to a person’s finger). With support from the ward sister and specialist nurse, the doctor was able to take a blood sample and an intravenous cannula (a thin plastic tube inserted into a person’s vein) was inserted. The doctor documented that the patient was ‘not able to fully communicate his needs’, and that they ‘reassured him and explained repeatedly’ about the likely infection and need to take a blood sample for testing. The doctor also documented that the patient was ‘agitated’ and ‘pulling away’ when the doctor attempted to take blood and that the decision to take blood and insert a cannula was taken in the patient’s ‘best interests’ as he was unable to consent (see section 1.3.12). This was the first time that staff had been able to take a sample of the patient’s blood since day 2. There was a problem with the latest blood sample and it could not be analysed, so no results were available.

2.2.16 On day 14 (Wednesday), another blood sample was taken and the patient was noted to have deteriorated. Before the blood test results came back, the patient had a cardiac arrest, which he did not survive. The blood test results showed kidney failure.

2.2.17 Following his death, the patient’s case was referred for a trust ‘Learning from deaths’ review and to the national ‘Learning from Lives and Deaths – People with a Learning Disability and Autistic People’ (LeDeR) programme (see section 1.1.5). His case underwent an in-depth review, and the findings were reviewed via the local integrated care board LeDeR governance process.

3.1.1 The patient was admitted to an acute hospital trust and needed reasonable adjustments to meet his needs. These needs and adjustments were identified by the investigation from various evidence sources, and are detailed in table 1.

Table 1 The patient’s needs and reasonable adjustments

3.1.2 The investigation found that the patient’s needs were not consistently identified, documented and/or met. The findings are described in the following sections, with consideration of how factors within the healthcare system may have influenced the provision of reasonable adjustments that the patient needed. Specifically:

• information sharing and accessibility
• specialist learning disability staff support in the acute trust
• support of hospital staff without specialist learning disability skills and experience
• organisational planning for the care of people with a learning disability.

3.2.1 The patient was known to have a learning disability, which was documented in the GP, social care provider, social services and hospital records. The investigation found no readily available or accessible summary of the patient’s needs and reasonable adjustments for staff in the acute hospital to review when the patient was admitted late at night.

3.2.2 The investigation identified several sources of information that contained or were designed to contain details about the patient’s learning disability and reasonable adjustments. These are explored below.

Alert flags

3.2.3 The trust used a flagging system to highlight key information in the hospital electronic patient record (EPR). A header at the top of a patient’s EPR contained essential information, such as the patient’s name and any flags.

3.2.4 In the reference event, the patient’s EPR had a flag present to alert staff that he had a ‘special need’. This flag consisted of a template with information fields, including the reason for a need, and a comment box. Staff could view and edit the flag as needed. The patient’s flag was ‘active’ (meaning that it was in use), with his learning disability noted as ‘confirmed’.

3.2.5 The trust learning disability policy described the need for ‘staff [to] ask and record’ the reasonable adjustments required by an individual in the comment box. The patient’s comment box was blank. Staff from several hospital departments told the investigation they were not aware they should be recording reasonable adjustments in this comment box. The investigation also saw and heard from staff that some were unaware of the flag and did not routinely review them. One staff member described how the flag was discussed as part of the nursing handover process in one clinical area and not in others. From a local annual assurance audit, the trust was aware of the need to improve documentation on reasonable adjustments within the special needs flag and had an action plan in place.

3.2.6 The investigation explored how trust policies were implemented and disseminated. Staff described a cascade process, where policy information was shared through the different levels of the organisation down to the individual staff level. Staff did not specifically remember when the learning disability policy was implemented, but described that this was not unusual as policies were continually being launched and updated.

3.2.7 To see a flag and its contents, staff had to first access a patient’s EPR, then select the flag to view the detail. Therapy staff told the investigation that they would review a patient’s EPR before providing care. However, not all staff groups (for example, those serving food) are authorised to view EPRs. The investigation found that the EPR was not a reliable method of alerting staff of a patient’s needs.

Learning disability care plan

3.2.8 The trust had launched an ‘adult learning disability care plan’ approximately 6 weeks before the reference event (see table 2). A care plan is a bundle of tasks that need to be completed as part of a person’s care. The adult learning disability care plan provided prompts for assessing and recording a patient’s needs and reasonable adjustments.

Table 2 Extract of the adult learning disability care plan

3.2.9 This care plan was not used for the patient in the reference event, which meant staff were not prompted to complete any required assessments. Staff told the investigation of several reasons why this may not have happened, including limited familiarity with the care plan and that it was one of several suggested care plans for patients with a learning disability flag in their EPR.

3.2.10 The investigation further found that activation of the care plan was not automated, and instead relied on staff to select and activate it within a patient’s EPR. The care plan was not described in the trust learning disability policy at the time of the reference event; it has subsequently been added. When the investigation undertook observational visits to the trust, the learning disability care plan was seen being used.

3.2.11 The learning disability specialist nurse had explored with the local digital team whether it was possible to provide a ‘pop up’ prompt in the EPR to use the care plan, with the aim of improving compliance. The digital team was unable to configure the prompt, but the investigation was unable to establish the reasons behind this.

Patient referral to hospital

3.2.12 The GP who referred the patient to hospital informed the nurse receiving referrals that the patient ‘refused blood tests!’. This was documented on the paper admission form, which was filed in the admitting area at the hospital. The paper admission form was not scanned into the patient’s EPR, and this information was therefore not available to the staff subsequently caring for the patient. The investigation was told this was the normal local practice.

Care passport

3.2.13 The patient did not have a care passport (see section 1.3.2). The investigation was told by the social care manager that they thought that patient did “not need” a care passport because he was only receiving social support. The manager said they did not have the opportunity to create a care passport when the patient’s health declined, as the priority had been trying to address his escalating needs.

Patient, family, friends and carers

3.2.14 The patient was not a frequent attender at the trust and so was not known to staff. He was not able to describe the adjustments he required to meet his needs, nor did he have any family or friends who could do this for him. The investigation heard from a range of staff at the trust that this was an unusual situation, and that friends and family would normally be among the first sources they would access to find out about the person. The learning disability specialist nurse told the investigation that the patient had changed social care provider during the pandemic. Attempts were made to obtain further information about the patient but they were only able to access ‘very limited information regarding him’. The specialist nurse could not complete a care passport for the patient as they did not know him.

3.2.15 Staff from the social care provider were aware of the patient’s learning disability and his needs, and had stayed with him from the time of the occupational therapist’s visit at his home until his ambulance transfer to hospital. A member of the social care staff gave information about the patient to the admitting doctor over the telephone. The investigation had sight of some community care documents pertaining to the patient’s health and wellbeing, but these were not available at admission as they were on paper and were not held at the patient’s house or on the hospital’s EPR.

3.3.1 The trust’s learning disability specialist nurse explained that their role consisted of developing strategy, providing education and supporting patient care. The role covered adult inpatients and outpatients across two hospital sites, and was funded through trust income from the NHS standard contract.

3.3.2 This specialist nurse was the sole person providing specialist support to patients with a learning disability in the trust. The investigation heard from a range of staff within and outside the trust about the positive impact that the specialist nurse made to people with a learning disability. It was also described that there was “no back up system” and that when the specialist nurse was on leave “it falls apart”. Gaps in available specialist support were further described at weekends and nights. In the reference event, due to annual leave and a following weekend, the specialist nurse was unable to see the patient until day 5 of the patient’s admission (their first working day since his admission). This contributed to delays in identifying the adjustments needed for the patient.

3.3.3. The investigation was told by multiple staff that there was an over-reliance on the skills of the specialist nurse; staff sometimes waited for the specialist nurse to make adjustments to the patient’s care, rather than proactively making changes themselves. The investigation was told by ward staff and observed that clinical demand meant they had little time to proactively seek information, particularly when records were held in different locations, and did not have time to undertake all reasonable adjustments themselves.

3.4.1 The investigation observed and was told by many staff and national bodies that working with people with a learning disability requires certain abilities. Some described ‘personal intuition’, while others thought that experience of working with or knowing a person with a learning disability was helpful.

3.4.2 The learning disability specialist nurse commented that people with a learning disability may receive care from any speciality in the trust, so it is important for all staff to have the required skills. However, the investigation was told by staff that they had not always been taught or gained experience in working with people with a learning disability during undergraduate, pre-registration or postgraduate training.

Providing knowledge and skill

3.4.3 The investigation found no mandated, local trust training in caring for people with a learning disability at the time of the reference event. Nurses reported that the learning disability specialist nurse provided informal training when reviewing people with a learning disability. The specialist nurse said they had hoped that the Oliver McGowan Mandatory Training on Learning Disability and Autism (see section 1.3.8) would provide the necessary training, but it was not yet available.

3.4.4 Following recognition of the lack of national training opportunities, the trust had worked with the local integrated care system to develop learning disability training, which was made available to all staff. This was voluntary and the investigation was told that high staff turnover made it difficult to ensure staff were trained. Senior staff said that the reason the training was voluntary was because of the already large volume of statutory and mandatory training; the trust has since made the training mandatory.

Learning disability champions

3.4.5 The trust had attempted to spread and connect learning disability expertise through local ‘champions’ who provided input within their clinical area. However, fewer people than expected had put themselves forward for this role. The investigation was told that launching the champion role during the COVID-19 pandemic may have contributed to its poor uptake, and that the champion role was a focus of the trust’s learning disability improvement plan.

Supporting assessment of capacity

3.4.6 The patient’s mental capacity was documented to have first been assessed on day 12 after admission. Nursing and medical staff told the investigation that up to this point, capacity would have been assumed as per the Mental Capacity Act (2005). Due to the passage of time and staff turnover, the investigation was unable to establish why the patient’s capacity was not assessed at an earlier point. There was a query in the patients records that the patient ‘may lack capacity on account of his learning difficulties’, but there was not documentation that this was specifically addressed. Staff described often feeling “uncomfortable [with assessing capacity] and find this difficult”. The investigation was also unable to ascertain whether staff were aware that the patient’s capacity had been questioned immediately prior to his admission. Accessing information about a person’s learning disability and their reasonable adjustments is considered in section 3.2.

3.4.7 Staff said the training they had received around mental capacity had focused on major interventions such as surgery. Staff felt there was less of a focus on assessing capacity for agreeing to or declining bedside tasks or when dealing with ambiguous situations. They said that as capacity should be assumed, they found it difficult to acknowledge when someone’s capacity may be impaired and should be assessed. Based on entries made in the patient’s records in the reference event, it appears that some staff were uncertain about his capacity. The trust’s adult learning disability care plan (see section 3.2.8 and table 2) included a task to prompt consideration of a person’s mental capacity. As the care plan was not used, the prompt was not seen.

3.4.8 The learning disability specialist nurse also described how people sometimes assume that a person with a learning disability does not have capacity without adequately attempting to support the person to participate in decisions, and without recognising that capacity is decision- and time-dependent. On one occasion, it was documented that the patient in the reference event ‘may lack capacity on account of his learning difficulties’. The patient had been identified to have communication needs (see section 3.1). These were unable to be met for the reasons described in sections 2.2.11 and 3.5.1 to 3.5.2, but were required to support him to participate in the decision-making.

Making reasonable adjustments

3.5.1 The investigation found that when the patient’s reasonable adjustments were recognised, it was not always possible to address them. This was exemplified by the need for the patient to have new hearing aids – which he did not receive – to help with communication. The investigation found that the difficulties communicating with the patient impacted on care decisions, as explored in previous sections. The patient’s social care provider had referred him for new hearing aids, but these were not yet available when he was admitted to hospital.

3.5.2 The audiology service manager explained that with the patient’s level of hearing loss, he would need a hearing aid with a ‘custom fit’ ear mould (the plastic piece that is shaped to the inside of a person’s ear). These are made on an individual basis and the fastest that a new mould can be obtained is 4 days, as it needs to be sent away. The usual turnaround time is 2–4 weeks. The manager told the investigation that the trust did not have any way of supporting a patient with profound hearing loss to hear in an emergency, such as when consenting for a procedure. The manager told the investigation that there are commercially available medical devices that could be used, but that these were not owned by the trust at the time of the reference event. The trust was exploring potential opportunities to use these at the time of report writing.

Providing continuity in care

3.5.3 The learning disability specialist nurse described the need for people with a learning disability to be cared for in a consistent environment, by familiar staff, to help develop trusting relationships that better enable the patient to engage with their own care. This highlights the importance of continuity in the patient’s care. In the reference event the patient was cared for in three different locations, receiving care from different staff in each one. While the moves were deemed necessary for both providing care and preventing the spread of COVID-19 infection, they meant that the patient had limited opportunity to get to know and trust the staff.

3.5.4 The were also inconsistencies in the wider medical teams caring for the patient. Five different consultants were responsible for the patient during his hospital stay. This was due to both staff rotas in the specific wards and the patient being moved. The investigation was told by multiple clinical staff that this affected rapport-building, and one consultant said that a lack of a consistent team meant that staff would not have been familiar with patients and would not recognise changes in patients on a day-to-day basis. The learning disability specialist nurse described how they built a rapport with the patient over time, which supported the taking of his blood and care.

3.5.5 The investigation learnt of historical reasons why the patient may have been untrusting of staff. As a teenager the patient had spent several years in a hospital for people with a learning disability, and it was suggested by several health and care professionals that this may have been at least partly responsible for his later lack of engagement with medical professionals. The patient was known to be ‘untrusting’ of those he was not familiar with and needed consistency. There were limited opportunities for trust staff to understand this historical information due to the previously described issues with access to information (see section 3.2.15) and high workload.

Handover processes

3.5.6 The investigation was told about the role of nursing handover (where information about patients is passed between nursing staff at shift changes) in supporting continuity of care. The local learning disability policy stated that a person’s needs and reasonable adjustments should be shared at handover. During observations on several wards at the trust, the investigation saw variations in how and whether this information was shared, with no structured process in place. Staff also described how information about a person’s needs was written in different places – such as within each professional’s documentation in the EPR – making collation difficult. Several staff said there was a lack of laptops on the patient’s third ward, meaning that staff may not have been able to access the EPR.

3.5.7 A previous Healthcare Safety Investigation Branch investigation found that:

‘Nursing handovers […] may not provide the information staff need to care for their patients because of where and how they are undertaken. There is no national guidance on how best to undertake handovers of care.’

(Healthcare Safety Investigation Branch, 2023a)

That investigation has made an associated safety recommendation to inform national efforts to improve the management of patient handovers.

3.6.1 In the reference event, staff caring for the patient on the ward had limited information about his needs and reasonable adjustments. The investigation found this was because information about the patient was stored in a fragmented way, meaning hospital staff under pressure from clinical demand and the COVID-19 pandemic had limited opportunity to access it. This clinical demand and several ward moves also meant staff were unable to build a rapport with the patient, and instead needed to rely on the limited resource of a single learning disability specialist nurse.

3.6.2 The health and care system within which staff were caring for the patient limited their ability to always meet his needs. The findings from the reference event investigation highlight the safety risks associated with: (i) a lack of accessible information about a person’s needs and reasonable adjustments; and (ii) limited support, whether through training or in the clinical environment, for staff who are not specialists in caring for patients with a learning disability. These findings were further explored as part of the investigation.

4.1.1 The investigation spent time with more than 20 different people with a learning disability and their families and carers. The investigation visited these individuals in acute hospitals, supported living, day centres and their own homes. This investigation saw how each person had differing and varying levels of needs. It was evident that forming long-term friendships, adapting communication and having a regular routine were important to many. Carers told the investigation that routines cannot be broken, because without them some people would be “completely lost”.

4.1.2 The investigation also observed how people with a learning disability often have complex health needs. For example, the patient in the reference event had a cleft palate with resulting speech difficulties. The investigation also saw that people with a learning disability may have particular needs when it comes to communication. For example, one person interviewed had to talk through each part of their body before they could identify where they were feeling pain.

4.1.3 Those that the investigation met with described their experiences of healthcare. Experiences varied, with some appearing to the investigation to be unwilling or unable to raise concerns about their care. This was demonstrated by one person whose carers described a poor care experience in hospital, but the person told the investigation they had no concerns. This is also reflected in Fiona’s story (box 1). Fiona lived alone, had mild learning disability and had gone into hospital after breaking her finger (Care Quality Commission, 2022b).

Box 1 Fiona’s story (Care Quality Commission, 2022b)

4.1.4 Carers and families told the investigation of the need to build trust with someone with a learning disability for that person to feel safe. Simple communication and easy-to-understand words are needed, and an awareness of how a person’s body language and behaviour can indicate how they are feeling. Developing these skills requires experience gained from working with people with a learning disability over a period of time. It also requires being able to access information about the person, such as a care passport, or the person’s wider circle of social support; and backed-up with access to specialist learning disability support.

4.1.5 Conversations with national bodies, including the Care Quality Commission, NHS England and Learning Disability England, indicated they were aware of the needs of people with a learning disability, and echoed the findings from patients, families and carers above.

4.2.1 ‘Assurance’ relates to having confidence that organisations are delivering high-quality care. The national ‘learning disability improvement standards’ (see section 1.2.3) provide NHS acute hospitals with standards that, if met, ‘identifies them as delivering high quality services for people with learning disabilities…’ (NHS Improvement, 2018). The standards provide a way for acute hospitals to identify areas in which they need to improve and to assure the quality of their care.

4.2.2 During interviews and observational visits, the investigation found that not all the acute hospitals visited met the requirements of the national standards, and that senior leadership teams did not always understand how their hospital was performing in this area. Those in senior leadership at some acute hospitals – particularly those with well-established acute learning disability liaison services – told the investigation they fully met all the standards, while similar staff at other hospitals suspected they did not. The investigation was told by learning disability staff in some hospitals that their specialty was not always a priority, and the demands of delivering acute care were the priority.

4.2.3 NHS England shared the responses of acute hospital staff to the latest (2021/22) learning disability improvement standards survey (NHS England, 2023). Barriers identified to meeting the learning disability improvement standards were: workforce issues (recruitment, retention and post-pandemic fatigue); pressure of work amid pandemic recovery plans; and poor estate (that is, problems with hospital buildings).

4.2.4 The investigation explored the role of integrated care boards (ICBs) in supporting and assuring the quality of learning disability care in their geographical area. While the work of ICBs was evolving at the time of the investigation, levels of scrutiny were again found to vary. In some areas of England, ICBs were seen to closely monitor local learning disability care and provide dedicated funding for specific liaison services. These dedicated funds contributed to improved resources in hospitals.

4.2.5 At a national level, hospitals are required to review their performance against the national learning disability improvement standards as part of the NHS standard contract (NHS, 2022). The national standards have increased awareness of the needs of patients with a learning disability and promoted greater consistency in service provision. However, the investigation heard from hospital teams that there was limited national guidance on what a high-quality learning disability service looks like. National organisations said that there can be no ‘one set way’ of providing a service as local needs vary, but that there are examples of good practice across the country.

4.2.6 The NHS Long Term Plan states that by 2023/24 the standards will apply to all services funded by the NHS (NHS England, 2019). NHS England told the investigation that the annual benchmarking programme of the national learning disability improvement standards is funded until March 2024, and decisions on future years will be made by NHS England; these decisions had not yet been made at the time of report writing. This means that after this point, acute hospitals will no longer be surveyed on the quality of their care for people with a learning disability. However, the continued need to comply with the standards provides an opportunity for ICBs and health and care regulators to assure themselves of the quality of learning disability services, and that services in their footprints are meeting the needs of local populations.

HSSIB makes the following safety recommendation

HSSIB suggests the following safety action for integrated care boards

4.3.1 The investigation found that each person with a learning disability has a unique support system that can include a range of organisations and people, each holding information about the person. The relevant information about a person’s needs is often not available in a single, readily accessible format. This means that when a person is admitted to an acute hospital, staff have to obtain this information from various sources. The possible range of information sources about a person with a learning disability is shown in figure 2, based on what the investigation observed and heard.

Figure 2 Examples of information sources about a person with a learning disability

4.3.2 The information sources can vary in their format and availability to acute hospital staff. Hospital staff told the investigation some information sources were unavailable, particularly outside of normal working hours, or could not be easily accessed. This meant that staff had to proactively search for information or rely on a person’s informal carers (such as friends and family). As such, staff often relied on speaking to people rather than accessing information through care records. It was also heard that informal carers sometimes know more about the person than is documented. In the reference event, the patient’s information was held across several different locations (see section 3.2) and he had no informal carers. The only sources of information that were accessible out of hours were the GP’s ‘summary care record’ (SCR; see section 4.3.6) and the patient himself, but he was too unwell to provide information.

4.3.3 The findings of the investigation around information sharing are supported by a systematic review of the views and experiences of adults with a learning disability accessing acute hospital services (McCormick et al, 2020). That review and previous reports from the ‘Learning Disabilities Mortality Review programme’ (LeDeR) programme have highlighted poor communication and inadequate information sharing in the care of people with a learning disability, and resulted in recommendations to strengthen information sharing by digitally integrating health and care records (University of Bristol Norah Fry Centre for Disability Studies, 2017).

4.3.4 The investigation was also made aware of an ongoing national programme that aims to provide a standardised approach to recording whether a person with a disability requires reasonable adjustments and what adjustments they need (NHS Digital, 2023a). This digital ‘reasonable adjustment flag’ is currently being piloted within the NHS and social care, and is planned to be rolled out nationally in 2024. See sections 4.3.12 to 4.3.15 for more information.

4.3.5 The investigation’s findings highlight problems with system interoperability, in that computer systems or software are often unable to exchange information about whether a person has a learning disability and their needs and reasonable adjustments. Lack of interoperability is a barrier to sharing information and is an issue that the [former] Healthcare Safety Investigation Branch (HSIB) has identified previously (Healthcare Safety Investigation Branch, 2023b). The investigation heard from national bodies that many of the plans to mitigate the risks around access to a person’s information focus on interoperable digital solutions. The investigation found that interoperability is part of the solution to supporting access to information, but that the needs of people working in the system must be considered when it is implemented, as highlighted by this investigation.

GP summary care record

4.3.6 The SCR is a digital extract of key information from a person’s GP record. It includes information such as medication and allergies and, for a person with a learning disability, may contain information about the individual’s needs. Hospital staff told the investigation that while they could access a person’s SCR following admission, they did not always do so. The reasons for not using the SCR included: it was not expected to contain the information needed; lack of equipment to access the SCR; and the need to log into a different system, which takes time.

4.3.7 Information about a person’s learning disability, their needs and any reasonable adjustments can be added to the SCR by GP practice staff. However, the person with a learning disability must give their permission (‘opt in’) for this information to be added and for it to be accessed by other health and care staff outside of the GP practice. There is a prompt in the learning disability annual health check (see section 1.1.4) to encourage people with a learning disability to agree to having this information on their SCR (NHS Digital, 2023b). Learning disability specialist staff told the investigation that people may not consent if the reasons for sharing that information – and the implications of not sharing is – are not clearly explained.

4.3.8 The investigation found that the utility of the SCR was limited by the requirement to opt in to have additional information included and shared. In the reference event, the patient’s needs and reasonable adjustments were not documented in his SCR. This highlights the importance of engaging with people with a learning disability to support them to understand the role of the SCR in sharing information.

Identifying learning disability-specific patient information

Alert flagging in hospital electronic patient records

4.3.9 The investigation found hospital records in paper and digital formats, and sometimes a mixture of both. All hospitals visited were moving towards digital solutions in line with the digital transformation of health and care (Department of Health and Social Care and NHS England, 2022). Where paper records were used, hospital staff and national bodies told the investigation that a sticker on the person’s records would indicate they had a learning disability. Some hospitals also used bedside symbols to highlight additional needs; the symbols observed varied.

4.3.10 The investigation saw the use of electronic patient records (EPRs) on all the inpatient wards visited, and was shown others during staff interviews. Each EPR had the ability to display alert flags. The investigation noted local variability in the naming, visibility, design and usability of flags within EPRs. This was due to local configuration of the flags, which has also been identified by the Care Quality Commission (2022). Some people had multiple flags with interacting and overlapping requirements, such as dementia and a learning disability.

4.3.11 All the liaison services the investigation spoke with described using the learning disability flag in the EPR to identify inpatients of who they needed to be aware. This relied on people being reliably flagged, which was often a manual process and was known to not always be accurate (Care Quality Commission, 2022b). The investigation was told about the following issues with flags:

• The terms ‘learning disability’ and ‘learning difficulty’ were sometimes confused, meaning patients were incorrectly flagged.
• The workload of liaison service staff was increased by inefficiencies, which increased the risk of them missing people with a learning disability. This was demonstrated by serious incident reports seen by the investigation.
• Where there were multiple flags on a record, staff did not look at them or assumed they were for other professional groups.
• There was a reliance on staff vigilance to check for the flag and alert the learning disability specialist nurse when it was missing so that it could be added.
• When a person was flagged in primary care as having a learning disability, this information was not always automatically transferred to hospital digital systems.

Reasonable adjustment digital flag

4.3.12 The investigation spoke with staff at NHS England who were leading the national reasonable adjustment digital flag programme. They explained that the flag would act as an electronic repository of information such as that contained in a care passport (see section 1.3.2), with details of a person’s conditions, needs and reasonable adjustments required. Authorised staff across health and care will be able to view and update the flag. NHS England told the investigation that the flag is being implemented to address known issues with information sharing. The programme aims for the flag to be included in a national information standard in 2024, which will make use of the flag mandatory.

4.3.13 The investigation asked NHS England how the flag would look and was told this was in development. However, the flag is intended to work across all care settings with consistent information fields, although the size and colour of the flag may vary depending upon local configuration. The investigation considered the risks arising from variable local configurations. The [former] HSIB has previously highlighted the need to carefully manage the presentation of critical information for staff who may work across different hospitals (Healthcare Safety Investigation Branch, 2023a).

4.3.14 During interviews and observational visits, the investigation explored with hospital staff their views on a digital reasonable adjustments flag. Staff described how information needs to be in a format that is accessible and easy to read by busy hospital staff. Staff wanted the information to be automatically pulled or pushed into hospital EPRs, rather than having to go and seek it.

4.3.15 The investigation identified several factors that may limit future uptake of the reasonable adjustment digital flag by hospital staff. These included the need for staff to actively enter and review the information while undertaking other clinical work, and whether people had agreed to have their information shared. Any new digital solution needs to consider its users from the outset to ensure that their needs and the environment in which the product will be used is taken into account, with the aim of enhancing usability and reducing errors.

HSSIB makes the following safety observation

Care passport

4.3.16 The investigation heard of the benefits of the care passport (see section 1.3.2), particularly when a person is alone and/or has communication issues, or is too unwell to communicate. As a person-held document, responsibility for maintaining the care passport falls to the person with a learning disability and those who support them. The investigation found that not everyone with a learning disability has a care passport; this has also been identified in serious incident investigations across England. Reasons for the absence of a care passport include the following:

• The care passport is voluntary and may be thought to only be needed when the person has complex needs.
• The person may decide that they do not need a care passport.
• The person may have accessibility issues that prevent them from maintaining or carrying a care passport.

Local and national learning disability specialists commented on the need to engage the wider community that support people with a learning disability and those that support them. This is to anticipate future potential health needs. One way of doing this is to proactively complete a care passport.

HSSIB makes the following safety observation

4.3.17 Across the acute hospitals engaged with, the investigation saw differences in the scope, purpose and format of care passports. Care passports were variously written by hand, completed on a computer and printed, or completed on a computer and shared electronically. Northway et al (2017) concluded that care passports would benefit from greater standardisation, and learning disability and acute hospital staff and national bodies told the investigation this would be beneficial.

4.3.18 A national learning disability membership organisation told the investigation of the importance of care passports and the need for them to be accessible for everyone who uses them. The organisation also highlighted the importance of supporting people with a learning disability to understand the value of care passports.

4.3.19 Some hospitals had the ability to scan and upload a paper care passport to the EPR, while others could upload it to another system and signpost to it, and others did not have any digital functionality. Depending on the local configuration of EPRs, care passports were seen to be more or less visible when filed within a person’s records. Staff told the investigation it was useful to have a paper copy of the care passport at the person’s bedside, as this provided a visual cue to staff and made the information readily available.

4.3.20 As per section 4.3.12, there is a drive to digitise care passports and create interoperability between systems. Most care passports seen by the investigation were paper-based. It was heard that having a paper-based care passport is important for people with a learning disability and their carers, who may not be digitally literate or have access to the technology or funds required. Seale (2022) reported similar findings and the Good Things Foundation (2022) highlighted that: ‘Keeping non-digital means of accessing a quality health service or information is vital to avoid discriminating against those who cannot (or choose not to) use digital health or care services…’

National care passport developments

4.3.21 The investigation spoke with the LeDeR programme within NHS England about the work it is doing to understand the range of care passports in use. Their work has identified “massive variation” and the need for a national approach to standardise care passports. NHS England told the investigation it is working with people with lived experience, NHS providers and ICB's to develop a standardised template and accompanying guidelines to support local organisations to review and revise care passports. This includes awareness by people with a learning disability and their carers, and aligning with the digital health flag (see sections 4.3.12 to 4.3.15) to ensure a co-ordinated and consistent approach to the recording of reasonable adjustments.

4.3.22 The Professional Records Standards Body (PRSB) told the investigation it was developing an ‘About Me’ digital information standard to be incorporated in the NHS App, which people will be able to access and update themselves (NHS Digital, 2023b). The PRSB told the investigation that it had taken a user-centred approach in developing the standard. The About Me standard is part of a wider set of national standards on sharing information between health and care (Professional Record Standards Body, n.d.). The PRSB also told the investigation that it would be beneficial if the About Me standard and the LeDeR work (led by NHS England) were aligned.

4.3.23 The investigation found advantages and disadvantages to both paper and digital care passports, and that both are needed to meet the needs of people with a learning disability, those who support them and hospital staff. Health and care organisations need to consider how paper and digital care records can be developed to be used together, and how their use can be supported within the constraints and challenges of current health and care systems. Considerations should also include the accessibility needs of the person with a learning disability and those that support them.

HSSIB makes the following safety recommendation

4.4.1 The investigation observed and was told by staff and managers of the reliance placed on acute learning disability liaison staff to support people with a learning disability when they are admitted to an acute hospital; this was also found in the reference event. The investigation found that access to liaison input was not consistently available across hospitals in England, with large variations in the liaison service provision and size of the workforce. Serious incident investigations across England and a national review have suggested similar findings (Care Quality Commission, 2022b).

Models of service delivery and commissioning

4.4.2 The investigation found no standard model for acute learning disability liaison services in England. Three different models were identified in the acute hospitals visited: trusts provided a learning disability specialist nurse ‘in-house’ (employed by the trust), ‘in-reach’ (employed by an external specialist trust) or both.

4.4.3 Most in-house learning disability liaison nurses that the investigation spoke with were directly funded by trust income through the NHS standard contract. The investigation observed that these staff often held senior positions, providing input to local teaching and learning disability strategy. They had a role in driving improvement in line with the national learning disability improvement standards. However, this more strategic role reduced their availability to deliver clinical care. Staff without specialist training, skills and experience in working with people with a learning disability and relatives who support people with a learning disability shared concerns with the investigation on “gaps” when a liaison nurse is on leave and there is no cover. These concerns have also been highlighted in serious incident investigations seen by the investigation.

4.4.4 The investigation also engaged with nurses working within an in-reach liaison model and their managers. The primary roles of staff in this model were to deliver patient care and staff training. In this model, the service was paid for by the ICB specifically for people who lived in the ICB’s area. This meant that should a person be admitted to hospital from outside that ICB’s area, no funded learning disability provision was available; in these cases, however, staff often still saw the person. The in-reach model had the benefits of allowing peer support and specialist cover during absence.

4.4.5 The investigation also shadowed liaison staff providing a hybrid model, where the trust maximised the benefits of both models.

Variation in service delivery

4.4.6 The investigation found variation both within and across acute learning disability liaison services. Similar has been highlighted in various publications (Moulster, n.d.; NHS Benchmarking Network, n.d.). The investigation particularly noted variation in:

• the size of teams
• pay grades (which relate to skills and experience)
• the scope of the role (for example, some included care for people with dementia or autism, or those with complex needs of all ages)
• resourcing (the majority seen were resourced via Trust income from the NHS standard contract, but some ICBs provided additional dedicated resource)
• the geographical area and number of sites covered.

4.4.7 None of the liaison services engaged with offered an out-of-hours service, with support limited to weekday office hours. One integrated care system (ICS) and provider of learning disability liaison nurses had trialled telephone advice and support at weekends and reported some benefits. A senior hospital nurse commented that learning disability service provision lags behind the current 24/7 model of acute hospital care. The Royal College of Nursing (2016) has previously recommended that the service should be available 24 hours a day. This would require more learning disability nurses when there is already limited capacity (see section 4.4.10).

4.4.8 NHS England shared the findings from its most recent (2021/22) benchmarking survey (NHS England, 2023) of the national learning disability improvement standards (which cover the care of people with a learning disability and autism across all age groups). This included information from 126 out of 135 trusts (93%) providing acute hospital services (general and specialist hospitals), and provides insights into variations in service provision across the country. The survey showed the following:

• Overall, 91.3% of trusts had some form of liaison service, with an average of 2.7 liaison workers per trust. This included 114 trusts that provided a range of general hospital services and 11 that provided specialist hospital services (some provided both).
• The remaining eleven trusts had no liaison service. This comprised 6 providers of general hospital services and 5 providers of specialist hospital services.

4.4.9 NHS England also shared its analyses of the first 3 years of the benchmarking survey. This showed that such services had increased rates of electronic flagging of a person’s learning disability status within their EPR and were more likely to make ‘key’ reasonable adjustments. An example of an adjustment was being able to provide overnight on-site accommodation for the family carers of an inpatient.

Demand versus capacity of services

4.4.10 The investigation heard of a mismatch between learning disability liaison staff availability and workload. Staff said that they managed their caseload by prioritising patients according to risk, which meant that people with complex needs and those who were newly admitted were given higher priority. One liaison nurse said, “Capacity is beyond stretched, and reasonable adjustments for a person may take more than 1 day [to put in place].”

4.4.11 Many of the trusts engaged with described using a ‘champion’ role to create a bridge between the liaison service and other hospital staff. Learning disability staff told the investigation that they provided initial and refresher training to support the ‘champions’ in this role. Trusts described how the champion delivers in-house training and receives and shares relevant information. They also provide some specialist knowledge on the wards, which can be important outside of regular working hours. The investigation heard widespread support for this role, but noted it has varying success.

4.4.12 The investigation also heard concerns from hospital staff, ICSs and national bodies about shortages in the current and future learning disability workforce, which have been explored in a previous HSIB investigation (Healthcare Safety Investigation Branch, 2022). Senior hospital staff and regional and national learning disability specialists spoke of the need to think “creatively” about how to support services, as there are too few registered learning disability nurses for the unmet need. Staff spoke of local initiatives to increase the recruitment and retention of learning disability nurses and to build additional capability among other staff.

4.4.13 The investigation explored the reasons why people are not entering the learning disability profession and was told it is often seen as a “dying profession”. However, learning disability staff and national bodies told the investigation that there are many opportunities within this field. Staff felt that their role is not always understood and may not be seen as professional. Some described being seen as “lesser nurses” or “not a proper nurse”. NHS England and [former] Health Education England told the investigation that following the All-England Plan for Learning Disability Nursing (Health Education England, n.d.), a learning disability nursing career pathway, training package and competency framework are in development and are due for delivery in 2025.

4.4.14 The investigation’s findings around liaison services demonstrate the need to build the specialist workforce and appropriately resource those services to meet local population needs. The findings highlight that every local population and hospital trust has different needs and so no single model of service delivery will be appropriate. However, the investigation observed and was told of examples of good practice that may help contribute to future developments. NHS England told the investigation that it is unable to provide a standard model for a liaison service due to the necessity to adapt to local needs, but that it could provide guidance around the elements to be included.

HSSIB makes the following safety recommendation

HSSIB suggests the following safety action for integrated care boards

Learning disability networks

4.4.15 The investigation was told of several learning disability networks and saw how they benefited staff and patients by sharing learning and improvements. An example was the development and implementation of a data-sharing agreement between acute hospitals and primary care to improve the accuracy of learning disability flagging in local EPRs. Another example was the development of a standardised regional care pathway.

4.4.16 The investigation was told by learning disability staff that such networks provide peer support, drive improvements and help with sharing good practice. However, not all areas had a network, meaning some in-house liaison nurses did not have this support.

HSSIB suggests the following safety action for integrated care boards

4.5.1 The investigation was told by people at local, regional and national level that hospital staff without learning disability skills are not always given the time, training and support to appropriately care for people with a learning disability. The investigation found that some of these staff had not been supported to recognise people’s needs and make reasonable adjustments. As per section 4.4.1, this increased the need for support from learning disability liaison staff.

Training of the current and future workforce

4.5.2 At the time of the investigation, not all of the acute hospitals the investigation engaged with had mandated learning disability training. NHS England shared acute hospital staff responses to the latest learning disability improvement standards survey (NHS England, 2023) with the investigation. Overall, 68% of staff (from 2,627 replies collected between November 2022 and January 2023) reported receiving mandatory training on meeting the needs of people with a learning disability or autistic people.

In July 2022, it became mandatory for registered health and care providers to ensure that their staff receive learning disability training appropriate to their role (see section 1.3.7). In support of this, a code of practice that outlines the standards for the training was under consultation, but had not been published at the time of the investigation. The Oliver McGowan Mandatory Training on Learning Disability and Autism was developed as the national standardised training programme (see section 1.3.8). The investigation was told that, in the meantime, many trusts and/or networks had devised their own training. While there is a national training mandate, it is not yet fully implementable as the workforce was being trained to deliver the interactive training element (see section 1.3.8). It is not yet known whether trusts/networks own training will meet the standards identified in the code of practice.

The Oliver McGowan Mandatory Training on Learning Disability and Autism

4.5.3 The investigation heard from staff and national bodies that they believed The Oliver McGowan Mandatory Training on Learning Disability and Autism (see section 1.3.8) will raise awareness of people with a learning disability in health and care. During the investigation, several anticipated challenges with implementing The Oliver McGowan Mandatory Training on Learning Disability and Autism were heard; these are shared here to help with its future implementation. In particular, the investigation heard concerns about: releasing hospital staff to attend training; releasing learning disability liaison staff to co-deliver training; finding people with lived experience to co-deliver training; and conflict with local training programmes that may offer more or less than The Oliver McGowan Mandatory Training on Learning Disability and Autism.

4.5.4 The investigation also heard concerns that The Oliver McGowan Mandatory Training on Learning Disability and Autism alone will not bring about the widespread system changes needed to deliver high-quality care to people with a learning disability. The wider systemic barriers have been explored by the National Development Team for Inclusion (2022b).

Health and care curricula

4.5.5 The investigation reviewed several healthcare professions undergraduate and postgraduate curricula to see how they address the subject of learning disability. In many cases there was little or no specific inclusion of learning disability, despite learning disability being more common than many of the other conditions addressed in some curricula. In contrast, learning disability was seen to be a core part of nursing associate training with recognition in curricula. During observational visits, the investigation saw and heard of the confidence and awareness that this had given nursing associates.

4.5.6 In 2019, Health Education England and NHS England commissioned the ‘Core capabilities framework for supporting people with a learning disability,’ with the aim of developing the current and future workforce (Skills for Health et al, 2019). However, the investigation was unable to see evidence of where the framework had influenced curricula or training. The investigation acknowledges that curricula, set by professional bodies, are often revalidated every 5 years, so there has been little time for the framework to be incorporated into curricula. Staff told the investigation that their training had not given them the required knowledge, skills and experience to care for people with a learning disability.

HSSIB makes the following safety observation

4.5.7 Hospital staff described discomfort when they needed to consider and assess the mental capacity of a person with a learning disability. A lack of confidence in mental capacity assessment has previously been reported among doctors (Penn et al, 2020), and the investigation found limited support and guidance for staff when needing to apply the Mental Capacity Act (2005) in practice.

4.5.8 Learning disability liaison service staff told the investigation about times when mental capacity assessment had not fully taken into account a person’s learning disability; this was also the case in the reference event and in serious incident investigations. Examples included:

• assuming that a people with a learning disability must lack capacity
• unease at questioning whether a person might have impaired capacity
• making decisions on behalf of people without trying to fully involve them in their care
• ignoring a patient’s decisions because they were felt to be unwise
• assuming that a person had capacity when there were cues to suggest otherwise.

4.5.9 Learning disability liaison and safeguarding staff also described how staff often do not realise that a person with a learning disability may have capacity for some decisions, but not others. For example, staff told the investigation that they were more comfortable with the concept of capacity when consenting a person for major surgery, but less comfortable when consenting someone for a routine test, such as a blood sample. A liaison nurse described that people with a mild learning disability “often use stock phrases” and can be “too superficial”, which can make it difficult to know whether the person truly understands the risks associated with their decisions.

4.5.10 The investigation also found other factors limiting the undertaking and quality of capacity assessments of people with a learning disability. Competing demands also meant staff again relied on liaison staff to support assessments, placing further demand on those services.

Supporting the mental capacity assessment process

4.5.11 Several organisations engaged with have launched initiatives in response to concerns about consent and mental capacity assessments in hospitals.

4.5.12 Staff working in safeguarding and mental capacity roles told the investigation that a significant issue lay in the way training in mental capacity is delivered. Training was described to focus on the legal aspects of mental capacity, rather than how to apply the law in diverse, complex and sometimes ambiguous situations. Concerns about the understanding and application of Mental Capacity Act (2005) in people with a learning disability have previously been raised (University of Bristol Norah Fry Centre for Disability Studies, 2017, 2019).

4.5.13 The investigation reviewed national publications and resources on assessing the capacity of a person with a learning disability. Examples included the General Medical Council (n.d.) learning materials, Mencap’s resource pack (Mencap, n.d.c), and a clinical knowledge summary on learning disability and decision-making and mental capacity guidance from the National Institute for Health and Care Excellence (2018b, 2023). Each describes the Mental Capacity Act (2005) and what should be considered when assessing capacity in people with a learning disability. However, staff with responsibility for assessing mental capacity described how publications are limited in their consideration of the real-world variations in how a person with a learning disability may present, and provide limited guidance on dealing with ambiguous situations.

4.5.14 The National Mental Capacity Forum told the investigation it was aware of these issues and agreed with the need for developing greater “expertise” in undertaking mental capacity assessments, including providing practical advice on applying the law in clinical practice. Previous national work in this area has not been continued following a pause during the national COVID-19 response and pending the outcome of government’s plans to introduce Liberty Protection Safeguards (Department of Health and Social Care, 2021).

4.5.15 The investigation found a need for resources that give practical advice to staff on applying the Mental Capacity Act (2005) to people with a learning disability. Such resources may give staff more confidence in undertaking mental capacity assessments, but will also need implementing in an environment that supports their uptake.

HSSIB makes the following safety recommendation

4.6.1 The investigation heard from a wide variety of sources, including national bodies and health and care providers, that long-held beliefs about people with a learning disability are still influencing the provision and quality of care received by people with a learning disability.

4.6.2 Health inequalities have been defined by the National Institute for Health and Care Excellence (2021) as ‘unfair and avoidable differences in health across the population and between different groups within society’. People with a learning disability experience high levels of health inequality, as demonstrated by their reduced life expectancy and increased risk of death with a medical condition compared with the general population (The Institute of Psychiatry, Psychology and Neuroscience et al, 2022).

4.6.3 People working in learning disability care told the investigation that several factors contribute to this inequality, including:

• longstanding societal prejudices
• an inability for many people with a learning disability to “be heard” by those with making strategic decisions about care planning
• the complex history of learning disability care and the evolution of nursing in this area (Gates, 2022)
• the historical segregation of people with a learning disability from society, and the move towards care in the community that only came to fruition in the early 1990s (Gates, 2022).

4.6.4 Research and policy literature have long described unfavourable attitudes towards people with a learning disability, with misconceptions and generalisations about their capabilities. A review written for Mencap about changing attitudes to learning disability noted that:

‘It has been suggested that misconceptions about the capabilities of people with learning disabilities may be common, such as that most have severe disabilities and can do few things for themselves. In reality more than 80% of people who meet criteria for “learning disability” have mild or moderate learning disabilities and can be largely independent in their everyday lives’ (Scior and Werner, 2015).

Further exploration of societal attitudes and organisational cultures, and how they influence the provision of care to people with a learning disability, was outside of the scope of this investigation. However, the research literature highlights that while these unfavourable attitudes remain, inequalities will continue to exist.

The investigation’s findings are summarised below.

• The health and care system is not always designed to effectively care for people with a learning disability.
• People with a learning disability who are admitted to an acute hospital are often cared for by staff without specialist training, skills and experience in working with people with a learning disability. These staff often have limited support and are unable to take the time they would like to meet the person’s needs.
• There is no standard model or national guidance for an acute learning disability liaison service (that is, teams that are specifically trained in caring for people with a learning disability). Consequently, there is variation in how these services are funded, their availability, the size of teams and what they are expected to do.
• The quality of learning disability services is currently monitored via the learning disability improvement standards annual benchmarking survey which is funded until the end of 2023/24. Decisions on future years have yet to be made.
• Staff in acute hospitals may lack confidence and support in assessing the mental capacity of people with a learning disability, in line with the Mental Capacity Act (2005).
• There is no national shared system with a single point of access for storing and managing information about the needs of people with a learning disability and the reasonable adjustments required for each individual.
• Current mechanisms for sharing information about a person – such as ‘care passports’ (a document that gives staff helpful information about the person’s health and social needs, including their preferred method of communication, likes and dislikes) and alert flags (a way to highlight key information to staff) on the electronic patient record – can be unreliable. Instead, information is often gathered from friends and family.
• Evidence exists that people with a learning disability experience health inequities. Long-held societal beliefs about the abilities of people with a learning disability may influence the provision of and decisions made around their care.

HSSIB makes the following safety recommendations

HSSIB makes the following safety observations

HSSIB suggests the following safety actions for integrated care boards