Investigation report

Medicine omissions in learning disability secure units

A note of acknowledgements

We would like to thank Luke and his Mother, whose experiences are documented in this report. We would also like to thank the healthcare staff who engaged with the investigation for their openness and willingness to support improvements in this area of care.

About Luke

Luke was born outside of the UK. When he was 18 months old, he was injured when he fell and hit his head on a stone step. The injury led to developmental regression (progressive loss of previously acquired skills) and, after moving to the UK, in early childhood, he was diagnosed as having a learning disability and associated behavioural difficulties. Later, at the age of 13, he experienced a second head injury in a car accident, which further affected his cognitive functioning.

Luke was later diagnosed with an organic delusional disorder (a mental disorder), type 2 diabetes, hypercholesterolaemia (raised cholesterol) and other causes of mental health distress.

During the investigation Luke spoke with investigators to share his experiences, jokes and practical jokes which are all part of his character.

About this report

This report is intended for healthcare organisations, policymakers and the public to help improve patient safety in relation to medicines omissions – that is, patients not receiving medicines that have been prescribed to them – in secure mental health units for people with learning disabilities. The report focuses on the main areas that contributed to a system in which medicines omissions were too common and prevention, identification and escalation processes were not robust. The report also highlights the range of work that is ongoing to improve the system.

Executive Summary

Background

This investigation explores medicines omissions (that is, patients not receiving medicines that have been prescribed to them) among patients with learning disabilities who are cared for in medium and low secure wards in mental health hospitals. The investigation focused on:

  • the environment in which medicines administration takes place
  • the availability and use of learning disability nurses in these environments
  • the skills required for nurses to help patients with learning disabilities be involved in choices about their medicines.

The investigation used the following real event, referred to as ‘the reference event’, to examine the patient safety issues associated with omitted medicines, specifically the effects of the built environment and the communication between staff and patients.

The reference event

Luke was detained, through the justice system, in a medium secure ward of a mental health hospital. He spent 21 months on the ward before moving into a low secure ward at the same hospital, where he stayed for a further 11 months. Both wards were specifically designated for patients with learning disabilities.

During his time at the hospital, there were several periods when Luke was not administered the physical health medication that had been prescribed for his diabetes and high cholesterol. Luke’s medication record regularly noted that Luke refused the medication. However, Luke and his Mother disagreed with this version of events, stating that other factors led to Luke’s medication omissions.

The national investigation

Luke’s Mother referred his story to HSIB to consider the issue of omitted medicines in the care of patients with learning disabilities being cared for in mental health hospitals.

The investigation visited mental health hospitals in different areas across the country to observe work in practice, and compared older sites to new-build hospitals, reflecting on buildings guidance and the effect this has on patient and staff behaviour. The investigation has considered work that NHS England and NHS Improvement has started to review the relevant buildings guidance. The investigation has reinforced and strengthened this work through a safety recommendation.

The investigation noted the importance of staffing levels and skillsets for learning disability nurses and mental health nurses in medium and low secure units. Across the whole of the healthcare system there is a shortage of registered learning disability nurses. This has been recognised and highlighted by NHS England and NHS Improvement, and Health Education England. Mental health nurses are commonly used to fill rota gaps for learning disability nurses, without necessarily being given the right skillsets to do so. Communication methods are key to ensuring that patients comply with their medication regimes. NHS England and NHS Improvement, with Health Education England, has launched the ‘All-England plan for learning disability nursing’, which aims to ‘attract, retain, develop and celebrate’ learning disability nurses. The plan sets out a variety of short-term and long-term ambitions for learning disability nursing. The investigation was told by NHS England and NHS Improvement that all of these are subject to regular review.

NHS England and NHS Improvement told the investigation that the retention element of the All-England plan is linked to the wider nursing workforce retention strategy. The investigation heard from senior staff that this remains the most challenging element of the plan.

Findings

  • The design, layout and décor of wards affected the behaviour of patients and the ‘atmosphere’ on wards.
  • Wards that resembled a living space, rather than a clinical environment, were considered by the investigation to have a calmer, happier atmosphere.
  • Current guidance on ward design and layout did not reflect current clinical thinking in relation to medicine administration areas.
  • The number of learning disability nurses recruited by the NHS each year is currently matched by the number of learning disability nurses leaving the NHS each year.
  • NHS England and NHS Improvement has found the retention aspect of its All-England plan for learning disability nursing (attract, retain, develop, and celebrate) harder to implement than the other three aspects.
  • In the sites visited by the investigation it was common for registered mental health nurses to fill rota gaps for learning disability nurses.
  • The competencies and skills of learning disability nurses and mental health nurses differ when considering how patients are engaged in taking medication. This was rarely considered when using mental health nurses to fill learning disability nurse staffing vacancies.
  • Electronic prescribing and medicines administration (ePMA) systems observed by the investigation were not interoperable with electronic patient records systems.
  • In the observation sites the investigation visited, medicines omissions were not automatically alerted to the prescribing or Responsible Clinician (the clinician with overall responsibility for a patient being treated under the Mental Health Act).
  • The number and descriptions of reasons for medicines omissions varied across ePMA systems and between hospitals.

HSIB makes the following safety recommendations

Safety recommendation R/2022/198:

HSIB recommends that NHS England and NHS Improvement reviews and updates all health building guidance relating to learning disability secure units to reflect current clinical guidance on ensuring the design and layout provides a suitable environment for patients and staff.

Safety recommendation R/2022/199:

HSIB recommends that NHS England and NHS Improvement develops the ongoing work to improve the retention of learning disability nurses, in line with the intent of the All-England plan for learning disability nursing.

HSIB makes the following safety observations

Safety observation O/2022/172:

It may be beneficial if electronic prescribing and medicines administration (ePMA) systems were interoperable with electronic patient records (EPR) systems to allow details of medicines omissions to be alerted to staff automatically from the ePMA system to the EPR system.

Safety observation O/2022/173:

It may be beneficial if user menus on electronic prescribing and medicines administration (ePMA) systems provided clear differences and reasoning for the categories used to record medicines omissions.

Safety observation O/2022/174:

It may be beneficial if organisations that use mental health nurses to cover shortages of registered learning disability nurses review their clinical model and conduct a training needs analysis. The aim of this would be to identify skills or training requirements, to make sure mental health nurses have the relevant communication methods and strategies to assist patients with learning disabilities in taking their medication.

1 Background and context

Focus of this report

This report focuses on reported medicines omissions relating to physical health medications prescribed for adults with learning disabilities who are admitted to mental health hospitals, especially people who are detained in secure units under the Mental Health Act 1983 (amended 2007). The term medicines omissions refers to occasions when patients do not receive medication that has been prescribed to them.

1.1 Adults with learning disabilities

1.1.1 The Mental Health Act 1983, as amended in 2007, describes a learning disability as:

‘… a state of arrested or incomplete development of the mind which includes significant impairment of intelligence and social functioning.’

1.1.2 According to the Foundation for People with Learning Disabilities (2020), the social model of disability:

‘… proposes that what makes someone disabled is not their medical condition, but the attitudes and structures of society. It is a civil rights approach to disability ... The distinction is made between ‘impairments’, which are the individual problems which may prevent people from doing something, and ‘disability’, which is the additional disadvantage bestowed by a society which treats these ‘impairments’ as abnormal, thus unnecessarily excluding these people from full participation in society.’

1.1.3 In this report the term used will be ‘learning disabilities’, as that is the government policy term and will be familiar to many readers.

1.1.4 Additionally, people using the mental health and learning disability services may be referred to as either patients or service users. It is more common to refer to inpatients as patients and not service users, therefore the term patients will be used throughout the report.

Population

1.1.5 Public Health England (PHE) estimated that just under one million adults with learning disabilities were living in England in 2015 (Public Health England, 2016a). Only about one-quarter were known to health and social care services. The majority lived independently or with support from family and friends.

1.1.6 According to Mencap, approximately 1.2 million people in England have a learning disability, which would be about 2.16% of adults in the UK (Mencap, 2019). Though these studies aim to aid understanding, by constructing learning disability as a category, it should be noted that as with all people there are variations within and between the groups and intellectual ability is a sliding scale. Each person is unique, which requires a person-centred approach.

Health of people with learning disabilities

1.1.7 PHE found that compared to the general population, people with learning disabilities are at increased risk of a variety of health problems. These include obesity, diabetes, epilepsy, sensory impairments, sleep disorders, mental ill health, thyroid problems, dysphagia (problems with swallowing), asthma, gastro-intestinal problems, poor oral health, dementia, chronic pain and heart failure (Emerson et al, 2012). The Confidential Inquiry into premature deaths of people with learning disabilities (Heslop et al, 2013) found that people with learning disabilities were at increased risk of dying early, compared to people with similar health problems who did not have learning disabilities. These health inequalities have continued to be shown in the English Learning Disabilities Mortality Review (LeDeR) programme (NHS, 2019) with annual reports highlighting health and care issues.

1.1.8 The reports described barriers to good health and good healthcare for people with learning disabilities, including:

  • social determinants of poor health, such as poverty, poor housing, unemployment and lack of social connections
  • communication difficulties and reduced health literacy (the ability to access, understand and use information and services to make decisions about health)
  • personal health behaviour and lifestyle risks, such as diet and exercise
  • deficiencies in access to services and quality of services.

1.1.9 Health services must make reasonable adjustments (in line with the Equality Act 2010) to recognise and respond to health problems in people with learning disabilities. There is a series of guides available to support health services with this duty (Public Health England, 2016b). This can include explaining health decisions to people with learning disabilities in terms that are understandable and checking that the explanation has been understood. A related idea is ‘parity of esteem’ (Royal College of Nursing, 2019) which equates the importance of physical health and mental health.

1.1.10 The relationships between learning disability and physical health problems are complex. These complexities make the efforts of providers to achieve parity of esteem more important, but more challenging.

Physical healthcare in mental health hospitals

1.1.11 The Care Quality Commission (CQC) provided guidance on the standards expected for physical healthcare for people with learning disabilities in mental health hospitals (Care Quality Commission, 2019a); this was accompanied by a second guide on physical healthcare for anyone in any mental health service (Care Quality Commission, 2019b). The CQC cited a key principle from the Mental Health Act Code of Practice that ‘commissioners and providers should ensure that patients with a mental disorder receive physical healthcare that is equivalent to that received by people without a mental disorder’ (Care Quality Commission, 2019a).

1.2 Mental Health Act 1983 (amended 2007)

1.2.1 Mental health legislation allows people with serious mental disorders to be treated for those disorders without consent, where it is necessary to prevent them from harming themselves or others and, while allowing treatment, it aims to provide safeguards for the individual who is subject to care. The Mental Health Act 1983 (MHA) set out a series of provisions for detention: these are commonly referred to as ‘sections’ and a person detained under these provisions is often colloquially referred to as having been ‘sectioned’. Different sections of the MHA allow for a person to be detained for varying purposes, such as assessment, treatment, reports from courts, for varying lengths of time, and with different legal structures and safeguards.

1.2.2 The Mental Health Act 2007 amended the 1983 legislation to state that a person with a learning disability would not be regarded as having a ‘mental disorder’ (and thereby subject to the Act) ‘unless that disability is associated with abnormally aggressive or seriously irresponsible conduct on his part’.

1.2.3 People detained under the MHA can be compelled, by the Ministry of Justice, to take prescribed medication or comply with other interventions. Although there are some exceptions, the intent of the MHA is for treating mental disorders. The MHA does not allow hospitals to compel treatment of a person for physical health problems. Such treatments require frameworks such as ‘best interests’ decisions as provided by the Mental Capacity Act 2005 (see 1.5). Medication that patients have been compelled to take will be referred to in this report as MHA medication.

1.2.4 A mental health professional who has overall responsibility for a patient who is being assessed and treated under the MHA is referred to as the Responsible Clinician.

1.3 Mental health hospitals

1.3.1 People who have a mental disorder, defined in the Mental Health Act 2007 as ‘any disorder or disability of the mind’, may require admission to a mental health hospital for assessment and/or treatment.

1.3.2 Some mental health hospitals specialise in the assessment and treatment of people with learning disabilities. However, a person with learning disabilities may also be admitted to facilities which do not specialise in treating people who have learning disabilities.

1.3.3 Staffing in mental health hospitals typically includes:

  • mental health nurses
  • learning disability nurses
  • support workers
  • peer support workers
  • psychiatrists
  • psychologists
  • therapists (for example, speech and language therapists, occupational therapists)
  • pharmacists
  • healthcare assistants.

1.3.4 Mental health hospitals (or units within them) offer different levels of security, such as open, low, medium and high secure units. The aim is to provide a safe therapeutic environment where treatment can occur despite risks. People who are cared for in secure units should be formally detained (under the provisions of the MHA), because the environments are necessarily restrictive, and detention allows checks and balances such as appeals. The MHA provides a legal framework to ensure people’s rights are protected and promoted.

1.3.5 A hallmark of good secure services is relational security, which is the knowledge and understanding staff have of a patient and of the environment, and the translation of that information into appropriate responses and care. Particular importance is placed on setting and reflecting on boundaries and having safe and caring relationships with patients.

1.4 Nursing

1.4.1 In 2019, England had a population of approximately 56.3 million, with an approximate adult population of 44 million. The percentage of adults with a learning disability is thought to be approximately 2.16% (Mencap, 2019) and children is 2.5%. By comparison, learning disability nurses (referred to by the abbreviation RNLD, for registered nurse learning disability) are only 1.55% of the number of adult nurses (referred to as RGNs, registered general nurses). According to figures supplied to the investigation by NHS Digital, as of July 2021 there were 3,109 RNLDs and 200,647 RGNs (full-time equivalents). By contrast, in September 2009 the number of learning disability nurses as a percentage of adult nurses was 3.32%.

1.5 Mental Capacity Act 2005

1.5.1 Mental capacity refers to a person’s ability to understand information and make decisions about their life. The primary purpose of the Mental Capacity Act 2005 (MCA) is:

‘… to promote and safeguard decision-making within a legal framework, by empowering people to make decisions for themselves wherever possible, and by protecting people who lack capacity by providing a flexible framework that places individuals at the heart of the decision-making process.’
(Social Care Institute for Excellence, 2009)

In contrast to the MHA, the MCA provides for a broad range of types of decision. These could include decisions about residence, finances, or physical health care.

1.5.2 Capacity is specific to individual decisions and times, so a person may have capacity to make some decisions and not others, or to make decisions at some times and not others.

1.5.3 It is equally important to ensure that capacity is not assumed incorrectly, and that due care is taken to consider the support a person may need to enable them to make a decision. For example, a person with learning disabilities might refuse treatment for a health problem because they have not been supported to understand the consequences. Continued and proactive support may be required to help a person follow basic health routines (for example, cleaning teeth) or health promotion advice (such as healthy choices about food and exercise) in addition to accepting and following a treatment plan. The right to make unwise choices must not be used by staff as an excuse for not helping a person to understand risks and options properly (Public Health England, 2016c).

1.5.4 The MCA cannot be used to make decisions about treatment for mental ill health for a person who is detained under the MHA, just as the MHA cannot be used to make decisions about general physical healthcare.

1.6 Safewards

1.6.1 ‘Safewards’ (Safewards, n.d.) is a model devised to reduce the number of flashpoints (social and psychological situations that precede imminent conflict behaviours) that happen on wards, and a clear part of this is reducing power imbalances where they exist. This in turn is hoped to reduce incidences of patients being unnecessarily restrained and contained. While the investigation did not observe restraint measures being required, nor did this form part of the lines of enquiry, the Safewards model does include references to behaviours, skills and environmental factors that are relevant.

1.6.2 The following extracts are taken from the technical descriptions of the Safewards model (Safewards, n.d.):

  • Staff team: ‘Moral commitments … equality (demonstrating through a variety of ways a lack of superiority)’.
  • Physical environment: ‘The features of the physical environment influencing conflict and containment rates include its quality (better quality environments evoke greater care, are more comfortable and express greater respect for patients)’.
  • Physical environment: ‘The staff modifiers of these features include the maintenance of the environment … frequent redecorations, regular furniture replacement’.

2 The reference event

This investigation used the following patient safety incident, referred to as ‘the reference event’, to examine the issue of medicines omissions in learning disability secure units. The incident describes the care of Luke, who is 31 years old and has a learning disability. Luke was a ‘long stay’ patient in a mental health hospital. The hospital provided NHS-funded care as part of a wider organisation. The organisation’s services included community and inpatient services across multiple sites in England.

2.1 Luke’s story

2.1.1 Luke was born outside of the UK. When he was 18 months old, he was injured when he fell and hit his head on a stone step. The injury led to developmental regression (progressive loss of previously acquired skills). After moving to the UK, in early childhood, he was diagnosed as having a learning disability and associated behavioural difficulties. Later, at the age of 13, he experienced a second head injury in a car accident, which further affected his cognitive functioning (that is, his mental abilities).

2.1.2 Following his second head injury, during adolescence and early adulthood, Luke used illegal substances. He engaged in petty crime, experienced mental health distress and had an extended stay in an acute adult mental health ward.

2.1.3 Luke was later diagnosed with an organic delusional disorder (a mental disorder), type 2 diabetes and hypercholesterolaemia (raised cholesterol).

2.2 Leading up to the reference event

2.2.1 In 2015, Luke was placed on remand and spent 3 months in prison before being transferred to a medium secure mental health facility. He was initially detained under Section 37 of the Mental Health Act 1983. Luke’s Mother told the investigation that it was agreed that he would be detained for 2 years under Section 37. He spent 32 months at the mental health hospital, 113 miles from his home and family. The first 21 months were spent in a medium secure ward and the following 11 months in a low secure ward.

2.3 Medium secure mental health ward

2.3.1 While Luke was in the medium secure ward, he gained a significant amount of weight. His Mother told the investigation that for a period of “6 months he wasn’t allowed to leave that ward and go and use any of the facilities and within that time he went from around 12 stone to about 17 stone”.

2.3.2 During this time, Luke developed, and was diagnosed with, hypercholesterolaemia (high cholesterol) and type 2 diabetes, although his Mother was not informed of the date when these diagnoses were confirmed. Luke was prescribed atorvastatin medication to lower his high cholesterol and metformin (medication prescribed to reduce harm from high blood sugar) to treat type 2 diabetes.

2.4 Luke’s medication omissions

2.4.1 The first record of atorvastatin medication being prescribed to lower Luke’s cholesterol was on 14 December 2015 and was recorded on the paper-based medication record system in use at the time.

2.4.2 It was later regularly documented on his medication chart to show that he had refused the metformin medication, which he had been prescribed since 2017. However, Luke and his Mother told the investigation that this was not true and there were other reasons for him not taking his medication.

2.4.3 Luke told the investigation that on multiple occasions, while in the medium secure mental health hospital, he had not been offered his medication. He thought the reasons included:

  • being asleep at the time of the medication round
  • being in his room and not going to the medicine dispensing hatch at the right time
  • being at an ‘off-ward activity’
  • attending an appointment
  • doing work experience.

2.4.4 The medication charts showed that during the period 23 August 2017 to 18 April 2018 Luke did not receive his metformin medication on a total of 41 occasions. On 21 September 2017 the metformin medication prescription was doubled, so he would then receive a dose during the lunchtime drugs round at 12:00 hours and one in the afternoon at 17:30 hours.

2.4.5 In the 12 days before the metformin medication was doubled there were 8 days, including 5 consecutive days, where the medication chart was marked as not administered. All of these were documented as Luke either refusing (five times) or declining (three times) the medication. After his metformin prescription was doubled there were 3 days, between 21 September 2017 and 18 April 2018, when Luke did not receive either his morning or evening doses.

2.4.6 It was documented 12 times on the medication charts that the metformin medication was not administered as Luke was absent during the drugs round.

2.4.7 On each of the 41 occasions Luke was not administered the metformin, the documented reason varied between him declining or refusing his medication or being absent from the ward at the time of the drugs round.

2.5 Specialised psychiatric rehabilitation hospital

2.5.1 On 19 April 2018, Luke was transferred to a smaller specialised psychiatric rehabilitation hospital (60 miles from his home). He was there for a further 14 months.

2.5.2 After an initial settling in and assessment period, Luke progressed to self-medication, where he was given 7 days’ worth of medication at a time. He experienced some problems with this and at the time of the investigation starting he had been put back on a daily dispensed medication routine.

2.6 Onward care

2.6.1 Luke was transferred to another setting in his home area where he spent a short amount of time before he was discharged and moved back home with his family.

3 Involvement of the Healthcare Safety Investigation Branch

This section outlines how HSIB was alerted to the issue of medicines omissions in learning disability secure units. It also describes the criteria HSIB used to decide whether to go ahead with the investigation, and the methods and evidence used in the investigation process.

3.1 Notification of the reference event and decision to investigate

3.1.1 Luke’s Mother notified the Healthcare Safety Investigation Branch (HSIB) that he was regularly not offered prescribed medication while an inpatient at a mental health hospital. She believed the staff prioritised medication for mental health conditions and were less concerned about him taking medication for his physical health.

3.2 Decision to conduct a national investigation

3.2.1 HSIB conducted an initial scoping investigation which determined that the patient safety concern met the criteria for investigation (see below). HSIB’s Chief Investigator authorised a national investigation.

3.2.2 A summary of the analysis against HSIB’s investigation criteria is given below:

Outcome impact – what was, or is, the impact of the safety issue on people and services across the healthcare system?

Medication omissions can lead to avoidable harm (Keers et al, 2018), increased length of hospital stays and complications relating to decisions about patients’ treatment. Omitted medications are usually categorised as errors which as well as jeopardising patient safety can affect relationships and trust between patients, their families, and professionals – and the wider reputation of healthcare.

Systemic risk – how widespread and how common a safety issue is this across the healthcare system?

Medication omission has long been recognised through research as one of the most common medication risks (Soerensen et al, 2013). During Luke’s care, there were errors in multiple areas of the management of his medicine prescribing and administration.

Learning potential – what is the potential for an HSIB investigation to lead to positive changes and improvements to patient safety across the healthcare system?

Initial observations and evidence gathered highlighted multiple opportunities for potential learning in optimising both the physical and mental health of patients and specific staff skills which support the health of the ‘whole person’.

3.3 Terms of reference

3.3.1 After the scoping investigation, the following terms of reference for the full investigation were agreed:

  • to understand the factors which contribute to the omission of medication to people who have a learning disability while they are in mental health settings
  • to investigate systems and structures which respond to the whole healthcare needs of the patient (mental and physical health)
  • to share the learning from secure units in mental health settings that have implemented systems and processes to mitigate against medicines omissions
  • to make safety recommendations to reduce the risk of medication omission to patients who have learning disabilities or acquired brain injury in long stay mental health settings.

3.4 Evidence gathering

3.4.1 Evidence gathered in this investigation included:

  • a review of Luke’s medical records, hospital policies and practices regarding management of medication administration
  • interviews with Luke and his Mother
  • interviews with the hospital staff at the units where Luke received care
  • observations of medication rounds at the setting where the omission occurred
  • observation of a medication round at one other setting where Luke was an inpatient at the time
  • visits to seven settings which provided similar care to observe ward activities, such as medication rounds and ward rounds
  • a review of the literature relevant to the safety risk
  • interviews and meetings with relevant national specialists regarding the administration of medication in secure units.

3.4.2 The findings set out below include reference to the atmosphere, feel and impression created on investigators when observations were conducted. This evidence is presented in the report to add context to the environments that were observed.

3.5 Methods used to analyse the evidence

3.5.1 In this investigation the Systems Engineering Initiative for Patient Safety (SEIPS) was used to identify processes within the administering of medication to inpatients in secure units and the systems of work which contributed to those processes. Alongside SEIPS, tasks were reviewed to gain clarity around the clinical and non-clinical processes. The processes critical to the safety risk were categorised and analysed within the following areas:

  • environmental factors
  • tools and technological factors
  • organisational factors
  • task-based factors
  • external factors.

3.5.2 The critical processes which formed the focus of the investigation were:

  • the medication round
  • escalation of incidences of omitted medication.

4 Analysis and findings – the reference event

This section describes the investigation’s findings in relation to the reference event. It focuses specifically on the factors that may have contributed to the patient safety incident occurring, including the guidance, policies and procedures used at the hospital where Luke was a patient, and factors that influenced staff decisions and actions

4.1 Power balance

4.1.1 The investigation observed a power imbalance between staff and patients, noting how the built environment and clinical processes removed autonomy and privacy from patients. There will always be a level of power imbalance in environments such as secure wards; however, systems and infrastructure, such as strict time rules and physical barriers, may form hierarchical structures and elevate the power and influence that staff have over patients.

4.1.2 The Safewards model (see 1.6) has relevance, to some practices observed by the investigation. For example, queueing for medication or control of physical spaces in the room amounted to a restrictive containment, which is an expression of power imbalance.

4.1.3 The investigation found that this concept was relevant to missed medications in the reference event. The power balance and factors affecting this balance are examined further in the analysis of Luke’s care in this section. This is then explored further in section 5.

4.2 Ward layout

4.2.1 The investigation looked at:

  • the design of the wards and how this contributed to the behaviours and the perceptions of patients and staff
  • the impact of the design on the power balance, and
  • how this may have affected the queueing that took place during medication rounds.

4.2.2 The medium and low secure wards were different in size and layout. The medium secure ward was spacious both indoors and outdoors, whereas the low secure ward was much smaller, with a small outside exercise area.

Medium secure ward

4.2.3 The medium secure ward had a large day room with plenty of seating. There were side rooms, such as the kitchen, and an entrance to the exercise yard. The yard was walled on all sides and the investigation considered that it had a very confined feel. The atmosphere in the medium secure ward was quiet during the afternoon and evening when there was little activity or interaction except between staff. There were 15 patients on the ward at the time of the visit; the ward had capacity for 17 patients.

4.2.4 During visits to the ward, which took place in the afternoon/evening, the investigation saw few patients as the majority remained in their rooms. However, Luke told the investigation that after breakfast he was not allowed in his room, from 09:00 to 12:00 hours, as the cleaners were in there.

4.2.5 From the perspective of the staff, the design made it easy to see the patients, as there was a large observation window from the staff working area. However, the day room was large and the window was not a key feature of the room.

Low secure ward

4.2.6 The low secure ward was small in comparison to the medium secure ward and felt physically cramped in communal areas. Most of the patients were out of their rooms which meant the ward was busy. Many of the patients were in the day room or the main thoroughfare corridor. Much of the socialising between patients happened in the corridor, which linked the bedroom area, day room, office, and entrance to the ward. There was a lot of interaction between patients, and between staff and patients.

4.2.7 The staff working room looked over the day room. It was much more imposing on the space than the equivalent room in the medium secure ward, as the low secure ward day room was much smaller. The hospital told the investigation that ‘there is an increased risk of harm to others if staff are not available to monitor and intercept any conflicts between patients that occur frequently and having staff available to respond to events or just for interaction would be considered positively as opposed to a notion of this being negatively received’. The investigation spent time sitting in the day room and considered that, unless they were in their room, patients were under the constant gaze of the staff.

4.2.8 The investigation observed occasions where staff intervened verbally to either redirect a conversation, to reduce tension, or to deescalate a situation between patients. The atmosphere felt tense. The investigation heard, from Luke and the patients on the ward, that the corridor did not feel comfortable for patients to wander through when there were groups of people socialising in it. Patients’ conversations focused on the hospital, time off the ward, the lack of things to do and something to look forward to.

4.3 The clinic (treatment and dispensing room(s))

4.3.1 Both wards had a treatment room with a dispensary in it. The patients attended the dispensary and received their medication through an administration hatch, which was in a thoroughfare corridor on each ward.

4.3.2 The hatch created a physical barrier between the patients and the nurse. It reinforced the hierarchical differences between them and reinforced the patients’ position in the hospital. While the hatch may have afforded the staff some protection from patients who become violent the investigation saw little evidence that this was needed. Luke told the investigation that tension and incidents in the queues were between patients and not between staff and patients. Luke told the investigation that he did not like queueing at the hatch because of heightened anxiety; it would often be a place of friction, arguments and even fights. He stated that, at times, this had put him off going to get his medication.

4.3.3 In the medium secure ward, there was a second barrier in the form of a double door from the day room to the corridor. This was controlled by the staff who allowed one patient through to the hatch at a time, taking on a role akin to a doorman. In the low secure ward, the patients queued from the hatch in a line along the corridor.

4.3.4 Patients were made to take their medication at the hatch. This was because some patients did not necessarily want to take it, but also some medication might be coveted by other patients. The position of the queue near to the administration hatch also created potential privacy issue. This is because the patients in the queue might be able to see the type of medication being given to the patient at the hatch and guess or speculate about their diagnosis, which the patient may wish to keep private. This may all increase the friction in the queue.

4.3.5 In the specialised psychiatric rehabilitation hospital, there were no queues during the medication rounds and no hatch. The patients were encouraged to be partners in the process of managing their medication and would often work with the dispensing nurse to retrieve their medication from a box, which was labelled with their name.

4.4 Electronic prescribing and medicines administration (ePMA) system

4.4.1 During the investigation’s visit, the medium and low secure wards were using an electronic system to manage the prescription and administration of medication (an ePMA system). However, this was not always the case during Luke’s stay. During the 21 months he spent on the medium secure ward, paper-based notes and medication records were being used. His records were moved onto to the ePMA system approximately 1 month after he moved to the low secure ward.

4.4.2 The transition from the paper-based system to the ePMA system took place on a ward-by-ward basis and the hospital encountered a number of installation problems. When the investigation visited the hospital, most wards were using the ePMA system but it was not in use across the entire site.

4.4.3 The ePMA system provided a list of patients who were due to receive medication on the drugs round. The administering nurse could then select each patient as they arrived and the screen detailed what medication the patient was due. Staff said they liked this system as it made it harder to miss medication than with the old, paper-based system.

4.4.4 When administering the medication the system gave them three options:

  • Administered
  • Not given
  • Problem.

4.4.5 If the nurse selected ‘Not given’ the ePMA system had a long list of categories to record why a patient had not had their medication:

  • Nil by mouth
  • Drug unavailable
  • Clinical reason – note
  • Down time – see chart
  • Not authorised under MHA (Mental Health Act)
  • MHA max drugs exceeded
  • MHA limit exceeded
  • Patient absent
  • Patient declined
  • Patient refused dose
  • Patient fasting
  • No stock on ward
  • Medication withheld by nurse
  • Other – add note.

4.4.6 The ePMA system had many more options for staff to choose from than the paper-based system. The list of options included in the paper-based system is shown below in figure 1.

Figure 1 Options for recording a medication omission on the paper-based system

Options for recording a medication omission on the paper-based system
Figure 1 Options for recording a medication omission on the paper-based system

4.4.7 The long list of categories available to staff in the ePMA system caused confusion about which one to select to record an omitted medication. During a period of approximately 8 months, Luke’s metformin administration records on the ePMA system mostly showed his 41 omissions as either ‘refused’ (10 occasions) or ‘declined’ (19 occasions), with the remaining entries noting Luke as absent (12 occasions). The investigation team asked multiple members of staff if they could describe the difference between declined and refused; the answers were inconsistent, with the majority unable to clearly differentiate between them and some saying the two were interchangeable.

4.4.8 Individual staff used both refused and declined interchangeably on the ePMA system, while on the previous paper-based system the staff almost exclusively used ‘R’ for ‘Patient refused medicine’. There was no explanation why staff, with the same two options of refused and declined being available, used only the refused category on the paper-based system.

4.4.9 It was noticeable that neither system had an option which allowed staff to report that the patient was sleeping. In cases where this occurred, the staff reported using either the refused or declined options to record the omitted medication. There was no evidence or suggestion from staff that the patient would be woken or offered the medication at a different time, which would have meant either leaving the clinic room to wake the patient or asking another member of staff do so.

4.4.10 The ePMA system gave staff an exact forecasted time to administer prescribed medication, or other products such as food supplements, earlier than the exact prescribed time. Staff did not apply any latitude to this to reduce frustration of the patients. For example, the investigation observed a patient being told they had to wait 2 minutes for a smoking cessation lozenge rather than this being provided 2 minutes earlier than indicated by the ePMA system.

4.4.11 Luke rarely refused medication, rather he did not attend the clinic to accept his medication and most frequently he missed his morning medication. He explained that he preferred to sleep late which is why he would miss the morning medication. After a prolonged period of omission, action was taken to enable the time of administration to be more flexible. However, this was not always applied by the staff, who often noted Luke as having a missed dose if he did not attend the medication round.

4.4.12 The pharmacy staff who were overseeing the roll-out of the ePMA system told the investigation that there were still ‘teething problems’ and issues around ensuring that all the staff were confident in using it. That said, the staff reflected that they generally liked the system, finding their way through the different menus and pages with relative ease.

4.4.13 The staff had the ability to add notes to the system, which would allow for a free-text narrative to explain why a medication had not been taken. This would, for example, have allowed the staff to explain that the patient was sleeping, in lieu of a pre-defined category. The staff were asked to explain how notes were added to the system; however, there was a clear knowledge gap in this area and some did not know how to do it. Staff who did know how to attach a note were visibly unaccustomed to the process. The explanation for the knowledge gap was that the system was new; however, there was no organisational policy setting out what these notes should be used for and they were used scarcely. The notes that were added could be seen on the prescribing screen but did not show anywhere else on the system.

4.5 Electronic patient records system

4.5.1 The hospital had an electronic patient records (EPR) system. The system had replaced the previous paper-based records. The staff expressed their satisfaction with the system and could navigate through the system with ease.

4.5.2 It was noted during the investigation that it was normal for staff to complete Luke’s notes at the end of each shift, with them compiled largely from memory of the events of the shift. Completing notes at the end of the shift allowed staff to continue with their work without interrupting it to write notes. Generally, this had no effect on the patients or the quality of notes, until there was an incident which was out of the ordinary, for example a medicine omission or an incident, or in recording the finer detail of Luke’s behaviour and interactions with staff when the detail was written from memory at the end of a shift.

4.5.3 There were several occasions where Luke had been involved in incidents, which were recorded in the notes in detail. However, the details of the daily routine, such as medication administration, were not so accurately reported. Each shift report was broken down into predetermined titled paragraphs, which included:

  • My mental health recovery
  • Stopping my problem behaviours (risks)
  • Staying healthy.

4.5.4 During a 5-day period, it was noted in Luke’s medication records that he had refused (on two occasions) or declined (on three occasions) his metformin every morning. During the same period, he took his MHA medication as prescribed, which was administered in the evenings. On the first 2 days Luke’s non-compliance with his medication was mentioned in both the ‘My mental health recovery’ and ‘Stopping my problem behaviours (risks)’ sections in the daily EPR report. For the last 3 days of this period there was no mention in the EPR of Luke’s non-compliance.

4.5.5 It was also noted that there was no mention of non-compliance in the ‘Staying healthy’ section of the notes, which appeared to concentrate on Luke’s eating and drinking habits. Metformin is a physical health medication and at that time Luke was on a single dose each day; he was later put onto a two-dose regime as his condition worsened. As part of a ‘staying healthy’ regime, adhering to his medication plan was important but was not mentioned in this section of Luke’s medical notes.

4.5.6 There was also evidence of contradiction between the information on the ePMA and the EPR systems. It was noted on multiple occasions in the ePMA system that Luke had refused his MHA medication; however, his notes on the EPR system stated that he had been compliant with his medication. The non-compliance, which happened in the evening, was entered onto ePMA at the time of omission, while the EPR notes were written the next morning from memory before the shift handover.

4.6 Medication administration

4.6.1 The investigation observed multiple medication rounds, with the medication being administered by a mental health qualified nurse each time.

4.6.2 In the medium secure ward, a healthcare assistant escorted patients from the queue in the day room to the hatch in the corridor. While this gave patients an element of privacy to take their medication at the hatch, the frustrations of queueing for medication still existed.

4.6.3 In the low secure ward patients queued at the hatch in the corridor. The queue frustration and lack of privacy for the patients made this a tense time.

4.6.4 Medication rounds, which lasted for 90 minutes, coincided with mealtimes, and occurred at around:

  • 08:30 hours
  • 12:00 hours
  • 17:30 hours
  • 21:00 hours.

4.6.5 Staff reported a system, driven by local policy, whereby when patients failed to present at the clinic for their medication, a member of staff would find the patient and invite them to attend. Luke’s records suggested that this was not consistently done. Staff also reported to the investigation that they would, if necessary, take the medication to the patient’s room. There was no evidence in Luke’s notes that he was administered medication in his room, which aligned with Luke’s account that he had to go to the clinic to receive his medication. The investigation found no further evidence to suggest that any individualised methods were adopted to support patients in taking their medication in a way they may prefer.

4.6.6 Ward managers in both the low and medium secure wards stated that there were organisational policies to support both of the actions outlined above. The investigation invited them to share the policy; however, policy documents passed to the investigation did not include guidance on what to do when a patient did not attend the clinic for their medication. The lack of a formal process, that the managers believed was in place, led to variation and confusion in practice.

4.6.7 The investigation observed three clinics where medication was administered. On each occasion as a patient came to the hatch the nurse would find the patient’s prescription chart on the ePMA system. If a patient arrived before the time on the prescription, they were asked to come back later because the system would not allow the medication to be administered early.

4.6.8 The lack of flexibility of the ePMA system (see 4.4.10), was a trigger point for the patients which appeared to contribute to the frustration and anxiety of the medications round. This was another system-created factor which emphasised the power imbalance between the staff and patients It also caused staff to feel disempowered.

4.6.9 The nurses located the patient’s electronic prescription record and identified the prescribed medication due to be administered at that time of day. They then either gave it to the patient and recorded it as administered, or, if the patient did not accept the prescribed product, the nurses selected the reason for the patient not accepting it.

4.6.10 Most of the items which were recorded as declined or refused were specialist mouthwashes and food supplements. These were recorded on the ePMA medication charts in the same way medication was, as well as some personal care products (skin creams, shampoo and toothpaste). The investigation was told that this was because it offered a convenient way of tracking them and the patients consumption/use of them.

4.7 Escalating cases of omitted medication

4.7.1 The hospital did not have procedures/policy in place describing escalation routes or timelines. Staff responsible for administering medication to patients had no guidance or protocol on how to respond to and escalate instances of omitted medication.

4.7.2 Examination of Luke’s medical notes showed that after multiple missed doses, opportunities were missed to escalate the omissions, including ward rounds and medication log audits, to a Responsible Clinician. This included the period where Luke missed 10 doses of metformin in a 14-day period. There was little mention of these doses being missed in his medical notes and no clear mention of any escalation or action. However, at the end of the 14-day period the frequency of Luke’s metformin dose was increased to twice per day.

4.7.3 The investigation did not observe staff recording the reasons for a missed dose, other than by selecting from the defined list. No escalation of medicine omissions was observed. Selecting ‘Not Given’, followed by the reason, simply created an entry on the medication log; it did not create an alert anywhere else in the system. There was no function within the ePMA system to alert a missed dosage of medication to a prescriber or pharmacist. The immediate responsibility to escalate incidences of omitted medication sat with the administering nurse, as prescribers were not routinely on the ward during medicines rounds and therefore unable to observe the refusal. Prescribers did not view the ePMA system each time they visited the ward.

4.7.4 It should be noted that even if the administering nurse made a note on the medication record, this did not create an alert and would only be of use if the note was clicked on to be read.

4.7.5 When asked, the Responsible Clinician reported to the investigation that they were rarely informed that patients missed doses of any prescribed medication, but they would expect to be informed. Their impression was that patients do not miss prescribed products.

4.7.6 The prescribers stated that there should be no greater importance placed upon patients taking medication for their mental health over their physical health. There were some medications that were critical, such as clozapine (medication used in the treatment of psychosis), as the medication course titration (the gradual increase of dose) must be restarted if it is not taken for 48 hours. However, this did not mean that missed doses of other medication could be ignored and they would expect to be informed. The prescribers described the reporting time for missed doses as varying from the next morning to within a week, depending on the medication.

4.7.7 There was a disconnect between work as imagined (what the prescribers thought was happening) and work as done (what the administering nurses were actually doing) when it came to medication rounds. A Responsible Clinician told the investigation that they had experience of a patient refusing a medication, but after being offered the medication repeatedly at every medication round, they eventually accepted it and did not refuse it again. The Responsible Clinician stated that they believed this was happening at the medication rounds if patients refused medication.

4.7.8 Additionally, the Responsible Clinician thought that the patient would be involved in discussions about why the medication was being refused; if it was because of the taste, for example, then something could be done to change this. The investigation found no evidence to support that such discussions occurred and there was no comment to reflect this in Luke’s notes.

4.7.9 Critical to the escalation process was that the ePMA and EPR systems were not connected, so information about omitted medication did not transfer to the EPR system, nor was there an option for the nurse to export information from the ePMA system. Therefore, any omitted medication would have to be entered manually when completing a patient’s electronic notes for the day/night.

4.8 Physical heath medication versus Mental Health Act medication

4.8.1 The investigation found that topical medication, such as creams, specialist shampoo, mouthwash and food supplements were recorded on the ePMA system, which meant that any refusal of these items was also recorded.

4.8.2 Multiple refusals of topical medication were observed, along with mouthwash and food supplements, with patients predominantly citing not liking the taste as the reason for refusal. However, on each occasion a patient refused a medication, the investigation observed that it was offered with a leading question such as, “…do you not want your ….?”, or “…you don’t want your … do you?” The investigation observed how these questions may have encouraged the patients to refuse the medication. The investigation consulted with a subject matter advisor, who is a forensic psychiatrist. The subject matter advisor stated that ‘choice of language is especially important in wards who treat people with communication or cognitive needs’.

4.8.3 Additionally, with the potential for a power imbalance between the staff and the patients, it is likely that being able to refuse a medication gave the patients a sense of reasserting some control and levelling that power balance.

4.8.4 On several occasions the investigation observed nurses recording a prescribed item as refused or declined without having offered it to the patient. The investigation was told that “they always refuse it, so I just mark it down as refused”. Another explanation for not administering a medication was, “he just throws it back and hits us with it”; again this was marked as refused. These items were also topical/physical health products.

4.8.5 The staff on both wards were keen to point out that psychotropic medication (medication which affects psychological function, which include antidepressants) was not something patients could refuse under the Mental Health Act, but that physical health medication was not enforceable. The investigation did not observe any MHA medication being refused by patients, or patients attempting to refuse it. The MHA medications were not offered with leading questions, but with an assumption that the medication would be taken.

4.8.6 During observations several patients chose not to accept the prescribed topical medication/products. As these were physical health medications the staff did not try to convince the patients to take them and accepted the refusal immediately.

4.8.7 The investigation observed that staff had become accustomed to the act of refusal for medication that was not MHA medication. The investigation considered that this may have explained the lack of escalation to prescribers for physical health medication. The administering nurses had developed a tendency to prioritise MHA medication over physical health medication and, without escalation to the prescribers or an alerting system, medication omissions could go unnoticed by prescribers until picked up by an audit. Medicines omissions should eventually be picked up by the pharmacists through the medicines optimisation process, during which they audit the patients’ prescription charts. However, the Responsible Clinicians and nurses held a shared view of the process of escalation regarding mental health medication omissions – that these would be escalated at the earliest convenient time.

4.9 Staff skillsets and competencies

4.9.1 During Luke’s stay at the hospital both the medium and low secure wards were managed by a qualified registered learning disability nurse and a qualified mental health nurse respectively.

4.9.2 The medium secure ward reported that each day shift normally included one learning disability nurse (RNLD), two mental health nurses (RMHs) and 10 healthcare assistants.

4.9.3 Including the ward manager, the low secure ward had eight RMHs and two RNLDs. They also had 36 healthcare assistants. The ward reported that they tried to always have one RNLD on each shift, although this was not always possible due to annual leave and sickness. There were also three shifts per day, with a day shift, a night shift and a twilight shift which overlapped with the day/night shifts, which meant there was zero flexibility for RNLD staff to be away without leaving the ward with shifts that had no RNLD cover.

4.9.4 Both wards had input from a dedicated pharmacist, occupational therapist, psychologist and assistant psychologist, psychiatrist, and speciality doctor. Other allied health professionals and service providers also attended the ward.

4.9.5 There was a general shortage of RNLD nurses on both wards – wards that specifically housed patients with learning disabilities. A lack of nurses with the skillsets required to care for patients with learning disabilities, particularly in communication, had a direct impact on the quality and style of care being received by Luke and the patients observed during the investigation. This was particularly evident during the medicines rounds when communication with the patients was at its most important.

5 Analysis and findings – the wider investigation

This section sets out the findings of the investigation’s analysis of medicines omissions in learning disability secure units in the context of the wider healthcare system. This element of the investigation considered national policy and guidance, the regulations that govern this aspect of medical care and practices observed across the country. The findings are presented within the following themes:

  • the ward environment
  • medicines omissions
  • nursing.

5.1 The ward environment

Administration hatch

5.1.1 An administration hatch is often used to dispense medicine to patients. It provides a location to give medicine to patients without the patient entering the room in which it is stored. This aims to reduce risk of the patient being able to access medication not intended for them.

5.1.2 A downside to administering medicine at a hatch is the barrier that it creates between the staff and the patient. This barrier can, and has, enhanced or created a power difference between the staff and the patient, which is an unintended consequence.

5.1.3 In 2011, the Department of Health and Social Care published guidance (Department of Health and Social Care, 2011) which lays out considerations for the design and use of treatment and medicine dispensing rooms. The key points from the guidance are:

  • The operation, design and fitting of the dispensary should be compliant with current guidance in relation to the control and administration of drugs.
  • The position of the dispensary and treatment rooms should aim to protect the privacy and dignity of patients while fulfilling the need for operational effectiveness on the ward.
  • The dispensary should be located adjacent to the treatment room with a connecting door.
  • The entrance to both rooms should be easily observable by ward staff.

5.1.4 There is no mention of a hatch within the Department of Health and Social Care guide. However, ‘Health Building Note 03-01: Adult Acute Mental Health Units’ (Department of Health, 2011) states under the topic of ‘controlled drugs’:

‘… the method of dispensing drugs to service users should be by means of a secure hatch in a manner which is sufficiently coordinated and controlled so as not to involve service users having to queue with other service users.’

5.1.5 This contradicts paragraphs 8.117 and 8.118 in the same document, which state:

‘Space will be needed to assemble and prepare equipment for clinical procedures, and secure storage will be needed for drugs, medicines, lotions plus a small working stock of clean and sterile supplies. A secure-locked controlled drugs cupboard should be located within this room for the secure storage of drugs and medicines. Prescribed drugs and medicine may be dispensed from this room. Stable doors are to be avoided for issues of privacy and dignity.’
‘Consideration should be given during the design process to the administering of medication, injections, first aid, physical examinations and other clinical procedures such as venepuncture [accessing a patient’s vein, for example to take a blood sample] that may be carried out in this room.’

5.1.6 The use of a hatch has been employed by some hospital trusts in both new and older buildings. The location of the hatch in relation to the medicine dispensing room and the treatment room varied, with the location affecting the behaviours of both staff and patients during the medication rounds.

5.1.7 The investigation noted that a hatch opening into a corridor (see figure 2) caused patients to queue, which then created other issues related to heightened tension and loss of privacy. Other trusts had hatches that were enclosed within the boundaries of the treatment room; this was seen in the recently built location that the investigation visited. The hatch was seen as a normal method to restrict access to the room where the medicine is stored. Behaviours were different though, with no queueing and patients being invited, individually, to the clinic to receive their medication. Once inside the treatment room the hatch was accessible, but the door to the treatment room was closed behind them, offering them privacy throughout the administration process. Figure 3 shows a different example which was observed.

Line drawing diagram show room layout with a Hatch opening into corridor
Figure 2 Hatch opening into corridor
Line drawing of a room layout with a Hatch combined with private administration area
Figure 3 Hatch combined with private administration area

Queueing

5.1.8 The ward with the layout shown in figure 3 reported no issues relating to tension among patients during medication rounds, predominantly because there was no queueing. Because the hatch is not immediately accessible from the ward corridor, patients were not drawn to the hatch.

5.1.9 The investigation noted different cultures on wards when it came to medication rounds. Rather than opening a hatch and waiting for patients to arrive and forming a queue, some trusts invited patients to the clinic one at a time. The patients were used to this and waited to be invited rather than approaching the clinic during the medications round opening times. In units where queueing was common it was not discouraged by the staff.

5.1.10 Where ward environments did not have a hatch, the medication was administered inside the treatment room and there were no queues. The investigation observed multiple wards where the lack of queues had noticeably reduced tension in the ward during medication rounds.

Ward design

5.1.11 The design of the wards affected the atmosphere observed on the ward. The investigation observed wards where patients told the investigation that they felt like they were under constant supervision, because the observation windows were obtrusive and it was impossible not to be aware of them all the time. However, some wards were designed in such a way that the staff were able to observe the patients without them feeling like they were under their constant gaze. Open areas and glass partitions enabled areas to be observed from a distance, which therefore felt less intimidating. This reduced the sense of a power imbalance.

5.1.12 The newly constructed building that the investigation visited had a calm feel. The layout did not give the feeling of being under constant supervision, although all areas were observable by staff. The patients appeared relaxed and happy when interacting with the investigation team. Patients’ needs, such as music, faith, art and quiet rooms, had been considered. The décor was colourful and pleasing, without being extravagant, whereas some wards observed in other sites were a plain white or magnolia throughout, giving the impression of a hospital setting rather than a natural living space.

5.1.13 A report by the Care Quality Commission, ‘Out of sight – who cares?’ stated:

‘Most of the wards we visited were not therapeutic environments, and often people did not receive care tailored to their specific needs. We found particular issues with services not paying attention to the impact that the environment could have on people with a learning disability or autistic people. The low-quality care we saw was often due to poor physical environments and ward layouts, issues with staffing, and a lack care planning.’
(Care Quality Commission, 2020)

5.1.14 In secure units, patients are likely to have longer stays. This increases the need for wards to be therapeutic environments, both in design and aesthetics.

5.1.15 The investigation spoke to NHS England and NHS Improvement about the current guidance and it had already started work on reviewing and amending the documents. The work was ongoing and as a result of the discussions, HSIB makes the following safety recommendation to ensure that the work is completed.

HSIB makes the following safety recommendation

Safety recommendation R/2022/198:

HSIB recommends that NHS England and NHS Improvement reviews and updates all health building guidance relating to learning disability secure units to reflect current clinical guidance on ensuring the design and layout provides a suitable environment for patients and staff.

5.2 Medicines omissions

Recording the administration of non-medicinal items

5.2.1 During the investigation it was observed to be common practice to record non-medicinal items on prescription charts, or the electronic prescribing and medicines administration (ePMA) system. A previous HSIB investigation (Healthcare Safety Investigation Branch, 2020) highlighted issues with non-medicinal items being documented on prescription charts.

5.2.2 Sites were observed recording items on the prescription charts/ePMA system such as high-fluoride toothpaste, Nicorette lozenges and food supplements. It was not uncommon for patients to decline these items and it had become normalised in some settings.

Physical health medication versus Mental Health Act mandated medication

5.2.3 While patients are in medium secure units, they are obliged to take medication in line with the Mental Health Act (MHA), as directed by the Ministry of Justice. This places a greater priority on the MHA medication over the physical health medication that patients may be prescribed.

5.2.4 Physical health medication may be refused by patients if they have the capacity to make the decision. An assessment of mental capacity must be made in line with the Mental Capacity Act 2005 (MCA). It was noted that no recordings of mental capacity assessments were witnessed during the investigation. No members of staff cited the MCA when medication was refused and recorded.

5.2.5 If on a routine basis no action is taken when patients refuse physical health medication, with patients not understanding the consequences of refusal, this can lead to staff normalising the refusal of medication. Once refusal has become normalised, the recovery processes and actions (such as escalation, offering different administration methods or encouraging patients to take the medication) that should take place, do not. Staff may not explain to patients the reason for taking the medication or ask why the patient is refusing the medication.

5.2.6 During the investigation’s observations with staff and patients, no MHA medication was omitted, and patients seemed to be aware that this medication could not be refused under the terms set by the Ministry of Justice.

Medicines omissions escalation

5.2.7 The approach to escalating incidences of omitted medications varied across settings. It varied according to the type of medication, the clinician and the setting. The investigation was unable to identify any best practice or robust systems for Responsible Clinicians to monitor medication administration with confidence without attending the medication rounds themselves, which may not be feasible.

5.2.8 In every setting the investigation observed the task of escalating medicines omissions was the responsibility of individual members of staff. Escalation approaches included recording the omissions in the patients’ notes, speaking to the Responsible Clinician directly, or raising omissions at the multidisciplinary team meeting for the patient; there were no systems in place to ensure that escalation took place. Clear systems for escalation would make it more likely to occur and be governed safely.

5.2.9 Escalation complications arise when electronic patient records systems do not interact with electronic prescribing systems. There are obvious escalation problems with paper-based systems; however, electronic systems should interact, automating escalation and making sure that warnings or notifications are sent to clinicians advising of events such as medicines omissions.

HSIB makes the following safety observations

Safety observation O/2022/172:

It may be beneficial if electronic prescribing and medicines administration (ePMA) systems were interoperable with electronic patient records (EPR) systems to allow details of medicines omissions to be alerted to staff automatically from the ePMA system to the EPR system.

Safety observation O/2022/173:

It may be beneficial if user menus on electronic prescribing and medicines administration (ePMA) systems provided clear differences and reasoning for the categories used to record medicines omissions.

Self-administration

5.2.10 The approach to self-administration (patients being responsible for taking their own medicine) varied across the sites, however, it was not an approach that was strongly encouraged at any of the sites. Some issues with self-administration that were highlighted to the investigation included:

  • patients not taking the medication, either deliberately or forgetfully
  • patients taking too much medication
  • patients taking medication from other patients.

5.2.11 It was noticeable that there is a gap between the aims of hospital community learning disability settings (hospitals that have supervised flats for patients), that seek to give independence to the patients and prepare them for living on their own in the community, and learning disability secure units, which appeared to have a much shorter-term view that looks at stepping the patients down to the next level of secure care.

5.2.12 The investigation also noted that where self-administration was encouraged, medicines omissions were reduced. There is little research into this within learning disability settings; however, studies within acute hospital settings have shown that patients who self-administer have fewer medication errors than those who have their medication administered by a nurse. It also reduces nurses’ workload, meaning more time can be spent educating the patients about their medication (Manias et al, 2004).

5.2.13 Self-administration would also be easier if the amount of prescribed medication was reduced. This is in line with the aims of ‘Stopping over medication of people with a learning disability, autism or both’ (STOMP), which is an NHS initiative to reduce cases of over medication of people with learning disabilities (NHS, 2022).

5.2.14 The investigation noted that one observed organisation, which provided a medium secure service, had reduced the medication the patients were taking where possible, with some patients on no medication. Where possible, those patients who were prescribed medication were self-administering, and the staff stated that they ‘don’t have medicines omissions’.

5.3 Nursing

Learning disability and mental health nursing numbers

5.3.1 Figures 4 and 5 show how the number of adult nurses has increased in the last 12 years, whereas the number of learning disability nurses has decreased by almost half. This has led to staff shortages in the learning disability nursing field. This is particularly felt in the NHS where the figures supplied represent only 15% of registered learning disability nurses (RNLDs) on the Nursing and Midwifery Council register, as shown in figure 6. Although this number is slightly skewed by the shift of care for learning disability patients from hospital settings to social care settings.

Graph showing results of Adult nursing workforce in the NHS
Figure 4 Adult nursing workforce in the NHS
Graph showing the results of Registered learning disability nursing workforce in the NHS
Figure 5 Registered learning disability nursing workforce in the NHS
Graph showing the results of the Number of registered learning disability nurses
Figure 6 Number of registered learning disability nurses

5.3.2 The Nursing and Midwifery Council supplied the investigation with numbers of RNLDs staff on the nursing register (see table 1). The figures obtained covered 2016 to 2020 inclusive.

Table 1 Number of learning disability nurses, 2016 to 2020
As on 31 March As on 30 September March to
September change
31 March to
31 March
2016 18,163 17,863 -300
2017 17,503 17,470 -33 -3.63%
2018 17,174 17,311 137 -1.88%
2019 17,125 17,383 258 -0.29%
2020 17,179 17,494 315 0.32%

5.3.3 The figures suggest that recruitment and the number of people qualifying as RNLDs is improving, but the figures for the end of March suggest that staff are leaving almost as fast as people are being recruited and qualified. This leaves the total number of RNLDs static at just over 17,100 for the 3 years from 2018 to 2020. However, it should be noted that RNLD numbers from March 2016 to September 2020 show a decrease of 669 or 3.68%.

5.3.4 While recruitment appears to have increased, it has not resulted in an equivalent increase in the total number of RNLDs year on year. The evidence would suggest that recruitment is not the main problem, rather retention of RNLD is a greater concern.

5.3.5 The RNLD nursing profession is increasing much more slowly than the other nursing fields. Tables 2 and 3 show similar figures for adult nursing, mental health nursing and children’s nursing numbers. All have higher numbers of qualified nurses in September 2020 compared to March 2016.

Table 2 Number of adult nurses, 2016 to 2020
As on 31 March As on 30 September March to
September change
31 March to
31 March
2016 532,469 531,752 -717
2017 528,818 526,412 -2,406 -0.69%
2018 524,891 526,195 1,304 -0.74%
2019 528,146 533,078 4,932 0.62%
2020 540,527 544,361 3,834 2.34%
Table 3 Number of mental health nurses, 2016 to 2020
As on 31 March As on 30 September March to
September change
31 March to
31 March
2016 90,068 89,137 -931
2017 88,741 88,659 -82 -1.47%
2018 88,421 88,980 559 -0.36%
2019 88,944 89,831 887 0.59%
2020 90,203 91,215 1,012 1.42%

5.3.6 The figures show that the RNLD and registered mental health (RMH) numbers are lagging behind in terms of recruitment, but more crucially in terms of retention, when compared to the figures for adult and children’s nursing. This places an additional burden on the healthcare system in a number of areas, including:

  • Training – Organisations must employ replacements and then train them in local procedures, but also then supervise the newly qualified nurse until they gain experience.
  • Recruitment – The system must recruit enough people to train as RNLD nurses to fill the gaps that either already exist or appear due to nurses leaving the service.
  • Financial – There is a financial cost to training nurses, retaining qualified nurses would be cheaper for all organisations.
  • Experience – The healthcare system loses valuable experience when nurses leave the service prematurely. The effect of this is felt by the system, organisations, but most importantly by the patients.

5.3.7 In 2019 a paper by Health Education England (2019) discussed the ‘critical’ issue of declining RNLD numbers. Since then, the NHS has produced an ‘All-England plan for learning disability nursing’ to attract, retain, develop and celebrate RNLDs. In addition, there is a plan to recruit 50,000 new nurses into the NHS, which includes RNLDs.

5.3.8 NHS England and NHS Improvement has implemented a series of initiatives under the All-England plan for learning disability nursing ‘celebrate and develop’ pillars, which allowed nurses to see a clear career progression plan. Continuous professional development plans have been put into place for RNLDs as part of the career planning to ensure that staff can enhance their skills and demonstrate their progression.

5.3.9 The investigation was told that the celebrate and develop initiatives for the RNLD profession had been implemented, but that the retention element of the plan is linked to the wider nursing workforce retention strategy. The investigation heard from senior nursing staff in NHS England and NHS Improvement that this remains the most challenging element of the plan.

5.3.10 This is reflected in the numbers of nurses in the tables and graphs above. The All-England plan for learning disability nursing is now in its second year and the retention of RNLD nurses remains a priority. The continual development and funding for this pillar of the plan is essential for its success.

HSIB makes the following safety recommendation

Safety recommendation R/2022/199:

HSIB recommends that NHS England and NHS Improvement develops the ongoing work to improve the retention of learning disability nurses, in line with the intent of the All-England plan for learning disability nursing.

Nursing skillsets

5.3.11 The Confidential Inquiry into premature deaths of people with learning disabilities (Heslop et al, 2013) called for more training for nursing staff in caring for patients with learning disabilities. Within the list of ‘most commonly identified training needs for health and social care staff’ was communication skills. While the report was not about learning disability secure units, the similarities in patients’ needs and care make the learning from the report valid in the secure unit environment.

5.3.12 NHS England and NHS Improvement told the investigation that it was important to further understand the reason why RNLD staff are leaving and to understand more about the professional experience and age group of RNLDs leaving the service.

5.3.13 The differences in approach to communication when caring for patients with a learning disability between RNLDs and the other nursing skillsets is evident and was observed by the investigation. RMH nurses, who are often used to fill RNLD rota gaps in mental health hospitals and learning disability secure units, have a different skill with communication, which is detailed in their field specific competencies. Field specific competencies are set, for each nursing field, by the Nursing and Midwifery Council.

5.3.14 In the RNLD field specific competencies (Nursing and Midwifery Council, 2021a) there are specific communication sections that detail areas such as:

  • augmentative communication
  • making information understandable by and accessible to people with a learning disability
  • assess, communicate, interpret and respond to complex physical and psychological health needs or those in behavioural distress
  • responding to complex behaviours.

5.3.15 Within these competency areas the RNLD nurses must demonstrate the ability to communicate in different ways ensuring information is presented in an understandable way, which enhances the patient’s ability to make informed decisions. The emphasis is in the method of communication and the ability to amend this in a person-centred approach as required.

5.3.16 The RMH field specific competencies (Nursing and Midwifery Council, 2021b) have a different focus, which is highlighted by the terminology used. Competency 3.1 covers the subject of communication; however, the domain title is ‘Working in a recovery focussed way’. Patients in mental distress who are treated by RMH nurses can recover, whereas a learning disability is consistently present and therefore the communication emphasis is different to ensure effective care and support. For patients in secure units with learning disabilities the focus is on rehabilitation and reintegration into society.

5.3.17 The investigation was told, and observed, how RMH nurses are used to cover the RNLD gaps in rotas. However, the differences in the competencies and skillsets of the two specialities may mean that patients do not receive the care that they require.

5.3.18 It should be noted that the delivery of care in wards like a learning disability secure unit, where patients may have very complex needs, is very much a team task with a multidisciplinary team approach. In addition to the RMH and RNLD, the teams would also include the other specialists as listed in 1.3.3. However, the investigation focused on the nursing skillsets that were involved in the delivery of care during medication rounds.

5.3.19 A training needs analysis may be used to identify where training or skills are required to ensure that appropriate care is always delivered. The investigation observed a trust with learning disability secure units that had conducted training for its RMH nurses in communication methods and delivery of information. This ensured that if the wards were short of RNLD staff they could fill the gaps with their RMH nurses in the knowledge that the patients would receive the same level of communication and approach to their care.

5.3.20 Training may be procured and delivered through a variety of means, including continuous professional development funding for nursing staff which is available through Health Education England.

5.3.21 The investigation was also told that Health Education England, as part of the All-England plan for learning disability nursing, was trying to procure a programme which aims to get RNLDs and RMHs to ‘train each other’ to get ‘the best of both worlds’. The investigation observed a site where this was already being conducted and was successful.

HSIB makes the following safety observation

Safety observation O/2022/174:

It may be beneficial if organisations that use mental health nurses to cover shortages of registered learning disability nurses review their clinical model and conduct a training needs analysis. The aim of this would be to identify skills or training requirements, to make sure mental health nurses have the relevant communication methods and strategies to assist patients with learning disabilities in taking their medication.

6 Summary of findings, safety recommendations and safety observations

6.1 Findings

  • The design, layout and décor of wards affected the behaviour of patients and the ‘atmosphere’ on wards.
  • Wards that resembled a living space, rather than a clinical environment, were considered by the investigation to have a calmer, happier atmosphere.
  • Current guidance on ward design and layout did not reflect current clinical thinking in relation to medicine administration areas.
  • The number of learning disability nurses recruited by the NHS each year is currently matched by the number of learning disability nurses leaving the NHS each year.
  • NHS England and NHS Improvement has found the retention aspect of its All-England plan for learning disability nursing (attract, retain, develop, and celebrate) harder to implement than the other three aspects.
  • In the sites visited by the investigation it was common for registered mental health nurses to fill rota gaps for learning disability nurses.
  • The competencies and skills of learning disability nurses and mental health nurses differ when considering how patients are engaged in taking medication. This was rarely considered when using mental health nurses to fill learning disability nurse staffing vacancies.
  • Electronic prescribing and medicines administration (ePMA) systems observed by the investigation were not interoperable with electronic patient records systems.
  • In the observation sites the investigation visited, medicines omissions were not automatically alerted to the prescribing or Responsible Clinician (the clinician with overall responsibility for a patient being treated under the Mental Health Act).
  • The number and descriptions of reasons for medicines omissions varied across ePMA systems and between hospitals.

6.2 Safety recommendations and safety observations

HSIB makes the following safety recommendations

Safety recommendation R/2022/198:

HSIB recommends that NHS England and NHS Improvement reviews and updates all health building guidance relating to learning disability secure units to reflect current clinical guidance on ensuring the design and layout provides a suitable environment for patients and staff.

Safety recommendation R/2022/199:

HSIB recommends that NHS England and NHS Improvement develops the ongoing work to improve the retention of learning disability nurses, in line with the intent of the All-England plan for learning disability nursing.

HSIB makes the following safety observations

Safety observation O/2022/172:

It may be beneficial if electronic prescribing and medicines administration (ePMA) systems were interoperable with electronic patient records (EPR) systems to allow details of medicines omissions to be alerted to staff automatically from the ePMA system to the EPR system.

Safety observation O/2022/173:

It may be beneficial if user menus on electronic prescribing and medicines administration (ePMA) systems provided clear differences and reasoning for the categories used to record medicines omissions.

Safety observation O/2022/174:

It may be beneficial if organisations that use mental health nurses to cover shortages of registered learning disability nurses review their clinical model and conduct a training needs analysis. The aim of this would be to identify skills or training requirements, to make sure mental health nurses have the relevant communication methods and strategies to assist patients with learning disabilities in taking their medication.

7 References

Care Quality Commission. (2019a) Brief guide: monitoring the physical health of people with a learning disability and/or autism on admission to a ward [Online]. Available at https://www.cqc.org.uk/sites/default/files/Brief_guide_physical_health_monitoring_for_people_with_a_LD_autism_v2.pdf (Accessed 16 March 2020).

Care Quality Commission. (2019b) Brief guide: physical healthcare in mental health settings [Online]. Available at https://www.cqc.org.uk/sites/default/files/20191125_900852_briefguide-physical_healthcare_mental_health_settings_v4.pdf (Accessed 16 March 2020).

Care Quality Commission. (2020) Out of sight – who cares? [Online]. Available at https://www.cqc.org.uk/sites/default/files/20201218_rssreview_report.pdf (Accessed 14 January 2022).

Department of Health and Social Care. (2011) Environmental design guide. Adult medium secure services [Online]. Available at https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/215623/dh_126177.pdf (Accessed 7 June 2021).

Department of Health. (2011) Health building note 03-01: adult acute mental health units [Online]. Available at https://www.england.nhs.uk/wp-content/uploads/2021/05/HBN_03-01_Final.pdf (Accessed 17 January 2022).

Emerson, E., Baines, S., Allerton, L. and Welch, V. (2012) Health inequalities and people with learning disabilities in the UK: 2012 [Online]. Available at http://webarchive.nationalarchives.gov.uk/20160704150527/http://www.improvinghealthandlives.org.uk/gsf.php5?f=16453&fv=17942 (Accessed 16 March 2020).

Equality Act 2010 [Online]. Available at https://www.legislation.gov.uk/ukpga/2010/15/contents (Accessed 16 March 2020).

Foundation for People with Learning Disabilities. (2020) Social model of disability [Online]. Available at https://www.mentalhealth.org.uk/learning-disabilities/a-to-z/s/social-model-disability (Accessed 16 March 2020).

Health Education England. (2019) Addressing the needs of the learning disability workforce. [Online]. Available at: https://www.hee.nhs.uk/about-hee/how-we-work/board-meetings-papers/hee-board-meeting-21-may-2019 (Accessed 8 November 2021).

Healthcare Safety Investigation Branch. (2020) Management of venous thromboembolism risk in patients following thrombolysis for an acute stroke [Online]. Available at https://www.hsib.org.uk/investigations-and-reports/management-of-venous-thromboembolism-risk-in-patients-following-thrombolysis-for-an-acute-stroke/ (Accessed 14 January 2022).

Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Final report [Online]. Available at http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf (Accessed 16 March 2020).

Keers, R. N., Plácido, M., Bennett, K., Clayton, K., Brown, P. and Ashcroft, D. M. (2018) What causes medication administration errors in a mental health hospital? [Online]. Available at https://pubmed.ncbi.nlm.nih.gov/30365509/ (Accessed 14 January 2022).

Manias, E., Beanland, C., Riley, R. and Baker, L. (2004) Self-administration of medication in hospital: patents’ perspectives [Online]. Available at https://pubmed.ncbi.nlm.nih.gov/15056333/ (Accessed 30 March 2022).

Mencap. (2019) How common is learning disability? [Online]. Available at https://www.mencap.org.uk/learning-disability-explained/research-and-statistics/how-common-learning-disability (Accessed 8 November 2021).

Mental Capacity Act 2005 [Online]. Available at https://www.legislation.gov.uk/ukpga/2005/9/contents (Accessed 30 June 2020).

Mental Health Act 1983 [Online]. Available at https://www.legislation.gov.uk/ukpga/1983/20/contents (Accessed 30 June 2020).

Mental Health Act 2007 [Online]. Available at https://www.legislation.gov.uk/ukpga/2007/12/contents (Accessed 30 June 2020).

NHS. (2019) Learning Disability Mortality Review (LeDeR) Programme [Online]. Available at: https://www.england.nhs.uk/wp-content/uploads/2019/05/action-from-learning.pdf (Accessed 16 May 2022).

NHS. (2022) Stopping over medication of people with a learning disability, autism or both (STOMP) [Online]. Available at https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/ (Accessed 17 January 2022).

Nursing and Midwifery Council. (2021a) Learning disabilities nursing: field specific competencies [Online]. Available at https://www.nmc.org.uk/globalassets/sitedocuments/registration/toc-14/toc-14-blueprint---learning-disabilities-nursing.pdf (Accessed 14 January 2022).

Nursing and Midwifery Council. (2021b) Mental health nursing: field specific competencies [Online]. Available at https://www.nmc.org.uk/globalassets/sitedocuments/registration/toc-14/toc-14-blueprint---mental-health-nursing.pdf (Accessed 7 March 2022).

Public Health England. (2016a) People with learning disabilities in England 2015: main report [Online]. Available at https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england-2015 (Accessed 16 March 2020).

Public Health England. (2016b) Reasonable adjustments: a legal duty [Online]. Available at https://www.gov.uk/government/publications/reasonable-adjustments-a-legal-duty (Accessed 16 March 2020).

Public Health England. (2016c) Obesity, weight management and people with learning disabilities [Online]. Available at https://www.gov.uk/government/publications/obesity-weight-management-and-people-with-learning-disabilities (Accessed 16 March 2020).

Royal College of Nursing. (2019) Parity of esteem – delivering physical health equality for those with serious mental health needs [Online]. Available at https://www.rcn.org.uk/professional-development/publications/pub-007618 (Accessed 7 March 2022).

Safewards. (n.d.) Resources for Safewards implementation [Online]. Available at https://www.safewards.net/ (Accessed 27 January 2022).

Seorenson, A., Lisby, M., Nielsen, L. P., Klindt Poulsen, B. and Mainz, J. (2013) The medication process in a psychiatric hospital: are errors a potential threat to patient safety? [Online]. Available at https://pubmed.ncbi.nlm.nih.gov/24049464/ (Accessed 14 January 2022).

Social Care Institute for Excellence. (2009) Mental Capacity Act 2005 at a glance [Online]. Available at https://www.scie.org.uk/mca/introduction/mental-capacity-act-2005-at-a-glance (Accessed 16 March 2020).