Reports & recommendations

The implementation of the following recommendations should be monitored by the DoH and progress should be reported to the DoH Permanent Secretary. To ensure progress is made, an implementation consultation group, which should include service users and the relatives of service users, should be created and be involved in the monitoring and reporting process.

The DoH should indicate publicly within six months of this report which recommendations it accepts and those it does not accept (and why). This should include the recommendations for all organisations for which the DoH holds primary responsibility. In relation to those recommendations that are accepted, any not implemented, or where there is a failure substantially to progress the recommendation within 12 months, should be brought to the attention of the DoH Permanent Secretary.

With the exception of Recommendations 88 and 89 (R88 & R89) any other organisation that does not accept a recommendation for which it is named as responsible, should write within three months of this report to the DoH Permanent Secretary to explain why it does not accept the recommendation. In respect of any recommendation not implemented or where there is a failure substantially to progress the recommendation within 12 months, that should be brought to the attention of both the DoH Permanent Secretary and the Minister of Health.

Prior to the decision to move a service user to a different facility there must be discussion with the staff regularly caring for them, the relevant multidisciplinary team (MDT), the person's family where practicable and the person themselves where possible, to consult with them about the potential move.

Any service user with a learning disability should have a named person (a key individual) responsible for their care plans and this person should be involved in and record the discussion with the family and the discussion with any relevant MDT and sign off the final decision. (And see Recommendation 99).

The named person responsible for the care plan must both review and approve the preparation of anyone with a learning disability transferring to a new environment within or external to the Trust in which they are cared for. This approval must be recorded in the healthcare notes.

Medication should never be used simply to subdue people in the absence of other forms of treatment and good quality care. DoH should issue a regional audit pro forma to measure compliance with National Institute for Health and Care Excellence (NICE) guidelines and Trusts should conduct quarterly audits. These audits should be part of an RQIA review as well as an agenda item at the accountability meetings with the Permanent Secretary of Health.

Each facility or service should have an integrated workforce plan that includes all allied health professionals (AHPs) and all staff involved in patient care. This should be based upon the assessed needs of the service user and must include protected time for staff to consult with each other.

It is critical for the wellbeing of people with learning disabilities and autistic people that they are well supported by, and have access to, AHPs including psychologists, speech and language therapists (SALTs), occupational therapists (OTs), podiatrists and dieticians. These AHPs need to be well integrated into daily life in service users’ homes and their recommendations, including positive behaviour support plans, need to form part of care plans.

Like anyone else, people with learning disabilities and autistic people require a variety of meaningful activities on a daily basis to enhance their quality of life. Every person should have an individualised activity schedule, including leisure activities and skill-building activities, and staff should be trained in ‘active support’ so that they can deliver this.

Care plans must be live, person-centred documents. This requires joint ownership with people with learning disabilities and their families rather than simply professional records. While professionals necessarily lead assessments, families should be actively involved in identifying needs. Resulting care plans should be shared with the service user themselves (where appropriate) and families, who should be able to challenge and further contribute to them. People with learning disabilities and/or families should receive a copy of the care plan at agreed intervals and whenever significant changes occur.

Observation records detailing all use of restraint and seclusion should be completed by the individual observing. In HSCT facilities, if the observer is unregistered, a registered staff member should countersign the entry rather than create a second-hand record. In private and 3rd sector facilities the individual in charge of the shift must countersign and report to the Registered Home Manager at the earliest reasonable opportunity. Sufficient electronic terminals should be available to ensure easy access for inputting records for all staff.

Care plans should be regularly evaluated to assess their impact on people’s wellbeing. This is the responsibility of the care team and should include formal, documented input from the service user themselves (where appropriate) and families. Additionally, there should be regular independent reviews overseen by the Public Health Agency (PHA) to assess any deviation from best practice, both in the written plan and in daily care delivery. These reviews should be shared with people themselves and families.

Creating a co-produced care environment, where people with learning disabilities, families and professionals work collaboratively, requires a fundamental shift in practice. As well as organisational commitments, staff will need education and facilitation to transition to this way of working. Specific training in co-production should be designed and delivered to all those caring for people with learning disabilities and autistic people. Service users and families should be offered the opportunity to attend where appropriate.

Specific processes rather than policies should be designed to ensure there is good communication with families and carers to ensure co-production takes place and is effective. Evidence of co-production should be an element of clinical audit of people’s healthcare records.

The 2006 Quality Standards for Health and Social Care should be amended to require HSC organisations to provide all people with learning disabilities, and if they lack capacity, their family or advocate, with the opportunity to share in all decision-making about their care plan, including assessments, treatment plans, evaluations of care and placements. The RQIA should include performance against the new standard in its announced inspections.

Properly trained independent advocates should be made available to service users and families to support effective communication with staff and for raising concerns and complaints. DoH/SPPG should specify the level of advocacy services required for people with learning disabilities in the annual commissioning plan.

All providers of learning disability services should appoint a human rights officer, as seen in Sheffield Health Partnership University NHS Foundation Trust and Greater Manchester Mental Health NHS Foundation Trust. This role should support staff and monitor the progress of the service towards a human rights-based, co-produced service.

All organisations taking responsibility for property and/or finance for people with learning disabilities and autistic people should institute regular checks of adherence to their policies. This includes local checks, corporate checks and periodic internal audit checks.

Information about the use of cash and other property and six-monthly accounts (or such period as appropriate upon discharge of the person) should be available to the service user concerned where possible and to the family where appropriate. Where appropriate an Easy Read version should be made available.

The Restraint Reduction Network identifies six principles to avoid the use of restrictive practice. While there is evidence that some Trusts have adopted these principles, further action is needed to ensure the principles are fully embedded. These principles must be embedded in policies and practices. The principles are: i. Organisational commitment – led by executive directors ii. Performance monitoring – using metrics to track restrictive practices iii. Human rights-based education – comprehensive training for staff iv. Personalised reduction plans – tailored strategies for individual patients v. Service user involvement – engaging patients in shaping restraint reduction strategies vi. Post-incident support and learning – structured debriefing and reflection for both patients and staff

All facilities providing residential services for people with learning disabilities and autistic people should provide sufficient psychology input for each patient, to obviate the need for restrictive practices in all but the most exceptional circumstances.

HSCTs should implement a comprehensive set of balanced performance measures across all services for people with learning disabilities, including those commissioned from third-party providers. These measures should include: Trends in the use of restrictive practices; Trends of aggressive behaviour incidents, including peer-on-peer aggression and patient-on-staff aggression; Positive experience, including quality of life measures.

To ensure meaningful interpretation of these trends, all HSCTs should adopt statistical process control (SPC) charts, as developed by Walter Shewhart in 1939. SPC charts use calculated upper and lower control limits to distinguish between normal variation in a stable process and significant long-term shifts in performance. These charts provide a clear visual flag as to when further investigation is warranted, promoting a data-driven approach to service improvement.

All HSCTs should develop two clear operational debriefing policies. The first should apply to both staff and people with learning disabilities and autistic people who are involved in, or affected by, aggressive behaviour. A separate debriefing after any restraint or seclusion incident should also be developed. This should include both staff and people with learning disabilities and autistic people, and should specify that debriefing should be facilitated by staff outside of the immediate service delivery unit.

Given the elevated risk of inappropriate use of restrictive practices with individuals with learning disabilities and/or autistic people, BHSCT and all HSCTs should automatically place any inpatient facility or facility for people with challenging behaviour on its risk register.

Use of seclusion should be considered an extraordinary and exceptional intervention. Each intervention should be subject to a serious event audit, conducted by a professional outside the service provider’s learning disabilities services. This audit should be shared with the person’s next of kin and the RQIA.

People with learning disabilities and autistic people and their families should be provided with clear, written information outlining the available pathways for raising concerns. This information should clearly distinguish between an enquiry, a concern and a complaint. Individuals should then be asked to select the option that they feel best aligns with their needs. This selection should be recorded at ward or residential level and confirmed with the individual raising the issue.

In HSCTs all complaints, regardless of whether they are resolved immediately at ward level, should be recorded in the Trust’s electronic complaints management system. In private and third sector facilities the Registered Home Manager should be informed of all concerns raised and must record such concerns and any action taken.

Complaints alone are a poor indicator of quality of care, particularly in a vulnerable population such as those admitted to MAH. A low volume or absence of complaints does not necessarily indicate that care provided is good or satisfactory. Organisations must find proactive approaches to assure themselves and the public that high standards of care are being provided, such as using a validated system to explore the experience of people with learning disabilities and autistic people on a quarterly basis, including regular person and family surveys or interviews. In a learning disability setting, interviewers must be trained in effective methods of communication. Complaints should be analysed for themes quarterly and triangulated with themes from incident reporting and RQIA inspection reports, and displayed on a public dashboard as well as online.

Incident reports of any violent or aggressive behaviour by either people with learning disabilities and autistic people or staff should be analysed and trend data reported on every HSCT Board’s quality and safety dashboard. In private and third sector care a similar system must be in place.

Where people with learning disabilities can participate, the provider should actively seek their lived experience feedback in relation to staff attitudes and behaviours on a quarterly basis through an external and independent agency (perhaps to be undertaken by the PCC), and report this to a public part of a Board-level committee and also publish it on the provider’s website.

The provider should actively seek family or carer feedback on the service user’s experience on a quarterly basis via an external agency and report the findings to the public part of a Board-level committee minutes (where these exist) and publish them on the provider’s website.

Hospital settings for people with learning disabilities and autistic people are very high-risk environments for abuse and poor practice, partly because those admitted tend to show high rates of challenging behaviour. Therefore, all such settings (including community-based settings for those with challenging behaviour) should consider the installation of CCTV in the public areas, for the protection of vulnerable individuals and for staff. There should be appropriate consultation with families and the service users themselves as to the installation and use of CCTV in any facility where those with learning disabilities and with challenging behaviours are resident.

Guidelines should be agreed in relation to providing CCTV systems in residential and day services where requested. Guidelines should be agreed by HSCTs, resettlement service providers, families and people with learning disabilities about the use of CCTV in public areas and in some circumstances in private areas such as bedrooms and bathrooms, alongside strict controls on access to the footage.

The installation of CCTV in non-public areas should be considered only where this will be in the best interests of the individual service user and following full consultation taking the views of relevant carers, service users (where possible) and relatives fully into account.

All service users and their families should have the CCTV explained to them in easily understood language and with easy access materials, so that they are aware that it is for their protection, and so that they understand when it can be accessed and by whom.

Metrics on both child and adult safeguarding processes should be reported monthly via a safeguarding dashboard, with the same visibility and status as monitoring elective surgery or emergency department waiting times. These metrics should be publicly available.

The dashboard should include the number of allegations reported, together with the screening decision (referral to the Adult Safeguarding Gateway, referral to the joint protocol or no further action). Particular scrutiny should be given to allegations of abuse by staff that are screened out due to lack of supporting evidence. The DoH Northern Ireland should develop such a dashboard to be used across the health and social care sector within six months.

A quarterly multidisciplinary audit of 10% of safeguarding files per ward or residential unit should be conducted. Findings must be integrated with incident data and reported to the Executive Team, NEDs and the Strategic Planning and Performance Group (SPPG).

Where there is evidence or suspicion of widespread abuse involving multiple staff and residents, focusing solely on individual perpetrators is insufficient. An independent review of enabling conditions should be conducted separately from case-specific or PSNI investigations. This review must be led by investigators with appropriate expertise in safety science to support rapid system-level changes. PHA, in conjunction with the Chief Social Work Officer (CSWO), should issue guidance for such reviews.

Protection plans should include an assessment of risks arising from the plan itself. Where multiple protection plans are in place for vulnerable adults within a single unit, cumulative risks arising from those individual protection plans across all residents must also be evaluated.

Staffing should be based on service user needs rather than a fixed budget, using daily acuity measures designed specifically for units caring for people with learning disabilities. These should include enhanced supervision requirements, personal care support and therapeutic activities. Service managers should receive weekly reports of data of the staff hours needed per day per ward or facility. Monthly reports of these figures should be published by ward or facility by the Department of Health (DoH). This should apply to all facilities in which people with learning disabilities are resident, including private and third sector provision.

Clinical supervision (where individuals’ practice with individual patients is discussed) should be mandatory for all ward staff, including healthcare assistants, and should occur monthly. Clinical supervisors should be trained in the conduct of sessions and the outcomes for continuing development should be recorded on personal files.

All healthcare assistants working with people with learning disabilities and autistic people should be provided with training, which should include specialist learning disability training as well as basic positive behaviour support (PBS). They should be required to complete successfully an examined course (with particular focus on behaviours that challenge) within six months of appointment, in addition to their induction. Consideration should be given to creating a Northern Ireland-wide course.

Consideration should be given to enhancing the post of healthcare assistant by creating Band 4 associate practitioners in both hospital and community settings in order to increase the skills of those providing the majority of direct care, and also to provide a career pathway that will retain these staff. Such posts must be in addition to, and not a substitution for, the correct number of registered nurses.

There must be understanding of both individual untoward events but also (and more importantly) systems and trends. Creating and maintaining effective governance for complex systems requires specialist skills. While this is largely recognised within finance governance, only superficial consideration is given to clinical and social care governance. Boards should appoint an Executive Director of Clinical and Social Care Governance because of their specialist training and expertise in this area (rather than assign it to the existing clinical or social care leads and then provide top-up training). The DoH must produce guidance in relation to the necessary competency and skills for this role.

NEDs should be selected for their expertise across a range of skills and at least one should have extensive experience of clinical or social care governance and be appointed as a senior independent director with that responsibility. The DoH should make training in Board-level clinical and social governance available to all NEDs.

HSCT Board audit committees should consider all internal audit recommendations and require directorates to provide updates on implementation three months, six months and one year after the internal audit report is received, and three monthly thereafter if still not fully implemented.

The DoH should commission the HSC Leadership Centre to develop a learning framework for all Board members. All Trust Board directors should be required to undertake an examined course in governance (including both financial and clinical/social care governance, including patient safety). Annual assessments as to the effectiveness of Board performance should be undertaken by PHA.

Consideration should be given to the creation of a role for a NED in each HSCT with the specific remit to receive confidential reports from members of staff. The individual should receive training via a programme focused on safeguarding and patient safety. It should be the duty of that NED to actively to seek out information and to ensure there are various routes by which staff at every level can report, anonymously if necessary, concerning behaviour or issues that could put patient safety at risk.

RQIA should consider developing a risk-based way of predicting which services are in difficulty. It is well known that certain aspects of services tend to be associated with abuse: service users who are vulnerable, who have few communication skills; service users with behaviour that challenges; services with poorly trained staff, insufficient staff, poor staff management, high sickness levels and high use of agency staff. Every inspection in services for these vulnerable populations must include a line of enquiry focusing on the possibility of abuse. This would be informed by a live dashboard, which should include warning signs such as staff shortages, the high use of agency staff and peer-on-peer abuse, by way of example.

The PCC should take further steps to ensure that health service users, including carers and families of people with learning disabilities and autistic people, are aware of its statutory functions and the assistance it is required to provide with respect to complaints.

PSNI needs to improve its processes for the review of live investigation files, and have an effective escalation process when progress is delayed. PSNI should consider how it assures the quality of the reviews of live investigation files. Senior officers should assess a significant sample of reviews to ensure all possible action has been taken to conclude the investigation and that delays are escalated promptly.

A regional standing committee of people with learning disabilities and autistic people and their relatives should be established, to be consulted by the DoH and other bodies on services for learning disabilities and autistic people. This should be funded by DoH and potentially facilitated by the PCC. The participants in this committee should be reimbursed for taking part.

There needs to be a recognition that those service users in Northern Ireland yet to be resettled (if there are any by the time of publication of this report) will require a higher level of funding due to their needs and behaviour that challenges. A highly qualified team must be formed to progress their resettlement. An example of such a model might be the special development team in England.

There needs to be a clear regional view of all services available in the community, especially given the variety of services and providers of services now available. The service map recommended in 2022 must be regularly updated to reflect available services and vacancies, searchable by both families and care managers.

There will be a continuing need, which must be met, for new and ongoing community-based support for young people and adults with learning disabilities and autistic people whose families become unable to cope full time. This means there is a continuing need for a range of types of provision and well-coordinated support services in addition to the usual community learning disability team. These will include intensive support teams, community forensic teams, assessment and treatment services in the community, and emergency respite services. The availability of these must be monitored and published on the DoH website. These teams and services, some of which exist in parts of Northern Ireland but not all, need to have open referral systems, so that families can self-refer.

HSCTs must develop registers of those at risk of requiring unplanned inpatient treatment, similar to the NHS England ‘blue light protocol’, in order to target community resources efficiently and prevent the person having to leave their home in the community.

SPPG must ensure that people with learning disabilities and autistic people have access to mainstream (i.e. the same services that are available to those without a learning disability) mental health services, with appropriate adjustments for their disabilities.

The SPPG must ensure that commissioning includes provision for people with learning disabilities and autistic people cared for in any facility to have fully funded access to primary care services. These may be provided by LD nurse practitioners/LD nurse consultants. Local commissioning groups (LCGs) should monitor this provision.

Communication between the HSCTs and/or resettlement service providers and families and people with learning disabilities should be more open and transparent. Each service user/family should have appointed to them a key individual who is responsible for ensuring both the family and the service user are consulted and kept informed in relation to considerations of resettlement, including the staff training of the proposed resettlement. The key individual should also be in a position to assist with advice on direct payments. (See also Recommendation 5).

Trusts, private and 3rd sector care providers must ensure that person-centred day activities (including supported employment where appropriate) should be available and offered to all people with learning disabilities and autistic people. This should be monitored through Trust delivery plans.

Planning and commissioning services for people with learning disabilities and autistic people should be done as a single process across the whole system (including primary care, housing, benefits and independent and third sector providers of services). There must be a risk assessment that assesses how the impact of change in one part of the system impacts on another part (e.g. how failure to invest in community early intervention services impacts on resettlement). The risk assessment should be multi-agency and include housing, private and third sector providers as well as health and social care.

DoH should establish a comprehensive, centralised workforce intelligence function, similar to those in the rest of the UK, within 12 months of the publication of this report. The learning disability service model must include a fully funded, comprehensive workforce model, together with a transition plan to enable the current workforce to deliver the new model.

A statutory duty of candour should now be enacted in Northern Ireland so that: (i) Every healthcare organisation and everyone working for them must be open and honest in all their dealings with service users and the public. (ii) Where harm has been or may have been caused to a service user by an act or omission of the organisation or its staff, the service user (or duly authorised representative) should be informed of the incident and given a full and honest explanation of the circumstances. (iii) Full and honest answers must be given to any question reasonably asked about treatment by a service user (or duly authorised representative). (iv) Any statement made to a regulator or other individual acting pursuant to statutory duty must be truthful and not misleading by omission. (v) Any public statement made by a healthcare organisation about its performance must be truthful and not misleading by omission. (vi) Healthcare organisations that believe or suspect that treatment or care provided by them has caused harm to a service user must inform that service user (or duly authorised representative) as soon as is practicable and provide a full and honest explanation of the circumstances. (vii) Registered clinicians and other registered healthcare professionals who believe or suspect that treatment or care provided to a service user by, or on behalf of, any healthcare organisation by which they are employed has caused harm to the service user must report their belief or suspicion to their employer as soon as is reasonably practicable.

Consideration should be given to a different approach to the prosecution of organisations for failing to prevent deliberate harm being caused by their employees, such as by applying a reverse burden to the offence. This would require any organisation, such as an HSCT, to prove that, where deliberate harm had been caused to a service user by any individual employed by that organisation, that it had taken all reasonable and practicable steps to prevent such deliberate harm to service users, or alternatively, that that it was not practicable or not reasonably practicable to do more than was in fact done.