Learning and Intellectual Disabilities in Secure Environments

Introduction

The Prison Reform Trust has highlighted the size and importance of the problem of learning disabilities also known as intellectual disabilities in prison: 7% of people in contact with the criminal justice system have a learning disability, compared with approximately 2% of the general population. Of those in prison with a learning disability, 85% report struggling to read prison information, 78% report problems filling in forms and 66% report making themselves understood. When including people with learning difficulties as well as learning disabilities, 34% of the prison population fall into this broader category. Of those with learning difficulties, the Prison Reform Trust found that 69% report struggled to read prison information and fill in forms and that 50% struggle to make themselves understood.

Many prisoners with intellectual disability may not have been formally diagnosed or identified. The prison healthcare team has an important part to play in diagnosis and referral for assessment to the mental health team.

Intellectual disability is closely associated with premature death. The LeDeR study is a learning disabilities mortality review in which every death in a person with a learning disability is evaluated. All such deaths should be reported to this study LeDeR.

Introductory Resources

NHS England: Beyond the High Fence. From the unheard voices of people with a learning disability, autism or both.

NHS England published a document in early 2019 called ‘Beyond the High Fence’. It was co-produced with people with a learning disability or autism with lived experience of being in prison or in a secure hospital setting. Problems identified with being in prison included: a lack of nurses with expertise in learning disabilities (LD) and autism, a lack of prison staff understanding of LD and autism, excessively strict rules and frequent restraints, a lack of emotional support, bullying by other prisoners and the experience of prison resulting in a detrimental impact on mental health. Although experience of secure hospitals was overall better than being in prison, problems associated with hospitals included: poor handover from prison, over-medication with psychotropic drugs, being locked up for years longer than would have been the case in prison, institutionalisation and loss of confidence about independence, delays between parole board hearings and mental health tribunals.

Neisha Betts, Project Manager, Health & Justice, NHS England & NHS Improvement and Ann Norman RCN Criminal Justice nursing adviser at the Royal College of Nursing & learning disability nursing UK were approached by the RCGP Spotlight Project team for their expert advice on learning disabilities in the secure environment. A comprehensive toolkit produced by HMPPS: Making services work for people with learning disabilities and challenges (LDC), a toolkit for prisons and probation staff is available. There are opportunities for ‘lunchtime learning’ and multi-disciplinary team discussion with the aim of raising awareness and standards of care for people with LD in secure environments.

Department of Health and Social Care. Betts, N. Positive Practice, Positive Outcomes, A handbook for Professionals in Criminal Justice System working with Offenders  with Learning Disabilities, 2011 Edition.

This publication has concise chapters explaining learning disabilities (LD) definitions, LD and the Criminal Justice System, health and social care needs of people with LD, legislation and the key principles of effective communication. The role and importance of Community LD Teams, Criminal Justice Liaison and Diversion Teams, LD partnership boards, third sector peer advocacy groups and professional advocacy schemes are introduced. There are separate chapters addressing specific issues in police custody, courts, prison and probation services and mention of PSO/PSI relevant to people with LD. There are helpful case studies, Positive Practice examples and a section with Practical Actions in each chapter. There is also a useful list of additional resources at the end of the publication.

Multiple disciplinary team starting points

NHS England. Betts, N. Equal Access, Equal Care. Guidance for Prison Healthcare Staff treating Patients with Learning Disabilities (2015)

This publication identifies a range of important issues relating to caring for people in prison with LD. It covers the definition of LD, considerations around capacity, common health conditions, social care provision and benefits of specialist LD nurses. Sections 10-13 cover recommendations for healthcare staff relating to assessments and health action planning, reasonable adjustments, communication, care pathways, transitions and partnership working. There are links to useful resources and appendices covering communication tips and a checklist for ‘Gold Standard’ provision.

 Practice development considerations

Consider multiple disciplinary team capacity

Consider as a multi-disciplinary team-Reasonable adjustments

Consider as a multi-disciplinary team-Transfer of care

Public Health England Guidance relating to Learning Disabilities

Public Health England has published a collection of guides on reasonable adjustments for people with a learning disability.

Nursing in practice Consider as a multi-disciplinary team Care provision with dignity

Assessment

National Institute for Health and Care Excellence (2017) Learning disabilities: identifying and managing mental health problems. Quality standard QS142

  1. There are five quality statements in this quality standard: people with learning disabilities (LD) should have: annual health check, including review of mental health problems
  2. mental health assessment (if needed) by someone with expertise in mental health problems in LD,
  3. key worker if learning disability and severe mental illness (SMI)*
  4. tailored psychological interventions (if required),
  5. annual documentation of reason for continuing antipsychotic medication (if not stopped).

*SMI: severe depression/anxiety impacting on functioning; psychosis; schizophrenia; bipolar disorder; eating disorder; personality disorder; schizoaffective disorder

NICE guideline: NG54 (2016) Mental health problems in people with learning disabilities: prevention, assessment and management.

The guideline contains advice about communication, capacity, annual health checks and behaviour changes that may assist identification of a mental health problem in a person with LD. It covers assessment with appropriate expertise, and the need to be aware of physical health, sensory or cognitive problems either masking or underlying a mental health issue. It identifies the importance of using adapted or specific tools, risk assessments that include identification of vulnerability and the need for safeguarding protocols, and risk management plans that set out individual, social and environmental interventions to reduce risk. It outlines what should be included in a mental health care plan, adaptations to and specific psychological interventions, pharmacological interventions (to be started only by specialists in mental health/LD) and occupational interventions.  

Assessment Practice Development and audit considerations

Communication and Care

National Institute for Health and Care Excellence (2015) Learning disability: behaviour that challenges. Quality standard QS101 

There are 12 quality statements in this quality standard. Behaviour that challenges is defined as: Behaviour of such an intensity, frequency or duration as to threaten quality of life and/or physical safety of the person, or others around them (including behaviour likely to severely limit, or result in being denied access to/use of ordinary community facilities).

Requirements of healthcare providers include: identifying lead practitioner to coordinate care; involving families and carers in developing care/support plan; annual health check with GP to identify physical illness early; initial assessment of behaviour to identify triggers, function and environmental causes of behaviour; opportunities for meaningful personalised daily activities (daily activity schedule, behaviour support plan); access to specialist behavioural support (e.g social care providers, community LD teams links on release); support (planned for release) with choice of housing; documented review of person each time restrictive intervention; ensuring psychosocial interventions 1st line (before use of antipsychotics); ensuring medication review (multi-disciplinary) 12/52 after starting antipsychotics and every 6/12.

Royal College of Nursing (2017) Dignity in health care for people with learning disabilities (3rd Edition)

Developed by the RCN LD Nursing Forum with the input of an expert panel of people with learning disabilities, this guidance is designed to improve dignity in healthcare provision for people with LD. The definition of dignity is broken down into key themes identified by the expert panel: understanding my health; respect me; get to know me; having choices and making decisions; feeling safe; communicating with me. The publication gives examples of good practice and also lists medical problems affecting people with LD more commonly than the general population. There is a list of resources and references and an appendix with a Bill of Rights.

Royal College of Nursing (2017) The needs of people with learning disabilities: what pre-registration students should know, London: RCN

This publication was written to identify competencies required by pre-registration nursing students regarding the health needs of people with a LD.

Nursing in Practice (2017). Norman A. Providing support to people with learning disabilities in primary care

This brief article explains issues affecting people with LD, reasonable adjustments that can be made for their appointments (length, timing, communication, EasyRead written information), common health issues and the importance of patient autonomy.

Public Health England Guidance relating to Learning Disabilities

Public Health England has published a collection of guides on reasonable adjustments for people with a learning disability.

Nursing in practice Consider as a multi-disciplinary team Care provision with dignity

Growing Older with Learning Disabilities

NICE guideline: NG96: Care and support of people growing older with learning disabilities 2018

The NG96 guideline covers the identification of changing needs, planning for the future, and delivering services including health, social care and housing for people growing older with LD. There is guidance about recording actions identified in the annual health check, reasonable adjustments to assist with appointments, and planning for hospital transfers, including the use of a hospital passport. Skills, knowledge and training provision for staff are covered.

NICE: QS187:  Learning disability: care and support of people growing older (2019)

There are five quality statements in QS187: Each person growing older with LD should have: a named lead practitioner to co-ordinate care, a person-centred needs assessment, future care planning and reviews, an annual health check (to inform health action plan), a meeting with hospital staff prior to planned admissions (use of hospital passport).

Consider as a multi-disciplinary team Future planning for older people with LD 

Further resources:

NICE: Support for adults with learning disabilities as they grow older - What to expect

This is a short video for older patients with LD. Below is the link to an EasyRead version of the guideline.

NICE: People growing older with learning disabilities.

Easy Read version of NICE guideline NG96 (2018)

Learning Disabilities and Substance Misuse

Public Health England (PHE) Guidance relating to Learning Disabilities

Public Health England has published a collection of guides on reasonable adjustments for people with a learning disability.

PHE: Substance misuse in people with learning disabilities: reasonable adjustments guidance (2016)

This guidance advocates a personalised approach to providing substance misuse services to people with LD, tailoring interventions to meet individual needs, including communication needs. It suggests that people with LD may benefit more from a 1:1 approach rather than group work. In the guidance, there are links to accessible resources for people with LD using substance misuse services.

Substance misuse and LD clinical and non-clinical support considerations

Medication and Learning Disabilities

PHE: Pharmacy and people with learning disabilities: making reasonable adjustments to services (2017) PHE publications gateway number 2017086HTML

This guidance is useful for pharmacy teams working on site in secure environments and for community pharmacy providers contracted to provide services in secure environments. It includes summarised points for consideration including adjustments to make that will enhance management and monitoring of medicines for people with LD, links to resources provided by RPS and CPPE and case studies with examples of reasonable adjustments.

Medicines management and pharmacy team discussion

NHS England (2017) Stopping over-medication of people with a learning disability, autism or both (STOMP)

This publication was written to highlight the importance of identifying and reviewing people with learning disability or autism who are prescribed antipsychotic medication in order to reduce and stop inappropriate prescribing for challenging behaviour. It provides an algorithm for review and reduction of antipsychotics, suggestions for practices, examples of practice-wide approaches and individual case studies.

STOMP practice development considerations

Further References

Further Resources

Communication guidance and links

The links below are provided to assist the healthcare team in supporting people with LD who have difficulties with communication, accessing health information and appointments.

Appendix

Caring for people with learning disabilities: Crib cards

Kindly provided by Ann Norman, Royal College of Nursing

In this section, there are definitions and short explanations that will be useful to share with, for example, nursing students and other health professionals new to working with people with learning disabilities. The 'bite-size' essential information points can be transferred onto crib cards. 

What is a learning disability?

A learning disability affects the way a person understands information and how they communicate. Individuals may have difficulty in:

  • understanding new or complex information
  • learning new skills
  • coping independently.

They often have significantly higher health needs, which are commonly unmet and not recognised, and result in premature deaths.

Duty of care

All health services must ensure that reasonable adjustments are made to ensure that people with a learning disability have equal access to health care. Recommended adjustments include:

  • information in a format accessible to the person
  • longer appointment times
  • managing environmental factors
  • providing funded additional support
  • undertake an assessment of risks and support needs by speaking to the person and others that know them well

Diagnostic over shadowing

This occurs when a clinician attributes symptoms or behaviours to a person’s learning disability rather than another medical cause.

Consent

No-one can consent on behalf of an adult with a learning disability unless they have been appointed as a deputy by the Court of Protection. Parents or support staff should not be asked to consent on the person’s behalf. Instead the Best Interest process must be followed if an individual is assessed as unable to make a decision in line with Mental Capacity Act 2005.

Communication

It is important that you listen to the person, their family members and/or care staff. And ensure information is provided in the person’s preferred format. This may include, easy-read content, large print text, sign language and/or pictures. Review the person’s records to ensure the correct method is used.

Hospital passports

The person using the health service may be able to provide you with their hospital passport which will contain vital information on how best to support them.

Discharge planning

There are many different living arrangements, so no assumptions should be made about the type of support a person receives. Establish where the person lives, who they live with, what support they receive, and what skills their support has. Agree the discharge plan with all who will be involved in supporting them. They may have a health action plan where their discharge health needs can be added. Registered learning disability nurses may be available as hospital liaison nurse or community nurses to offer support and assistance.

Abbreviations:

LD – Learning Disability

NG – NICE Guideline

QS – Quality Standard

PHE – Public Health England

NHS – National Health Service

MCA – Mental Capacity Act

OMU – Offender Management Unit

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