They are also in a key position to be able to identify pain behaviours and identify when their loved ones are in distress. However, despite this vital role, family members' views and their valuable contributions can get lost during the pain assessment.

It is essential to carry out a pain assessment, drawing not only on their experience of caring for their loved one but also on their needs. The family members may also be experiencing the distress of pain, and we must recognise the impact it can also have on them.

People with learning disabilities may live in different settings which require varying levels of support. However, many of the principles and tools used to perform the assessment can be applied in any setting. Across these different settings, there will be unique challenges that can influence nurses’ ability to perform a comprehensive pain assessment.

Delegated health care is an important aspect in community settings, especially in social care, such as care homes without (or with limited) nursing oversight.

In the UK, the most common setting for people with a learning disability is supported living. The ‘Transforming Care’ programme (PDF) aimed to shift care from institutional settings to community-based support, emphasising supported living arrangements.

This approach focuses on providing personalised support that enables individuals to live independently within the community. This may bring challenges in delivering care in the community, such as communicating how to manage multiple medications or delivering care in remote and rural areas.

Ways around this may include the use of other modes of communication to facilitate timely access to the most appropriate assessment and care, such as telephone, email, text messages, ‘Near Me’ consultations and video calls on mobiles or digital devices.

Staff working in acute hospitals will at some point care for a person with a learning disability who presents acutely unwell. It is recognised that people with learning disabilities have a long-term health condition or life-limiting illness and are likely to be hospitalised.

People with profound learning and multiple disabilities are at risk of pain as they often experience complex and severe health conditions and may be more likely to undergo surgical procedures that cause pain.

It is particularly difficult to know if someone is in pain if they do not communicate verbally. Within the acute hospital setting, it can be challenging to have consistency of staff caring for those with a learning disability.

This makes it challenging to identify the person's normal behaviour and to determine when pain might be causing a change when they do not communicate verbally. In these situations, it is important to utilise the wider multidisciplinary team (MDT) and to seek support from the specialist learning disabilities nurse.

It has been documented that people with learning disabilities may receive poor care in acute settings due to a lack of knowledge or confidence on the part of health care staff. As a result, following the Confidential Inquiry into Premature Deaths of People with Learning disabilities (CIPOLD 2013) (PDF), recommendations were made for acute hospitals to employ learning disability liaison nurses to provide specialist advice and support.

Learning disabilities acute liaison teams aim to support informed, equitable, efficient and effective care to adults with learning disabilities through partnership working. Nurses should recognise that patients with learning disability are vulnerable and may be unable to communicate their needs independently. There is also a risk that without the right care, their health problems—many of which cause pain—may go unrecognised and untreated.

Secure care is a term used to cover a range of services associated with the Mental Health Act and/or the Criminal Justice System. They can be described as low, medium and high secure forensic services, which are commissioned and provided by the NHS.

The key challenge within the prison population is identifying a person with a learning disability. Some individuals may be functioning at a high level, so they could be masking their learning disability, and in turn, their unmet health needs.

It is recognised that a significant proportion of the prison population have what is described as a ‘communication difficulty’, with a high proportion of those with an associated learning disability.

Factors to consider are:

• Not wishing to be associated or identified as having a learning disability or communication difficulty, as that will suggest a level of vulnerability.
• Not wishing to stand out or attract attention, so complying with prison rules and peer group norms that consequently may increase the experience of pain.
• Not recognising or being able to navigate health care support, so carrying high levels of unmet need that will be associated with pain.
• Not being able to find the expressive language and skills to identify pain, so the experience of pain is left unmet.
• Pain relief within a secure setting may be sought to mask or self-medicate a mental health concern, an established substance use concern, or for recreational use.

Pain relief can be a currency within secure settings, so analgesics may be sought to pass on to others. There is also the risk of a person with a learning disability being coerced into seeking analgesics for another person.

Supporting people with a learning disability in secure settings can bring some unique challenges when trying to access care. The Queens Nursing Institute (QNI) Scotland has developed the Think Could resource, which highlights these challenges and provides a framework for supporting those with a learning disability in secure settings.

A significant number of children supported in hospice settings have severe cognitive impairment. It is recognised that these children have painful experiences more frequently than healthy children, due to their chronic conditions, disabilities and associated diseases (for example, muscular contractures, spasticity, chronic constipation, gastro-oesophageal reflux, hip-luxation, bone fractures, tooth decay).

Children with intellectual and developmental disability (IDD) are more likely to suffer pain compared to their peers without disability. Nevertheless, the difficulty in assessing pain in this population has resulted in underdiagnosis and undertreatment. This means that a large proportion of children with intellectual or developmental disability are in pain most of the time.

The identification, assessment and treatment of pain in children with severe neurologic impairment (SNI) is considered a significant challenge, even for clinicians with expertise in symptom treatment.

Although challenging, higher staffing levels in the hospice setting, in contrast to the acute hospital setting, often mean there is more opportunity to observe the child’s behaviours and recognise subtle changes over time that may be missed in acute settings.

Staff in adult hospices may also care for people with learning disabilities at the end of life and will benefit from using the tools suggested in this resource.

Women with learning disabilities receiving maternity care may experience pain differently or at unexpected times. This pain could be a normal part of physiological processes or a sign of complications requiring urgent attention from a suitably qualified health care professional, such as a midwife.

Where possible, care planning, information sharing and preferences should start in the antenatal period. Many organisations use a hospital passport or similar document to support individualised care and multidisciplinary team communication.

Further information

• NICE: Antenatal care recommendations
• NICE: Intrapartum care recommendations
• NICE: Postnatal care recommendations
• Obstetric Anaesthetists’ Association: LabourPains resources
• Birthrights: Human rights in maternity care

In addition to labour pain, it is also helpful to provide additional sensitivity around procedural pain that may be experienced during specific interventions or treatments for women, for example, hysteroscopy or cervical smear.

Although there is no formally agreed definition of procedural pain, staff should acknowledge it when it is expected during procedures and take appropriate support and action to eliminate distress (RCN 2024).

Listen to the podcast episode Sharp Scatch, where Sandra Campbell is joined by Felicia Cox and Paul Gowen as they share their lived experiences of procedural-related pain while undergoing cancer treatment.

Please note: This podcast explores their personal experiences of having cancer treatment and their experiences of pain whilst having various procedures.