22/125 Improving access and use of services for people with speech, language, and communication needs - supporting information

Background

The right to communicate, to seek and impart information and ideas, and to have your mode of communication respected is enshrined in the Universal Declaration of Human Rights, 1948. There are several policies guiding health and social care services in the UK, such as the Equality Act 2010 which states that public sector organisations must make changes in their approach or provision to ensure that services are accessible to all, including those with disabilities. The Accessible Information Standard, by law, requires all organisations that provide NHS or adult social care to follow a consistent approach in identifying, recording, flagging, sharing and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment, or sensory loss. The Disability Discrimination Act 2005 places a responsibility on public bodies to ensure that people with disabilities have equal access to their services. People with speech, language, and communication needs (SLCNs) are vulnerable and often experience social isolation, including inequalities in seeking, accessing, processing and using health and social care information including poor relationships with health and social care staff.

SLCNs may be caused either by developmental or acquired conditions. Developmental conditions may affect the acquisition and learning of language, the understanding and/or use of spoken or written language, the production of speech, or the ability to effectively communicate with others. Acquired conditions may arise from illnesses or accidents (e.g. stroke, head injury, cancer) and can occur from early-childhood to older age. SLCNs in children and young people may lead to negative impacts on educational achievements and/or employment prospects, perceived challenging behaviour and misrepresentative involvement in the justice system, as well as impact social, emotional, and mental well-being. For example, the Bercow review highlighted how poor understanding of SLCNs leads to many children and young people not receiving adequate, effective, and equitable support which then can impact their educational outcomes, future employment prospects and their mental health.

Regardless of the age of the individual or the underlying cause, SLCNs are further impacted by barriers to using technology, such as remote communication, and these barriers may also result in limited ability to live autonomously and engage in activities of daily life, as well as reduced access to appropriate health and social care services, consequently leading to poorer quality of life. Long-standing issues of fragmented service provision, compounded by the COVID-19 pandemic, has led to substantial changes, such as reduced services and changes in service pathways and treatments for children, young people and adults with SLCNs.

Research priorities

Several priority setting partnerships (PSPs) conducted by the James Lind Alliance (JLA) and the Royal College of Speech and Language Therapists (RCSLTs) have identified research priorities to understand the experiences and barriers encountered by individuals with SLCNs from various conditions. The links below display the full set of JLA and RCSLT priorities that applicants are encouraged to refer to within the scope of this Call. Applicants are also welcome to refer to other relevant initiatives within the scope of the Call.

James Lind Alliance PSPs

• Autism
• Stroke
• Stroke Rehabilitation and Long Term Care
• Dementia
• Cleft Lip and Palate

Royal College of Speech and Language Therapists PSPs

• Developmental language disorder, intellectual disability, and learning disability

List of relevant NIHR studies

• RfPB NIHR203173: VAlidation of the Mcast CommunicAtion Screening Tool (VAMCAST): improving patient access to communication support during mental capacity assessments. CI – Mark Jayes. Active. Due to complete November 2024. 
• RfPB PB-PG-0815-20013: Optimising hearing-Related Communication for care Home Residents with Dementia (ORCHARD): a realist synthesis. CI – Tom Dening. Completed 2018 
• PGfAR NIHR202607: Communication Partner Training for people with aphasia and their family members: identification of intervention components, expected outcomes and associated outcome measures. CI – Rebecca Palmer. Active. Due to complete August 2023. 
• NIHR Fellowships DRF-2015-08-182: Better Conversations with Primary Progressive Aphasia (BCPPA): Communication training to keep families together. CI – Anna Volkmer. Completed 2019. 
• HEE-Integrated Clinical Academic ICA-CDRF-2016-02-061: Unspoken voices: What are the perspectives of people who use alternative and augmentative communication (AAC) on the impact and effectiveness of AAC equipment? CI – Katherine Broomfield. Due to complete September 2022. 
• HSDR 14/70/153: Identifying appropriate symbol communication aids for children who are non-speaking: enhancing clinical decision making. CI – Janice Murray. Published 2020. 
• HSDR 13/114/93: The development and testing of a communication skills training intervention for healthcare professionals caring for people with dementia in acute hospitals. CI – Rowan Harwood. Published 2018. 

List of relevant other studies

• Wray F, Clarke D. Longer-term needs of stroke survivors with communication difficulties living in the community: a systematic review and thematic synthesis of qualitative studies. BMJ Open.
• Clegg J, O’Flynn, Just P. Speech and language therapy during and beyond COVID-19: building back better with people who have communication and swallowing needs. Royal College of Speech Language and Therapists 2021.
• Cummins C, Pellicano E, Crane L. Autistic adults' views of their communication skills and needs. Int J Lang Commun Disord. 2020;55(5):678-689.
• Grayson L, Brady MC, Togher L, Ali M. A survey of cognitive-communication difficulties following TBI: are families receiving the training and support they need?. Int J Lang Commun Disord. 2020;55(5):712-723.
• SCIE. Improving access to social care for adults with autism. Social Care Institute for Excellence 2017.
• Rodgers J, Goodwin J, Garland D, et al. Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial. J Autism Dev Disord. 2022
• Tarver J, Pearson E, Edwards G, et al. Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management. Autism. 2021;25(2):429-439
• Home-based PECS Study (HoPS) to help with communication skills. CI – Vicky Slonims. Completed 2022.