Written evidence from Dr Aisha Abubakar, Dr Rowland Seymour, and Dr Alison Gardner[1] (TEB05)
Public Administration and Constitutional Affairs Select Committee
Transforming the UK’s Evidence Base inquiry
1.1. Our evidence is about fitness for purpose of existing statistics relating to diverse forms of cognitive impairment, which include learning disability, severe mental distress and mental health-related disability, Autism, brain injury and dementia.
1.2. Cognitive impairments create additional risks for individuals which may increase social and support needs. For example, the UK Government has recently extended the definition of forced marriage to safeguard potential victims with cognitive impairments.
1.3. However, existing data sources often do not record cognitive impairment, leading to a lack of data concerning the way cognitive impairment may intersect with other social issues. This inhibits effective planning and policy interventions. For example, the data the Government collects is insufficient to identify individuals with cognitive impairment that are vulnerable to, or may have experienced modern slavery and other forms of exploitation. The existing mechanisms the UK Government uses suffer from undercounting issues and do not explicitly count cognitive impairment related exploitation cases.
2.1. We argue that in relation to cognitive impairment, the census provides limited useful information. Any information from the census about disabilities or cognitive impairments is self-declared. 2021 census information centres on three questions; one question asking if the respondent has or expects to have a physical or mental health condition lasting over 12 months, a second asking the extent these conditions affect the respondent’s everyday life, and third asking unemployed respondents if they were unable to work due to a disability.
2.2. The self-declaration and lack of detail mean these questions are not useful in developing high quality interventions for people with cognitive impairments. People with cognitive impairments may not wish to disclose this information on the census or may not know they have impairments, for example if impairments are undiagnosed. Additionally, people may incorrectly self-diagnose conditions.
2.3. There are other data sources that contain more detailed information than the census about people with cognitive impairments. This includes the Family Resources Survey (FRS), the Clinical Practice Research Datalink, the Crime Survey for England and Wales (CSEW), and the Safeguarding Adults Collection (SAC). However, these sources do not always provide datasets that are comparable or easily linked, to highlight the needs of people with cognitive disabilities. The FRS is an annual survey that collects detailed information on living standards and circumstances of people in the UK, including self-reported disability status. However, it does not examine experience of crime such as exploitation. The CSEW provides vital information about the changing levels of crime over the last 30 years, including questions on self-reported types of impairment. However, it is not possible to extrapolate what incidents reported by individuals constitute exploitation in the CSEW. The SAC, published by NHS Digital, summarises safeguarding concerns from local authorities, providing disaggregations across individuals’ primary support needs. However SAC data is published using summary tables which hinders a comprehensive understanding of the specific intersections between different forms of cognitive impairment and risks to those adults, including modern slavery, sexual and financial exploitation. The National Referral Mechanism (NRM) is a framework for identifying and referring potential victims of modern slavery as well as ensuring they receive the appropriate support. While the NRM statistics in their current form offer useful information about exploitation, they do not collect data a victim’s impairment status.
2.4. In summary, the census cannot devote sufficient space to fully disaggregate different forms of cognitive impairment or health conditions and the requirement to self-declare conditions means the census is not a high-quality source of information on cognitive impairment. Other data sources on cognitive impairment are available and provide better quality data, but with limited usefulness for comparison and connection. With some adjustment, these latter tools could be more effective in providing data addressing cognitive impairment (alongside other forms of disability).
3.1. One of the main official statistics we cited as a source of cognitive impairment data is the Safeguarding Adults in Care (SAC) data. Since 2010, all local authorities with social services responsibilities (i.e., Councils with Adult Social Services Responsibilities, CASSRs) were mandated to return statistics concerning the number of vulnerable people aged 18 or over, who they had been made aware of, with regards to risk of abuse or neglect. NHS Digital publishes data from the SAC regarding the number of safeguarding concerns raised including the number of Section 42 enquiries, the primary support needs of individuals involved in these enquiries, and, inter alia, a breakdown of concluded Section 42 enquiries by type of abuse or exploitation.
3.2. Section 42 enquires are reported to NHS digital annually. In many cases, the submission to NHS Digital is manually curated. This may also result in errors, administrative burden, and discrepancies between local authorities. Moreover, it is likely that different definitional standards are being applied to recording these statistics leading to variations across local authorities. Indeed, a survey of local definitions was commissioned in 2018 to ascertain how local authorities defined key elements of adult safeguarding activity in their 2017-18 SAC submission to NHS Digital. The results show that 49% of local authorities have processes in place to address safeguarding concerns before it reaches the safeguarding team and therefore, such concerns are not recorded in the SAC. Periodic reorganisation of local authorities may also affect comparability of datasets.
3.3. NHS Digital provides excellent guidance and support on how to use the SAC data and its limitations, particularly on regional variations. This makes the data much easier to use within its limits.
3.4. In summary, official statistics on adults with cognitive impairments shows locational variations due to choices made within each local authority. NHS Digital provide excellent support on using the data.
4.1. The SafePod Network is a new initiative to provide researchers with standardised and safe settings to access secure data. This includes secure data from the Office for National Statistics and the UK Data Service. There are over 20 SafePods in the Network, mainly at universities, and each SafePod is an enclosed, secure workspace, where researchers can remotely access secure data.
4.2. Accessing the SafePod network requires a large amount of administrative preparation and researcher training. This is prohibitive to researchers working on fixed term research projects, who lack the time and funding to take on this administration and training.
5.1 Our investigations indicate that people with cognitive impairment are currently under-served by existing datasets, with very limited usable public data. This is inhibiting research into how people with cognitive disability or difference are impacted by social issues such as crime, making it difficult for both researchers to evidence problems beyond an anecdotal level, and for policymakers and practitioners to create effective policies to serve these individuals.
August 2023
[1] Dr Aisha Abubakar is a Research Fellow in Cognitive Impairment and Exploitation at the University of Nottingham. Dr Rowland Seymour is an Assistant Professor in Mathematics at the University of Birmingham. Dr Alison Gardner is an Assistant Professor in Public Administration at the University of Nottingham. We are submitting information specifically relating to shortcomings in the evidence base concerning individuals with cognitive impairment. This response is grounded in ongoing research exploring the intersection between people with cognitive impairment and exploitation.