Sources of Data:
LDIS collects data from six sources:
Organisational-level Survey
The organisational-level data for the Learning Disability Improvement Standards project is submitted online through the NHS Benchmarking Network Members’ Area. It is completed by a nominated project lead, as well as other nominated staff members. The survey questions aim to collate data on policies and protocols within organisations’ activity, workforce and service quality.
Staff survey
The survey allows staff members to give their views on their trust and delivery of care to patients with a learning disability and/or autistic patients anonymously. Trusts across England were provided with a unique URL link to distribute to staff members who had provided care for patients with a learning disability and/or autistic patients. The URL link provided staff with access to a survey hosted by the NHS Benchmarking Network, which consisted of a series of multiple choice questions.
Regional patient focus groups
These groups are facilitated by Learning Disability England, with seven groups taking place regionally across England. Further information will be available soon.
Patient Survey
The Patient Survey is an online survey that has been designed to capture the perceptions of the quality of care and overall experience of services for people with a learning disability. The survey is to be completed by people with a learning disability over the age of 18 years old who accessed care in the last year. The Patient Survey can be accessed via a URL/QR code and can be completed with the help of a family member or carer.
Family/Carer Survey
The Family/Carer Survey is an online survey that has been designed to capture the family/carer perceptions of the quality of care and overall experience of NHS services for people with a learning disability. The survey is to be completed by a family member or carer of someone with a learning disability who accessed care in the last year. The Family/Carer Survey can be accessed via a URL/QR code.
Case Note Review
Participating Trusts are asked to review 5 - 10 clinical case notes of patients with a learning disability who have been seen by the Trust during the last year. The pilot Case Note Review (CNR) element collects patient-level data on the care received by people with a learning disability. It is designed to complement the Organisational-level and Staff Surveys by providing a view of how care is delivered in practice, as recorded in case notes. The CNR supports triangulation of data across multiple sources, helping to identify variation in practice, gaps in reasonable adjustments, and examples of good care. Findings will be used to inform learning and quality improvement, strengthening understanding of how care is experienced in practice and where services can better meet the needs of people with a learning disability.
The improvement standards were launched in 2018 by NHS Improvement to ensure the provision of high quality, personalised and safe care from the NHS for the estimated 950,000 adults and 300,000 children with learning disabilities as well as the 440,000 adults and 120,000 children with autism across England. These standards were designed together with people with learning disabilities, autistic people, family members, carers and health professionals, to drive rapid and substantial improvements to patient experiences and equity of care. The NHS Long Term Plan, published in 2019, pledged that over the next five years, the national learning disability improvement standards would be implemented by all services funded by the NHS to ensure people with learning disabilities and/or autistic people can receive high quality, personalised and safe care when they use the NHS.
The four improvement standards against which trust performance is measured cover:
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Respecting and protecting rights
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Inclusion and engagement
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Workforce
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Specialist learning disability services
The first three ‘universal standards’ apply to all NHS trusts, and the fourth ‘specialist standard’ applies specifically to trusts that provide services commissioned exclusively for people with a learning disability and/or autistic people.
A trust’s compliance with these standards demonstrates it has the right structures, processes, workforce and skills to deliver the outcomes that people with a learning disability, autistic people, their families and carers expect and deserve, as well as commitment to sustainable quality improvement in the services and pathways for this group. Trusts can publish details of their performance against these improvement standards in their annual quality accounts and demonstrate a sustainable improvement in their quality of services. Each of the four standards has a set of improvement measures that trusts are expected to adopt.
