This month sees the national launch of the Health Equality Framework, or HEF; a tool by which to measure and assure the quality of health outcomes delivered by services for people with learning disabilities. The HEF has been developed by members of the UK Learning Disability Consultant Nurse Network.
It has been clearly established over the last couple of decades that people with learning disabilities experience a greater burden of ill health than the general population and a group of Consultant Learning Disability Nurses have devised a tool by which to measure the extent to which services minimise peoples’ exposure to the known determinants of health inequality.
Development of the HEF began in October 2011 against a backdrop of scandalous abuses of people with learning disabilities at the Winterbourne View Independent Hospital and amid continuing concerns about NHS services repeated failures to meet the healthcare needs of people with learning disabilities. The work also follows and responds to the 2012 publication of Strengthening the Commitment, the report of a four country, UK wide Chief Nursing Officer instigated working group, which established a clear agenda around the need to modernise the learning disability nursing workforce in order to meet the needs of a population with needs of ever increasing complexity. The report also highlighted the need for learning disability nurse leaders to develop an objective measurement framework by which learning disability nurses could clearly demonstrate their effectiveness at both individual and service levels.
The Consultant Nurses (Dave Atkinson, Independent Consultant Nurse; Phil Boulter, Surrey and Hampshire Borders NHS Foundation Trust; Crispin Hebron, 2gether NHS Foundation Trust in Gloucestershire and Gwen Moulster, Haringey Learning Disabilities Partnership) were challenged by Dr Ben Thomas, Professional Nursing Officer for Mental Health and Learning Disability at the Department of Health, to develop a system which would clearly demonstrate the outcomes associated with learning disability nursing and service provision more broadly.
The HEF focuses on a range of important and relevant equality indicators in order to establish a clear consensus around service priorities. These indicators focus on social, biological, behavioural, communication and service related factors which evidence shows determine that an individual is at heightened risk of experiencing health inequalities. The necessary data is easily generated in a cost effective manner and interpretation has been simplified through the development of a freely available electronic interface (the eHEF), requiring minimal IT infrastructure to support its operation. Data can be aggregated across services, professionals and teams; this allows variation in service outcomes to be identified. Analysis of data can inform individual professional practice as well as supporting decision making to bring about improvements in whole service systems.
During the frameworks development through 2012 the Improving Health and Lives Learning Disabilities Public Health Observatory and the National Development Team for Inclusion have worked alongside the Consultant Nurses to maximise the breadth, scope and impact of the work. The model has quickly generated interest and co-production engagement from others with an interest in the health and wellbeing of people with learning disabilities including families through the National Valuing Families Forum, other professions through the National Professional Senate, people with learning disabilities through local and national advocacy groups and commissioners. This partnership approach has resulted in the development of supplementary commissioning guidance, based on the HEF, a guide for families and an easy read guide and tool for people with learning disabilities themselves.
For further information, please contact:
Consultant Nurse Dave Atkinson:
Consultant Nurse Crispin Hebron:
Emerson et al (2011). Health inequalities and people with learning disabilities in the UK: 2011. Learning Disabilities Public Health Observatory