Given the inequity in access to good-quality healthcare documented in this time-limited Confidential Inquiry into the deaths of people with learning disabilities, it has become apparent there is a need for ongoing surveillance and review of the deaths of people with learning disabilities. The CIPOLD study has now set a benchmark against which future progress can be measured, and has identified areas where targeted action is required.
We now propose a number of recommendations in this regard.
Recommendation 16: Improved systems in place nationally for the collection of standardised mortality data about people with learning disabilities
We recommend to the Department of Health and the NHS Information Centre the routine collection of data that provides intelligence about the reasons why people with learning disabilities die. There is a need to link data about cause of deaths with appropriate registers of adults and children with learning disabilities, so that we can monitor, at a national level, a reduction of premature deaths and the pattern of underlying and immediate causes of death of people with learning disabilities.
Given the extent of the disparities between people with learning disabilities and those without learning disabilities regarding deaths amenable to good-quality healthcare, we recommend that the Department of Health sets clear targets for the reduction of amenable mortality, monitors this on an annual basis and provides a public reporting mechanism. This recommendation is an action for the Department of Health, the Nation Health Information Centre, Public Health England and the LDO.
Recommendation 17: Systems in place to ensure that local learning disability mortality data is analysed and published on population profiles and Joint Strategic Needs Assessments
Reducing differences in life expectancy, along with increasing healthy life expectancy in the most vulnerable groups in society, such as people with learning disabilities, are key objectives of the Public Health Outcomes Framework. Good intelligence is central to understanding how health inequalities impact on the health of these groups.
From April 2013 as the responsibility for planning and delivery of services moves to local authorities, Joint Strategic Needs Assessments will need to ensure that a wide range of information exists and is available about the most marginalised groups. In considering the particular health needs of people with learning disabilities, methods to collect this data should include mortality registers that include numbers, ages, cause, and place of death. This information can be used to help inform local Health and Wellbeing board priorities as well as appropriate needs-based commissioning.
Recommendation 18: A National Learning Disability Mortality Review Body to be established.
We recommend the Department of Health establishes a National Learning Disability Mortality Review Body. The National Learning Disability Mortality Review Body would:
Provide support to local agencies conducting reviews of deaths of people with learning disabilities. We strongly recommend that professionals should be mandated to
participate in the death review process as is the case with reviews of child deaths.
Oversee the establishment and running of a national Overview Panel.
Scrutinise locally conducted reviews of deaths of people with learning disabilities.
Identify ‘red flag’ deaths (those for which the causal circumstances of death have a high probability of potentially modifiable factors) and a random selection of deaths which must be reviewed.
Provide a clear mechanism for supporting the reviews of deaths of people with learning disabilities about which concerns have been expressed.
Work with the Death Certification Programme to ensure that the new processes for death certification incorporate necessary intelligence about people with learning disabilities.
Produce an annual English Learning Disabilities Mortality Report to monitor and document mortality information, and provide an evidence-base for effective interventions through which to reduce the health inequalities experienced by people with learning disabilities.
These recommendations are aimed at improving the health and wellbeing of people with learning disabilities, and their life expectancy. They should be taken in the context of the recent findings of the Care Quality Commission’s learning disability services inspection programme and the Department of Health’s report regarding Winterbourne View hospital. We suggest the CIPOLD recommendations should be incorporated into the programme of action by the Department
of Health to transform services so that people with learning disabilities are
Although the time-limited Confidential Inquiry, which we are now reporting, was one of the recommendations of the Michael Report (2008), not all of the other 9 recommendations have been fully implemented. We therefore propose that the 18 recommendations from the CIPOLD review should be closely monitored, and a public annual report issued by the Department of Health on progress towards the recommendations of the whole learning disability work-stream at the Department of Health, including the CIPOLD recommendations. In addition, we suggest using the findings from CIPOLD to provide information and support for people with learning disabilities, their families, carers, healthcare professionals and commissioners in relation to the recommendations listed. We are all too aware that very often valuable material gets locked in a report and, if not aligned with the recommendations is in danger of getting lost. The issues here are too serious and the findings too imperative to not use them in ways that will support continued action by a range of different groups and agencies.
Notes
1 Michael, J. (2008) Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Department of Health.
2 Commissioning for Quality and Innovation