Agenda item

The Board considered a report concerning the findings and recommendations of the national confidential inquiry into premature deaths of people with learning disabilities (2013). Heather Burns, Senior Commissioning Manager, NHS Sheffield Clinical Commissioning Group presented the report. The inquiry had made a number of findings, including that people with learning disabilities died much earlier than the general population of preventable causes and most commonly through problems and delays with health investigations and treatments.

There were inadequate reasonable adjustments made, a failure to follow the Mental Capacity Act, end of life care pathways and do not attempt cardiopulmonary resuscitation orders. There was a lack of proactive healthcare and planning in the cases reviewed.

The local responses to the Inquiry’s various recommendations were summarised in the report.

Members of the Board made comments and asked questions to which responses were given, as summarised below:

The recommendations of the Confidential Inquiry should be embedded in practice and in the treatment of people with learning disabilities.

Was there a comparison or cross reference of the policies which protect and safeguard children with those for people with learning disabilities? There was concern that young people with learning disabilities were being pushed into independent living.

The law applying to children and to adults (e.g. people with disabilities) was different. The framework for people with learning disabilities was the Mental Capacity Act. The integration of services and the provision of holistic care were challenging issues involving hospitals and GPs. A whole-age approach needed to be taken for people with learning disabilities to provide a life pathway. It was noted that, at present, safeguarding was the responsibility of two separate bodies, namely the Children and Adult Safeguarding Boards respectively.

The recommendations of the Inquiry did not make specific reference to support for carers and this was an area that should be included in the Board’s plans.

From a public health perspective, more could be done to improve matters for people with learning disabilities. In terms of public health intelligence, there should be an amount of caution exercised regarding expectations as it may be difficult to obtain data, which might not have been systematically recorded or may not be linked.

The framework was different for children and adult safeguarding. There needed to be work to improve awareness through the Mental Capacity Act and thought should be given to expectations regarding the standard of care and support for people with learning disabilities. There had been change in public policy with regard to equitable rights and citizenship, and whilst there was some good practice, the existence of choice allows for certain things not to be done. ‘Reasonable adjustment’ was partly dependent upon culture and attitude of service providers. 

The health and social care self-assessment process mapped out the gaps in provision for people with learning disabilities.

There was a prioritisation process and the associated resource and expenditure implications were considered within that process. As such, was the Board expected to endorse the recommendations simply as principles? There was a notion that, if the right process was adopted for people with learning disabilities, then similarly, this would equally apply to other groups, including, for example, people suffering with dementia. The recommendations could be applied more widely and be linked to the action planning for health and social care assessments.

RESOLVED: That (a) the Board notes the recommendations of the Inquiry, and seeks assurance that local partners are taking all reasonable steps to ensure equal access to healthcare for people with learning disabilities in Sheffield.

(b) the Public Health Intelligence Team is invited through their core offer to Sheffield City Council and the Clinical Commissioning Group, to analyse and research outcomes for people with learning disabilities in Sheffield in respect of:

1. Recommendation 7 of the Inquiry (People with learning disabilities to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently to achieve the same outcome); and

2. Recommendation 17 of the Inquiry (Systems in place to ensure that local learning disability mortality data is analysed and published on population profiles and Joint Strategic Needs Assessments).

Reasons for Decision:

The Confidential Inquiry is based on intensive research in the South-West of England. We do not really know if the situation is the same, better or worse in Sheffield.  Understanding more about the health, healthcare, morbidity and deaths of people with learning disabilities in the City would enable us to take targeted action to improve access to healthcare and address serious health inequalities experienced by this population.