Impact case study database

Reform of Health and Social Care Policy in England

The Government response to the CIPOLD report [1] agreed that “much more still needs to be done to ensure people with learning disabilities have the same rights and access to the same health benefits as the rest of the population” (p.2).

Launching The Lancet paper (December 2013) [2], Prof Heslop criticised the lack of urgency in acting on the recommendations in the CIPOLD report [1]. Pressure from MENCAP and the Health Service Ombudsman was followed by a strongly critical Lords debate which drew extensively on CIPOLD findings. A delayed Department of Health progress report [A] summarised action taken on each of the CIPOLD recommendations ( R) and confessed that “…we now need to step up the pace and make a concerted national effort” [A] . Key initiatives included: a commitment to increasing annual health checks ( R6), BMI checks and cancer screening ( R7); targeting people with learning disability for flu immunisation (CIPOLD showed they were more vulnerable to respiratory disease [1]); improving access to palliative care; and improving adherence to the Mental Capacity Act ( R15) [A]. Significantly, the government committed to the CIPOLD recommendation ( R18) to establish a learning disability mortality review body (LeDeR). This was delivered by UoB [ii] and commissioned for five years (2015-2020) by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, and directly by NHS England from 2020-2021.

Since 2014, there have been five debates in the Lords and eight in the Commons which have discussed CIPOLD or LeDeR. In 2016, the Secretary of State announced that the LeDeR programme would provide support to families and all local NHS areas in England to enable reporting and an independent, standardised review of all learning disability deaths [Ci]. In 2018 the Minister for Care, responding to the First LeDeR report [Bi], announced a new legal requirement for every NHS Trust in England to publish data on avoidable deaths and provide evidence of learning and improvements ( R17), and a learning disability annual health checks scheme ( R6) was introduced to help ensure that undiagnosed health conditions can be identified early [Cii].

A LeDeR recommendation on the need for better training and awareness of learning disability in the health and social care sector ( R6 [Bii]), was recognised in the Government’s response to the consultation on learning disability and autism training for health and social care staff [D]. The government subsequently proposed to amend the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 accordingly (para 79), with planned changes coming into force in April 2021 [D]. Health Education England and Skills for Care are now co-ordinating the development of the training in health and social care.

The CIPOLD [1, 2] and LeDeR [Bi-iii] reports have presented uncomfortable findings and challenges. Nevertheless, in the preface to the government’s response to the 3^rd LeDeR report [Biii], the Minister wrote: “ The University of Bristol has played a hugely important role since the beginning of the LeDeR programme, setting out the learning and recommendations from the LeDeR reviews in their annual reports. We are grateful for the significant contribution they have made.” The Minister continued, “I… reiterate our ongoing commitment to the mortality reviews themselves being undertaken as set out in the NHS's Long Term Plan [2019]” [E].

Learning from Mortality Reviews in England

LeDeR is the world’s first national programme of mortality reviews of people with learning disabilities aged 4 years and over. More than 5,000 deaths of people with learning disabilities have now been reviewed: in 2018 this was 86% of the estimated number of deaths of people with learning disabilities in England that year. Three annual reports have been published by the University of Bristol identifying key learning and making recommendations to the NHS and social care sector [Bi-iii]. The case record review methodology developed by CIPOLD [1] and adapted for use by LeDeR has been recognised by, and recommended for use in, the national Learning from Deaths programme [F] which requires a LeDeR review of ‘all in-patient, out-patient and community patient deaths of those with learning disabilities’ [F].

A Learning into Action collaborative was established by the NHS England and NHS Improvement learning disability programme to co-ordinate the national response to learning from LeDeR. It involved NHS trusts, social care, charities and the independent sector, practitioners, people with a learning disability and their families. The collaborative’s work was guided by recommendations made in the 2018 and 2019 UoB LeDeR reports [Biii, Biv]. Work streams have tackled respiratory problems, sepsis, constipation, cancer, the failure to recognise physical deterioration and the application of the Mental Capacity Act [G]. The most recent Action from Learning report [Gii] demonstrates impact for people with learning disabilities in relation to improvements to cancer screening services, the development of a reasonable adjustment ‘flag’ on case records, the use of the NEWS2 (National Early Warning Score) to improve the detection and response to clinical deterioration, changes to the flu vaccination eligibility criteria to include all people with learning disabilities, the provision of advice to Trusts about DNACPR (Do not attempt cardiopulmonary resuscitation) decisions, and improvements to the NHS111 service [Gii]. Most recently (Nov 2020), findings of LeDeR reviews of deaths from COVID-19 have been presented to the government Scientific Advisory Group for Emergencies (SAGE). NHS Action from Learning have responded to these data with specific actions for GP practices, as well as health and care organisations [Giii].

Changes to NHS policy

CIPOLD [1] was instrumental in NHS England acknowledging premature mortality of people with learning disabilities as an area of concern and was identified as a key priority in the 2019 NHS Long Term Plan [Hi], as well as the NHS Operational Planning and Contracting Guidance (2019/20) and the Learning Disability Improvement Standards for NHS trusts (2018). Having a learning disability is not a cause of death. CIPOLD identified concerns about the coding used for underlying cause of death on MCCDs [6]. LeDeR reiterated these concerns [B] and in response the National Medical Director for NHS England wrote to NHS Trusts and Clinical Commissioning Groups reminding them that the terms ‘learning disability’ and ‘Down syndrome’ should never be used to describe the underlying, or only, cause of death on the MCCD [Hii].

Improved identification of people with learning disabilities and their needs

CIPOLD [1, 2] recommended identification of people with learning disabilities in health and social care settings ( R1) so that practitioners make ‘ reasonable adjustments’ to ensure that services are fully accessible and meet their needs ( R2). Furthermore, these reasonable adjustments should be recorded, implemented and audited ( R2). In response, GP registers of people with learning disabilities were expanded from adult-only to all-age registers and form the basis for annual Learning Disability Health Checks included in the General Medical Services Contract 2014/15 [Ii] .

NHS England and NHS Digital, with input from the UoB, developed a ‘reasonable adjustment flag’ to add to a person’s health record on the NHS Spine to inform health and care staff when an adjustment to services needs to be made. This is currently being piloted, pending national implementation, to gather feedback from staff, patients and carers about the impact on care when information is readily available to staff from the first point of contact onward [Iii].

Healthcare benefits for patients with learning disabilities

In 2019, NHS Digital reported indicators of health promotion activities recommended by CIPOLD and LeDeR and adopted by the NHS England [J]. Notably, the proportion of people with learning disabilities receiving an annual health check ( R6) has increased from 43% (2014/15) to 55% (2017/18) and BMI assessments increased from 58% to 62% in the same period [J]. This is important because they are more likely to be obese (30%) than those without learning disability (23%) [1, 2]. The proportion of people with learning disabilities receiving a flu vaccination ( R9) has risen from 40.8% to 44.7% (2014/15 to 2017/18); 83% of those over 75 had been vaccinated [J]. Rates of cancer screening were lower for people with learning disability than those without, e.g. for breast cancer 53% vs 68%, and for colorectal cancer 78% vs. 84%, although 78% was an increase from 67% in 2014-5. There had been a 60% increase in the proportion of patients with learning disabilities receiving palliative care at end of life; more than those without learning disabilities at all age bands [J].