The ‘D’ word
So it seems that Southern Health NHS Foundation Trust may have been right about one thing at least. The Mazar’s report criticised Southern Health’s failure to effectively investigate unexpected deaths, particularly those of people with learning disabilities or of older people in mental health services. Southern Health responded by saying “these issues are not unique to the Trust”. Sadly a new report by the Care Quality Commission (CQC) appears to confirm this is true.
The CQC deaths review could not find a single trust able to demonstrate good practice across all aspects of identifying, reviewing and investigating deaths and ensuring that learning is implemented. The report is clear that all the problems it found are worse in relation to the deaths of people with learning disabilities and mental health problems. In summary, the report says that the NHS fails to investigate deaths, particularly those of the most vulnerable people, and that the bereaved family members feel ignored. Jeremy Hunt describes this as systemic problem that calls for systemic changes. I think this is only a part of the picture.
The CQC report says that despite a raft of existing frameworks, the quality of investigations is variable and that this is as a result of confusion and inconsistency. I worry they don’t really seem to grasp the possibility that some NHS professionals put a lesser value on the lives of certain groups of people and therefore don’t raise concerns about their care or their deaths. This is discrimination. Until we recognise it as such we can’t begin to tackle it. The attitudes and beliefs of clinicians will not be improved by systemic changes or a new framework.
I am also very concerned about the focus on unexpected deaths as there is a tendency to view premature mortality as inevitable for people with learning disabilities, meaning their deaths are likely to be categorised as expected deaths. Moreover, expected deaths can still have been avoidable by good quality healthcare. I remember a case we reviewed as part of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) where a man had died in his 60s of cancer. This was an expected death. However, when we looked at the chain of events leading to his death some of the problems we found were:
- his biopsy should have happened within a month - instead it took 2 years
- his surgery was delayed because he had untreated heart problems – noted years earlier to need follow-up in 6 months
- the wrong scan result was sent
So whilst his death may have been expected, it may also have been avoidable and clearly his care was not good enough. Essentially there was a catalogue of errors and despite the number of frameworks that exist to highlight failures in care, there had never been any issues flagged in relation to his treatment, no safeguarding concerns raised and nothing considered a serious incident. Would this have been the case for someone without learning disabilities? I don’t think so. What else can we call this but discrimination?
NDTi’s report on Mental Health in Later Life talked about the ‘double stigma’ of mental health and ageism. Age discrimination in mental health services was identified as the most fundamental barrier to improving services and support for older people. Southern Health only investigated 0.3% of deaths of older people in mental health services in comparison to 30% of deaths in adult mental health services. As Rob Greig wrote at the time this sends a clear message that the lives of older people are less important than those of others.
I am pleased that the Secretary of State has said that trusts will now be required to monitor and report on deaths that were potentially avoidable and serious incidents, and that he has made specific reference to prioritising learning from the deaths of people with learning disabilities. I am disappointed though that he stopped short of giving the Learning Disabilities Mortality Review (LeDeR) programme a mandatory status. This would raise the profile of the work and show that the lives and deaths of people with learning disabilities are valued.
However, he did talk about the importance of LeDeR and I would urge trusts to participate in the programme. Their review process addresses many of the concerns raised in the CQC report:
- people with learning disabilities and families have been involved in helping to plan and establish the LeDeR programme, and the expectation is that the views of families are priorities throughout the whole of the review process
- the programme provides training for all reviewers of deaths of people with learning disabilities
- it expects all reviews to be independent of those responsible for or involved in the care of the person who has died
- it aims to embed reviews of deaths of people with learning disabilities into local structures to ensure their continuation
Moreover, it takes a holistic approach to the reviews of deaths and considers the quality of both the health and social care received by an individual. This is particularly relevant for people with learning disabilities. From my experience with CIPOLD I can’t believe that clinicians wouldn’t benefit from time spent on a holistic review of some cases. I am hopeful that some of the insights they would get would lead them to behave differently – maybe spend extra time with a patient, listen to the family more, think about what reasonable adjustments are necessary to meet their needs.
Whilst I welcome the (somewhat familiar) acknowledgement that lessons need to be learnt and changes need to be made to the system, there are underlying cultural changes needed. Changing attitudes is hard and it takes time and I am unsure of the best way to do this. What I am sure about, is that there often seems to be a general acceptance that people with learning disabilities die earlier and this leads to tolerance of poor quality, or even a complete lack, of care. To address this, the first step has to be recognising and acknowledging the problem for what it is – and it is discrimination.
Anna Marriott is the Health Lead - Learning Disabilities at the National Development Team for Inclusion (NDTi)
NDTi is an organisation that promotes equal and inclusive lives for people in their communities, particularly where ageing or disability are issues
Anna Marriott's blog is a personal opinion and does not necessarily reflect the views of the NDTi.