Learning from Lives and Deaths – people with learning disability and autistic people (LeDeR) was established in 2017 as a collaboration between several UK universities along with NHS England and several leading charities in the area. Its report for 2022, which was only published as recently as November 2023, includes some really interesting and important observations in relation to Mental Capacity and how it is applied in practice in England.
LeDeR on Mental Capacity
Key findings with regards to Mental Capacity include:
- It was identified that individuals were not consistently included in discussions surrounding do not resuscitate decisions (DNACPR) – though it was recognised that these individuals often have capacity (p. 39).
- For cases that required the application of the Mental Capacity Act (2005), it was found that in 2021, 70.7% of cases were followed appropriately, while in 2022, 74.9% were followed correctly. This suggests that there were concerns around the application of the Mental Capacity Act for approximately one quarter of all cases (p. 8 and p. 106).
- It was found that reasonable adjustments for accessibility to health care were not made in 65.7% of cases where deaths occurred in 2021; and in 75% of cases where deaths occurred in 2022 (see p. 106). And yet as we know, ‘reasonable adjustments’ are not only a crucial part of inclusion and equality legislation, but also a key requirement under Principle 2 of the Mental Capacity Act (2005).
- The report also highlighted the lack of adequate application of the MCA in primary and community care settings where the lack of MCA affected safeguards surrounding decision-making. For example, a clinically vulnerable person who was scared of needles was not administered a flu jab, without the necessary a mental capacity assessment or associated best interest decision, if required, made on their behalf.
Mental Capacity still not well understood
The LeDeR report draws together the overarching successes, failures and needs in health care practice in England for supporting individuals with autism and learning disabilities, providing clear direction as to lessons that need to be learnt.
Within these lessons, it is clear that the Mental Capacity Act has not been consistently applied in all cases. This has a direct and quite profound impact on the inclusion, equality, autonomy and rights of people with learning disabilities and autism. This has clearly become a consistent theme in relation to the MCA. Quite simply, there is an ongoing lack of knowledge around the Act and how it is applied.
Ongoing questions
While it is certainly an enlightening document, the LeDeR report still poses many questions. For example, in cases where the individual was believed to have capacity to make decisions it would be interesting to know how decision-making was supported, especially in light of the concerning statistics for reasonable adjustments.
We must also question by what criteria the researchers judged the so-called effectiveness of how the MCA was applied. What were the concerns that the researchers discovered? Were these in regards to assessment, best interest decisions, documentation, or applying the core principles of the Act? We might also wonder whether the researchers considered the decision-making process in cases where the individual was deemed to lack capacity. To what extent were roles such as LPA and Deputies made use of? Were these roles used appropriately?
Helping you understand Mental Capacity
For support and training around the Mental Capacity Act, as well as consultancy services and bespoke Mental Capacity Assessments, please see our services page. We are based in the north west of England and primarily cover the Lancashire, Yorkshire and Cumbria region. Though we can travel further on special request. If you have any questions at all, please do get in touch.