Written Statement: Prolonged Disorders of Consciousness - Diagnosis, treatment and care

In January 2018, I made a statement to members regarding the diagnosis, treatment and care of people in a permanent vegetative or minimally conscious state.

Subsequently, the legal position regarding the withdrawal of clinically assisted nutrition and hydration (CANH) was clarified via a Supreme Court Decision in July 2018. The court ruled that judicial approval will no longer be required discontinuing life-prolonging treatment, for individuals with a prolonged disorder of consciousness (PDOC), which includes both a permanent vegetative state (PVS) and a minimally conscious state (MCS), provided that there is agreement upon what is in the best interests of the patient, the provisions of the Mental Capacity Act 2005 have been followed, and the relevant professional guidance has been observed.

Professor Baroness Finlay of Llandaff, former clinical palliative care lead for Wales and current chair of the National Mental Capacity Forum for England and Wales, has led a review of decision making within an individual case previously drawn to my attention.

I am pleased to note the report found the care, attention and behaviours provided by staff during this case were of an extremely high level. However, there are areas of treatment and guidance that require further consideration to ensure the best possible care is being provided to every patient in Wales and their families. A copy of the report can be found here: https://gov.wales/topics/health/publications/health/reports/permanent-vegetative-or-minimal-conscious-states/?skip=1&lang=en

Concurrently, I requested a task and finish group be convened to consider whether there is a need for any additional guidance, education or training to be developed for the health and social care sector in Wales.

Baroness Finlay’s review made a number of detailed recommendations which were considered by the task and finish group and are in line with its recommendations.

Having reflected on the recommendations, it seems clear there are certain difficulties with identifying individuals due to the nature of the injuries sustained and the range of setting where ongoing care may be provided.

I have therefore requested Welsh Health Specialised Services Committee work with health boards in Wales to undertake a needs assessment, develop appropriate pathways and ensure services are organised appropriately this includes the provision of information for families and healthcare professionals.

As part of this health boards will need to consider guidance for non-specialist staff to help identifying individuals presenting these conditions, reflect on the training provided to health and social care professionals to help recognise these conditions, which are often difficult to initially diagnose, as well ensuring individuals and their families receive the level of care they require.

I would like to thank Baroness Finlay, the members of the task and finish group and everyone who has contributed to this important piece of work. I would also like to thank all members of the NHS and social care that work in this area, often having to hold extremely difficult conversations and doing so with professionalism and compassion on a daily basis.

I want this work to be the beginning of ensuring all individuals in Wales who may be or are in a prolonged disorder of consciousness receive equitable treatment and families are supported during an extremely difficult time.