Recommendation 2 relates to compliance with NICE guidelines. The NICE guidelines on dementia advise against the use of any antipsychotics for non-cognitive symptoms or challenging behaviour of dementia unless the person is severely distressed or there is an immediate risk of harm to them or others. However, we were told that antipsychotics are being used as a default position in care homes and some hospital wards when people with dementia are difficult to deal with. We were also told that current practice is not fully compliant with the NICE guidelines. We agree with witnesses that it is vital that there is full compliance with NICE clinical guidelines. We have therefore called on the Welsh Government to ensure that all health boards are fully compliant with NICE guidelines on dementia and report back to this committee on rates of compliance within 12 months. It is therefore disappointing that, while sharing the committee’s concerns about the use of antipsychotic medicines for the management of behavioural and psychological symptoms in dementia when such use is not in accordance with guidance issued by NICE, the Cabinet Secretary has only accepted in principle this recommendation, which again suggests that it will not be fully implemented.

Our third recommendation relates to person-centred care. We were told that increasingly, antipsychotic medication is being routinely administered in response to challenging behaviour, in place of staff working to identify the root cause of that behaviour. A person living with dementia presenting challenging behaviour often has an unmet need that they may be unable to communicate, and if that need can be identified, the situation can be greatly improved without antipsychotic medication. It is therefore important to look at the person as a whole to understand what is causing a particular behaviour. The committee felt very strongly about the need to look at the person as a whole in order to understand what may be causing a particular behaviour, and we heard lots of examples of good practice checklists that could be used by staff in care homes to identify the possible causes behind an individual’s behaviour. One such tool is the adverse drug reaction profile—ADRe—a succinct, convenient tool that asks nurses to systematically check their patients for signs and symptoms relating to the undesirable effects of medicines and share this information with prescribers and pharmacists reviewing medication regimes. 

We therefore recommended that the Welsh Government should ensure that every person with dementia presenting challenging behaviour receives a comprehensive person-centred care assessment of their needs. It should work with relevant health professionals to develop a standardised checklist tool like the one outlined, to be used by health and social care staff to identify and address or rule out possible causes of challenging behaviour, including unmet physical or emotional needs, and include a requirement for consultation with the individual and their carer or family. The checklist should be available within six months and must record the action taken to demonstrate that all other options have been considered before considering the use of antipsychotics as prescribed for people with dementia. Again, this recommendation has been accepted in principle. The Cabinet Secretary’s response states that as part of the roll-out of the 'Good Work' training and education framework, attention has already started to be given to the development of comprehensive assessment and care planning to support the person-centred approach. However, evidence to the committee suggested that awareness of the 'Good Work' framework was low and it has yet to be applied by many care homes.

In his follow-up letter this week, the Cabinet Secretary reinforces his support for the broad approach of tailoring the care a person with dementia receives to a person-centred assessment of their needs. He also states that he believes that the use of a single standardised tool cannot accurately reflect every person’s individual needs and circumstances, and commits to working with stakeholders to develop a common understanding of principles. I do understand the Cabinet Secretary’s point about not wanting to endorse one particular approach or tool, so would welcome more detail about how he plans to work with stakeholders, and what this work will look like.

Despite six accepted in principle out of 11 recommendations, I do welcome the Cabinet Secretary's acceptance of recommendation 7 and his assurance that an integral part of the role of the allied health professional dementia consultant will be to improve access to allied health professionals for care home residents. Similarly, the acceptance of recommendation 8 and the recognition of the key role of speech and language therapists in improving outcomes for people with dementia is also to be greatly welcomed.

However, overall, I am very disappointed with the Cabinet Secretary’s response. While it appears that the majority of our recommendations have been accepted or accepted in principle, the accompanying narrative suggests otherwise, with a lack of real commitment and clear timescales for tackling this issue as a priority.

We believe, as a committee, significant cultural and systemic changes are needed to ensure antipsychotic medications are prescribed appropriately and not as a first option. Unnecessarily medicating vulnerable people in care is a profound human rights issue, which must be addressed. We therefore urge the Welsh Government to take action on the evidence we have gathered and the recommendations we have made to drive progress and deliver the solutions needed to protect some of our most vulnerable citizens. Diolch yn fawr.