‘Reasonable adjustments’ for vulnerable patients

We support the views of Tuffrey-Wijne & Hollins ¹ and their argument for the NHS to take an organisational approach to embed documentation and provision of reasonable adjustments for those with protected characteristics under the Equalities Act 2010. Lord Darzi defined quality for the NHS as comprising three dimensions: safety, effectiveness and patient experience. ² The provision of reasonable adjustments is central to each of these.

Safety - Tuffrey Wijne & Hollins rightly identify the lack of provision of reasonable adjustments as being a patient safety issue. The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) ³ demonstrated an underlying culture in which people with intellectual disabilities were disadvantaged in accessing equitable healthcare and at risk of premature death because equality for disabled people was assumed to mean treating them the same as others. It does not. Alternative methods of making services available have to be found in order to achieve equality of outcomes. Mizen et al, for example, demonstrated that clinical guidelines can actually increase health inequalities for people with intellectual disabilities if reasonable adjustments are not made. ⁴ If the lack of reasonable adjustments threatens to compromise safety as, in very many cases, it does for people with intellectual disabilities, this needs to be reported and reviewed as a patient safety issue.

Effectiveness - evidence put forward by Tuffrey-Wijne et al suggests that ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. ⁵ Effective care is that which is tailored to the needs of the patient, and this must involve an understanding of the adjustments they need in order to be able to receive appropriate medical and nursing care. In our view, we should go further than Tuffrey-Wijne & Hollins’ requirement for Care Quality Commission inspections in England and Wales to oversee patient-specific recording of reasonable adjustments. We also need to be confident that such adjustments are being delivered, and for evidence to be provided of adequate arrangements being in place.

Patient experience - Turner & Robinson note that it is difficult for people with intellectual disabilities and their families to influence policy and practice in healthcare systems if they are not visible within them and if involvement mechanisms such as surveys and focus groups are not accessible to them. ⁶ Both the Death by Indifference ⁷ and CIPOLD reports highlighted the lack of attention paid to the views of patients and their families, preventing them from becoming active partners in their care; the CIPOLD report additionally noted the devastating impact on future care that a poor experience of healthcare can have for some people with intellectual disabilities. The provision of reasonable adjustments needs to extend to the ways in which we garner the views of people with intellectual disabilities, communicate with them, and place them at the centre of their care.

The CIPOLD report made 18 recommendations, which included (a) clear identification of people with intellectual disabilities on the NHS central registration system and in all health care records, and (b) reasonable adjustments required by, and provided to, individuals, to be audited annually and examples of best practice shared across agencies and organisations. ³

It is now 4 years since the Equalities Act 2010 came into force. Our adherence to the Act must be sharpened in the light of the health inequalities faced by people with protected characteristics, including those with intellectual disabilities, so clearly demonstrated in successive reports. We all have a responsibility, and we all have a role to play, in ensuring equal outcomes for vulnerable people through the provision of reasonable adjustments, but strong leadership is central to making it happen.