Placing patients and families at the heart of everything we do is key to improving Scotland’s healthcare, says Lynsey Cleland, Director of Quality Assurance at Healthcare Improvement Scotland.

As we look at the recovery of our health and care services following the COVID-19 pandemic, we are beginning to look towards the future and what quality patient care should look like going forward. The more we look, the more we see that the key to our improvement is patients and their families – without their feedback and their involvement we will miss a vital opportunity which can help us succeed in our mission of delivering outstanding care to everyone in Scotland.

Two important reports

In the course of the last few months, our organisation carried out two pieces of work looking at incredibly challenging areas of healthcare – adverse event reviews (an adverse event is when something happens while care is being delivered which could have, or has resulted in, harm to people) and the experiences of families and carers who lost a child. Both of these areas have a profound emotional impact on those involved, lasting years, if not entire lifetimes. Despite these pieces of work focusing on different areas of healthcare, they set out to establish similar objectives – what did those with lived experience of these events need from their health service? What was truly important to them? What could health providers, local authorities and the third sector do to make a difference and improve?

Listening and empathy

Two themes emerged – listening to patients and their families is essential if we want to understand what went wrong, and that clear, empathetic, human communication was fundamental if we wanted to provide patients and families with the support they need as they move through what is unquestionably, an incredibly challenging time. Both studies talked about examples of patients and families experiencing extraordinary levels of care and consideration across NHS Scotland, with healthcare professionals really tuning into their needs, listening to their experiences and showcasing demonstrable learnings. However, both studies also showed that approaches to reviews, for adverse events and child deaths alike, were inconsistent and didn’t always take account of individual patient and family needs. Families and patients highlighted that in order to benefit from a review process, they needed to understand exactly what the purpose of the review was, how they can contribute and be safe in the knowledge that their emotions will be taken into consideration.

For example, the National Hub for Reviewing and Learning from the Deaths of Children and Young People set up by the Scottish Government and overseen by us and the Care Inspectorate to review and learn from the deaths of all children and young people in Scotland up to age 18, or 26 if receiving continuing care or aftercare, at the time of their death, found in its found in its consultation of bereaved families and carers that following a harrowing event like the death of a child, many families and carers were often unable to digest the information given to them and would benefit from having a review at a later stage. On the other hand, the adverse event reviews study found that some reviews were not timely enough, with those affected saying that they understood that NHS services were under significant pressure and that they would benefit from a timeline, or updates when delays had to happen.

Unprecedented numbers

So, what can we do going forward? We must listen to our patients, their families and carers – that much is clear. We already know that NHS boards across Scotland are paying attention – an unprecedented number of healthcare professionals has expressed interest in receiving compassionate communications training, while examples of outstanding care are reported by patients across the board. It is also paramount that we never forget that people are at the heart of everything we do and that their needs should be placed at the centre of how we shape and improve our health services. Community engagement is a core part of what we do at Healthcare Improvement Scotland, working with the NHS, our partners and patients to make sure that real human experiences and opinions shape national policy. From the recent findings of our work, it is clear that this collaboration is now more vital than ever and that we focus our efforts on three key elements – listening, learning and improving. We will continue to play a key role in ensuring this happens, through producing national information for families, as well as instituting a single point of contact for families to keep them engaged in review process.

Lynsey Cleland is Director of Quality Assurance for Healthcare Improvement Scotland.

More information

Read ‘When a child dies: Learning from the experiences of bereaved families and carers on the Healthcare Improvement Scotland website.

Access the study on the British Medical Journal website.