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Reflections on the Patient Reported Experience Measures Survey (PREMS) 2022/3 from Juliet Bouverie OBE, Chief Executive Officer at the Stroke Association and Dr Deb Lowe, National Clinical Director for Stroke, NHS England.

The publication of the first ever national Stroke Patient Reported Experience Measures (PREMs) survey report has provided valuable insight into the experience of stroke survivors right across England.

While we already have rich data on other conditions such as cancer, this is the first time that parity of esteem has been given to stroke patient experience.

The national report, facilitated by a close partnership between the National Stroke Programme at NHS England and the Stroke Association, details experiences of treatment and care across the entire stroke pathway – from acute care through to community rehabilitation and life after stroke. 

Over 6,600 responses were collected from stroke survivors (a 37% response rate), which is a fantastic achievement. The majority of respondents reported feeling generally satisfied with the care they received along the whole stroke care pathway. High numbers felt they had been treated with dignity and respect, that their stroke was explained in a way they could understand, and they were made aware of how their stroke would affect their life – which is vital with a condition as life changing as stroke.

These are incredible achievements and a testament to the hard work of the highly skilled stroke specialists delivering care both in the hospital and community, not least given the complex nature of the stroke pathway but also due to the added challenges that clinical and community teams face day-day, and especially during the Covid-19 pandemic.

It’s important to celebrate these successes and reflect on how far we have come, but we must not stop here. This opportunity to listen to patients can enrich quality improvement projects along the entire stroke pathway.

Stroke is a life-long condition and has unique impacts which can leave stroke survivors feeling a loss of control. A high number of respondents felt that they were helped to understand their stroke and what would happen next. Some respondents stated that they would have liked more involvement in planning their therapies.

Therefore, starting conversations to help stroke survivors feel more involved in their stroke recovery are vital.

Stroke has wide impacts, ranging from those that are visible, like restricted movement, to the heavy toll of the those that remain hidden. A number of respondents indicated that they would have liked support with their emotions, mood and wellbeing, but they were not offered any. Psychological support across the whole stroke care pathway is vital and we must make sure every stroke survivor has access to it, as per the updated National Clinical Guideline for Stroke (2023).

Life after stroke support and services play a critical role in an individual’s recovery, and many respondents would have liked more ‘life after stroke’ support, ranging from peer support, advice from other organisations and returning to hobbies and activities. The Stroke Association acknowledges that it has a role to play in this and is committed to raising more awareness of its services and the peer support offered by stroke support groups.

Stroke survivors are at the heart of this report, their voices and experiences helped to shape it in its entirety; from developing and reviewing the survey, to taking part and sharing their experiences. We are incredibly grateful to every stroke survivor, carer, hospital and community clinical team staff member and all the people who’ve worked so hard to deliver this report, it’s a huge achievement.

As stroke professionals we owe it to every stroke survivor to prioritise the needs that have been highlighted.

The findings from this report are relevant to everyone in the stroke community and provide guidance on the improvements that need to be made. We all have a role to play, from those delivering care in our stroke units and community services, to those leading and commissioning networks of care in our Integrated Stroke Delivery Networks (ISDNs) and Integrated Care Systems (ICSs), and those making funding and policy decisions at a national level.

This a golden opportunity for us to work together to improve the quality of services in areas that matter most to stroke survivors and their recoveries. This will help the stroke community to start these important quality improvement conversations. Place-based reports outline a framework for local service planning and make recommendations for quality improvement. So, we urge you to read the reports and work together locally to make the most of this valuable patient voice data.

Juliet Bouverie OBE, Chief Executive Officer, Stroke Association

Dr Deb Lowe, National Clinical Director for Stroke, NHS England