The changing landscape for stroke

By Juliet Bouverie, Chief Executive of the Stroke Association

The scale and impact of stroke to our society and economy is enormous and it’s growing every year. It’s also expensive, currently costing the UK around £26 billion annually. Left unchecked, the number of disabled stroke survivors will rise by a third over the next two decades, leading to costs spiralling to up to around £90 billion per year. This devastating disease affecting 1.2m stroke survivors and their families remains one of the greatest health challenges of our time.

However, while shocking, those numbers shouldn’t obscure the raw, confusing, and often completely shattering personal impact on those people whose lives have been affected. In my job, I’m privileged to work with stroke survivors, carers and their families whose lives are turned upside down by this devastating condition. I say privileged because I’m amazed by their determination and resilience to overcome the worst that stroke throws at them and make the best possible recovery after their stroke.

On World Stroke Day, 29 October 2018, we’re celebrating the remarkable recoveries that people are making every day. Whether it’s taking your first steps after your stroke, finding new ways to communicate, getting back to work or running in a marathon, every person’s recovery matters.

But recovery doesn’t happen on its own. Speaking at the recent NHS Expo event, I was acutely aware of the how much we still have to do.

One of the biggest issues we need to address is the inequality of support services that stroke survivors and carers have access in the post-acute phase. Too many people have their lives saved in hospital but are then discharged into the community and feel abandoned.  Too many commissioners are simply failing to prioritise and provide the rehabilitation and long-term support set out in the national clinical guideline for stroke. It’s a postcode lottery out there and thousands of people are falling through the gaps.  Supporting people to recover makes sense on moral grounds – stroke is the single biggest cause of complex adult disability and it is unacceptable that follow-up in the community is so poor – but also on financial grounds.  Stroke is a recovering condition for many and with the right support and early interventions, people’s disability can be reduced, those of working age can be supported back to employment, and costs can be saved.

This is the encouraging message – improvements in stroke are achievable. The evidence of what works in both stroke prevention, treatment and rehabilitation is strong.  And new breakthroughs such as mechanical thrombectomy, a clot retrieval procedure, are indications of an exciting future ahead. We need to be stronger in implementing at scale what we know works. We also need to work together.  Stroke and its consequences (including with other costly and complex conditions such as diabetes and dementia) is complex and the challenges are is bigger than any one charity or arm of the NHS. To achieve integrated care and sustainable improvements to clinical outcomes and quality of life, the whole system must work together.

For the last year or so, that is exactly what we’ve being doing in stroke. Driven by the experience and expertise of stroke survivors, their families and a community of stroke professionals, the Stroke Association has been working with NHS England and others to develop a new national stroke programme. This sets out clear ambitions and deliverables over the next few years and focuses on identifying and scaling up the fantastic work we know is already going on in some parts of the country. The Stroke Association has been at the heart of this change, cajoling, persuading and leading cultural change and policy thinking.

Thanks to the unbelievable tenacity and perseverance of those affected by stroke and the professional community, stroke is now a national priority for the NHS in England. This is enormously significant and wouldn’t have happened without us all pulling in the same direction.

This is an exciting, optimistic time to have a positive impact on stroke and an opportunity to work in new more efficient ways across the whole system. We’ll be doing everything possible to capitalise on this opportunity and ensure that stroke treatment and care is worthy of its new priority status. Over the next weeks and months, we’ll need the help of health and social care commissioners and professionals to implement the new programme. I know I can rely on you, the health and care community, to work with us to give stroke the priority it deserves.

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