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Ending the postcode lottery of stroke care

The Chief Executive of the Stroke Association looks at how integrated care systems provide a golden opportunity to improve stroke care and services both locally and nationally and make NHS Long Term Plan aspirations a reality:

Stroke is a brain attack and an utterly devastating condition, disabling half of the 100,000 people it affects every year and linked to a raft of other physical and mental conditions.

Left unchecked, the number of disabled stroke survivors will rise by a third over the next two decades, contributing to a near trebling of the economic cost of stroke to around £90 billion annually.

Behind the hard-hitting statistics lie countless personal stories which are the real driving factors for why I feel so passionate about dramatically improving stroke outcomes and experience.

Stroke survivors, and those close to them, recognise the enormous progress towards improving awareness of stroke and the quality of hospital services in particular. But they’re also clear that much more needs to be done, including bridging the gap between hospital and community services, and eradicating the postcode lottery of care.

For me, it’s always been clear that to drive meaningful improvements, you’ve got to be part of the change rather than merely carping from the side-lines.

That’s why we at the Stroke Association have been working in close partnership over the last year with NHS England and others from across the system to renew the national focus on stroke and help drive the changes we all want to see.

Working first with Professor Sir Bruce Keogh and now with Professor Stephen Powis and his team, we have established the National Stroke Programme, which I’m proud to co-chair alongside Stephen. The Long Term Plan, launched earlier this month, builds on this programme and sets out how we will use the certainty of the five-year funding settlement to make further progress for stroke survivors and their families.

Stroke really does embody the challenges the health and care system faces. But stroke also demonstrates the huge value to be gained by tackling the condition in a joined-up way.

Already, right across the country, Stroke Association teams support their local health and care systems to make improvements. We have, for example, intervened to support major acute service change proposals in Kent and Essex and support the emphasis in the Long Term Plan on the need for acute service reconfiguration based on existing evidence. The plan promotes new Integrated Stroke Delivery Networks as a way to increase the number of patients receiving world-class specialist care, including thrombolysis and mechanical thrombectomy.

In Greater Manchester, which has already reshaped its acute services with really positive outcomes, we work closely with the Operational Delivery Network to, among other things, develop a new community rehabilitation pathway. And in Liverpool, our teams are heavily involved in exciting work to improve the availability of psychological support for stroke survivors.

But building on that, one of the first things we’re doing through the programme is start to build relationships with several integrated care systems (ICSs) to highlight and embed best practice, and support them along the journey to world-class stroke services.

We recognise that ICSs provide an opportunity to embed improvements in stroke services and begin implementing the National Stroke Programme at local level, ensuring that the ambitions set out in the programme and associated working groups deliver tangible improvements for people affected by stroke. They are well positioned to become exemplars of integrated working to deliver the national programme.

Working locally with our stroke support services and our colleagues within the NHS, we’re putting together a range of support offers to help facilitate implementation and translate the Long Term Plan’s ambitions into local action.

We are in one-to-one discussions with a number of areas to develop tailored offers of support. This includes: support for local clinical leadership; facilitating improvements in post-acute and community pathways; publicly supporting acute stroke service reconfigurations and local engagement; facilitating stroke survivor and carer involvement and voice; and piloting a tailored Stroke Passport. We will be communicating our offer directly to ICS and STP areas in the next few weeks.

We are also working to build a national community of best practice. We launched this with an event in October 2018 and have started a series of best practice webinars on six-month reviews and improving data capture to demonstrate effectiveness across rehabilitation interventions.

So, whether it’s by being involved in the National Stroke Programme or working together at a local level to run an engagement event to encourage people affected by stroke to have their say on a service change proposal, NHS England and the Stroke Association are already doing lots together and we want to do more.

I’m hugely excited about this work and very grateful for the opportunity we have to work with our colleagues from across the NHS as we look to make progress.

For me, linking national priorities to local improvements in an integrated, relationships-based way is absolutely key to making a success of the National Stroke Programme and improving outcomes for those affected by this devastating condition.

Juliet Bouverie

Juliet has been chief executive of the Stroke Association since June 2016. Prior to joining the charity, Juliet worked at Macmillan Cancer Support for 16 years in roles including head of planning and policy, director of corporate development and executive director of services and influencing. In this last role she led a staff team of over 800 people, managed a budget of £150m and oversaw a programme of award-winning innovations and service design across the UK. She also secured important government commitments to improve patient experience and post-treatment support through the 2015 Cancer Strategy for England.

Prior to Macmillan, Juliet worked at the British Red Cross in strategy and service evaluation, the Community Development Foundation in fundraising and a political consultancy. She was a trustee of the Long-Term Conditions Alliance and chaired the Cancer Patient Experience Board for University College London Hospital (UCLH) from 2011 to 2014.

Juliet has a degree in modern languages from Oxford and a postgraduate diploma in management.

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  1. Samantha Reed says:

    As a professional liaising exclusively with Occupational Therapists and as a stroke survivor carer I would welcome an opportunity to feed into the National Stroke Programme. Please contact me should you wish to discuss further. Kindest regards.