The NHS is forgetting stroke survivors

 But you're not endorsing the only goal in stroke: 100% recovery!

The NHS is forgetting stroke survivors

To meet rising demand, enhance recovery, reduce costs, and ensure every survivor thrives, the UK needs equitable, personalized, and accessible life after stroke services

Stroke strikes every five minutes. There are more than 100,000 strokes each year and 1.3 million stroke survivors living in the UK today. These numbers are only set to grow, and by 2035, the number of stroke survivors living in the UK is expected to rise to more than 2 million.

The National Clinical Guideline for Stroke is explicit on the need for life after stroke support, alongside rehabilitation, to be available to all. So, why are thousands of stroke survivors still missing out on this vital support?

We know that every stroke is unique, with some stroke survivors left with long-term disability while others experiencing communication or vision problems. For others, the emotional impact of stroke is devastating. Long-term support must evolve with the needs of a stroke survivor.

Life after stroke support services form a vital part of the stroke care pathway. They provide information on stroke recovery such as rehabilitation options, as well as psychological and emotional support, which are often overlooked but are a lifeline for many to rebuild their lives and regain their independence. They also help to reduce the risk of a further stroke through secondary prevention, and improve the confidence, self-esteem, and physical and mental wellbeing of those affected by stroke, keeping many out of crisis situations with their mental health.

Tailoring support to unique stroke survivors

Life after stroke support cannot be seen in isolation. It must be provided as part of a whole pathway approach to stroke, to deliver the best outcomes for stroke survivors. Health boards, trusts and commissioners across England must recognise the value of life after stroke support and plan so it has parity of esteem with other parts of the stroke pathway and meets guideline levels of support.

One in four strokes happen in people of working age. And our research shows that more than a third of working age stroke survivors gave up work following their stroke while half felt they needed support for longer or more frequently. What’s more, recurrent strokes account for 25 per cent to 30 per cent of all strokes, which may be the result of unsuccessful secondary prevention.

Six-month post-stroke reviews assess the changing needs of a stroke survivor and identify the need for any further support or interventions. However, of the stroke survivors eligible for a six-month review between 2022-23, only 37 per cent received one, down from 43 per cent in 2019-22. This is a worrying trend. Too many are missing access to the long-term support they need to give them the best chance of recovery.

Individual recovery is important, but life after stroke services also have system wide and economic benefits too. Long-term stroke support has been shown to reduce pressures on primary care, social care, and the hospital accident and emergency.

There are also major benefits to primary and community care, and residential care.

Every stroke survivor deserves to have the support in place to thrive, not just survive, after their stroke

Universal access to a Stroke Key Worker and life after stroke support, allows stroke survivors to gain confidence in self- management by supporting personalised tailored conversations about their hopes for recovery. Unmet needs can be spotted earlier, before it leads to a crisis, reducing pressure on primary care services

All this adds up too. A single stroke avoided saves £22,175 a year when you take into account NHS and social care costs – these savings only grow over time, as stroke survivors typically need longer-term care. Life after stroke services could support working age stroke survivors back into work and boost the labour force at a time when record numbers of people are out of work due to long-term illness.

The role of charities and partners

As a charity, we recognise our role alongside partner organisations, in supporting people affected by stroke. And we are committed to ensuring every stroke survivor has the support in place to thrive, but the government and health providers must play their part too.

The postcode lottery and variation in access to life after stroke support must end; a stroke survivor’s recovery shouldn’t depend on where they live.

Across England, we urge integrated stroke delivery networks and integrated care boards to work together and fully implement the National Stroke Service Model and Integrated Community Stroke Service Model, using the Integrated Life After Stroke Support Guidance. This will require the provision of personalised practical, emotional and social support for people affected by stroke, that is proactively delivered in parallel with rehabilitation, for as long as they need it.

Nationally, the Department of Health and Social Care must include guideline recommendations for life after stroke services in the major conditions strategy. Health providers and decision-makers in England should determine achievable long-term pathways towards the recommended levels and quality of long-term stroke support laid out in the National Clinical Guidelines for Stroke 2023.

Every stroke survivor deserves to have the support in place to thrive, not just survive, after their stroke.