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Sharing the key messages from the UK Stroke Assembly

The UK Stroke Assembly is the largest gathering of people affected by stroke and aphasia in the UK. Ran as a series of events across the UK, Stroke Assemblies provide an opportunity for those affected by stroke and aphasia to have their say and influence future campaigns, share experiences and hear developments in stroke care and research.

In 2019, events were held in Northern Ireland and East Midlands, which were attended by 230 people directly affected by stroke and aphasia. As part of these events, key messages are gathered about the things that matter most to those living with stroke and what they want healthcare professionals and decision-makers to know.

The key messages from 2019 were:

  • Taking action on stroke is where attendees really see themselves having the most impact. Using their voice and offering real patient or carer experiences to demonstrate the true impact of stroke to influence stroke professionals and influencers, and shape future research and services.
  • Those living with stroke want to know more about updates in stroke care and research, and how they can get involved. Public and patient involvement is seen as a priority by those living with stroke to help shape a better future.
  • More support is needed for carers and to recognize their value.
  • More work is needed to partner with other organisations for integrated long term support.
  • Frustrations of getting back to work after a stroke and the impact this has on the individual and families.
  • Hearing other people’s experiences of stroke and the achievements individuals have made in their recovery is very important and beneficial, giving inspiration and hope to others.

These key messages were shared with stroke professionals at the UK Stroke Forum in December 2019, and the topic of getting back to work was explored in more detail as the focus of a parallel session attended by over 170 multi-disciplinary stroke staff.

Getting back to work - session feedback

The session was pulled together by the UK Stroke Forum service user representatives, all stroke survivors. The service user reps had asked stroke survivors and carers at the Assembly event in East Midlands what issues were most important to them – getting back to work continues to be high on the agenda. For some people, the physical changes they’ve experienced means they can no longer undertake the tasks required of their job. Or the cognitive and mental effects can make working difficult or impossible. Stroke survivors may no longer cope with longer working hours or may need to find alternative careers.

This was also reflected in a larger survey conducted by the Stroke Association in 2018, of over 11,000 stroke survivors and carers, to find out more about their lives and everyday experiences of living with the effects of stroke. The results of the survey are published in four reports; the ‘wider impact of stroke’ report found:

  • More than a third of working-age stroke survivors gave up work following their stroke.
  • Of those who were able to return to work, 16% of working-age people reduced their working hours or responsibilities.
  • And 6% of working-age stroke survivors changed their careers following their stroke.

Speech presentations

The frustrations of getting back to work and the wider impact this has was the focus of the UK Stroke Forum session with Lizzie Printer, a stroke survivor and UKSF service user rep sharing her experiences. Lizzie was a high-flying lawyer before a near-fatal subarachnoid haemorrhage at 46 left her disabled and unable to work.

Lizzie spoke about the importance of her pre-stroke working life and the impact of her inability to return to work. This was an emotional talk that captured the audience and called upon all in the room to have a wider and integrated multi-disciplinary perspective on helping others to return to work. Or at minimum, not removing hope for a fulfilling future even if work is different. Lizzie went on to talk about her successful voluntary work and other research and awareness projects she is involved in, and the positive impact this had had on her wellbeing.

Following Lizzie, Dr Kate Radford, Associate Professor in Rehabilitation Research, University of Nottingham, went on to highlight the RETAKE project and whether early stroke-specific vocational rehabilitation could improve an individual’s chances of a successful return to work. This includes the barrier and enablers that could support this and the long-term impact on an individuals’ health. Dr Radford stressed that the UK Government wants to ensure people with long-term health conditions are supported in returning to work, and that the Clinical Guidelines suggest this should be routinely provided in stroke rehabilitation. But more research and evidence is needed in to support stroke survivors’ return and keep them in work.

Moving forward

To continue the important links between both UK Stroke Forum and UK Stroke Assembly, teams will continue to communicate regularly and identify opportunities for closer working. This will ensure your messages continue to be heard by professionals, encouraging future developments in research and stroke care.

For more information about the UK Stroke Assembly events, please visit our past events page.

Or click here to read last year’s key messages on psychological support.