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Lancashire and South Cumbria Stroke Programme – using patient experience and engagement


We managed the Lancashire and South Cumbria Stroke Service Review as a major collaborative exercise, including from the outset patients, carers and members of the public as well as commissioners, providers from acute and community services, public health, the Stroke Association and community groups.

The Lancashire and South Cumbria Sustainability and Transformation Partnership (STP) area was failing to meet targets set for stroke services. Individual efforts to address this by STP partners were not working because of complex interdependencies so it was decided to take a collaborative approach. This programme to ensure a high standard of services across the whole stroke pathway, from prevention to long-term survival, involved:

  • development of an integrated stroke services specification
  • identification and evaluation of options for delivering the new specification
  • engagement with service users, carers, the public and other stakeholders to help with this process.

The programme was managed by MLCSU’s Service Redesign Team, with business intelligence and IT support as well as communications and engagement.


Patient input was obtained during the development of the proposed stroke service specification. A patient representative was a member of the Stroke Review System Board and nine Stroke Association support groups across the patch were visited to share information and obtain feedback based on their experiences. Approximately 140 stroke survivors, carers and members of the public gave feedback via facilitated discussions. The large specification document was presented in simplified form as a one-page diagram, ‘The stroke services continuum’.

Subsequent options for a hyper-acute and acute service were put to stroke support groups, and clinical commissioning groups’ (CCG) public membership groups and forums for comment on the evaluation criteria, their weighting and scoring method.

The review also highlighted a perceived lack of access to good quality information, in an appropriate format that is specific to the stroke survivor’s phase of recovery and their needs. In response to this, stroke survivors, their relatives and carers, staff and others with an interest in stroke services worked together to produce a guide. Altogether, more than 30 people took part in four work group sessions held over six months, many attending regularly.


  • The new stroke service specification was developed with patient, carer and public involvement
  • Weighting of evaluation criteria was amended following feedback
  • Work group sessions resulted in publication of Lancashire and South Cumbria Stroke Information Guide as a web-based tool available through all web devices, and also in a printable format. The guide was promoted via a YouTube video and distributed to primary care, hospital teams, community health services and the voluntary sector to support people to access good quality information from a variety of reputable sources
  • Feedback from the stroke information work groups also contributed to the development of a ‘Key Messages’ document subsequently used to share progress updates and news about the programme from the Stroke System Review Board.

“Great support from the CSU on the Stroke programme – driving progress and supporting change in a positive and responsive way.” 
Jan Ledward | (former) Chief Officer, Greater Preston CCG and Chorley & South Ribble CCG; Senior Responsible Officer for the Stroke Programme (now Accountable Officer, Liverpool CCG)

“I found the guide invaluable.”
Nancy Skidmore | stroke survivor

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