Getting the board on board (FAST stroke campaign)

Background

A stroke or ‘brain attack’ occurs when a blood clot blocks an artery or a blood vessel ruptures or bleeds. Each year in England approximately 110,000 strokes and a further 20,000 mini-strokes or Transient Ischaemic Attacks (TIAs) occur. Many people die from the stroke itself or from complications such as pneumonia or immobility, while others survive with impared cognitive function and severe disability. Stroke is therefore a leading cause of adult disability, having a devastating impact on the lives of those effected and their families.

The National stroke strategy, launched in December 2007, aimed to reduce mortality and disability by improving the prevention, detection and management of stroke. Prompt medical attention for both mini-strokes and fully-blown strokes can lessen the risk of mortality and disability. Raising awareness of signs, symptoms and appropriate action is therefore at the heart of the national strategy.

The ‘FAST’ mnemonic was designed to alert people to a simple and specific assessment for possible stroke and this was promoted via a national public awareness campaign – Act F.A.S.T. – which began in February 2009 to increase prompt identification and referral of suspected stroke cases. FAST stands for:

• Facial weakness – Can the person smile? Has their mouth or eye drooped?

• Arm weakness – Can the person raise both arms?

• Speech problems – Can the person speak clearly and understand what you say?

• Time to call 999 if you spot any one of these signs

The National Stroke Strategy documents recognised that people from certain minority ethnic groups are at higher risk of stroke than the majority White British population. Innovative ways of working would be needed to ensure that the message is received by all those who need it. Nevertheless, concerns were raised that the national Act F.A.S.T. campaign was geared towards the White British population and may have been inappropriate for minority groups.

Sheffield had achieved the national target for reduction in stroke mortality by 2008, but senior public health staff were concerned about the persistent inequalities in premature death from stroke across the city. In particular, there was concern that socioeconomically deprived and minority ethnic communities may not have been reached by the universal FAST campaign.

The project journey

Laying the ground for focused insight work

In 2008/9, under the leadership of the public health consultant, a series of local analyses and strategy documents, including a Health Needs Assessment, were prepared and presented to senior managers within NHS Sheffield. These made the case for investing in prevention and awareness work, and also highlighted the particular needs of black and minority ethnic populations (albeit based on limited local data). Meanwhile, a trawl of work elsewhere in the country and a review of published literature by a local colleague indicated that very little was known about how to effectively raise stroke awareness among minority ethnic communities in the UK (Ryan, 2010).

Armed with this background information, the public health consultant was then able to work closely with the Coordinator of the North Trent Cardiac Network to argue the case for Network investment in new social marketing work to be undertaken in Sheffield. Awareness raising had previously been identified as one of the areas best tackled at a regional level and a focus on inequalities fitted well with the remit of the network. Nevertheless, ‘inspirational leadership’ was felt to be a major factor in securing this project investment. In August 2009, a detailed brief for the social marketing project was put out to tender and the first phase – the Insight work – began in March 2010.

Meaningful engagement and rich insight

Social marketing means many things to many people, but here the focus was on adopting an inclusive approach to working with minority ethnic communities, something which the public health professionals at NHS Sheffield felt was unusual and highly beneficial. Adopting principles of co-production, the team went out and about in local communities to identify influential local people, and then conducted a series of focus group discussions and informal interviews over a period of four months. The work aimed to capture variation, as well as commonalities, by holding discussions with people from different minority ethnic groups and for men and women separately, using qualified translators to allow non-English speakers to participate, and segmenting the sample population further by age and migration status. The team wanted to include people who do not readily engage with consultation events and to continue data generation until consistent themes could be identified. Comments from the staff involved reflected this desire to be inclusive:

It’s not always appropriate to sit around the table with people, it’s easier to go to them and have a conversation in the setting that they’re comfortable with at a time that’s convenient to them

It was a more inclusive approach; to work with people from those communities instead of doing something to them

This approach was demanding, requiring time and tenacity to build the necessary trust. But community members proved very interested in knowing more about stroke, and the work produced many new and surprising insights for the commissioners. In particular, a number of barriers were highlighted in phoning 999, the ‘T’ in FAST.

Making the case for further investment

Following the Insight work, the project team had to make the case to the Network Board for investment of further resources for Phase Two; the development work. This proved to be a long and difficult process, largely because the Board were unfamiliar with the social marketing approach and unused to making decisions on the basis of qualitative evidence. The team adopted a number of strategies to effectively package and present the findings, but had to visit the Board twice to effectively convey their message. The key was to deliver something short and snappy, ideally on just one sheet of paper, which could:

Confirm of the credibility of the approach;

Illustrate the value of the new knowledge generated;

Convince the Board of its potential to inform effective future intervention.

By presenting the board with information in a ‘matrix’ grid format, the group were able to quickly get across their message, as explained by one of the team members:

“they [the Board] were struggling; a cultural shift was required. The matrix was really useful… in terms of presenting the data we needed to think about what would, you know, push their buttons”

Developing and piloting – coproduction in action

Once additional funding was finally secured towards the end of 2010, the Pakistani, Yemeni and Somali communities were selected to be taken forward into the development phase; primarily because of identified unmet need and potential for effective co-production with these community members based on the previous stage. Discussion groups allowed community members to reflect on the Insight findings and to confirm the direction of the work. This was followed by formal co-production sessions, in which community members and the project team worked together to design and populate information materials. These sessions also allowed the identification of a strategy for disseminating these messages at community level that drew on the resources and interests of local people. The project team were excited by the level of engagement that was achieved, as explained by one team member:

What’s most important is the people that are coming to the fore, in terms of people who are going to take on the messages within the community after our involvement has stopped. It’s an example of research before something happens, you know, using research effectively.

Challenges and lessons learned

An absence of good local data illustrating ethnic inequalities in disease or health service uptake need not necessarily be an obstacle to getting focused work underway. Instead, clear national directives, judicious use of national level statistics, and inspirational local leadership led to the necessary support and resources for the project.

Engaging an external organisation to undertake the social marketing work was essential given the limited existing skills and heavy workload of the public health commissioners. However, this could have resulted in few opportunities for increasing confidence and competence within the commissioning organisations, and reinforced perceptions that commissioners are distant from the communities they serve. Clear contractual agreements and a mutually supportive, collaborative working environment can overcome these risks, and ensure team members gain from the external expertise.

Knowledge translation is essentially effective communication. This means being clear on what the goal of the communication is and tailoring the content and medium of messages to the audience. To gain the Board’s backing for the Development Phase, the project team had to put their rich, qualitative insights to one side and focus on clear messages in a format that resonated with their audience. Meanwhile, sharing with members of the public at community level required the team to use fluid and flexible oral communication strategies to gain trust and involvement.

Turnover in team membership, and particularly leadership, can compromise the sustainability of projects, especially when they are innovative and outside the ‘core’ remit of commissioning organisations. Clear documentation and formal agreements at the outset would have helped team members maintain momentum even when key team members moved on to new roles.

Tenacity is crucial in delivering this sort of project. Enthusiasm, commitment to the approach and supportive team working enabled the group to overcome problems associated with long delays in securing funding. Team members were able to identify benefits to extending the project, including more time for sustained interaction at community level and for greater appreciation of the value of the social marketing approach.

Impact and next steps

The project has had a positive impact on the knowledge and practice of team members. Staff gained a better understanding of how to convey knowledge effectively to different audiences, and in particular, how to attach value to qualitative experiential evidence. Staff also gained confidence in how to effectively engage with minority ethnic populations using principles of co-production. Project evaluation is currently in progress.

The project team hopes that both the specific knowledge around stroke awareness among minority ethnic communities and the more generic learning related to engaging communities in producing appropriate solutions to health issues, can now be used in other settings. Team members are keen to test the transferability of the findings to other communities and disease areas. The North Trent Cardiac Network and the CLAHRC (South Yorkshire) offer potential for such dissemination and sharing. However, there are concerns that the current climate of cost saving and restructuring is stifling innovation and that this potential may not be fully realised in the near future.