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The National Stroke Strategy - one year on

09 January 2009

People with aphasia reflect on stroke service development, one year after the National Stroke Strategy.

After the National Stroke Strategy was published in 2008, people with stroke became involved in a range of strategy implementation groups aimed at putting the aims of the strategy into practice. Last month, a group of people with aphasia met up to share thoughts on what’s happening in their local areas.

Several members of the group, such as Basia and Catriona sit on stroke network groups. Peter is a member of a stroke research network while Susan and Jane have attended or presented at stroke service consultation days. Alan Hewitt runs a project called Connect-ed and also sits on the Stroke Programme Implementation Board. He uses these meetings as a touchstone to take the pulse of actions and activities involving people with stroke and aphasia.

The good news was that people with communication disability were being encouraged to join user groups and share their views and experiences. Everyone was positive about the commitment of the stroke improvement teams to really listen to what had worked well or not so well for them. Some groups had responded positively to feedback to make meeting notes and presentations more user-friendly. One group of commissioners and clinicians had changed their whole model of life after stroke support on the strength of feedback about ‘wanting a life not a day centre!’.

People at the meeting also discussed some of the barriers which they felt were preventing stronger participation in shaping the changes. In one area there was no clear process for volunteers or service users to access travel or support costs. For example, Jane expressed concern that she would have to use time from her paid carer to help her read through and comment on meeting notes, while Catriona was frustrated that she had to wait so long for her petrol costs to be refunded. Another challenge was informing people sufficiently ahead of time about the meeting and its purpose. A number of people felt that the focus of meetings was not always clear. Also, with a number of different groups looking into health services, it isn’t always easy to see how all the different kinds of consultation fits together. Finally there is never enough time to engage in the discussion – ‘too much to cover too little time’.

A few other common concerns emerged from the group discussion. These included:
• A feeling that many discussions in their group were medically focussed and sometimes  failed to address life as well as services
• A worry that many of the ‘rehabilitation’ solutions were not long enough or sufficiently flexible e.g some people want counselling at the beginning, some after many years, some feel better supported by friends or peers
• A need for more open referral to therapy and support services
• Awareness-raising seemed to focus solely on emergency needs of patients and were not addressing the everyday experience and support needs of  people living with stroke and communication disability
• lack of routine data collection about numbers of people with aphasia/ communication disability getting in the way of service planning and developments for this group specifically.

Finally, the group began work on a way to measure the success of improved services – a kind of set of ‘performance indicators’ created by people with aphasia. We hope this will support service improvement teams to set a higher bench mark for life after stroke services.

If you provide services and want to know how we can support your team with service consultation, making materials accessible or ways to develop user led services contact our consultancy team. Or if you have aphasia and want to tell us your experience of local service improvements/ concerns contact Alan Hewitt. 

I want a life, not a day centre

People with aphasia reading National Stroke Strategy

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