Community Voices Report

The report is based on over 160 responses from current or prospective community voices to our survey. Their responses have given us a snapshot of current experiences from a national perspective (England only).

This is what we have learnt:

Who filled it out?
62% of respondents were stroke survivors with 19% being carers and the other 19% marking ‘other’. This included carers for stroke survivors who had passed away and health professionals. 21% of respondents were18-45 years old with 45% being between the ages of 46-60 and 30% telling us that they are 61 or over. 93% of respondents told us that they are White-British and 56% said that they have a disability.

Involvement context
The ratio between those who are currently involved as a patient/carer representative and those who are not but would like to be is around 50:50. 24% of respondents said they are involved with the NHS Trust (usually another name for a hospital), 19.5% are involved with the Stroke Network, 19% with the Primary Care Trust and 17.7% are a member of the Local Involvement Network (replacement for the Patient and Public Forums).

Methods and Satisfaction
We wanted to find out how people were involved and what their level of satisfaction was for each method. What we found is that 61% of respondents were either pleased or very pleased with being a member of the board, 67% were pleased or very pleased with being a member of a working group, 61% of respondents were pleased or very pleased with their participation in a consultation meeting but only 48% were pleased or very pleased with responding to a questionnaire. Overall there is a fairly high level of satisfaction but there is a large proportion of people who are either simply satisfied or unsatisfied with their involvement which must be addressed.

Impact
We felt it was important to focus on patient/carer representatives’ perceived impact on improving stroke services. Results overall were less encouraging in this section. 40% of respondents who said they are a member of a board, 34% of respondents who are a member of a working group and 43% of respondents who fill out questionnaires felt that they had had an impact but it was neither high nor low. Even more worrying was the 26% of respondents who said they filled out questionnaire reporting that they had either a low impact or no impact at all.

Those who had a positive experience of impact felt that contributing factors to this were:

• a feeling that their knowledge and experience were being utilised
• receiving support and training
• getting feedback on the work they were contributing  to
• having a feeling of progress being made
• knowing that their involvement would be sustained over a period of time

Those who had a more negative experience felt that the following had contributed to this:

• the involvement was tokenistic and just a box filling exercise
• lack of feedback on progress
• lack of sufficient planning to include those with aphasia
• concentrated too much on the medical side and not enough on the social side
• there was often a narrow focus and unclear objectives about the work

Barriers to effective working
We wanted to know what current representatives felt were the barriers to them being effective in their work. 28% told us that it was the lack of training. 19% told us that it was a lack of feedback. 13% said there was no opportunity to be a member of a consultative group and 12% said there was no flexibility in methods of communication.

Barriers to getting involved
Of those people who said they are not currently involved in shaping stroke services, but would like to be, an overwhelming 80% of respondents said that they either were not aware of the opportunities or did not know how to get involved. Therefore clearly more needs to be done to reach out to those people who have a contribution to make but do not know the system well. As part of this project we will be informing these people about the opportunities in their area.

You can read the report in full here:
Community Voices - Survey report (132 kb) [pdf]