Patient Involvement Within a Managed Clinical Network for Stroke Services

Patient Involvement within a Managed Clinical Network for Stroke Services

Focus Group with people who have had a stroke.

Aim

To ascertain how stroke patients would like to be involved with the evolving Grampian Managed Clinical Network (MCN) for Stroke Services

Methodology

Members of the existing Chest Heart & Stroke Scotland (CHSS) Volunteer Stroke Service (VSS) group that meets weekly in Aberdeen were asked if they were interested in this project. All agreed to participate, also agreeing that any other interested stroke patients could attend on the day.

The advantages of requesting an existing VSS group to act as a focus group were:

An established group where individual member’s needs were recognised, known and understood
An established group used to functioning as a group
Members with a cross section of problems including a substantial number with communication difficulties
Staff and volunteers trained in supporting those with communication problems
Venue, transport arrangements and time already organised
Other interested parties could be invited

The VSS coordinator divided the group into four tables, the division being determined by level of communication difficulty. At each table there were at least two volunteers, one facilitator and no more than five stroke patients. Volunteers either acted as scribes or conversation partners for those with impaired communication. All facilitators (appendix 1) were experienced in supported communication.

The tools and facilitator’s guidelines (appendix 3) developed for the Highland Focus Groups by CHSS S&LT Training Coordinator Manager were amended for Grampian use (appendix 2) and used to provide information and aid communication.

The meeting lasted one hour. Fourteen people who had had a stroke attended – 13 were members of the VSS group.

Results

Involvement / Number interested
Be a member of the steering group or local group / 1 (2 would like to know more about what this would entail)
Get an update from the MCN at the group / 6
As a VSS group, discuss issues as they are raised / 5
A small group from the VSS could discuss issues / 10
Become involved in raising awareness of patient issues with health professionals at training days / 9

One reason for the preference for the small group as a consultation group was that the room was too noisy. However members expressed the view that they were comfortable with discussions at group level. One member shared his/her experience of attending an NHS group:

Found to be intimidating (not a good experience)
Geared only towards professionals
Person who has had stroke might need professional help to attend meeting.

There was also general comment that professionals tend to talk in jargon not necessarily understood by patients. Of the nine members interested in ‘awareness raising’ 3 were happy to take part in a video. One member was particularly interested in the Education & training Sub Group.

Note that of the 2 members interested in more information about the subgroups one would have difficulties with transport and require communication support.

Issues that members thought should be addressed by the MCN were:

Patients should be involved in their treatment choices
Insufficient parking facilities at ARI ( also ‘Token machine’ difficult for left handed to reach)
Lack of information about the whole system in the Stroke Centre i.e. what would happen to ‘me’ when admitted
Stroke patients feel at the bottom of the list
Lack of interest from the Social Worker
Follow up after hospital could be improved – felt needed to be seen by GP as well as nurse
Consider a GP Clinic for Stroke patients
Questionnaire for Stroke patients
Health professionals should realise that each person who has a stroke is affected differently

Discussion

All facilitators considered the group had been successful in its aim. Using an established group was a key contributing factor. Time was allowed for the members to express issues they felt were important but this did not overwhelm the deliberations.

Conclusion

The stroke patients in this group are keen to become involved in the emerging MCN. They felt that the MCN was a good idea for voices to be heard.

Involvement initially would include

A small group meeting to act as a consultation group.
Involvement in ‘raising awareness’ at training events.

Future Plans

On 26th May 2005 the Public Involvement Subgroup discussed this report and agreed the following:

To contact the person interested in joining an MCN group.
To organise a consultation group as and when required.
To discuss with the Stroke Training Coordinator involving patients in ‘raising awareness’ at training events.

Acknowledgement

We would like to thank all members and volunteers of the Aberdeen VSS group for their hard work in contributing to making this focus group such a successful enterprise.

Appendix 1 - Facilitators

Barbara DalgettyCHSS Community Services Network Regional Manager North of Scotland

Heather FyvieCHSS Community Services Coordinator, Aberdeen North

Jackie MorrisCHSS Speech & Language Area Training Coordinator

Lynne TawseCHSS Community Services Coordinator, Aberdeen South

Appendix 2 – Communication Tools

What is a Managed Clinical Network (MCN) ?

What does an MCN do?

Patients

Organisations

Services 

Health Staff 

The Grampian Stroke MCN

Steering Groupmeets every 2 months
Consists of people from all areas in Grampian

Sub Groups

Some groups meet more frequently than others.

Frequency of meetings depends on work required to be undertaken.

Organisation of Stroke Services
Secondary Prevention – Reducing the Risk of a stroke
Education and Training
Discharge Planning
Patient & Carers Involvement

 ADVANTAGES of being INVOLVED

Influence future services
Help develop materials e.g literature
Educate/train health professionals

Do YOUwant to influence services in Grampian?

How ???

1Be a member of the steering group or sub group

2Get an update from the MCN once/twice a year at the group

3As a VSS group, discuss issues as they are raised

4A small group from the VSS could discuss issues e.g comment on information packs etc

5Become involved in raising awareness of patient issueswith health professionals at training days.

Appendix 3 - Facilitator’s Guidelines

The aim of the exercise is

To inform members of the opportunities to make their voices heard
To offer alternative ways for them to become involved in influencing service development

HOW?

Each table is provided with sets of cards outlining the key points
MCN
Locality stroke interest groups
Possible ways of involvement

At the pace appropriate to your group, you should work through the key points on each of the cards. Allow time for questions; check understanding; clarify where necessary.

Options for involvement are provided on separate cards. Present each option individually; briefly expand on what it would mean; allow time for any discussion/clarification around each point

Present the options on the table, clearly displayed. Remember that if a member has reading difficulties, the communication partner will need to offer significant support here.
Points to Raise:
Steering/local group: time commitment; expenses paid; take part in round table discussions with health professionals; medics ; administrators etc
Someone visits the group with an update on discussions at the MCN. If this is a possibility, please establish whether the group would prefer a visit once or twice a year.
Explain that someone would pass on specific issues which could be discussed as a group – as we are doing today.
If certain people are interested, they could meet together during group time to discuss issues as they are raised by the MCN
Individuals could become involved in training health professionals e.g videos, talking about stroke; specifically within the VSS, we will be looking for people to help us train staff and volunteers

Depending on the group, there may be further discussion around some of the options – allow this to develop.

When appropriate, draw the discussions to a close and ask if anyone would like to consider further involvement. You may need to address this question to each person individually. Reassure individuals that they are not committing themselves to anything at this stage and that by expressing an interest in further involvement will ensure they get more info on time, tasks etc. At this point, the “scribe” should record the comments from members.

Clarify what each person is saying in response to the options and pull together the overall discussions. Thank the members for participating and “giving up” their usual group activities.