Support groups

Admission to the ICU is traumatic and life-changing for patients and their relatives. Support groups can help with the transition by providing advice, support and lessening the load.

ICUsteps run a growing number of support groups around the country. Also, there is a support network in Reading. On you can find videos of patients sharing their experiences. Finally, on the online forum, also run by ICUsteps, you can support and be supported by other patients and relatives.

If you wish to set up your own support group, this page offers a step by step guideline. You can also download a pdf version of this page.

1. Using a wider network

Wider network: Some support groups have found that there are specific advantages to being directly supported by a 'Mother Trust' which can provide the professional, administrative and clinical support required to run an effective support network.

Income and insurance: Being attached to a Trust would also negate insurance and other support costs as well as provide a possible income stream from the hospital’s charitable donations. It would also provide professional support in the area of fundraising and in addressing any clinical or operational questions that may arise.

Or be independent: Some support groups have, on the other hand, found it more advantageous to be completely independent of the hospital and prefer to run the group with its own volunteers and administrative support.

2. Set your group

Find your members: The steering groups should be a partnership between patients, relatives and healthcare professionals. Find patients and relatives who have been out of ICU for 6 to 24 months. Healthcare professional attendance may need hospital agreement. The members of this group, the steering group, must be prepared to give their time in actively.

Meet each other: The group should meet at least 3-4 times to build rapport and establish the group’s structure before launching. This is also the forum for patients and relatives to talk about their experiences to each other before they offer that service to more recent patients.

Define group structure: Agree individual members’ responsibilities, e.g. chairman and secretary.

Independent or not: Decide whether the group should be independent from the hospital so that it is not seen as a hospital service or liaise with the hospital’s administrative support staff to assist in the start up.

Agree on the legal entity: Is the group a charity (can’t if the income is less than £5K per year) or an unincorporated organization such as a voluntary group with charitable aims?

3. Finance and insurance

Find funding: Set minimal funding requirements (less than £500 per year for venue and supplies). Contact the local CVO (Council for Voluntary Organisations) for funding advice and organsational support. Consider sponsored events (one event could cover costs for an entire year). Also, consider approaching the various medical supply companies. Also, set up a bank account.

Insure your group: Most venues will have public liability insurance but you need to check this. Groups may want to consider having their own public liability insurance to provide cover against possible legal action over things said at group (PLI for a charity up to £2.000.000 can cost as little as £160 per year).

4. Delimit activities and target group

It's about sharing: The whole ethos of support groups is to help others by the sharing of experiences and the provision of moral support. Provide an environment where patients and relatives can share their experience in confidence, and can receive professional support underpinned by intensive care trained professionals at all times.

Set a delimited list of activities: For instance, do you want to provide support for all patients and relatives during and after the patient’s time in ICU? Experience shows that 'drop in' support is the best and most helpful. But you may consider alternative options if drop in not feasible e.g. telephone, buddy system or online support.

Agree on frequency: 6 weekly meetings of  2 hours is recommended. Also, include weekday evenings so working relatives and patients who have returned to work can participate.

Also, delimit your target group: Will you give access to the group's activities to all hospitals and General Practitioners within the catchment area as well as adjoining areas? will be allowed direct access to the Group’s activities.

5. Find a location

Out of hospital: Experience shows that meeting off site reduces anxiety and helps foster core group partnership, i.e. all are service providers, not just healthcare professionals. However, it might be easier at the beginning to keep costs down and to ensure the group is supported by the professional staff to hold meetings on the hospital site in a suitable venue which is not near to the intensive care unit.

Think access: Good access to public transport, disabled access and parking makes a difference.

6. Publicise the group

It matters: Make an effort to publicise the group and make it known to other organisations such as GP surgeries.

Follow-up service: It is beneficial if the intensive care unit operates a follow up service. This is the most effective way of making patients and their relatives aware of the group’s activities.

Publicity from the hospital: The ICU, HDU, outreach and follow up can tell patients and relatives about the available support.
Create a leaflet: Create leaflets of drop in details to patients and relatives at ICU discharge and follow-up, and in relatives’ room.

7. Run meetings

Professional support: Ensure there is professional support at all meetings.

Agree on your roles: Healthcare professionals provide triage and familiarity for new visitors and pass patients onto the most relevant core group peers

Layout the room: It is recommended to set up informal, individual tables with clusters of chairs rather than a boardroom or theatre.  Don't forget supplies such as tea, coffee and biscuits.

Ensure an organic discussion: Suggested group members begin by talking about themselves and their own experiences to put visitors at their ease and let them identify with the group members through shared experiences.

(In collaboration with ICU Steps)

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