Setting up a support group: Part Three - The five step plan

Having run a support group since 2005, we’ve learned a lot about how to make it work. We’ve also learned that we were incredibly lucky that our group happened to form the way it did and that everything worked out. When we began, we couldn’t find any other support groups that could advise or guide us so we had to figure things out as we went. Having got this far however, publishing an article in a nursing journal on setting up patient and relative support groups, we’ve had healthcare professionals from across the UK and Europe come to meet with us and talk about what they would need to do to get a group going.

Although the details differ depending on what services and support are available, there are common issues which crop up in these meetings time and again and from these discussions we drew up the support group five step plan.

Step 1 - Establish a core group

Support groups work best when they are a blend of healthcare professionals who understand critical illness and the legacy it can leave and former patients and relatives who know first-hand the issues that others will face and having been through it themselves.

To start a group, the first step is to get a meeting together of healthcare professionals and former patients and their relatives with the aim of establishing a core group that will be able to help more recent patients and relatives.

It’s important not to rush into running a support group meeting until you’ve established your core group. Ideally this will be centred around patients who have been out of ICU for between 6 and 24 months. Long enough to have found a way of coping with their experiences but still recent enough to have the desire to do something to help others and make a difference. The initial meetings of the core group give the patients, relatives and healthcare professionals an opportunity to bond and become a team so that when you do open your doors to a support group meeting, the core group are the support providers, not just the healthcare professionals.

These initial meetings also act as support group sessions for the patient and relative members of the core group. It’s unlikely patients will have had a chance to meet other ex-patients and talking about their experiences may be a new experience for them. Being able to do this in the initial core group meetings allows them to get used to talking about the issues they’ve faced and also experience for themselves the benefits this can bring that they will be able to pass on to more recent patients.

We would recommend having 3 or 4 core group meetings before you launch the support group. Though you’ll know the benefits a support group can bring by the end of the first meeting, holding two or three more will allow you to really bond as a group and address some of the other steps.

Step 2 - Define the group structure

Partnership between healthcare professionals and ex-patients and relatives is key to the support group. In time, it may even be possible for the group to be patient-led but from the outset it needs to be a partnership rather than a hospital service that the patients and relatives are just helping out with. For this reason and also to minimise bureaucracy, it’s important for the group to be independent from the hospital. Patients and relatives can take on many of the tasks involved, taking the strain off the healthcare professionals and allowing them to concentrate on the areas where their skills are of most benefit.

Support groups would form as unincorporated associations. gov.uk/business-legal-struc...

Although the group would have charitable aims, you wouldn’t have to register as a charity. Only organisations with an annual income of over £5000 a year can become registered charities. This isn’t a problem in setting your group up; it actually makes things much more straightforward and there are many successful voluntary groups that never need to register as charities.

To organise your group however you should adopt a constitution that governs how your group will run. ICUsteps is able to provide a model constitution for support groups so please get in touch with us if you’d like a copy.

Before long you’ll want to set up a bank account. Most banks will have a special type of account for voluntary groups and charities though they may want to see a copy of your constitution to open one up.

I’d also recommend contacting your local council for voluntary organisations. These are local charities that provide help and advice for other voluntary groups and charities. They will be able to offer organisational guidance and help applying for funding. You can find many of these groups on the NAVCA website navca.org.uk/directory or do a Google search for CVOs in your area.

Step 3 - Agree a support method

Holding drop in meetings is the gold standard for support groups where more recent patients and relatives can come along and meet with the core group. They can get information and insight from the healthcare professionals and reassurance and understanding from the other patients and relatives, all in an informal environment over a cup of tea. Drop in meetings are a common means of patient support across many illness groups and they work for critical illness too.

As a group, you need to discuss and agree how you’re going to provide support. If for some reason drop in meetings aren’t feasible for your group, you can still consider other possible methods of support such as telephone support, a buddy system or providing support online but if at all possible, we would recommend drop ins.

Step 4 - Fundraising

Funding is always one of the first concerns raised by those looking to start a support group but in reality, it doesn’t need to be that much of a worry.

As mentioned in step 2, your local council for voluntary organisations may be able to help you apply for a grant but even if they can’t you can consider arranging or participating in a sponsored event to raise funds for your group.

The main item you’ll need to fund is a venue for your drop in events along with supplies for tea, coffee and biscuits so you may well find that you need less than £500 a year to run your group. Even a single sponsorship event could be enough to cover this. It would also provide the opportunity to publicise your group and bring a real feeling of teamwork and achievement.

Step 5 - Organising drop in meetings

When it comes to arranging and running your drop in events, there are a number of issues to consider. The final step of the five step plan is the most involved and will form the final installment of this series on setting up a support group - Part 5 - Arranging and running a drop in.

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  • I would willingly pay for the first few years funding out of my own pocket to help set up a group over this side of Scotland, but I might as well be talking to myself because I cannot find anyone else. I mean how do you find someone else interested in the wilds of Aberdeenshire unless they come onto this community? One or two of the ICU staff in Aberdeen seem interested in helping ex patients, but they cannot get funding and anyway they want it in house.

  • Hi Mike

    Don't give up trying, we set our group up here in Hastings just over a year ago, it was hard work getting it off the ground but with support from my wife and two ICU nurses (one being my niece) we had our first meeting in February 2012 in a local pub, since then we have never looked back gaining support from staff of the follow up clinic, the hospital trust and we have even been invited to do a presentation at a hospital board meeting next week.

    We have just received funding from a community trust and a local school, it's just a case of finding the right mix of people to get started, my wife and myself felt we wanted to give something back and help other through what can be a very traumatic time, the rewards are great when you can put a smile back on someone's face by letting them know they are not alone.

    I wish you luck in trying to set up a group and if we can help in anyway please let us know we have a local support group page on icusteps.org where you can contact us and I'm sure having met Peter, he can point you in the right direction.

    Best wishes for the future

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