written by Linda Shepherd, President of the Poitou Charentes Support Group www.cancersupportfrance.info

Setting up a Support group

 
I think there are basically 6 key steps to take. At least this is how we have approached the project, and it seems to work. 
  • Establish if there is a need
At this stage in your thinking I suggest you establish whether there is a need in your area. Pose the question!  If it is clearly a need, then take it a step at a time. The best way to do that is to ask the question amongst the English societies around you - such as a keep fit group, or a 'Get - Together' social group, or your local Anglican Chaplaincy congregation if there is one near you.
  • Establishing a skills base

Contact those who have indicated interest, and ask them for a brief description about themselves, their cancer experiences, the skills they have to offer and what sort of boundaries they want to make. This will give you an initial idea of what kind of team you may be able to build.

Once you have established a group of interested people around you it is helpful to have someone in from outside to help you focus on your thinking. I asked Cancerlink (now part of the Macmillan organisation) for advice here. They agreed to send me someone for two days for free training, but we had to pay for transport and accommodation. In order to achieve this, we charged a fee for the two days. This not only covered the costs, but then gave us an initial working budget. These two days were incredibly valuable, as they enabled people to get to know each other, and share their cancer experiences. It flagged up those who wanted support themselves and those who felt ready to offer support. (It was at this point that I discovered I could talk about my own experiences without dissolving into tears! ) 
  • Establish your own specific aims and objective and good practice guide.
We were left the Cancerlink 'Good Practice Guide' which further clarified my own thinking and helped me to put together a provisional set of aims and objectives and our own good practise guidelines. A meeting with the group members discussed and agreed these.
This would include what form your support will take. Where you will meet, how often you will meet and so on. Again think about who feels able to do what. Not everyone will be ready to be an 'active listener'. But you may find people able to offer translation services, or practical tasks like shopping etc. Establish clear boundaries for each person. These should be reviewable at any time. For example, one of my team members had a bad experience with Chemotherapy, and does not want to be face to face with the same situation just yet. It is her 'trigger' point. Set up an agreed, confidential contacts register. Ours is held by three people, myself as the president,  the secretary and the training officer. Decide on a training programme. 
  • Establish the active support of your medical practitioners and oncology departments.
I had done a lot of discussion work with the medical professionals looking after me. I wanted to be sure that they felt it was a good thing to do, and would support the work. This is vital, as I believe it is at the point of diagnosis and then later during treatment when mother-tongue support is most needed. If doctors do not know such a group of people exist, they can not put the support in place! Ultimately, foot slogging publicity by your members is vital here. The head of Radiotherapy at CHU Poitiers, who was in charge of my treatment, set aside time to discuss the project with me. Because it was well organised, and trained people were included, he was happy to support me. 
  • Register as an Association according to the Law of 1901
As the group developed, we realised that proper recognition under French Law was needed. So we took steps to set up an 'Association' according to the law of 1901. This means we can have a bank account in the name of the organisation, thus separating funds from personal accounts. For this you need to have a President, Secretary and Treasurer. 
  • Make sure you are insured.
This year I took out third party liability insurance for the group to ensure that we were legally covered should there be an accident during meetings. Your local insurance agent will help you here. Third party liability is the usual. Depending on the activities of the group it is also possible to take out cover for each individual on top of the basic. My agent assured me that when using ones own transport to take people to hospital or shopping or to appointments, they should be covered under their own policy.  

You can ring me on 05 45 29 08 93 and make 'human contact' if it would help.

 
I hope this is helpful, feel free to contact me whenever you like - if I can't talk immediately, I'll say so and arrange a time to do so. We also have an answerphone, so you can leave a message.
 
With every good wish,
Linda

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