Support Groups – Why we do it

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Claire and Lizzie here, group leaders of the Leeds and West Yorkshire PCOS Verity Support
group. We are sharing our experiences of running a support group, the highs and lows, the
trials and successes we have found since our relaunch. Claire tends to focus on setting up
the face to face meet-ups and Lizzie tends to sort out things such as welcoming new
members and looking after the posts on-line.

The support groups that are a part of Verity’s network have undergone a massive revamp
with thanks to Kate one of the trustees over the past few months. Our social events were
reignited after Claire visited the PCOS Verity conference last year and of course wanted to
offer more in terms of supporting other ladies going through similar issues in the Leeds and
west Yorkshire region. Lizzie’s first experience with the support groups was back in 2007
when at 17 she was first diagnosed with PCOS. She has had the ability to attend support
groups in London, Manchester and of course Leeds over the years and wanted to be able to
give back to the PCOS community.

Our face to face meet-ups usually include a coffee and a chat. We try to, where possible
ensure that our meetings take place all across Leeds and West Yorkshire. One of the most
important things we feel is to ensure we choose places that are free to enter. Most of the
time we meet in coffee shops, but we have also had meetings in parks and other attractions
in the local area, again making sure they are free. When we are arranging these meet-ups
we have a poll on dates that we find easiest to attend and then set a meeting up for the
most popular date. For the past year we have had monthly meetings but have found that
turn ups can be quite low. This year we are going to move to having one face to face
meeting every two months. We appreciate that especially at certain times of the year it is
more difficult to be able to come along to a face to face meeting. That doesn’t however
mean for the rest of the time our group members are unsupported.

Our group’s Facebook page has always been relatively active, with 157 members we are one
of the largest support groups and we find that if someone asks for advice there is usually
somebody within our community who can offer support. We have recently started to trial
using virtual meet ups. Our Facebook group has a chat function and we plan that the
month’s where there isn’t a face to face meeting, we have a virtual one. Our first virtual
meet up was extremely successful and had up to 22 active members at any one time. These
virtual meet-ups allow our members who either can’t or don’t want to attend the face to
face meetings engage with the group and receive the support they are entitled to.
Some tips of best practice we’ve found useful when running a support group:

  1. Set up an event where all/most of the group leaders are able to attend. A lot of
    people can find it very daunting walking in to a place and meeting new people, so
    having a friendly face from online there is always helpful.
  2. Use the Facebook events option and invite all members of the group to join you.
  3. When choosing a venue, we have found that coffee shops and retail parks at the
    weekend tend to facilitate the highest attendance. Somewhere with parking and
    good transport links is a must to allow your members chance to get there.
  4. In the week leading up to the face to face meetings, we’ve found posting gentle
    reminders to the group works best as it allows people to either make a decision as to
    whether they want to attend and reminds them it is coming up soon. Also post
    something afterwards whether it is just something as simple as brilliant meeting
    today or maybe a follow up link to something that was discussed during the event.
  5. Try not to leave too long between meet-ups or at least have the next one arranged.
    We find face to face tends to work better on a weekend, but we try to keep the
    virtual ones to a mid-week evening time slot and will arrange the next one within a
    day or so after to keep things fresh in people’s minds.

We’ve also managed to get a couple of quotes from our members that help to inspire us to
do what we do!

“Our PCOS meet ups have been invaluable to me. I’ve made friends in a city where to start
with I felt very alone and not only that I’ve made friends who listen and support me and
100% know what I’m going through because there is normally someone else going through
it too. I would be lost without these ladies and our support network.” (Annika, member of
the Leeds and West Yorkshire Local Group)

“I find the support group is great for meeting other women with PCOS and chatting through
various issues relating to the condition – for me, things like long term health implications of
PCOS and how being more active helps with management of my PCOS." (Sharon, member of
the Leeds and West Yorkshire Local Group)

So that is our experience of running a PCOS verity support group. By no means is it perfect
and it might not work for everyone, but it is what we have found to be successful so far!

If you would like to find a local group near you or find out about how to set up your own local group, then visit the Local Groups page on the Verity webiste.