What groups do


This briefing paper provides guidance on what a local group should be doing.   Even if you have been running a group for some time please refer to this briefing paper for a gentle reminder of what it means to be a Dystonia Society Group.

Activities, events and meetings

Groups of The Dystonia Society come in all shapes and sizes – they can be large or small - they can meet frequently or as little as twice a year – they can choose to handle money or not.  Our aim is flexibility so that the diverse needs of members can be met.

However, all groups must meet twice a year as a minimum and all group activity must be directed towards the objects of the charity which are:

…to promote the welfare of those persons suffering from the movement disorder known as DYSTONIA or from similar or related conditions; and to advance the education of the public about all aspects of these conditions. 

All organisations have guidelines to help them run more easily and The Society is no exception: all groups must follow the Operating Rules for The Dystonia Society Support Group Network (please see here for a copy) and the following pages offer some guidance to help your group run to the best of its ability, within these rules. 

Please remember, apart from the above rules for groups which must be implemented, what works for some may not work for others.  The following are some pointers about what groups might do.  Remember - do what works best for your group.

What are activities, events & meetings?

The term “meeting” can be used to describe a whole range of events and activities:

  • Social events such as coffee mornings, meals out, quizzes, theatre trips etc;
  • More formal meetings such as speaker events, planning meetings etc;
  • Larger events including events with more than one speaker, taster sessions etc;
  • Fundraising and/or awareness raising activities including sponsored events, quiz nights, bring and buy (cake) sales, raffles, auctions, information in libraries and clinics.

Each group must decide for themselves what meetings, activities and events they want to undertake.  This may depend on the time available from volunteers to organise, group numbers, group interest and so on.  Whatever works best for your group is okay.  The only rules are that all meetings must be open to all affected by dystonia, members and staff of The Society, only members of The Society can vote at a meeting and you must ensure they are run within The Society’s guidelines.

Organising activities, events & meetings

When organising group meetings there are a range of practical matters that need to be considered and thought about.  These include:

What is the purpose of the meeting? 

Is it purely a social event, do you want to inform members by inviting a speaker, do you want to organise a fundraising event or awareness campaign?  What you plan to do will have an impact on the venue, the length of the meeting and how you go about planning the meeting.  Some useful pointers from well-established groups are:

  • It can help to vary what your purpose is or what you do – by doing this you may find you appeal to a wider audience.
  • What groups do is likely to vary from group to group, for different age groups & participants – you don’t have to do what other groups do.  Listen to group members and find out what they want.  Where you are or where you meet may affect what you can do, or the time that volunteers have to give will affect what you can achieve – be realistic.
  • “Information not isolation” – “Sharing and support” – “Understanding and empathy”.  These are all words and ideas from groups who say make time for “contact” and experience sharing.  Feedback shows that it is really important to give people time and space to talk to each other.
  • What are the expectations of group members?  Ask group members what they would like from their group – ask them to get involved with planning and organising. 
  • Getting out and getting to know people.  Friendship, social and fun.  In addition to being able to talk and share experiences and ideas joining a group is also about having fun and making friends so allow time for this.
  • Hold the meeting in 2 parts (eg speaker followed by coffee and chat) so if people can’t come for the whole time they could come to one half.

What to do at meetings?

Group co-ordinators and volunteers often ask for ideas about What to do at group meetings? So we've collected some of the ideas that groups and volunteers have given us over the years.

Dystonia Society Support Groups organise a wide range of events and activities for group meetings: some are member-led actvities, some involve invited speakers and a number of groups organise one off special events or regular outings.

Meetings, activities and events do not need to be complicated – if time or volunteer resources are limited it is best to keep it simple. You could book a local venue or arrange to meet in a local café or coffee shop and just meet for a chat and coffee.

If group members want more encourage them to get involved and help organise something different. If you have more time or volunteers to organise things then consider doing something else. This might include involving an outside speaker (medical, complimentary therapists, other specialist speakers such as local history) or be resourced from within the group (a quiz, raffle, creative art session) – find out what skills group members have and could use to develop an activity for the group.

If you want to invite an outside speaker to your group meeting then make sure you consider the following important things:

Qualifications: Is the invited speaker appropriately qualified (eg does a complementary therapist have both experience and a qualification and are they a member of a recognised professional association), do they have appropriate insurance (eg public liability insurance), can someone in the group recommend them or can the speaker provide a reference/someone you can speak to for whom they have previously spoken at a meeting for.

Payment & Expenses: It is OK to pay for a speaker to attend and can in fact ensure you have a more ‘professional’ relationship with them. It is perfectly reasonable to cover their travel expenses and this kind of out of pocket expense should always be offered. It is also perfectly acceptable to offer a payment for their time, especially if they are potentially forgoing work by attending your meeting (this is likely to be the case for most professional/therapists). As a general rule making a payment (if the group has the resources) of between £50 & £100 is reasonable (if you are paying at the top end this should probably include all other costs such as travel expenses). An alternative is to give the speaker (often more appropriate for NHS staff, volunteers etc) a small thank you gift, flowers, chocolates a gift voucher of up to £30 for example.

Some ideas from other groups can be found here.

Detailed list of speaker and event ideas can be found here.


Just remember to be realistic about the time, energy and resources you and other volunteers have to give – it is better to build on success rather than wear yourself out or fail if you over stretch yourself.

Where to meet

You may have a venue in mind and this may dictate both your purpose and activity to some degree, again this is fine.  If there is something the group would like to do that you can’t do at your regular venue then maybe you could find an alternative venue for that particular activity.   Ask other group members for venue ideas, especially for special events.  

The venues you choose for meetings should be convenient to as many members in the area as possible.  You must use a public venue rather than a person’s home, unless otherwise agreed with UK Office.  If you think you need to use a private residence as a venue please contact Group Support & Development by email at info@dystonia.org.uk or on 0845 458 6211 to discuss.  A public venue adds anonymity for people, usually offers better access, attention to health and safety and so on.

When arranging the venue for your meeting you need to consider a number of general issues and any specific access needs that your group has.  You will need to think about the cost, ease of access, car parking, public transport, suitability for the activity planned and access to refreshments.  You will need to allow extra time to set up for your meeting and to clear away afterwards.  Beforehand, make sure you know the emergency procedures for the venue and procedures for accessing the venue and leaving at the end.  It may be useful to keep a note of any specific access needs that your group has. You will also need to consider health and safety issues when arranging your meeting or activity.

More information about venues can be found here.

A health & safety and access checklist can be found here.

When are you going to meet?

Again it is quite possible that the date you want to meet will be the most important thing and may impact on the choice of venue and activity – generally you need to consider all of the issues discussed here together and need to retain a degree of flexibility when planning your event.

You will want to make the meeting open to as many people as possible so you need to consider whether it should be in the evening or during the day, a weekday or a weekend.  In the first instance it may be useful to canvass people who might attend the meeting to find out what is best or to rotate the day/time in order to find the best time.  The minimum requirement is that a group meets twice a year – there is no upper limit (just be realistic!) – some groups meet as often as once a month. Some advice from experienced groups is:

  • If there is no “best time” to hold a meeting maybe the time/day could be varied - people can get mixed up though if it changes a lot.
  • Hold a regular meeting in a regular venue then do other things at other times.
  • Pre-arrange dates for the year and let people know them - check they don’t clash with major local/national events - or set a pattern of dates.

How to let people know about meetings?

Letting people affected by dystonia in your area know about the meeting is essential.

  • We ask that all groups notify UK Office (info@dystonia.org.uk or 0845 458 6211) about the details of group meetings on a regular basis and we will then make sure they are included in Dystonia Matters and on the Society website (Read more…). 
  • We ask that all groups do at least one mailing per year to members in their area: UK Office provides support with this (Read more…).

What should you include in your mailing? Let people know where and when the meeting is and what to expect when they get there (you could include an agenda or programme or brief description of what will happen). It is useful to include directions or a map for venues.  A return slip is a good idea for catering numbers and as a reminder for all members.  Some groups write letters, produce an invite or flyer and some do a newsletter.  Click on the green words to find examples.

In addition you may want to ask if you can put up a poster about your group/meeting in your local neurology or botulinum toxin clinic.  You could approach your local radio or newspaper to have details included in their community activity section.

At the meeting

Just before the start of each meeting put up posters (a blank poster template can be found here) at the venue (if they will let you) to say the meeting is here.  You could even have a rota of volunteers to welcome members as they arrive (keeping a special lookout for any new members).

Remember to tell people about refreshments, where the toilets and fire exits are located and so on.  It is useful to remind people that new ideas for group meetings are welcome as is help with organising.  Have a suggestion box or book for ideas or do an annual questionnaire trying to find out what people think – an example can be found here. It is useful to get everyone to briefly introduce themselves at the beginning of meetings both for the benefit of any new members and to refresh the memories of others!

A checklist for jobs you might need to do for a meeting can be found here.