The Dystonia Society

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Group Coordinator Area

The Dystonia Society supports and develops a network of local groups throughout the UK.  Details of these groups can be found here.

This area of the website is intended for our group volunteers working with our network of support groups.  The content is intended to help and support them to run and develop their groups.

If you are an independent group supporting people affected by dystonia (but not a Dystonia Society Support Group) please feel free to browse these pages.  If you would like to reach a wider audience we may be able to include your groups details on our group information pages, please contact us at info@dystonia.org.uk  for further details.  Please include details of your group and who we should contact.

Supporting our group network

The Dystonia Society actively encourages the formation of new groups and supports existing groups throughout the UK.  Only by having an extensive and active network of local groups can the Society hope to provide effective levels of local support for people affected by dystonia and impact on local diagnosis, services and treatments.

The Dystonia Society greatly values the role of volunteers in running our groups locally.  The contribution they make to the work of the organisation is huge.  The Society believes that, as far as possible, groups should be free to operate as they determine to be appropriate. It is recommended that groups stay in close contact with Dystonia Society staff to help them run as effectively as possible.

There are, however, a number of charity rules, other legislative rules and good practice requirements that everyone operating within the Dystonia Society, including volunteers, need to follow. These are laid out in the following pages and documents. In order to use The Dystonia Society name and fundraise using The Dystonia Society charity number, all groups must follow these rules.

In order to encourage and maintain the formation of a group network the Society aims to provide a range of group support services including: support with funding; materials such as posters, leaflets, merchandise etc; practical support with running a group; and support with awareness and fundraising events.

This area of our website provides Group Coordinators and other group volunteers with the information, guidance and support they need to effectively run a Dystonia Society Support Group.  The area is split into sections as follows:

New and Updated: This section links to new and updated information and advice or to pages that change on a regular basis.

The following are pages that change on a regular basis and should be checked for updates regularly:

  • Important dates for groups: this provides all key reporting deadlines for groups and other important dates. Read more… 
  • Living with Dystonia Events: this provides details of upcoming LWD events being run by The Society.  Read more… 
  • Forums and workshops for Group Volunteers: check here for upcoming events specifically for group volunteers.  Read more… 
  • Awareness & Fundraising activities and events:  check here for activities and events for your group to support or take part in.  Read more…

The following are for information and do change from time to time:

  • All Dystonia Society Support Groups: find out about all our groups.  Read more… 
  • Society Staff: who is who on The Society’s staff team and how to make contact.  Read more… 
  • Society Trustees: details of The Society’s Board of Trustees.  Read more… 

Setting up a new group:  The Society is always keen to hear from people interested in setting up a Dystonia Society Support Group in their area.  If you are thinking about setting up a group then you should read our briefing paper on setting up a new group. Read more… 

This briefing paper will shortly be available as a PDF document here.

Group Operating Rules: All Dystonia Society Support Groups adhere to the Operating Rules for Dystonia Society Support Groups.  These are a set of agreed rules and procedures that must be followed by all groups.  Read more…

The Operating Rules for Dystonia Society Support Groups is available as a PDF document here.

We also have guidelines for volunteers who hold group 0845 numbers, this is available as a PDF document here.

Good Practice and Guidance for Groups: This section contains a selection of briefing papers aimed at supporting groups to develop and operate within the Operating Rules for Dystonia Society Support Groups.  The briefings available are:

  • Looking after the group:This briefing covers a wide range of topics and aims to offer guidance on how you might organise and run your group.
    • What groups do - find out about what sort of activities groups undertake and what sort of things need to be considered when organising an event.  Read more…
    • Organising the group - find out about how groups can be organised. Read more…
    • Open & Welcoming - find out how other groups make their meetings open and welcoming to all.  Read more…
    • Confidentiality, Access & Safety - find out more about these important issues for groups including confidentiality; data protection; giving support; vulnerable adults; equality, inclusiveness and access; health & safety; and standards of behaviour.  Read more…

All of these briefing papers will shortly be available to download as PDF document here.

  • Looking after group money: This briefing provides guidance on how groups should look after the group’s money.  We aim to explain why and how all money raised and spent by groups must be fully accounted for by the Society and the actions groups must take to support The Society in achieving this legal requirement. As both a registered charity and company limited by guarantee there is increasingly stringent legislation regulating the way in which we operate, raise and spend money.  The rules governing charity finance are strict and groups need to be aware of them.  In summary:
    • In our statutory accounts we therefore have a duty to present a complete and truthful picture of all the money raised in the name of The Society, the purpose for which it was raised and how it was spent.
    • In addition the Board of Trustees is wholly responsible for all aspects of the charity’s operation.  It is important that they can be confident that everyone connected with the Society is dealing with finances within clear and agreed guidelines.
    • As all Dystonia Society Support Groups operate under the legal umbrella of The Society’s registrations these rules apply to all groups as well.
    • By ensuring there is a clear framework within which groups raise and spend money the trustees aim to facilitate the growth and development of each group whilst protecting volunteers involved in The Society and The Society’s reputation itself.
    • Basic financial principles for all Dystonia Society Support Groups:
    • All groups must operate with the intention of being self financing. Groups may not carry forward at the end of the financial year in excess of £500 in their individual account, unless otherwise agreed. All groups must report annually on their financial situation.
    • More detailed information is available as follows:
      • Raising & Spending Money Locally – All groups are encouraged to raise and spend money locally to provide local group services.  You should also refer to the handling cash briefing alongside this briefing.  Read more…
      • Handling cash – All groups must be aware of The Society’s cash handling procedures.  Read more…
      • Banking – All new groups are required to use UK Office as their Banker.  This means all group money (except petty cash) is held centrally.  Read more…
      • Petty Cash Float – All groups can operate a petty cash float locally.  Find out how to set this up and how to operate the float.  Read more…
      • Annual Financial Return – All groups are required to keep financial records of money received and spent locally and to be accountable on an annual basis.  Read more…
      • Gifts & Donations – All groups and volunteers may, from time to time, receive gifts and donations and should know how to deal with them.  Read more…

All of these briefing papers will shortly be available to download as one PDF document here.

  • Publicising group activities, meetings & events:This briefing covers expectations and opportunities for groups to publicise their activities.   Groups can publicise their group meeting dates in a number of ways. 
    • Dystonia Matters & Online – All groups must ensure their meetings dates and other events are regularly included in the Society’s quarterly publication, Dystonia Matters, and on the groups individual web page on this website.  This briefing tells you how and gives a schedule of dates for you to follow to ensure your dates get into Dystonia Matters.  Read more…  
    • Group Mailings and newsletters – All groups are expected to do a mail out to members in their area at least once a year.  This can take a form that is best suited to the group: a newsletter; letter; invitation; annual schedule of dates etc.  All new groups are expected to use UK Office mailing services and all groups are encouraged to use this service.  Read more…
    • Locally – groups may also like to consider publicising the group and its activities locally.  This could include posters, local media, local library, local clinics etc. Read more…

All of these briefing papers will shortly be available to download as one PDF document here.

  • Group Volunteers:  Under construction

 

  •  Awareness Raising and Fundraising for groups:  Under construction

 

  • Other matters of interest to groups:  Under construction

 

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