Group Coordinators


This briefing paper aims to explain what Groups need to understand about raising money and spending money locally.

It is important that groups understand the legal issues around raising money for charities and the specific rules about spending money.

You may not feel that this applies to your group as you do not intend to fundraise.  However, we do ask that all groups operate with the intention of being self financing which includes paying for room hire and refreshments.  Most groups find that they raise funds from within the group in order to pay for these day to day expenses.  So it is important that you are aware of and understand some of the basic issues about raising and spending money.  It is also important to understand how to handle cash so please make sure you read about handling cash (read more…).

Raising money locally

It is quite okay for you to raise money within your group to cover the costs of running the group but you must make sure that you follow the rules about cash handling (read more…).

Groups are also free to raise money outside the group with the following exceptions:

  • You should not approach any charitable trusts or large companies without first discussing the matter with the Fundraising Team.  We would look very unprofessional and uncoordinated if we end up making two separate approaches to the same place.
  • If you want to undertake a public fundraising event (other than within your group) check out the fund raising pages on the website (read more…) and please seek advice early from the Fundraising Team at UK Office.  They will be very happy to talk through any issues with you and may be able to provide you with materials, contacts or some other support.
  • If you do want to raise money for a specific project, you must discuss and agree this with staff initially.  Initial contact to discuss ideas should be made with Group Support & Development or the Fundraising Team by email at or on 0845 458 6211.  

Spending money locally

All money spent by groups must be within the charitable objects as stated in the Memorandum and Articles of Association of The Dystonia Society.  This is because Groups operate under the legal umbrella of The Dystonia Society’s legal status as a registered charity and company limited by guarantee.

The Memorandum and Articles of Association says “the Company is established 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 the said conditions”.

Below we provide the Trustees interpretation of this which is binding guidance for all groups of The Society.

General principles:

  • The single item limit is £250 and the limit per event is £250 (unless agreed in advance with the CEO).
  • Large invoices can be sent to UK Office with a cheque/BACS requisition (a form can be found here).  Please confirm with UK Office first as no payment will be made if the group account has insufficient funds without agreement having been sought.
  • Personal expenses can be claimed using Society expense claims forms (a form can be found here) with receipts attached.

Funds must only be used for running the group and may be spent on administrative costs, facilitating social contact through events and transport costs:  

  • Covering the administrative costs of running a group – These costs can include: venue hire; postage and packing; newsletters; refreshments and so on.  Any item costing over £250 must be discussed prior to purchase with the Chief Executive.  There may be more cost effective ways of purchasing these items.
  • Facilitating social contact – This is a principle objective for groups, therefore social events can be subsidised provided these events are open to all people with dystonia in the area (unless agreed otherwise) and they are appropriately advertised.  Wherever feasible larger events should be self financing.  Group funds may cover a proportion of the costs of an event but please note a £250 limit per event applies, unless agreed otherwise.
  • Transport costs (in certain circumstances) – In some cases people severely affected by dystonia would benefit significantly from attending a group meeting but are prevented by the cost or non-availability of transport.  In these cases group finances may be used to help offset transport costs.  This option should only be used as a last resort after all other avenues have been explored including public transport, volunteer car schemes, dial a ride, special fare schemes for those with disabilities or car sharing where possible between members attending the event: please consider personal safety and health & safety.

Please remember the single item limit of £250 and the £250 limit per event.  

Local funds must not be used for:  

  • The purchase of equipment for people affected by dystonia – The Society runs a “welfare grant scheme” through which grants can be made.  Finding funds centrally for this purpose frees your group to use its money in other ways.
  • The cost of alcohol – This must not be covered by group funds.
  • Producing branded materials – This is because these items can be purchased most cost effectively from a central source - such as UK Office.  In addition, there can be significant negative financial implications (around VAT) for charities spending money on merchandise.  Any group who still feel there is a need to produce local merchandise or leaflets must discuss it with the Chief Executive, before taking matters forward.