Confidentiality, access and safety


This briefing paper provides guidance on a range of topics covering confidentiality, access & safety.  It is really important that you are aware of these areas and how to deal with them so please take time to read this briefing paper.


It is important that groups understand and observe the need to respect confidentiality.  In view of this The Society has a confidentiality policy.  Please contact UK Office if you would like to see a copy of this document.

In summary any information provided on an 0845 number or to a group must be treated as confidential and not shared with anyone other than employees of The Dystonia Society. Group volunteers should take care not to be overheard when taking 0845 calls.  Volunteers can, however, contact Helpline staff or Group Support and Development about any calls they receive.  This is particularly so if the volunteer feels uncomfortable about what they have been told or are distressed in any way.  Guidelines for volunteers who hold group 0845 numbers can be downloaded as a PDF document here.

The only exception to this policy of maintaining confidentiality is when the information indicates a threat of significant harm to self or others (eg through potential suicide, self-harm or violence) or a potential criminal act. In this case the police should be informed on ‘999’ immediately and the Helpline (0845 458 6322) at the first opportunity. If there is any doubt at all, the police must be called.

Data protection

Strict laws govern the holding of information about other people. It is recommended that, as far as possible, personal information is not held by groups and that mailings are organised through UK Office. If personal information is held, the following rules apply:

  • The information is held only by those who need to know for the effective operation of the group and must not be shared generally with members of the group.
  • The information must be kept up to date and accurate.
  • The information is used only for the operation of the group and must never be shared with third parties.
  • The information must be password protected (this includes USB sticks) and kept in a locked place.
  • The information must be destroyed immediately if it is not needed (for instance if someone leaves).
  • Due care must be taken in transporting hard copy information (for instance lists must not be left lying about).

If groups do hold personal information about group members they must advise UK Office in respect of what data is held, who holds it and how it is stored.  If Groups would like to discuss holding data they should contact UK Office by email at or phone 0845 458 6211.

Giving Support

Giving support is one of the most important roles local groups can play. However, all group volunteers need to be aware that they are not medically qualified and that their personal experiences may not be representative of others with dystonia. They therefore need to be careful to adhere to the following guidelines:

  • It is fine to listen empathetically to someone else’s experience and describe your experience.
  • But you must not make diagnoses, provide information or advice on dystonia, give advice about treatment or recommend treatment centres.
  • Remember that criticism of named individuals or organisations could be defamation and have legal implications.
  • If in doubt you can refer people to The Dystonia Society Helpline (0845 458 6322) or website (
  • If group volunteers become distressed or upset as a result of providing support they can contact the Helpline for support or contact group support staff in England or Scotland.

If groups are concerned about how to ensure this guidance is followed please talk to Group Support and Development by email at or by phone on 0845 458 6211.

Vulnerable Adults

People with dystonia in receipt of local authority support are designated ‘vulnerable adults’. If anyone involved in The Society becomes aware of abuse of such people we have a legal obligation to inform the local authority within 24 hours. Abuse in this context can include physical abuse, financial abuse such as theft or coercive borrowing, psychological abuse such as bullying. If group volunteers become aware of such abuse they should report it to the Group Coordinator who should report it as soon as possible. Within working hours this can be done via the Helpline on 0845 458 6322 but outside of working hours and at weekends the Group Coordinator should refer the case to the out of hours social services department at the local council.

Equality, inclusiveness and access

The Dystonia Society is committed to equality of opportunity for all – including staff, volunteers, members and service users.  The Society is committed to challenging discrimination in whatever form it takes.  Groups should therefore be open to all affected by dystonia irrespective of gender, age (above 18 yrs), ethnicity, sexuality and disability. All new members should be properly welcomed. 

If Groups have any concerns they should contact Group Support & Development by email at or by phone on 0845 458 6211.

Health and Safety

It is very important to the Society that health and safety is ensured, as far as possible, for those attending events and activities organised by groups on behalf of The Society.  We therefore encourage groups to consider health and safety as a part of organising events and activities.  A health and safety checklist can be found here.  All groups must bear in mind no background checks are made on attendees or presenters for groups. Therefore, the group needs to be careful to keep the event safe by applying the following rules:

  • All events should be held in a suitable and accessible public place and never in a group member’s home (if any group wishes to make an exception for an individual event such as a barbecue they should agree in advance with the CEO of the Dystonia Society and ensure they have appropriate insurance).
  • No person under 18 should attend group meetings unless accompanied by a responsible adult.
  • Never make home visits and only meet in public places.
  • Ensure that no remedies or medication are offered, available to take or handled at group meetings.   Ensure that any person presenting therapeutic information who is not either a qualified medical professional (such as a doctor, physiotherapist or nurse) or an employee of The Society shows proof of public liability insurance prior to the meeting. This includes counsellors, homeopaths and other complementary therapists.
  • If a therapist is presenting the following disclaimer should be communicated to all attendees: “We are very pleased to welcome XXX to the meeting. However, The Dystonia Society has not evaluated this therapy and cannot take responsibility for any outcome. Members participating in complementary therapy sessions do so at their own risk”.

Standards of behaviour

All groups are entitled to expect a reasonable standard of behaviour from all attendees including but not limited to being willing to listen and not dominate the conversation to a level where other people feel excluded, not being prescriptive or diagnostic about people’s conditions, not interrupting, not being aggressive, not drinking excessively or being under the influence of illegal drugs. In addition all group members need to be aware that they are not medically qualified and that their personal experiences may not be representative of others with dystonia.  A group is entitled to exclude any person who fails to adhere to standards after due warning. The group coordinator should discuss any exclusion with the CEO of The Dystonia Society before acting. It is recommended that each group agrees a short list of standards of behaviour that can be referred to in the case of any issue. 

A list of standards is available here that groups can either adopt or amend.