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