Youth Advisory Board terms and conditions

The PANS PANDAS UK Youth Advisory Board is a committee of children and young people whose lives are affected by PANS or PANDAS.

The board offers young people aged 8-25 the opportunity to be directly involved in decision-making at our charity. It is a friendly and informal forum where young voices can be heard.

Our Aims

• To provide a voice for young people within PANS PANDAS UK
• To facilitate collaboration between young people and professional experts
• To find new ways for the chairty to better understand and support the needs of young people
• To connect young people affected by PANS and PANDAS with each other

About the Role

As members of the board, young people will work together to help ensure that what we do and say as a charity represents and supports people affected by PANS and PANDAS. All we ask is that they come along to some of our meetings (or correspond with us if that is easier) and be willing to share brilliant ideas with us. Of course, we understand that board members may not always be able to attend these meetings due to periods of illness. We only ask that people attend when they are well enough.

Virtual meetings will take place every eight weeks, during which board members can meet to share their thoughts and ideas. We know not everyone likes to speak in public, so there will always be the option to contribute your ideas in writing or individually. Board members can also opt to contribute using the chat function on Teams if they prefer. We want everyone to feel at ease and able to share their thoughts.

Please note: Parents and carers are always welcome to attend in a supportive capacity. The meetings are designed to allow young people to take centre stage, so we ask that any accompanying adults remain in the background and do not contribute directly.

Eligibility

• Anyone aged 8-25 who is affected by PANS or PANDAS.
• Anyone who has a sibling or close relative with PANS or PANDAS
• Anyone who believes they have PANS or PANDAS.
  Confirmed diagnosis of PANS or PANDAS is not a requirement to take part.

Our policies

The safety and wellbeing of our Youth Advisory Board members is of the utmost importance to us. All parents and carers are welcome to join the meetings and all charity staff members involved in the board have been DBS checked. Permission forms (for those under 18) will be sent out to parents or carers, and completion is required before the young person can participate.

We will never share the personal information of any board members outside the charity without their/their parent or carer’s written consent.

Code of conduct

The Youth Board will only work if members feel able to share their ideas and perspectives when we are working together. Members must agree to respond positively and constructively to input from others. Therefore, we have created a code of conduct to ensure that all our board meetings and written interactions are safe and inclusive for young people.

• Be considerate, collaborative and respectful when speaking, listening or corresponding.
• Be patient and kind when others are speaking.
• Language and behaviour must be appropriate.
• Respect each other’s right to privacy. For example, do not take screenshots of meetings, share written material outside the board, or share people’s names without their permission.
• Help create an environment which allows everyone to be safe, confident and comfortable.
• Report any behaviour which makes you feel uncomfortable or unsafe.

If you have any questions about the Youth Advisory Board, please get in touch via e mail at info@panspandasuk.org

Thank you