Are you the parent of an adult with Prader-Willi Syndrome (PWS)? Are you interested in bringing your lived experience to PWSA UK and helping shape the future of our work?

The Prader-Willi Syndrome Association UK (PWSA UK) is a dedicated charity that provides lifelong support to those affected by Prader-Willi Syndrome, a rare and complex genetic condition. PWS is associated with a constant, overwhelming drive to eat, which can be life-limiting, along with various learning and physical disabilities. We offer a range of services, including a dedicated helpline, a comprehensive online information hub, regional peer support networks, community events, professional training, and support for essential research. Our mission is to empower our community to overcome challenges and live life to the fullest with PWS.

As part of our continued commitment, we aim to enhance our support for adults with PWS, focusing on improving their quality of life. We are expanding our understanding of the adult PWS experience and are committed to incorporating the perspectives of parents of adults with PWS on our board of trustees. We currently run the ‘OWL’ (Our Way of Life) focus group, consisting of adults with PWS, which reports directly to our board to ensure their voices are heard.

About the Role: PWSA UK is seeking a new board trustee with personal experience as a parent of an adult with PWS. As a trustee, you would attend four board meetings per year and play an integral role in setting our strategic direction.

In this position, you will collaborate closely with our OWL group, ensuring that the voices and needs of adults with PWS inform our strategic development and delivery of support services.

We strive for our board to reflect the diverse makeup of the PWS community in the UK, allowing us to effectively meet a broad range of needs. We are particularly interested in applications from underrepresented communities within the PWS population.

If this opportunity to make a difference resonates with you, please contact our CEO, Jackie Lodge, for further information.

We are seeking Outreach Volunteers to provide support and information to parents and carers at PWS clinics.

PWS clinics within hospitals and health trusts are run by the Lead Consultant and PWSA UK are invited to attend to provide support and guidance to parents and carers for non-medical issues.

These could be anything from concerns about their child’s education, to just needing a supportive ear from someone who understands the challenges of PWS.

Outreach Volunteers based within clinics will be lone volunteers once their initial induction is completed and, as such, will need to be confident in working with a degree of autonomy whilst representing PWSA UK, adhering to organisational guidance and policy.

Commitment:

Attendance at your allocated PWS Clinic as agreed with your named PWSA UK PWS Specialist Advisor.  This may vary depending on the length and frequency of the clinic and will be agreed in advance. Clinics are held monthly or Quarterly for a maximum of up to 5 hours.

Main Duties:

Under the guidance of, and in agreement with, your named PWSA UK PWS Specialist Advisor;

• Attendance at designated PWS Clinic; to be guided by PWSA UK, in partnership with the consultant in charge of the clinic.

• Liaison with health professionals and other agencies supporting at PWS clinics.

• To provide support and information to parents/carers attending the clinic about non-medical issues relating to PWS.

• Signpost parents/carers to PWSA UK for more detailed information and support.

• Raise awareness of, and encourage membership of PWSA UK as part of your role as the Outreach Volunteer.

• Where appropriate, and with agreement from PWSA UK; provide and make available leaflets and booklets relating to PWS and relevant local information. 

• With the consent of the parent/carer; maintain and keep an accurate record of Parents/Carers spoken to and any follow up actions required by PWSA UK. 

• To report back to PWSA UK (using the Volunteer Support Log form) information relating to date and place of clinic; how many families you interacted with and approximate ages of children; any other relevant information.

• To dispose of any papers containing personal information in confidential waste.

• To maintain personal boundaries and adhere to organisational policy and guidance regarding safeguarding and confidentiality.

Reports to:

You will have a named PWSA UK PWS Specialist Advisor who will work in partnership with you, providing help and advice as appropriate.

Our expectations of Clinic Support Volunteers:

• Before attendance at a PWS Clinic all volunteers must have completed the recruitment process and induction and have PWSA UK’s approval.

• Adherence to PWSA UK guidance, policies and procedures including Confidentiality, Safeguarding and Expenses.

• Regular and open communication with your named PWSA UK PWS Specialist Advisor. 

• Notification, as soon as is practicable, if you are unable to keep your commitment.

• Participation in ongoing training and supervision as required for the role.

What you can expect from us:

• A comprehensive induction and training programme. 

• Regular communication with, and support from your allocated PWS Specialist Advisor.

• Clear parameters and expectations for the role. 

• Individual and group supervision to support you in your role.

• Expenses covering your travel and refreshments whilst volunteering in accordance with PWSA UK policy and guidance.

• A friendly and supportive team who all share the goal of improving life for people with PWS.

If you would like to support the PWS Clinics, please email Wendy at wthomas@pwsa.co.uk