Vacancies

If you are passionate about making a difference for PWS families in Scotland we want to hear from you!

PWSA UK is a small charity providing lifelong support to all those affected by Prader-Willi Syndrome (PWS). PWS is a rare genetic condition causing an overwhelming and uncontrollable drive to eat that can be life-limiting, as well as learning and physical disabilities. We provide a dedicated helpline, a comprehensive information hub, a network of peer support groups, a varied programme of community events, training for professionals working with those with PWS, and support for vital research. Our aim is to help our amazing community overcome the challenges and live life to the full with PWS.

We are looking for a part time PWS Specialist Advisor for Scotland to support the PWS community in Scotland. PWS is a rare and isolating condition and our ambition it to reach families in Scotland to provide impactful advice, support, information and training. The ideal candidate will have an in-depth working knowledge of health and social care systems and education in Scotland as well as a belief in the potential and value of people with Prader-Willi syndrome.

You will need to be able to demonstrate excellent interpersonal and communication skills, as well as being self-motivated and able to engage with families, health care professionals and policy makers. 

The position is part time (3 days a week) and is home based and ideal for someone living in Scotland

If you want to help us drive forward with our ambitions in Scotland – Please send your CV and covering letter to jlodge@pwsa.co.uk by 9am Monday 22nd September

Interviews will be by Zoom on Tuesday 2nd October.

If you would like to discuss this opportunity please email Jackie Lodge jlodge@pwsa.co.uk 

At PWSA UK, our committed board of trustees helps guide the vital work we do for people with Prader-Willi Syndrome and their families.

They’re supported by a small but mighty staff team, including our experienced Finance and Operations Manager, who takes care of the day-to-day financial work.

We’re looking for a treasurer to join our board - someone who can bring their financial know-how to help us keep a watchful, informed eye on our charity’s finances and provide supportive oversight.

Your role will be about guidance and reassurance, ensuring we remain on steady ground so our team can focus on delivering life-changing support.

What we’re looking for:

• Finance qualifications and experience

• Able to commit to quarterly meetings

• Supportive, collaborative, and enabling

• A genuine commitment to our cause

If this sounds like you, we’d love to hear from you.

Contact Jackie jlodge@pwsa.co.uk for an informal chat.

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 admin@pwsa.co.uk