Support & Advocacy Officer - Fabry

7 months ago

Amersham, United Kingdom The MPS Society Full time

At the MPS Society we aim to transform the lives of people affected by MPS, Fabry and related lysosomal diseases through specialist knowledge, support and advocacy, and research.

**The Role**:
As a Support and Advocacy Officer you will join a skilled team who collectively provide a unique UK-wide support and advocacy service to over 1500 members.

You will primarily provide direct support and practical guidance to our Fabry members. This patient group is largely adult focused but there will be elements of family and child support. You will raise awareness within both the Fabry community and external agencies; and contribute to the development of resources, to promote self-advocacy within the patient group. A key objective of the role will be to build a sense of community and identity for our Fabry membership. You will also have the opportunity to facilitate and contribute to project work, including youth engagement, advisory boards, and support groups.

In addition to supporting the Fabry community there will also be a requirement to provide support to those affected by other conditions under our umbrella.

**Key Responsibilities**:
The following is an overview of the responsibilities of the role - full responsibilities can be found in the Job Description:

- Develop a good understanding of MPS and Fabry conditions
- Develop knowledge of legislation and best practice relevant to supporting people with life-long conditions
- Provide emotional support, information and guidance in areas such as diagnosis, disease awareness, health and social care and disability benefits
- Support individuals and families to access best possible clinical management and treatment options
- Support and signpost people towards mental health and psychological support as required
- Undertake UK-wide travel to visit individuals and families and attend meetings and events
- Support the provision of online support and advice via social media channels
- Promote awareness by giving talks and presentations to outside organisations, professionals and the general public

**Experience & Skills**:

- Minimum of two years’ experience of working with individuals with disabilities in a direct support role, within health and social care, education, or related field
- Ability to communicate accurately, concisely and with clarity
- Highly organised with the ability to manage multiple cases simultaneously
- Strong attention to detail and commitment to upholding best practices
- Excellent IT skills to maintain accurate case recording, produce clear reports, correspondences and presentations
- Collaborative mindset and enthusiasm for working in a small, dedicated team
- Tact, discretion and respect for confidentiality
- Experience of managing projects and service development is advantageous

Prior knowledge of MPS is not required as in-depth support and training will be provided. Regular supervision and a supportive work culture will help you to expand your knowledge and become an expert in the work you are undertaking.

**Essential requirements**:

- Eligibility to work in the UK.
- This is an essential car user post. The applicant must hold a current UK driving licence, with no more than 6 points and be willing to drive UK wide as required.
- **Disclosure & Barring Check (DBS) - **The MPS Society is a charity that provides a range of care, support and activities for children and adults at risk throughout the UK. This is provided through our dedicated support and advocacy service, telephone helpline and out of hours’ support, clinical research, online activities and forums, annual events, patient expert meetings, focus groups and conferences. MPS staff, trustees and volunteers may be asked to be involved in the delivery of its regulated services and activities.
- **This post is exempt under the Rehabilitation of Offenders Act 1974. Due to the sensitive nature of the duties undertaking, the post holder will be expected to undertake a DBS check as part of the recruitment process.**_

This post is primarily based in our Amersham office however UK wide travel is necessary. A flexible approach to working hours to cover travel, our out of hours phone service, and events and conference attendance is required.

**Benefits**:

- Competitive salary
- 5 weeks annual leave (increasing after 5 years' service)
- Additional leave between Christmas and New Year
- Pension contributions
- Employee Assistance Programme

This post is primarily based in our Amersham office however UK wide travel is necessary. A flexible approach to working hours to cover travel, our out of hours phone service, and events and conference attendance is required.

**Next steps**:
For an informal chat about the role or the work of the MPS Society, please contact Steve Cotterell.

**Applications**:
This is a full-time role (35 hours per week) however part time hours (a minimum of 28 hours per week) may be offered to the right person. Salary will be pro-rata for part time hours.

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