About us Join our team at the MPS Society, one of the leading rare genetic disease charities in the UK aiming to transform the lives of individuals and their families affected by MPS, Fabry and other related lysosomal diseases. This is a rare opportunity to join our Support & Communities teams who provide direct support, practical guidance and other patient focused activities to over 1500 members and their families, UK-wide. Our Support Team raise awareness both within the MPS community and external agencies, offering information, advice, support, and advocacy in a range of areas including clinical management, health and social care, housing, education, transition, independent living, palliative care, and bereavement. Ideal candidate As a Senior Support Officer, you will primarily be responsible for raising awareness and providing a high-quality support and advocacy service to our members and their families. You will be a relationship builder who cares about the community we serve and ensures that the individual (or family) remains at the centre of support. You will have experience in multi-agency working and an in-depth understanding of the needs of those with disabilities, their families and carers. Demonstrable experience and knowledge of health and social care, education and relevant assessment processes are essential. You will have excellent written and oral communication skills, with the ability to uphold best practice, challenge poor policy and inappropriate decisions. Excellent IT skills and the ability to plan, prioritise and deliver to tight timescales are essential. You will be self-motivated and highly organised, juggling many strands of work. As part of a small, dedicated team, you will have a positive attitude and a willingness to work collaboratively with your colleagues and external parties to raise awareness, advocate for our membership, as well as supporting the delivery and development of services for the MPS Society community. Whilst a relevant qualification within health & social care, education or a related field is desirable, other knowledge and work experiences may be equally as valuable in this role. Prior knowledge of MPS and related conditions is not required however a special interest in neurology and working with individuals with neurological disabilities is advantageous. In-depth support and training to develop expertise in MPS and related conditions, and the needs of those affected by these progressive, life-limiting conditions will be provided. What we can offer you Join us and you will be working for a caring charity offering: A competitive salary Generous annual leave of 25 days plus bank holidays (pro-rata for part time hours) Extra leave between Christmas and the New Year Pension Life assurance (subject to the conditions of the scheme) Employee assistance programme offering support 24/7 Further information The successful candidate must be eligible to work in the UK. This is a full-time role (35 hrs per week) however part time hours, with a minimum of 28 hrs per week may be agreed for the right candidate. Salary will be pro-rata for part-time. The main duties, responsibilities and essential requirements of this role can be viewed on the attached job description. This is an essential car user post. The applicant must hold a current UK driver’s licence, with no more than 6 points, have access to a car and be able and willing to drive UK wide as required. This role is offered on a hybrid basis with a minimum of 2 days in our Amersham office each week. As part of the role, UK wide travel is necessary. This may on occasion include early morning and/or evening working and sometimes overnight stays. You may also occasionally be required to attend evening or weekend conferences and events. We have policies in place to ensure that any unsociable hours worked are fairly compensated. We encourage candidates to visit the MPS Society website to learn more about us and the community we serve. Alternatively, if you would like an informal chat about the role or the work of the MPS Society, please contact Bethanie Pentecost. Disclosure & Barring Service (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, 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 and for this to be reviewed on a regular basis. Next steps: Applications: Please provide your CV and a supporting statement (maximum 750 words) outlining your understanding of how rare, complex and progressive conditions such as Mucopolysaccharidoses (MPS), including their neurological impacts, can affect individuals and families across the life course. In your response, please describe the experience, skills and approaches you have developed that would support you to carry out the Senior Support Officer role, including (where relevant) supporting people with complex needs, working across health, education and social care systems, and providing advice, advocacy or casework support. Kindly note, applications received without a supporting statement will not be considered. Closing Date: Whilst we have an initial closing date of 20th March, we reserve the right to close this vacancy early if we receive enough suitable applications to take forward to interview and assessment. 1st interviews: Initial virtual interviews will be held end March/early April. 2nd interviews: Final face-to-face interviews and assessments will be held on 16th & 17th April at MPS House, Amersham.