Batten disease is a rare genetic neurodegenerative disease. It is a form of childhood dementia. There are a number of forms of the disease, all of them have symptoms including seizures, loss of skills such as walking, talking and ability to eat, and dementia until the child or young person becomes totally dependent on their care givers. Sadly, the children and young people die. There is no cure.
The Batten Disease Family Association (BDFA) is a charity and patient organisation providing support and advocacy services and funding research. We currently work with 100 children and their families. We are a small team and we punch well above our weight.
The BDFA is going through a period of substantial change with a new Chair, new CEO and our offices moving recently to City Road in London. We have recently appointed a new Family Support Officer (North) and we are now seeking a part-time Family Support Officers for the South. The South Officer will be based in the City Road office, with some flexibility. This role will require regular travel.
No two days will be the same in this role. You may visit a family in their home, advocate about their child’s school needs, or take a call from a newly diagnosed family. There are social media channels to respond to and professionals to advise. This role requires a high degree of flexibility, organisation and practicality. The Family Support Officer (South) will need tact, diplomacy, empathy and strong personal resilience. The Family Support Officer (South) will work as a team with the Family Support Officer (North) so that there is always support for families and closely with the Clinical Nurse Specialist based at Great Ormond Street Hospital.
This role is challenging but immensely rewarding.
The successful candidates will receive a salary of £28,000 pro rata (£14,388), a workplace pension, and 25 days annual leave plus bank holiday pro rata as well as TOIL when necessary.
Application is by covering letter of no more than 2 pages to include what interests you in working with families and children with Batten disease and a CV.
Applicants will be subject to an Enhanced DBS and PVG check and a clean driving licence is required as well as a relevant qualification to at least NVQ level 4.
Applications submitted without a covering letter will not be considered.
Please follow this link to apply for this role: https://www.charityjob.co.uk/jobs/batten-disease-family-association/family-support-officer-south-/612774?tsId=2&referrerIsJobSearch=True&rankId=1
Please note that applications will be reviewed as they are submitted. The closing date is 2 Feb 2019 and interviews will be held on 15 Feb 2019.