Sara Connelly is the cystic fibrosis social worker for the adult cystic fibrosis centre at the RVI, Newcastle.
Sara works Wednesday – Friday and can be contacted either by mobile 07834774773 or email [email protected].
Referrals to Sara can be made through any member of the cystic fibrosis team or directly from the patient. Sara can offer support through face to face appointments, including home visits or at clinic, telephone or virtual meetings as well as visiting inpatients on the cystic fibrosis unit.
What support can be offered
The cystic fibrosis social work support plays a crucial role in addressing the emotional, practical, social and financial needs of people living with cystic fibrosis. The social worker typically provides support with the following:
Emotional Support: Helping patients and their families cope with the challenges of living with cystic fibrosis, and through periods of change and adjustment in their lives. The aim is to work with people with cystic fibrosis to improve quality of life by addressing the holisitic needs that go beyond medical treatment.
Benefits Advice and Financial Assistance: Navigating the benefits system can be complex and overwhelming. The social worker can provide personalised guidance about the types of benefits that may be relevant to you and your circumstances. This can include advice regarding Personal Independence Payments (PIP), and Income-Related benefits (Universal Credit, Employment Support Allowance). Advice and assistance is provided to appeal benefit decisions, if appropriate, where there has been a denial or reduction when criteria is met.
The CF social worker works closely with the Cystic Fibrosis Trust; a charitable organisation that are able to provide financial support to people with cystic fibrosis. They provide a number of different grants depending on the situation and identified need.
Employment and/or Education: People with cystic fibrosis may have support needs relating to employment or education issues. Managing cystic fibrosis alongside a career or attending education can present unique challenges, such as attendance at medical appointments, inpatient admissions, and/or limitations and complications in working/education connected to cystic fibrosis. Cystic fibrosis social work can provide support in managing transitions and changes with work or education. Cystic fibrosis social work can assist the person with cystic fibrosis in understanding their rights under disability law and if necessary, refer you to legal services specialising in disability rights.
The practical and emotional support to people with cystic fibrosis also includes but is not limited to, advice and help with housing issues, future planning and compassionate support for patients and families during transplant and end of life care. They work closely with the cystic fibrosis team to offer holistic assistance to ensure the physical, emotional, social and practical needs of the individual and their family are met. The social worker can link people with cystic fibrosis to other external agencies to help access resources to address social needs.
