Paid Vacancy: Community Support Worker Lead for Patients with Sickle Cell Disorders
The Sickle Cell Society is looking to recruit a Support Worker to join the team to provide community based support, advice and guidance to patients recently discharged from hospital following acute care for sickle cell disorders or thalassaemia.
The Sickle Cell Society is working in partnership with North East London Integrated Care Board (NEL-ICB) on a community based initiative focussed on improving and addressing the support needs of people with sickle cell living in North East London. This project will be funded, by NEL-ICB.
The project aims to reduce inequity of care for patients with Sickle Cell Disorders (SCD) particularly in areas of deprivation as poverty and disadvantage. The post-holder will be expected to travel across the NEL footprint to provide face-to-face practical advice and emotional support to patients.
Post: Community Support Worker Lead for Patients with Sickle Cell Disorders
Base: Community based outreach
Accountable to: London Programme Manager.
Manages: NEL Lead Mentor and Community Project Coordinator.
Hours: 21 hrs Per week
Salary: £28,000 (£16,800 pro rata)
Length of contract: Fixed term, one year (post will be continued subject to funding).
Job Purpose
The Community Support Worker Lead will co-ordinate and oversee the successful delivery and meet the aims and objectives of the North East London Home from Hospital project.
This exciting, new role will work directly with patients and families to improve knowledge and self-management of Sickle Cell Disorder, and will develop strong and effective support services and promote effective use of clinical and emergency services.
The post holder will work closely with North East London Sickle Cell Clinical staff, Community Project Manager, Community Hub, Senior Clinicians.
We are seeking an individual with strong communication and interpersonal skills.
North East London Community Programme
Since September 2024, the Sickle Cell Society has worked with NHS Barts Health and BHRUH to improve outcomes for people living with sickle cell across North East London (NEL). This area includes some of the most deprived boroughs in London and has a high prevalence of sickle cell.
The programme brings together:
- Advocacy Link Worker (Barts Health): Connecting patients to healthcare teams and services.
- SCS Youth Mentors: Supporting young people (10–25) to improve self-care and emotional wellbeing.
- Welfare & Benefits Advisor: Assisting individuals and families with access to benefits, housing, and employment support.
Home from Hospital Programme
Focused on patients recently discharged from hospital or with repeated admissions, this project offers short-term, intensive support through a team of 3 Community Support Workers.
Support includes:
- Outreach to those at risk of frequent crisis.
- Assessment of practical and emotional needs post-discharge.
- Signposting to community services.
- Development of peer support groups.
The goal is to support 150 patients over 12 months through personalised, flexible, and community-based care.
About the Sickle Cell Society:
The Sickle Cell Society (SCS) is the only national charity in the UK that supports and represents people affected by a sickle cell disorder. We provide information, advice, and support to enable and empower individuals and families to improve their overall quality of life. Approximately 15,000 people in the UK have sickle cell disorder. These inherited conditionals predominantly affect people of Black African
and Black Caribbean heritage and to a lesser extent people of Mediterranean, Middle Eastern, South Asian, and Central/South American heritage.
We assist and enable people living with SCD to realise their full potential whilst successfully managing the challenges they face in living with this potentially life-limiting condition. We are a small, friendly, and close-knit team of 14 skilled and highly committed staff approximately 30 active volunteers.
If you want to find out more about the work we do, including the Give Blood, Spread Love Project, Screening Programme, and Helpline Services, please visit our website.
Key responsibilities and duties
- Patient Support and Outreach
- Provide short-term, practical and emotional support to patients recently discharged from hospital or at risk of frequent sickle cell crises.
- Conduct home visits, community-based meetings, and remote support based on patient needs and preferences.
- Needs Assessment and Care Planning
- Carry out holistic assessments with patients and families to identify support needs.
- Co-produce tailored support plans focusing on health, wellbeing, self-care, housing, education, employment and financial needs.
- Navigation and Advocacy
- Support patients in accessing healthcare, primary care services, social care, and local authority support.
- Advocate on behalf of patients with professionals, services, and agencies where required.
- Information and Signposting
- Provide clear information about sickle cell, community support services, and entitlements.
- Refer patients to relevant services including mentoring, benefits advice, peer groups, and holistic support.
- Partnership and Collaboration
- Work closely with hospital and community clinical teams, including Advocacy Link Workers and Local Haemoglobinopathy Teams.
- Attend multidisciplinary team meetings and contribute to case discussions as needed.
- Peer Support and Community Engagement
- Facilitate or help establish peer support groups or networks to reduce isolation and increase community awareness.
- Help raise the profile of sickle cell disorder and improve community understanding.
- Monitoring and Reporting
- Maintain accurate and timely records of interactions, outcomes and referrals.
- Contribute to evaluation and monitoring processes, including data entry and feedback collection.
- Safeguarding and Confidentiality
- Adhere to safeguarding protocols and report any concerns promptly.
- Handle sensitive personal data in line with confidentiality and data protection policies.
This job description is intended to assist the post holder to understand his/her duties/main responsibilities. It may be amended from time to time, as the post develops.
Person specification
You are advised to read the following notes carefully .You must demonstrate in your application form how you meet the criteria listed below.
E- Essential
D- Desirable
Essential Skills and Experiences
- Minimum 2 years’ work experience in a similar role or health environment – E
- Work experience of Project Management – D
- Experience of working on own initiative and with others – E
- Experience of supervising / supporting volunteers – D
- Experience of delivering or supporting a community project – D
- Experience of service improvement including service user involvement – D
- Knowledge and experience of working with and engaging multiple stakeholders – E
- Experience of working in a role delivering advocacy, training, or education – D
- Knowledge and experience of NHS services – D
- Experience of budget management – E
- Knowledge and understanding of Sickle Cell care needs – D
- Lived experience of sickle cell, either directly or through a family member – D
Competencies
- Shows empathy to people experiencing difficulty – E
- Good listening skills – E
- Non-judgemental about a person’s circumstance or situation – E
- Good networker, adept at quickly building stakeholder relationships – E
- Understanding and application of confidentiality – E
- Excellent IT skills and competency in MS Office applications – E
- Possesses Excellent oral communication and writing skills with thoroughness, accuracy, and attention to detail – E
- Possesses excellent time management skills and experience of prioritising effectively -E
- Ability to collect and analyse data – E
Attributes
- Shows confidence in dealing with people and situations – E
- Excellent interpersonal skills – E
- Demonstrates a willingness to learn- E
- Is enthusiastic about the sickle cell cause – E
- Willing to work at weekends or evenings if necessary -E
To Apply:
Please complete the Application Form and send it to applications@sicklecellsociety.org before the closing date
Please note all applicants must reside in the UK.
Closing date for applications: 4th August 2025
Interview date via Zoom or Microsoft Teams : TBD
Additional Notes:
- Please make sure that you demonstrate how you are suitable for this role in your application by referring to the person specification.
- Please note that we do not accept CVs and all applicants must reside in the UK.
Job Description and Person Specification: Community Support Worker
Application Form: Download the Application Form here
Equal Opportunities Form: Download and complete our Equal Opportunities Form here