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Every day, the TSA’s small support and information team make a real difference to people affected by the rare genetic condition Tuberous Sclerosis Complex (TSC) and their loved ones. In this vital role, you will help to maintain our high support standards at the TSA, including through operating on the TSA Support Line, developing content for a wide range of platforms and needs, and occasionally attending virtual and in-person TSA events.

You'll be part of a flexible, passionate, welcoming and wholly home-based team, who know they improve the world every single day. The role includes (pro-rata) 25 days annual leave plus 8 bank holidays and the working days that fall between Christmas Day and New Year.

On the TSA Support Line, you will provide support and information regarding TSC via telephone, email and webchat. You will offer an informed, non-judgemental and empathetic listening ear to individuals and families at every step of their journey. The type of enquiries we receive are wide ranging, covering matters such as health, social care and education. You will also engage with professionals supporting people with the condition.

You will have a key role in researching, developing, and updating information across our various platforms including (but not limited to) content for our website, social media, support line materials, leaflets, e-newsletter and our community magazine. The primary audience of the materials will be the TSC community. Materials used by NHS clinics and clinicians are also developed by us, which you will have a central part in developing.

You will help to ensure that our internal processes are effective, and the information that we provide to the TSC community is timely, up-to-date, and relevant.

You will attend TSA events (virtually and in-person) to market the TSA Support Line services, participate in sessions and assist in support-related issues.

We are a small but very impactful charity, where roles are wide-reaching. Although this role is focused on support and information services, the successful candidate should also expect to get involved with projects from other TSA teams including communications, research and fundraising.

Responsibilities

1. TSA Support Line

1.1 Through the TSA Support Line, you will provide information and support to individuals living with TSC, their families and professionals by telephone, email and webchat, ensuring that:

• All enquiries received through the TSA Support Line receive a response based on high quality, up-to-date and evidence-based information.
• You log, triage and respond to enquiries received by telephone, email, post and webchat in line with agreed timelines, policies and procedures.
• You direct non-support related enquiries to appropriate TSA staff, taking messages where necessary.
• You are sensitive and responsive to the needs of the individuals living with TSC, family members and health, social care and education professionals using the TSA Support Line.
• You provide time-limited, structured support through formal case management processes for a small number of individuals and families who are most vulnerable and who need regular help and support. This includes individuals with learning disabilities, autism and complex needs, and families who face a wide range of challenges accessing health, social care and education services for their loved ones.
• You collect and accurately record data enabling the TSA to monitor and evaluate the performance of the TSA Support Line, including usage data (such as number and length of calls), qualitative information (feedback from service users) and data collected in conversation (such as logging broad categories of issues that service users are facing).
• You support individuals and families who wish to apply for financial support from the TSA Support Fund, helping them to complete the relevant application forms, ensuring that they supply documentary evidence, and logging their application appropriately for audit and compliance.
• Your support demonstrates best practice and complies with the law on safeguarding (making sure we are working appropriately with vulnerable adults and children) and data protection (making sure that we are handling all sensitive data appropriately).
• You proactively engage with regular reflective practice and supervision to safeguard your own health and wellbeing and support individual and team learning. This will include individual supervision through regular 1-2-1s with your line manager and team supervision through weekly calls for all those working on the support line.
• You will contribute your expert insight into the challenges and issues that the TSC community are facing to help colleagues across the organisation develop information materials, online resources and event agendas for communications channels including the TSA’s community magazine ('Scan'), our website, social media and events.
• You will ensure that internal processes for recording TSA Support Line enquiries, and signposting information on the support line, are maintained to a high standard and kept up to date.

1.2 You will play a key role in the TSA’s safeguarding as part of your work on the TSA Support Line and in supporting other members of staff with any questions that they have.

1.3 You will ensure confidentiality in the provision of the TSA Support Line, managing conversations and relationships tactfully and diplomatically with members of our small community who may also interact regularly with the charity at face-to-face and virtual events and through our social media channels. 

1.4 You will work closely with colleagues from across the TSA to ensure that our support and information services are joined-up with and informed by other services offered by the TSA more broadly across our website, social media channels, Scan and face-to-face and virtual events.

1.5 You will help to ensure that the TSA Support Line demonstrates best practice in the provision of support and information. You will work with the Joint Chief Executive and Support and Information Manager to develop proposals to develop and market the service that are joined-up with the support provided across our website, social media channels, Scan and face-to-face and virtual events.

2 Support, information and signposting

2.1 Ensure that high quality, up-to-date and evidence-based information is available to individuals and families living with TSC, and the professionals that support them. Regularly review, draft and develop new materials to support people affected by the condition.

2.2 Work with the Joint Chief Executive and Support and Information Manager to develop appropriate and consistent information to signpost TSA Support Line service users to external partner organisations that can provide specialist support for specific aspects of TSC (such as autism or mental health issues) and living with TSC (such as finding a job or facing bereavement).

2.3 Initiate and maintain regular contact with NHS TSC clinics across the UK to encourage greater communication and support between the TSA and TSC clinics. This could include encouraging clinics to join the NHS TSC Rare Disease Collaborative Network (RDCN), liaising with TSA Medical Advisers about medical support line enquiries, or working with clinics to better understand how the TSA can best help them.

2.4 Work closely with the rest of the TSA including communications, research and fundraising, to demonstrate current knowledge of the work of the organisation and developments in TSC.

2.5 Keep up to date with external events and news and draft relevant content for social media, physical media, e-news and the community magazine, Scan, to support and inform the TSC community.

2 TSA events

2.1 Attend TSA face-to-face and virtual events each year to market the TSA Support Line to people living with TSC, their families and professionals (up to approximately seven face-to-face events per year). General events assistance for the event on the day of face-to-face events will also be expected (for example, this could include time on the reception desk or directing attendees between sessions). Face-to-face events could include Outlook (for adults living with TSC), Big Day (our annual meeting for everyone in the TSC community), Family Fun Days (for younger families), TSA Togethers (regional events) and events for NHS TSC clinicians. Time off in lieu will be given for evening and weekend events, or events outside of your usual working days.

2.2 Help to generate ideas for sessions at TSA events by identifying any trends in information and support needs through the TSA Support Line.

4 Supporting health, social care and education professionals

4.1 Develop and maintain training and education materials to help health, social care and education professionals to better understand the impact of TSC.

4.2 Act as a point of contact for professionals who contact the TSA, working with colleagues to build credibility and strong working relationships with them.

Other requirements of the post

The post holder must be prepared to work flexibly to meet the needs of the organisation. This will entail occasional evening and weekend work. Regular travel within the UK will be needed for team meetings, TSA events and training provision. This would normally require access to a car (mileage will be paid) or travel by public transport (tickets will be paid).

The post holder will be expected to have adequate homeworking facilities to allow them to fulfil the role to the best of their abilities.

A DBS disclosure will be required prior to taking up post.

Training on helplines from the Helplines Partnership and on the Virtual Call Centre and database, Beacon, by the in-house team can be provided.