TSA Adviser (Wales)

We are looking for a talented and motivated individual to provide information and support to people affected by Tuberous Sclerosis Complex (TSC) in the South West of England.  You will be a regional representative for the Tuberous Sclerosis Association (TSA) helping us reach out to people living with TSC and their families in the South West of England. 

TSC is a genetic condition that can lead to growths in various organs of the body.The organs most commonly affected are the brain, eyes, heart, kidney, skin and lungs.These growths may be referred to as benign tumours but they are not cancerous.When they cause problems it is mainly because of their size and where they are in the body.

People with TSC may be diagnosed during investigation or treatment for problems with specific organs, or during genetic screening of family members.For example, diagnosis may follow the finding of heart tumours before birth or in newborns, the onset of infantile spasms in infants, a diagnosis of autism in children, the development of skin problems in adolescents, or the onset of kidney or lung problems in adults.

There is a wide range of severity in TSC.Some people living with TSC are so mildly affected that they experience few problems.Other people living with TSC can be severely affected and need life-long support from their families or live in residential care.

One in every two people living with TSC have learning disabilities such as intellectual impairment and problems with attention and memory.Many people living with TSC also have behavioural problems such as autism, ADHD, aggression, depression, anxiety and sleep disorders, which have a serious impact on family life.

The TSA is the only UK charity dedicated to supporting people affected by TSC.  Our mission is to provide hope for today and a cure for tomorrow.  Our aim is to ensure that everyone affected by TSC has the care and support they need.  To find out more about and our work, please take a look at our website www.tuberous-sclerosis.org.

If you would like an informal discussion about this post please email the TSA’s Chief Executive Louise Fish at louise.fish@tuberous-sclerosis.org or call on 0778 639 0101.

Please send a CV and short covering note to sarah@clockworkhr.co.uk by 5pm on Friday 1 September 2017.

Job description:  TSA Adviser (South West)

Reports to:               Senior TSA Adviser (England)

Location:                  Home based in South West England with regular travel within the region

Hours of work:        21 hours per week (flexible arrangements possible)

Salary:                       £16,400 (full time equivalent £27,333)

Pension:                   Non-contributory pension scheme (after six months’ employment)

Holiday:                    Twenty-five days annual leave, plus eight bank holidays

Notice period:         One month

The role of the Adviser

The Adviser will provide information, advice and support to individuals living with TSC and their families on the telephone, by email and through home visits.  The Adviser will work with professionals to ensure that individuals with TSC and their families get the optimum service from health, education or social care.  The Adviser will work closely with colleagues from across the Support Services team, and he/she will be a strong team player.  The Adviser will have a warm and empathetic style and be able to work with people who have a wide range of abilities.

Responsibilities

1.Support and Information

1. Provide accurate and sensitive information to people with TSC, their families and carers on day-to-day issues of living with the condition. This can occur via phone, e-mail or personal visit and letter.

1. Provide emotional support as required to individuals and families affected by TSC.

1. Help individuals and families identify their specific issues and signpost or refer them to the relevant specialist local agencies for appropriate services and support.

1. Maintain up-to-date information on resources across your region, consulting with relevant agencies where appropriate.

1. Assist individuals, families and carers in accessing and obtaining necessary support and services which will help them in their daily living. This may include:

• Writing letters of support and referral letters
• Attending multi-disciplinary meetings
• Attending specialist appointments
• Attending TSC Specialist clinics at the invitation of the team
• Assisting with adjudication, complaints and tribunal procedures
• Liaising with other professional and service providers

2.         Working with clinics

2.1       Reach out to TSA clinics in your region to build positive working relationships that enable the TSA to support patients and families attending the clinic.  Depending on the relationship with each clinic, this may include:

 

• Signposting or referring patients and families to a regional clinic.
• Working with clinic staff, patients and families prior to a clinic visit to ensure maximum benefit from the appointment.
• Attending clinic visits alongside patients and families where they have asked for support from the TSA.
• Working with patients and families after a clinic visit to provide information and support in relation to education, social care and welfare.
• Supporting patients and their families to give feedback to the clinic on their levels of satisfaction with their clinic experience.

3.         Liaising and networking

2.1      Connect with relevant organisations or networks in your region to represent the needs of people living with TSC.

 

2.2      Contribute to the development of the TSA by actively forging mutually beneficial relationships with related organisations in your region.

 

2.3      Provide training and information on TSC to local groups of families or professionals, adapted to the needs of the individual or group.

 

3.         Broader responsibilities

3.1      Develop and maintain a working knowledge of TSC including recent significant developments.

 

3.2      Develop and maintain a working knowledge of associated services, rights and entitlements and relevant specialist agencies.

 

3.3      Develop and maintain an expert knowledge of policy and developments in one of the following areas: health, social care or education, supporting English colleagues in the Support Services team when they have difficult queries in this area.

 

3.4      Contribute to the development of standard training materials for English professionals working in one of the following areas: health, social care or education, which can be tailored by individual Advisors as and when needed.

 

3.5      Collect data about the services and support you provide to people living with TSC and their families, to contribute to the TSA’s analysis of the impact of its support services and the capacity needed to provide high quality support services.

 

3.5      Contribute to and attend TSA events such as the Big Day, Outlook, professional conferences, family weekends and the AGM.

 

3.6      Contribute to TSA publications such as SCAN magazine when requested.

 

Other requirements of the post

The post holder must be prepared to work flexibly in order to meet the needs of the organisation.  This will entail occasional evening and weekend work.  Travel within your region will be required in order to carry out home visits and support people living with TSC and their families attending regional TSC clinics.  This would normally require access to a car (mileage will be paid), or travel by public transport (tickets will be paid).

Occasional travel within the UK will be required for team meetings and events.

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

Person specification

Essential

• Educated to degree level or equivalent
• Knowledge of health and social care structures
• Previous experience of at least one of the following: health, social care, education
• Previous experience of advocating for others, either in professional or personal life
• Experience of working with children or adults with disabilities or chronic health conditions
• Understand safeguarding and work with vulnerable adults and children appropriately
• Understand data protection and manage sensitive information appropriately
• Able to work with people with a wide range of abilities, with a warm empathetic style
• Able to assess and analyse complex problems, making appropriate responses to support people living with TSC and their families
• Able to manage a diverse caseload, prioritise needs and manage your own time
• Good communications skills (oral and written)
• Competent IT and database user
• Good team player

Desirable

• Health, social care or education qualification
• Experience of working with people living with learning disabilities or autism