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Closed: 23 April 2017

BBS UK Support Officer: Birmingham

Posted by BBS UK Clinics Ltd

Location Birmingham, West-Midlands, West Midlands

Join our small, passionate and energised team and make a difference to the lives of people living with Bardet-Biedl Syndrome!

Job Description

Bardet-Biedl Syndrome UK Clinics Ltd is a subsidiary company of Bardet-Biedl Syndrome UK (BBS UK), a charity aimed at protecting the health and promoting the welfare of persons affected by Bardet-Biedl Syndrome (BBS), their families and carers. 

BBS features rod-cone dystrophy, obesity, renal abnormalities, developmental delay, learning difficulties and extra digits among other possible symptoms.  BBS UK has a third-sector contract with NHS England to provide support to patients attending specialist multi-disciplinary clinics in Birmingham and London; the successful candidate will join a small but passionate and energised team of staff and volunteers and will provide support to BBS patients (adults and children) within the Birmingham service.

The successful candidate will work from home. There will also be attendance at Birmingham Children’s Hospital; Queen Elizabeth Hospital, Birmingham; Great Ormond Street Hospital, London; Guys Hospital, London and travel to patient’s home location.  Attendance at the annual BBS UK weekend family conference will be required.

The hours of work are 25 hours per week. Specific days and hours of work to be decided to the mutual benefit of BBS Clinics Ltd and the successful applicant, however flexibility is a key requirement of the role.  This role is dependent on and contractually linked to funding from NHS England.

General areas of responsibility:

  1. Attendance at the BBS UK Clinics held in Birmingham and London, approximately 24 clinics per year.

  2. Achieve a working knowledge of BBS

  3. Provide emotional and practical support to patients and their families living with BBS, before during and after clinic, to achieve the best quality of life.

  4. Provide advocacy services to ensure patients and their families receive all the benefits and social care to which they are entitled, including:assessments and assistance with applications, social services referrals, OT referrals, EHCP applications, Blue Badge applications, support with school applications, signposting support etc.

  5. Plan and attend BBS UK activities/residential trips for adults and children/young people living with BBS

  6. Plan and support the development of focused groups, activities and consultation exercises with BBS patients

Essential Experience

  1. The person appointed will have had at least three years’ experience working with children and families, in a team, preferably with experience of Bardet-Biedl Syndrome or in a relevant voluntary, statutory, professional or academic setting.

  2. A strong desire to improve the lives of those persons living with BBS is essential.

Skills and Knowledge

  1. Excellent communication skills, oral and written.

  2. Good IT skills including experience of Office, Excel, Outlook and Word.

  3. An ability to relate in an advisory and enabling capacity to a wide range of people, particularly support group leaders and professional workers, in a variety of settings.

  4. Good knowledge of relevant voluntary organisations (for example those which promote mutual support between groups) and relevant statutory agencies (for example, social service departments, education and health authorities).

  5. Ability to prioritize when faced with competing work demands.

  6. Ability to work on own initiative.

  7. Ability to encourage and empathize with newly diagnosed children and their families and vulnerable adults and offer hope.

  8. Experience of working with vulnerable people with complex needs and/or challenging behaviour.


  1. Willingness to undertake some work during unsociable hours - to be compensated by time off in lieu.

  2. Ability to travel throughout the designated area. The person appointed will be car owner/driver or have full access to a car for work purposes. A mileage allowance and/or public transport costs, including by rail will be paid where appropriate.

  3. Ability to relate well to support groups representatives, colleagues, professional workers and to the public.


  1. Knowledge of the complexities of Bardet-Biedl Syndrome and the problems faced by those having Iow or no vision and additional medical problems.

  2. General knowledge of the generic issues affecting support groups.

To Apply:

By application form only. CVs are not invited and will be disregarded.

The client requests no contact from agencies or media sales.

BBS UK Support Officer Job Description (.doc) Download

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