Support Services
Advice Service
The BBS UK Advice Service was established in 2020 to provide dedicated support and advocacy for individuals with Bardet-Biedl Syndrome (BBS). The team helps people access the right local support across health, education, and social care. This includes negotiating support packages, assisting with housing and benefits applications, and supporting future planning.
Support may cover a wide range of needs, such as:
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Sight, sensory, and physical requirements
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Education and learning disability support
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Accessing benefits and financial assistance
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Mental health and emotional wellbeing
Often, individuals require help across several of these areas at once.
Because people with BBS do not fit neatly into one statutory service, the Advice Service plays a vital role in ensuring no one is passed between systems or overlooked. We help service users navigate complex processes, promote self-advocacy where possible, and foster positive working relationships with the professionals and teams supporting them.
We also recognise the challenges faced by professionals working with limited resources. Part of our role is to collaborate with agencies, equipping them with greater understanding and insight into BBS, ultimately strengthening the support available for those affected.
Advice Service Team
Our Advice Service Team draw on their backgrounds in social work and education to navigate complex systems and processes. Their expertise enables them not only to understand how these systems operate but also to challenge decisions and advocate effectively for service users.
Communication is often at the heart of what we do. We are frequently asked to step in when dialogue between individuals and services has broken down, something that too often happens because of limited understanding of the complex and multifaceted challenges faced by people with BBS.
In these situations, our team acts as a bridge: ensuring that people feel heard and understood, while also coordinating and sustaining constructive communication between all parties.
Referrals
Our referrals come mainly through our BBS clinics support team, but we also see individuals, who have found us online or by word of mouth, family members, and people referred to us through the NHS or their GP.
To access the BBS UK Advice Service, contact Rebecca Perfect by email here.
Chris Humphreys Memorial Fund
We believe that the BBS UK Conference provides an invaluable opportunity for members to meet and connect with other people who have the Syndrome, and to learn more about scientific developments and about living well with BBS.
The Chris Humphreys Memorial Fund (CHMF) provides financial support for people who might otherwise find it difficult to attend.
Find out more by following the link here.
Rareminds Counselling Service
We are pleased to be working in partnership with Rareminds (www.rareminds.org) to offer a specialised counselling service for individuals aged 18+, with a diagnosis of Bardet-Biedl syndrome.
Rareminds counsellors are trained and experienced therapists who have undertaken additional training on counselling for rare diseases, and the impact of BBS.
How to access our Rareminds Counselling Service
For more information please contact Rebecca, Advice Service Manager, on 07421 455649 or [email protected].
IT Equipment Fund
With the increasing reliance on digital technology, limited access or expertise can be a huge barrier to building communities, accessing health and social care, and education.
BBS UK can offer practical and financial support to assist with the purchase of devices including laptops, tablets and computers, to support with access to education, medical and social care appointments and social opportunities, all of which are crucial for maintaining good mental and physical health and reducing feelings of isolation and loneliness.
Who can apply for help?
- The scheme is open to all those who have a diagnosis of BBS, and who are of primary school age upwards; there is no upper age limit.
- You must have either limited or no access to a device such as a laptop, computer or tablet
- Applications will be completed in the name of the person who needs the equipment and can be submitted by parents, carers or healthcare professionals
- Only one application per household may be submitted
How to apply?
- Email our Advice Service Manager, Rebecca Perfect: [email protected]
- We will talk to you (either over the phone or by email) to establish your needs and understand which type of device would be most suitable.
- Following that assessment, we will explore external sources providing IT equipment and support with an application to them.
- If these options prove unsuccessful then BBS UK may be able to provide financial support to purchase a device.
Deadlines
- There is no deadline; we welcome applications submitted at any time of the year.
- Please note that there is a limit of one application per person per year.
Who will own the equipment?
- The equipment will belong to you and ongoing maintenance/repair will be your responsibility
- Any problems that arise with equipment after delivery must be resolved between you and the supplier
- BBS UK is unable to resolve technical issues with the equipment itself
Paying for the equipment
- Once funding has been agreed BBS UK will purchase the equipment on your behalf
