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.
Chris Humphreys was one of the founder members of BBS UK who organised the conference and supported BBS families for many years. Sadly, Chris passed away a few years ago and so the Chris Humphreys Memorial Fund has been created in her memory, in order to support people to attend the BBS UK weekend family conference.
The fund is limited and will be allocated on a first come first served basis.
We are able to receive applications to the Fund for as long as the Fund contains sufficient monies to be able to offer support.
What Will the Fund Cover?
The fund will cover the cost of up to two parents/carers (children go free) or one adult who has BBS and a personal assistant/carer, to attend the conference weekend.
This will include dinner, bed and breakfast on the Friday and Saturday nights.
The fund is limited and will be allocated on a first come first served basis.
We are able to receive applications to the Fund for as long as the Fund contains sufficient monies to be able to offer support.
Who is eligible?
Those who are attending for the first-time and who meet the following criteria:
- Currently living in England, Scotland, Wales, Northern Ireland and Republic of Ireland
- Adult diagnosed with Bardet-Biedl syndrome or
- Parent/carers of a child (0-17yrs) diagnosed with Bardet-Biedl syndrome (child must be living with applicant)
Eligible for any of the following benefits:
- Universal Credit
- Child Tax Credit
- Working Tax Credit
- Income Based Job Seekers Allowance
- Income Related Employment Support Allowance
- Income Support
- Housing Benefit
- Pension Credit
How can I apply for support from the CHMF?
To apply for support, contact your Patient Liaison Officer directly, or send an email to [email protected]. A copy of a recent benefits letter, no more than 6 months old, will be required to support the application. If the letter does not confirm the applicant’s address, a utility bill will also be required.
What happens if I am offered support from the Fund?
If your application is successful, you will be directed to complete the BBS UK Conference Booking Form (if you haven't already done so) and to book your room at the hotel. You will need a card to guarantee your room, however your accommodation will be paid for by BBS UK.
FAQs
Am I guaranteed to receive support from the Fund?
No, the funding pot is limited and will be allocated on a first come, first served basis.
Does the Fund cover transport costs?
No, however BBS UK may be able to offer some support in exceptional circumstances.
How many people from my family/friendship group will the fund cover to attend conference?
The fund will pay for two parents/carers to attend – *all child(ren) diagnosed with BBS and their sibling(s) go free. The fund will pay for an adult diagnosed with BBS to attend, along with their personal assistant/carer.
Can I apply to the Fund if I have previously attended a BBS UK Conference?
No, the Fund is only available to first time attendees.
Where else can I go for support?
The fund will provide funding for families with children 17 years and under, in receipt of means tested benefits; for more information go to www.familyfund.org.uk
Local authority funding may also be available, contact your social worker or local authority for support.
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
Useful Resources
We have gathered together a collection of useful links and resources for other charities and organisations which offer information, advice and support for adults, young people and their families and carers.
CITIZENS ADVICE
It's important to make sure that you get all the help that you're entitled to. Citizens Advice website can give you information on benefits and tax credits if you are working or unemployed, sick or disabled, a parent, a young person, an older person or a veteran.
www.citizensadvice.org.uk/benefits
DISABILITY GRANTS
This is a directory and search tool to find appropriate grants for families and individuals.
GOV.UK
For benefits information regarding Disability Living Allowance, Personal Independence Payment, Carers Allowance, Income Support and other available benefits.
THE MONEY ADVICE SERVICE
Charitable grants for ill or disabled people. A grant is a financial donation that you don’t have to repay. Many UK charities and trusts provide grants to help with the extra costs of ill health or disability. Find out what grants are available and how to apply.
TURN2US
Turn2us is a national charity that helps people in financial hardship gain access to welfare benefits, charitable grants and support services.
www.moneyadviceservice.org.uk/en/articles/charitable-grants-for-ill-or-disabled-people
GO HENRY
The goHenry pocket money card is a safe way for your child or young person to learn money management. For children aged 6-18 years.
IT BUDDY
Available across the country in local libraries to help support with the completion of online and paper forms. Contact your local council or library for more information and to make an appointment.
BRITISH KIDNEY PATIENT FEDERATION
Is a leading kidney patient support charity providing advice, support and financial assistance to thousands every year.
DIABETES UK
Can offer information and support to those affected by diabetes. Their wide range of products and services are designed to help you manage your diabetes, whatever support you need, whether you're looking for insurance, information, or just someone to talk to.
GENETIC ALLIANCE UK
Genetic Alliance UK work on a variety of issues that families and individuals with genetic conditions face. They provide information, support families and influence the services needed by these patients.
MIND
Mind is a mental health charity that offers information and advice to people with mental health problems and lobbies government and local authorities on their behalf.
NATIONAL KIDNEY FEDERATION
NKF is the largest kidney patient charity in the UK. Run by kidney patients, for kidney patients.
RARE DISEASE UK
Rare Disease UK (RDUK) provides a united voice for the rare disease community by capturing the experiences of patients and families. They work with their supporters to raise the profile of rare diseases across the UK. They seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.
SAMARITANS
Samaritans is a charity aimed at providing emotional support to anyone in emotional distress, struggling to cope or at risk of suicide throughout the United Kingdom and the Republic of Ireland, often through its telephone helpline.
CEA CARD
A national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). The Card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema.
MAX CARD
A discount card for foster families and families of children with additional needs. Families simply show their Max card upon entry to a venue in order to obtain free or discounted admission.
Email [email protected] or phone 01133 947 951 or see your Local Offer.
MERLIN’S MAGIC WAND
Merlin's Magic Wand is a children's charity that supports children facing challenges of serious illness, disability or adversity around the world. The Charity provide tickets and fund travel grants to families to enjoy their day at a Merlin Entertainments’ attractions, such as Legoland theme parks, Sea Life Centres, and Madame Tussauds.
PHAB
PHAB’s mission is to inspire and support children, young people and adults with and without disabilities to make more of life together - breaking down community barriers, reducing social isolation, and creating opportunities for disabled people to enjoy the same activities and challenges as, and alongside, those without a disability.
VISA (Visually Impaired Sailing Association)
VISA-GB is run by blind and partially sighted sailing enthusiasts to help others to enjoy the freedom of sailing. Through regular sailing activities, training opportunities, social events and sailing trips in the UK and abroad, members develop new skills, increase their confidence and independence, and form lasting friendships.
CONTACT - for families with disabled children
Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability. They support families with the best possible guidance and information and bring families together to support each other.
GOV.UK - Documents to support families
This link will take you to the government website that has all the main documents to support families with children/YP that have medical needs/and/or special educational needs.
The third document link on the website takes you to the new government guidance for a multitude of things, including the new Disability Code of Practice and Early Years guidance. This is a good starting point.
www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3
GOV.UK - Important Changes to the SEN & Disability Support System
A series of leaflets explaining important changes to the SEN and disability support system, for children and young people. These changes start on 1 September 2014. The leaflets cover the following areas: making decisions about your support; the local offer; education, health and care (EHC) plans; post-16 options for support.
www.gov.uk/government/publications/sen-and-disability-support-changes-information-for-young-people
Habilitation VI UK
Habilitation VI UK is the professional body for Habilitation Specialists in the UK, providing leadership and setting professional standards. They aim to support their members to help maximise the habilitation skills (orientation, mobility and independence skills) of children and young people with vision impairment.
They work directly with families, involving parent/carers in joint planning, provide guidance tailored to their child’s needs, and connect them with other services. This ensures families feel supported while their child gains the skills needed to thrive at home, in education, and in the wider community.
Habilitation Quality Standards
These Quality Standards are designed to ensure that children and young people with visual impairment are enabled, through high quality mobility and independence training and support, to achieve the greatest possible independence and maximise their educational outcomes and life chances.
www.habilitationviuk.org.uk/habilitation-quality-standards-2nd-edition
Helping your teenager cope with the hospital
It is normal for anyone (at any age) to feel apprehensive about coming into hospital. Being unwell, needing treatment or spending any amount of time in hospital can be disruptive for young people and their families in addition to these usual demands.
This page from Great Ormond Street Hospital (GOSH) aims to give parent/carers a few ideas about how to approach and manage this.
Independent Parental Special Education Advice
Independent Parental Special Education Advice (known as IPSEA) is a registered charity (number 327691). IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs (SEN) and disabilities.
Advice & Support Services Network
The Information, Advice and Support Services Network (IASS Network) supports and promotes the work of Information, Advice and Support (IAS) Services across England. They are based at the Council for Disabled Children.
IAS Services have a duty to provide information, advice and support to disabled children and young people, and those with SEN, and their parents. They are a statutory service which mean there has to be one in every local authority.
www.councilfordisabledchildren.org.uk
The Maypole Project
The Maypole Project provide a lifeline of support for children with complex and life threatening illnesses and their whole family. They provide a range of support to parents from diagnosis through treatment and beyond and provide emotional support to the whole family including siblings and grandparents. Tel: 01689 889 889 [email protected] https://www.themaypoleproject.co.uk/
Prospect Parent Partnership
Parent partnership gives free information, advice and support to parents of children with Special Educational Needs enabling parents to make informed decisions.
RNIB Curriculum Framework for Children and Young People with Vision Impairment (CFVI)
The Curriculum Framework for Children and Young People with Vision Impairment (CFVI) has been developed through extensive consultation with people working in the field of vision impairment education, parents and young people across the UK to support children and young people with vision impairment. The aim is for all children and young people to access an appropriate and equitable education.
www.rnib.org.uk/professionals/education-professionals/cfvi
SENSE
Sense is a national charity that supports people who are deafblind, have sensory impairments or complex needs, to enjoy more independent lives.
T-KASH Transition Tools
The resources are designed to support young people, families, and healthcare professionals, to help everyone understand the transition from children to adult services and the things that are important to young people as they grow up.
These tools help to:
- Draw attention to the knowledge and skills young people may be able to develop to manage your healthcare, while having the best life possible.
- Prepare young people with identifying and coping with change at key points in your life, like moving schools, how and when to disclose your health condition or getting into the world of work.
- Support young people to plan for and cope with the eventual transfer/settling into adult services.
www.breaking-down-barriers.org.uk/t-kash-transition-tools
Transition to Adulthood in for parents/carers of children with a
learning disability
This free resource offers practical tips for building positive relationships with healthcare staff and helping young people feel more confident in medical settings.
www.cerebra.org.uk/wp-content/uploads/2022/11/transition-in-england-jul21.pdfwww.sense.org.uk
AFASIC
Afasic supports parents and carers with children and young people who have difficulties with listening, talking and understanding others.
AMAZE
Amaze is a charity that gives information, advice and support to parents and carers of children and young people with special educational needs and disabilities (SEND).
Council for Disabled Children (CDC)
The CDC aims to make a difference to the lives of disabled children and children with SEND by influencing Government policy, working with local agencies to translate policy into practice and producing guidance on issues affecting the lives of disabled children. The CDC have an online library of resources where Parents can find out more about disability policy and practice, it includes a selection of materials specifically written with parents in mind
https://councilfordisabledchildren.org.uk/resources-and-help/im-parent
DYSPRAXIA FOUNDATION
The Dyspraxia Foundation is a country-wide charity and is committed to making the teaching and medical professions more aware of dyspraxia and to spread understanding of how those who have the condition can be helped.
www.cdyspraxiafoundation.org.uk
I CAN
I CAN Help is a range of information services that provide help and advice to parents and practitioners about speech, language and communication. It includes a free call-back service with a speech and language therapist, Talking Point - the website dedicated to speech and language, and I CAN's assessment services.
IPSEA
IPSEA advises families whose children have all types of SEN/disability, including behavioural problems, communication difficulties, learning disabilities and autism. IPSEA often helps families before their child has even been diagnosed. IPSEA's legally based advice gives parents the confidence to exercise their rights. IPSEA’s advice is free and independent.
THE MAKATON CHARITY
The Makaton Charity exists to ensure that everyone living with learning or communication difficulties has the tools and resources they need to communicate
THE NATIONAL AUTISTIC SOCIETY
Are the leading UK charity for autistic people (including those with Asperger syndrome) and their families. They provide information, support and pioneering services, and campaign for a better world for autistic people.
RNIB
Most blind and partially sighted children are educated in mainstream schools, or in special schools that do not specialise in vision impairment. The RNIB provide information about how to support children's education, from the early years to transition into adulthood and life beyond school as well as guidance about how to secure the right support for your child in nursery and school through a process of assessment and specifically tailored support.
https://www.rnib.org.uk/information-everyday-living/education-and-learning
SOSSEN
A national charity that aims to help parents and carers of children with SEN to tackle the difficulties they face when battling for their children’s rights. Their service includes a telephone helpline and drop-in centres, they also provide information sheets and run regular workshops.
Special Needs Jungle
A Parent led organisation providing information and informed opinion about children and young people 0-25 years. Special Needs Jungle creates easy to understand resources, articles and information for parents and carers of children with special needs, disabilities and health conditions to help them navigate the special needs system more easily.
https://www.specialneedsjungle.com/
TALKING POINT
Talking Point is a website all about children’s speech, language and communication. It is designed for parents, people that work with children and children and young people themselves. It contains everything you need to know about supporting children’s speech and language development.
Thomas Pocklington Trust
A charity focused on supporting blind and partially sighted people in relation to Education, Employment and Engagement. They work with partners, support grant applications and implement activities and services to increase independence and improve the lives of blind and partially sighted people.
ACCESS CARD
The Access Card is printed with symbols to show your disability and to highlight the barriers you face and the reasonable adjustments you might need, so you don’t need to keep explaining. Based on your rights under the Equality Act and providers’ responsibilities, the card informs providers quickly and discreetly about the support you need and may gain you access to things like concessionary ticket prices and complex reasonable adjustments without having to go into loads of personal detail. The card costs £15 for three years.
ACTION FOR BLIND PEOPLE
Action has merged with RNIB. On 1 April 2017, Action for Blind People merged with RNIB. This allows them to help more blind and partially sighted people by combining their services, knowledge and expertise within one charity. Action’s vital work will continue through RNIB.
THE GUIDE DOGS FOR THE BLIND ASSOCIATION
Aim to provide people with sight loss with the support they need to be able to move around safely and confidently, to get out of their homes and be able to live life the way they choose. They are best known for achieving this through their world-famous guide dogs. I recent years they have extended their work to other areas to help people with sight loss tackle obstacles they face on a daily basis.
LOOK-UK
LOOK-UK supports young people and families living with vision impairment.
RNIB
The Royal National Institute of Blind People (RNIB) is the UK’s leading charity supporting blind and partially sighted people. They offer practical and emotional support to those that need them, so they can continue living life to the full.
RSBC
The Royal Society for Blind Children (RSBC) believes in a better life for blind children. Their mission is to make sure every single blind child has the self-belief and skills to fulfill the potential they’ve got. Through their services, they’ll learn new skills, make friends and experience moments that will give them the confidence to believe they can achieve.
SIGHT SUPPORT DERBYSHIRE
A charity providing services, support, advice and information to around 9,500 local people who are registered blind or partially sighted. Sight Support Derbyshire offer a range of support to adults and children, through a range of services, including: Hospital Services, Sight Loss Information Sessions, Low Vision Aid Services, Rehabilitation Services, Resource Centres, Sports and Leisure Activities, and Children and Young Peoples Services.
www.sightsupportderbyshire.org.uk
VICTA
VICTA supports children and young people who are blind or partially sighted and their families across the UK. If you are the parent of a blind or partially sighted child or young person or you are visually impaired yourself and under the age of 29 then VICTA can help.
ACTIVITY ALLIANCE – DISABILITY INCLUSION SPORT
Inclusive Gym search. Find Events and classes if you are looking for an activity in your area.
BLIND CRICKET ENGLAND & WALES
BCEW have been working in partnership with British Blind Sport and the England and Wales Cricket Board since 2006 to deliver competitive cricket for those who are blind or partially sighted, running national and international competitions.
BRITISH BLIND SPORTS
The work of the charity enables blind and partially sighted people to have the same opportunities as sighted people to access and enjoy sport and recreational activities in the UK.
BRITISH BLIND SPORT – ARCHERY
DISABILITY SPORT WALES
Disability Sport Wales provides over a million opportunities for disabled people to get involved in sport and physical activity.
DISABILITY SPORT FINDER
Find fun and engaging activities to suit all ages and abilities in your local area.
www.disabilitysportfinder.org.uk
ENGLAND ATHLETICS
Find an athletics club
FA
From grassroots to the elite game – take part in disability football.
Goalball UK
Goalball UK is the national governing body for the Paralympic sport of goalball in the United Kingdom. They are proud to be a registered charity, where their mission is to develop and promote the sport of goalball, creating opportunities for people with visual impairments to participate and compete at all levels.
Goalball is played on an indoor court that is 18m long and 9m wide. The court has tactile markings (string that is taped to the floor), which helps players determine where they are. All players wear eyeshades so that they are totally blindfolded.
PARASPORT
Identify which sport is right for you and where you can go to play it!
SCOPE
Useful links to sport
METRO BLIND SPORT
Metro is a London-based charity; our aim is to open doors to sport for all vision impaired people, regardless of age or sporting ability.
TENNIS FOUNDATION
Tennis Foundation is UK wide and is governing body for vi tennis. It sets out all the venues that can be located nearby.
ABILITYNET
AbilityNet is a UK charity that helps everyone, regardless of ability or age, to use digital technology. Their free online resources and a network of over 450 community-based volunteers help individuals with any disability to use all kinds of digital technology.
BE MY EYES
Be My Eyes connects blind and low-vision users who want sighted assistance with volunteers and companies anywhere in the world, through live video and artificial intelligence.
COPILOT
Microsoft Copilot is an AI-powered productivity tool developed by Microsoft. It serves as your everyday AI companion, helping you find information, create content, and enhance your work experiences.
Disability Answer Desk (DAD)
Disability Answer Desk is where customers with disabilities get support with Microsoft Office, Windows, and Xbox.
www.microsoft.com/en-us/accessibility/disability-answer-desk
ENTERPRISE DISABILITY ANSWER DESK
The enterprise Disability Answer Desk is a support resource for organisations that have questions about the accessibility of Microsoft products and product conformance with accessibility standards. The support team can help resolve issues relating to assistive technology and functionality of products for users with disabilities, as well as find conformance documentation.
www.support.microsoft.com/en-us/accessibility/enterprise-answer-desk
MICROSOFT LEARN
Microsoft Learn allows you to learn how to use Microsoft products and services through task-based, interactive learning. They have hundreds of free courses, in 23 different languages.
SEEING AI
Seeing AI is a free app that narrates the world around you. Designed with and for the blind and low vision community, this ongoing research project harnesses the power of AI to open up the visual world. Seeing AI assists with daily tasks from reading, to describing photos, to identifying products, and more. The app continues to evolve as we hear from the community and AI research advances.
RNIB (Royal National Institute for the Blind)
RNIB is a charity that offers support to blind and partially sighted people across the UK. They provide support and online guide for assistive aids and technology.
RENAISSANCE LEGAL
Specialises in working with families and carers of disabled and vulnerable individuals; helping them plan effectively for the future with Wills, Trusts, Powers of Attorney, Court of Protection applications and Inheritance Tax Planning. Renaissance Legal has an unrivalled reputation for their work in the disabled and vulnerable community. The growing team prides itself on truly understanding the unique needs of families and disabled individuals – all of whom are dealing with complex, often challenging lives, where it’s vital that they understand their options.