BBS UK Membership Audit

In 2021, we conducted a membership audit to better understand the impact of BBS and to inform our work over the coming years.
Please click here to access the full data summary

Who completed the audit?

  • 50% of people are the parent of someone diagnosed with BBS
  • 37% completed it as a person themselves diagnosed with BBS 
  • 13% completed it on behalf of an adult diagnosed with BBS 
  • 80% have a genetic diagnosis
  • 20% have a clinical diagnosis
  • 14% of respondents are employed full or part-time
  • 10% undertake voluntary work
  • 42% of respondents said that BBS affects their/their child’s life mildly to moderately
  • 57% stated that the impact was severe to very severe. 

In terms of the views that were represented:

  • 38% are under 18 
  • 38% are aged 18-34 
  • 21% are aged 35-54 
  • 3% are aged 55+ 
  • 58% of respondents are registered as Severely Sight Impaired 
  • 19% are registered as Sight Impaired 
  • 22% have sight loss that does not meet the criteria 
  • 1% have chosen not to be registered 

In terms of how long ago the person was diagnosed with BBS:

  • 4% were within the last 12 months 
  • 23% between 1 and 5 years ago 
  • 27% between 5 and 10 years ago 
  • 46% were diagnosed over 10 years ago 

Respondents experience the following symptoms either moderately or severely:

  • Obesity 70% 
  • Learning difficulties 43% 
  • Developmental delay 39% 
  • Anxiety 37% 
  • Low mood/depression 36% 
  • Extreme tiredness/fatigue 34% 
  • Speech and language difficulties 32% 
  • Urinary tract issues 23% 
  • Autistic spectrum disorder 28% 
  • Issues with digestive system 24% 
  • Kidney abnormalities 16% 
  • Diabetes 9% 

Participants are in receipt of the following benefits:

  • Personal Independence Payment 53% 
  • Disability Living Allowance 44% 
  • Employment Support Allowance 22% 
  • Direct Payments 18% 
  • Carers Allowance 16%

Respondents outlined the following emotional and psychological impacts of having BBS:

  • Anxiety 78% 
  • Loss of confidence 65% 
  • Stress 63% 
  • Fear 52% 
  • Anger 43%

Of the following services, respondents outlined the ones they had NOT accessed but would like to:

  • Counselling 43% 
  • Genetic counselling 34% 
  • Support with securing a volunteering placement 31% 
  • Physiotherapy 26% 
  • Support with obtaining employment 24%

Respondents have engaged with BBS UK in the following ways:

  • 75% have accessed information and/or support  
  • 73% are members 
  • 60% attend events 
  • 35% donate or raise funds

People agreed with the following statements:

  • BBS UK works hard to improve the lives of those with BBS 80% 
  • BBS UK is focussed on the wishes of its members and their everyday needs 76% 
  • BBS UK is ambitious on behalf of people affected by the syndrome 73% 
  • I trust BBS UK to do what it says it will do 72% 
  • People with BBS have a say in what BBS UK does 58%

Respondents felt that BBS UK had made the following differences to them:

  • I understand the condition more fully 80% 
  • I am better informed about research into the condition 78% 
  • I have greater awareness of the support available 59% 
  • I am more confident in managing the challenges of my / my child's condition including my/ my child's sight loss 48% 
  • I am more able to lead a fulfilling life 26%

People rated the following BBS UK services as good or excellent:

  • Newsletters 100% 
  • Website 100% 
  • Annual conference 88% 
  • Information booklets 100% 
  • Support with fundraising 92% 
  • Information for children and young people 100% 
  • General contact and support 95%

Who completed the audit?

  • Updates on treatment and research 87% 
  • Local/regional groups 72% 
  • Social opportunities and activities 69% 
  • Information on assistive technologies 66% 
  • Managing everyday life with BBS 66% 
  • Support with exercise and with maintaining a healthy diet and lifestyle 50%