01709210151 / 07716135940 kerry.leeson@alstrom.org.uk

Breaking Down Barriers Workshop 2
‘Working Together to Develop Supportive and Inclusive Services’

Presentations you can download – please click on each download button.

Day 1
Plough & Harrow Hotel, 135 Hagley Road, Birmingham, B16 8LS
Wednesday 13th September 2017

Lesley Harrison
Patient Support Manager

The AKU Society

Charlotte Clark, Communities Manager
Mya Chowdry, Helpline Manager

Ehlers-Danlos Syndrome UK

Katrina Sarig, Exec Director 

Jnetics

Miriam Ingram
Digital Communications and Support Officer

Swan UK

Jody Blake
Wolfram Syndrome Family Coordinator

WellChild

Tonia Hymers
Service Manager 

Bardet-Biedl Syndrome UK

Bill Crowder, Head of Advisory Service
Poppy Hill, Specialist HD Advisor 

Huntington's Disease Association

Linda Chic
BDB Officer & Helpline

Sickle Cell Society

Louise Metcalfe, Project Leader
Steve Neal, Families Officer

Niemann-Pick UK

Breaking Down Barriers Workshop

‘Working Together to Develop Supportive and Inclusive Services’

Day 2 
Plough & Harrow Hotel, 135 Hagley Road, Birmingham, B16 8LS
Thursday 14th September 2017

Saima Ahmed, Project Lead, Firvale Community Hub

Community Genetic Literacy Project

Dr Denise Williams, Consultant Clinical Geneticist, Birmingham Women’s Hospital

Enhanced Genetics Services Project (EGSP)

Dr Aamra Darr, Genetics Communication Diversity

The Challenge of Developing Genetic Information

Dr Peter Corry, Retired Paediatrician, Born in Bradford

The Born in Bradford Project

Rhiannon Evans-Young, Director & Co-Founder, Crest Digital PR Agency

Engaging With The Media

During the workshop, delegates engaged in group discussions and developed top tips, useful resources and highlighted some of the barriers that may impact on their work.

Barriers 

  • Language
  • Staff changes
  • Developing working groups
  • Difficulty in accessing places of worship
  • Pre-implantation Genetic Diagnosis – cost of the treatment and the exclusion criteria involved
  • Engaging with young adults
  • Developing an effective database
  • Funding
  • Culturally appropriate support
  • Translating information – difficult to find a good company and then to check for accuracy
  • Identifying people within an organisation
  • Lack of support from GP’s and Regional Genetic Services
  • Time – fitting in this work alongside everything else
  • Engaging with similar organisations in other countries – not replying to emails
  • Understanding of complex information
  • Engaging with South Asian communities
  • Finding appropriate contacts
  • Recruiting suitable volunteers
  • Overcoming personal concerns about approaching places of worship
  • Lack of knowledge about different religions and culture
  • Lack of knowledge about local resources, services and support – particularly so for national charities
  • Closure of local resource centres
  • Making initial contact with families – how to do this when you are not sure if they can speak or read English
  • Copyrighting images
  • Stigma and keeping conditions hidden within families
  • Families not wanting to engage with support groups
  • Small numbers of families from South Asian communities on databases to start with so it is difficult to carry out consultations and check translations

Useful Resources

Awareness Raising

  • Social Media (approach carefully and this will not work for all)
  • National or local events (i.e. Rare Disease Day)
  • Informal Networks (shops, salons, community centres, taxi ranks)
  • Community Leaders (Mosques, Sikh Temples)
  • East London Mosque – open days
  • Bridal Magazines
  • BBC Asian Network (plus other radio stations)
  • Channel 44 (British Asian news channel that covers community events)
  • Brit Asia TV / British Muslims
  • Google Analytics
  • QR Codes – qr-code-generator.com

Translation

  • Ask families to review translated materials as they are the target audience
  • ubiQus Translations – ubiqus.co.uk
  • Browsealoud – texthelp.com/en-gb/products/browsealoud/
  • Google Translate
  • Please remember to check the accuracy of translated materials with any translation company

 Support

East London Genes and Health – http://www.genesandhealth.org/

Key Information

  • Work with community workers
  • Work with health champions / health development workers
  • Use local events and activities to raise awareness
  • Plan culturally appropriate events
  • Word of mouth is very important
  • Provide training for other professionals
  • Develop a check list for translators
  • Involve your target audience from the very beginning
  • Be creative when developing information
  • View translation in its wider context
  • Be organisaed and clear with translation companies
  • Do not underestimate the importance of communication
  • If you develop a translated leaflet, make sure you also have an English version
  • Keep the bigger picture in mind (i.e. the overall aims of Breaking Down Barriers)
  • Conduct prior research and predict the impact
  • Provide accurate information
  • Work together with medical professionals
  • Consider family meetings in the community (home visits are not always appropriate)
  • Consider Male/Female only groups
  • Consider Eid parties and seasonal events
  • Link with local and regional Genetic Departments
  • Link with Centres of Excellence / Rare Disease Centres
  • Make use of audio materials
  • Do not presume that people do not speak or understand English
  • Although a person may speak Urdu, do not presume that they can also read and write in Urdu
  • Access to places of worship – show respect i.e. use a head scarf and remove shoes
  • There may be separate male and female notice boards in places of worship
  • It is useful to record ethnicity and location on patient databases
  • Endorsements by religious/community leaders
  • Media support – try to engage and develop relationships
  • Develop patient representatives / peer mentors
  • Include family stories / case studies
  • Using the term ‘cousin marriage’ may alienate some people
  • Consider using the term ‘related by blood’