How will the project be delivered?
Breaking Down Barriers is a three year project and all interested patient organisations and support groups who provide support to families living with a genetic condition are invited to join.
There are two specific ways to be involved
- organisations who would simply like to share in the learning from this project and be kept informed of new developments can register their details to receive regular updates.
- annual grants of £5,000 are available to organisations who would like to be more actively involved and deliver specific pieces of work to help improve the services they offer to individuals and families.
We will work closely with each organisation in receipt of funds to examine their current practices and highlight any barriers they feel are in place. We will be arranging workshops and will be available to offer advice and support throughout the duration of the project. We will regularly share information and link to additional resources that may prove beneficial to individual organisations.
How will individual organisations benefit from the project?
Due to the diversity of the different patient organisations and support groups taking part and the individual projects they develop, outcomes are likely to differ for each organisation. We will work with each group to set, monitor and evaluate individual outcomes but as a whole we predict that the following outcomes below will be achievable to those taking part:
- Patient organisations and support groups will feel better equipped to support diverse communities
- Advocacy services for people who are not able to express their needs directly
- Improvement in services as current practices will improve and become fully integrated and inclusive
- Families will report that they feel better supported
- Educated patient groups who can manage their disease effectively and lead a better quality of life
- Empowered patient groups who know of the reproductive options available to them and the consequence of carrier status
- Increased awareness of cultural issues amongst patient organisations, support groups and medical professionals
- The development of new inclusive and diverse patient organisations and support groups
- Support services available to the whole family
- Increased participation in genetic counselling and increased diagnosis
- Improved general awareness of genetic conditions
- Comprehensive guidelines produced to help break down the barriers experienced by families which can be used throughout a range of different services
Start of the project
The project has been funded since January 2016 with the first organisations joining from March 2016.
The project has secured funding to enable the project to progress further and as of February 2020, we now have 26 organisations involved.
Workshop 1 in 2016
Workshop 1 took place in July 2016 in London, UK and provided an opportunity for organisations to join together to:
- share examples of best practice
- learn from the experience of the Asian Mentoring Scheme
- explore current and potential future barriers
- engage with speakers working in the field.
Following the first workshop, each organisation was invited to develop an action plan and discuss
Workshop 2 in 2017
Workshop 2 took place in September 2017 in Birmingham, UK and provided an opportunity for organisations to join together to:
- discuss individual projects and demonstrate any improvements made
- learn from the experiences of others
- engage with speakers working in the field
- have the opportunity to
- review initial findings from the overall project
- plan ahead for additional funding
From November 2017 onwards, those organisations who received funding in year one will be invited to submit a second action plan. An additional £5,000 will be awarded in year two to those organisations who are able to demonstrate continuous improvement.
New organisations are also invited to join the project and apply for funding.
Workshops in 2018
Following positive feedback from the previous two workshops, it has been decided that an additional workshop will be held in May 2018 to review year 2 projects and to provide existing and new organisations with the opportunity to come together to share learning and discuss challenges and progress.
Workshops in 2018
Following positive feedback from the previous two workshops, it was decided that an additional workshop would be held in May 2018 to review year 2 projects. This was to provide existing and new organisations with the opportunity to come together to share learning and discuss challenges and progress.
A further workshop took place in September 2018 to review these findings and showcase all developments and progress made.
Jane Young from the Sylvia Adams Charitable Trust attended and also invited representatives from other funding organisations to offer advice and support to each patient organisation and support group on how best to complete funding applications to aid any future work.
Breaking Down Barriers is externally monitored and evaluated by Oscar Bingham from Charity Fundraising Ltd. Oscar will provide support to organisations throughout the project. An interim evaluation report will be produced in April 2018 with a full report published in April 2019.
Workshops in 2019
Workshops were held in December 2019 to bring the organisations together to share their successes and challenges.
The future for Breaking Down Barriers
Breaking Down Barriers was originally planned as a three-year project. However, due to the achievements made so far, we are now aiming to sustain the project beyond 2019.
Awareness raising campaign
We will be raising awareness of genetic conditions throughout the duration of the project and organisations may be asked to take part in media campaigns. We will also be working with communities and specific groups to raise awareness of the issues affecting people living with genetic conditions and exploring ways to break down barriers.