Our AGSD-UK 2022-2025 strategy is based on a listening exercise which identified the things community members felt would make the biggest difference to their lives with the condition.
Three main themes emerged and these, together with an underpinning goal, form the framework for our strategic goals.
Read about the themes and goals, then scroll down to find out about the planned outcome measures for each goal, along with plans for the activities needed to achieve them.
This strategy will help us generate income, monitor and demonstrate progress and focus all our activities and resources to make the biggest possible difference.
Can you help?
Involvement from across the community will be crucial in taking these plans forward. Please do get in touch with our CEO Val Buxton (val.buxton@agsd.org.uk) if you can spare just a little time to: further shape these initiatives, lend a hand (for example with peer support or with events), contribute fundraising ideas or activities, or help steer the organisation as one of the board of trustees.
We are looking forward to working with you to achieve our shared goals for everyone affected by GSDs.
Themes and Goals
Goal 1:
Your responses strongly underlined the importance of support and connections across the community and we are working to achieve this by ensuring AGSD-UK is promoted in clinical settings, so everyone knows about the support we have to offer, running regular community events, growing and developing our team of volunteers and strengthening our social media presence.
Goal 2:
Responses highlighted a range of areas where people wanted more information and opportunities to help them live well. We’ll be tackling this by updating and broadening our offer of information and therapeutic activities, as well as developing and launching a self-management programme to help people live positively with the condition. We will also be looking to roll out a new community support fund to help with access to therapy, respite, and equipment for those in greatest need.
Goal 3:
Speeding access to diagnosis and better treatments and improving understanding among clinicians were the particular priorities people expressed here. We will work towards this by strengthening evidence around the condition to influence policy, practice, and the roll out of new treatments and approaches, working with others to amplify our voice. We will also be supporting professionals to collaborate and learn from each other, along with promoting research opportunities and understanding.
Underpinning goal:
In addition to our three main goals, we have a final underpinning goal about making sure we are a well-run and effective organisation, with the resources we need to deliver the support and services people want to see.
Planned activities to achieve our goals
Goal 1:
SUPPORT ACROSS THE COMMUNITY
Everyone affected will be connected to an active and supportive GSD community.
Activities to achieve goal
- Take forward a systematic outreach programme to ensure all relevant clinical settings across the UK understand AGSD-UK’s offer and signpost to us.
- Develop a proactive engagement and support strategy for all those in touch with the charity.
- Provide a training, support, recognition and succession programme for volunteers.
- Deliver a programme of community events, on and off line, tailored to the needs of different groups, including children, teens, parents and others who are underserved.
- Build sustained engagement through social media, scoping the development of a community support forum hosted on the AGSD-UK website.
Outcome measures
- Increasing proportion of people affected report connection to peer support.
- Sustained growth in membership/registrations and volunteers.
Goal 2:
HELP WITH LIVING WELL
People with any GSD will be offered the information and activities they need to live well with the condition.
Activities to achieve goal
- Develop an on-line self- management programme, supporting people to live positively with any GSD.
- Establish a community support fund, facilitating access to respite, therapy and equipment for those in immediate need.
- Review and update all AGSD-UK information in line with best available evidence, working with people affected and clinical experts to address any gaps and ensure relevance, accessibility and inclusivity.
- Expand our offer of appropriate therapeutic activities on and off-line.
Outcome measures
- >80% of people engaging with our information and therapeutic activities report positive impact on living well.
- Information is available for every GSD and is in line with Information Standard principles.
Goal 3:
BETTER TREATMENTS AND SERVICE ACCESS
The community will experience improved management, treatment options and service access.
Activities to achieve goal
- Gather evidence on quality of life issues for people with all GSDs to underpin our influencing work and shape our information and support offer.
- Bring together GSD professionals’ networks to facilitate shared learning and quality improvement, coordinating meetings and educational activities and taking forward the development and auditing of consensus guidelines on priority topics.
- Maximise the reach and impact of our advocacy services through close working with specialist teams and better integration with clinics on and offline, learning from service user feedback and providing relevant training.
- Promote understanding of research and clinical trials along with opportunities to shape these and for participation among people affected.
- Work with charity partners to influence relevant policy, focussing on opportunities to speed diagnosis and access to new treatments.
Outcome measures
- Increasing levels of satisfaction with management and treatment options and improved diagnosis experience.
- >80% of care and benefits advisor service users report positive impact on access to the support they need.
Underpinning goal:
STRONG AND EFFECTIVE ORGANISATION
AGSD-UK will grow sustainably, with robust governance, to increase our impact.
Activities to achieve goal
This goal will be delivered though effective participation, better communications, a robust case for support, and benchmarking against recognised quality standards, to drive continuous improvement in our governance and activities.
Outcome measures
- Year on year growth in income.
- Sustained progress against sector excellence standards (Trusted Charity Mark).