Your new Lupus UK Strategy
One Mission, Five Aims & 10 Year Goals
Your new Lupus UK Strategy – 2025
As we started to plan for this amazing milestone celebration this time last year, we thought it would be an important time to stop, take stock and open a conversation with the whole lupus community about what it is you want as individuals and from us as the national patient organisation for people living with lupus.
Below we share how we went about this, what we heard and your new Lupus UK Strategy.
Our mission remains the same – to tirelessly support people living with lupus to live full and active lives. So does our commitment to honouring our roots in the community and to continue to be embedded in it and there for all.
What we did
We set out to find the answers to these four key questions through a mixture of written surveys, focus groups, and one-to-one conversations.
- What do people living with lupus most want and need to live full and active lives?
- What is Lupus UK’s distinctive role in this?
- Who is the community focus for each area of our work?
- How can Lupus UK most effectively meet the identified needs of our community?
We had fantastic support for this process and we would like to thank again everyone who took part. We had 540 responses to our Community Survey, held five focus groups – one for each nation and one general one – and had a multitude of conversations and meetings with individuals, partner organisations and healthcare professionals and researchers. We were also very aware of those voices that we did not hear from, which were often from parts of our community often under-served for multiple reasons including age, gender, and ethnicity.
What we heard
We heard very clearly that you wanted Lupus UK to drive change, raise awareness and broaden our community reach.
We heard:
- The need to play our part in ensuring faster diagnosis and better access to healthcare at times of need.
- The need for more research into lupus and lupus treatments and the need to help ensure there is better access for all to those treatments when they arrive.
- As an organisation we need to do better to make sure we are reaching the whole of the community.
- There is a really important role for us in helping to break down barriers by raising awareness and building understanding of what it is like to live with a chronic condition. We need to raise awareness for the public in general and specifically in the education, employment, and benefits systems.
Your new Lupus UK Strategy
So, from these foundations, we have developed this strategy below. It is underpinned by a commitment to work across all four nations of the UK, to develop support across the full life-course and for under-served communities.
We hope you feel these aims and goals reflect what we have heard and the ambition that you wanted us to have. These goals are ambitious and we will need to work in partnership with the community, with other organisations and with individuals to achieve them. We have also designed this to be a living strategy with the 10-year goals developing as we begin work on them.
5 Aims
AIM 1: The healthcare system works for everyone living with lupus across the UK
AIM 2: World-leading treatments are available and accessible to all
AIM 3: Everyone impacted by lupus can find a place in Lupus UK
AIM 4: Everyone in the UK knows and understands what lupus is
AIM 5: Lupus UK is a sustainable organisation
10-Year Goals
AIM 1: The healthcare system works for everyone living with lupus across the UK
1.1: Time to diagnosis reduced to 1 year.
1.2: Access to joined-up, multi-disciplinary, multi-specialist holistic care is increased across all 4 nations.
1.3: Easy & rapid access to care at times of flare is increased across all 4 nations.
1.4: All relevant healthcare professionals (HCPs) have the knowledge and skills needed to deliver diagnosis, monitoring, and care.
1.5: People living with lupus have the health information they need to feel empowered to self-advocate at critical points in their lupus journey.
AIM 2: World leading treatments are available and accessible to all
2.1: Research activity into lupus in the UK is significantly increased.
2.2: Representative cohorts of the population living with lupus are willing and able to take part in all trials in the UK.
2.3: Regulatory systems in the UK appropriately assess evidence-based treatments for lupus.
2.4: There is a pathway to access evidence-based treatments regardless of where you live in the UK.
AIM 3: Everyone impacted by lupus can find a place in Lupus UK
3.1: Lupus UK’s community offer is expanded to include projects specifically designed to support and engage those who are under-served through ethnicity, geography, age or gender.
AIM 4: Everyone in the UK knows and understands what lupus is
4.1: Name recognition of lupus and understanding of what lupus is increased in the general public.
4.2: Employers, education providers and the benefits system understand the impact of lupus on people in work and education.
AIM 5: Lupus UK is a sustainable organisation
5.1: Lupus UK will continually grow a strong active base of community support (fundraising) across the UK.
5.2: Lupus UK will have a sustainable income generation model.
5.3: Lupus UK is a great place to work and volunteer, with a work and volunteer force representative of the lupus population in the UK.