Are you affected by a rare condition and from a diverse and marginalised community?
If so, please come and join us for our virtual event, to help us understand how health inequalities affect you. We warmly welcome people diagnosed with a rare condition, family members, carers, and charity representatives to come along and offer support. We want the conversation to be as open, accessible and as inclusive as possible.
When will the event take place?
The virtual event will take place on the 22nd November 2021, 12:30 – 14:30 on Zoom
What will we discuss?
Health inequalities are unfair and avoidable differences in health between different groups of people. Breaking Down Barriers and the Department of Health and Social Care are working in partnership to understand more about the health inequalities experienced by people from diverse and marginalised communities who are also affected by a rare condition. We want to listen and learn about people’s lived experiences and identify ways that we can address health inequalities throughout new policies for people with rare conditions that are being developed now.
Here is a list of some of the things we would like to discuss:
- Relationships between patients, families, carers, and service providers
- Barriers – what are the specific barriers you face?
- Past experiences and developing trust
- Education, knowledge and understanding
- Access to services and support
- Does where you live have an impact on the services and support you receive?
- Do those who shout the loudest really get access to better services and support?
- Individual and family approaches
- How do we create a fairer system where the needs of our diverse community are met?
We welcome your thoughts on further topics you would like to discuss or areas that matter most to you.
We will then share some of the draft policies that have been developed for England and gather feedback.
How to get involved
If you would like to join us, please email Kerry.leeson@alstrom.org.uk or call 077161 35940.
We will then send you joining instructions. We can also arrange a 1-1 chat before the event if that is helpful. Please let us know if there is anything, we can do to support you to take part.
Further Information
Why is this event important?
Here is some further information about the policies that are being developed now for people with rare conditions.
The UK Rare Diseases Framework
The UK Rare Diseases Framework was published in January 2021 setting out a national vision on how the UK will aim to improve the lives of people living with rare conditions. The Framework was developed based on the findings from the National Conversation survey which was launched by Baroness Blackwood in November 2019. 6,293 people responded to the survey, including over 5,000 patients, families and patient organisation representatives.
There are 4 key priorities and 5 underpinning themes and each nation of the UK are developing an Action Plan to show how these priorities will be met.
4 Key Priorities
- helping patients get a final diagnosis faster
- increasing awareness of rare diseases among healthcare professionals
- better coordination of care
- improving access to specialist care, treatments and drugs
5 Underpinning Themes
- patient voice
- national and international collaboration
- pioneering research
- digital, data and technology
- wider policy alignment
Patient Voice is a crucial part of the Framework and the Department of Health and Social Care have been consulting with the rare disease community as they develop the Action Plan for England. The Framework also highlights:
“any commitments will be developed in consultation with patient representatives, giving particular consideration to ensuring representation from those whose voices can often go unheard, including patients from black, Asian and minority ethnic (BAME) or disadvantaged backgrounds.”*
We look forward to speaking with you!
Please get in touch if you would like this information in an alternative format.
References* The UK Rare Diseases Framework – GOV.UK (www.gov.uk)
