How can the NHS better serve you?
Medics for Rare Disease has been tasked with making recommendations to the Department of Health and Social Care about ‘healthcare professional awareness’ of rare disease. We need your input and your ideas!
What?
Medics for Rare Disease has a vision of healthcare equity for everyone. We know that we cannot achieve this alone and system change is required for this vision to ever see the light of day. It is with this vision in mind that we have been working with the Department of Health and Social Care since 2018. And now we can invite you to be a part of this change.
On 23rd June we are hosting a workshop in order to develop recommendations for the DoHSC about ‘healthcare professional awareness of rare disease’.
We will be asking…
What is healthcare professional awareness?
How do we implement it throughout the NHS?
How do we measure it?
The recommendations produced are an important step towards shaping the health service into an environment that is trusted to provide excellent care for ALL people impacted by rare conditions.
Can you help?
We have enough evidence of the challenges people face in healthcare when they are impacted by social and health inequalities. We know that if someone has a rare condition the odds of receiving excellent healthcare are stacked against them. And we know that the intersectional relationships between different protected characteristics can result in inequitable care.
Now we need to do something about it. The Rare Community is resilient and resourceful. Decades of being overlooked drives the creativity needed for pioneering grassroots solutions. If you are a ‘do-er’ or someone who can think of small interventions that build into a big dream…we need YOU!
Details
Monday 23rd June, 09:30 Registration, 1000-1600 meeting
Edgbaston Park Hotel, Birmingham
Limited spaces – book now via our event page!
Background
The UK Rare Diseases Framework was published in January 2021 following consultation by Baroness Nicola Blackwood in 2018. The purpose of the Independent Advisory Group (IAG2) is to present recommendations about Priority 2 to The Framework Forum of the Department of Health and Social Care.
The Framework outlines 4 key Priorities for improving the lives of people living with a rare condition in the UK:
- Faster diagnosis
- Increase healthcare professional awareness
- Better coordination of care
- Access to specialist care and treatment
Organising Group
The meeting is being funded and organised by Medics for Rare Disease. Emotive is supporting logistics and chairing the IAG2. Medics for Rare Disease is a member of the Department of Health and Social Care’s Framework Forum. IAG2 is one of three authorised Independent Advisory Groups that report to this Forum.
