My head has been full. Anyone who follows me on twitter will have been fed up with the rambling. I’ve been struggling with Consultation on the UK Plan for Rare Diseases. Sounds exciting, eh?
Well, it ought to be. Finally, the UK government are doing something about their commitment to develop a national strategy for rare diseases- hurrah! A huge opportunity to shape services and improve lives. So why does it feel like a whole lot of nothing? The document is vague, medically focused and only available to download. So much for reaching out to already isolated groups of people and asking for what they need.
I’ve spent days and days trying to grasp on to something in the document that made sense, and in the end decided to write about what would have made things easier for my mum, and tried to connect that to the paper. Days, I tell you. Brain fog is a pain, but others without the fog have had similar issues.
People who are caring for a loved one with a rare disease. People who may have to attend a dozen appointments a week. People who are struggling. People who have young children or elderly relatives to care for. People with their own health issues. People who don’t have the luxury of days to spend trying to make sense of it all. These are the people who need the chance to use their experience to influence policy for the future.
One would nearly think that the government don’t really want to consult with people living with rare disease. They couldn’t really be just going through the motions, could they? Time for us all to shout a bit louder and make sure the policy makers don’t get the chance to ignore what we have to say. We are stronger together.