rare disease- a way forward?

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.


8 thoughts on “rare disease- a way forward?

  1. If the so called ‘Help’ material is complicated and difficult to fathom, then people will give up trying and maybe that is what the Government want.
    The other problem is that very few have a text book body.

  2. It seems like bureaucrats work the same the world over, making empty gestures to respond to groups when really the entire thing is designed to protect the people its supposed to be forcing to give help.

  3. I really struggled with my response and finally got it away at 2.30am this morning. Wanted to get it finished and off rather than face another day with it. If ever I needed a brandy …… and there was none. Relieved to get it finished and say my piece; I just wonder will anyone on the other end pay attention to anything I have written. Do like the video though.

  4. Governments are not immune to ego-tripping – wanting people to like them, to look good, even feel good themselves. You are spot-on – if it’s jargon, vaguely general, not able to hit the spot for those who know, then it’s not worth the paper it’s printed on/ downloaded to because even if they ‘mean well’ it will be as Andra says above designed for someone other than the people who need it. Trouble is it can be even harder to challenge this destructive do-gooding than straight opposition. [Egos get so defensive if they are caught out]. Good for you – only way is keep at it. The link you give helps – tell everyone there is a consultation response form on there. I’ll reply too, can leave blanks where I am a don’t know, but someone will be counting the number of responses, and might start to think it matters.

  5. Very moving film, Fiona. What a shame those spearheading the national move towards a cohesive approach are not incisive. For those who care deeply about the issues faced by those with rare diseases, like yourself, it must be deeply frustrating.

  6. Very moving video, Fiona. I have a friend with a very rare disease, involved right now in an experimental stem cell transplant. We won’t know for awhile how it is going to go for him, but you are so right in describing the cycle of difficulty in advocating for one’s own health needs in bureaucracy that appears to be designed to be as convoluted as possible. How anyone can begin to unravel those systems from places of extreme physical and emotional weakness is maddening. I’m so delighted to know you…I admire the work and advocacy role you play. I really do. Debra

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