no one gets left behind

“The UK Strategy aims to ensure that no one gets left behind just because they have a rare disease. We want to put patients’ needs first.”

My heart is lifted as I read those words. A policy document from government that I can agree with. An opportunity to make a difference. I want to be at Westminster today, cheering and waving for the launch of the UK rare disease strategy.

PSP: I hate it

Colleagues from the rare disease partnership travelled to Whitehall, made conference calls, drafted papers and lobbied hard. Patients and practitioners had input to this strategy. Crucially, the same people have key roles in developing the implementation plans for each of the 4 UK countries. Those plans will be launched on rare disease day, 28 February 2014. (You will read lots more about that event, never fear.)

The key areas of the strategy are:

  • empowering those affected by rare disease
  • identifying and preventing rare disease
  • diagnosis and early intervention
  • coordination of care
  • research

Sensible things. We can work on these.

We are stronger together.



4 thoughts on “no one gets left behind

  1. I do so hope it is true – the ’empowering’ might mean some reversals in general welfare policies? But you are right, work, more work, keep going and we get somewhere better together (I wish that last phrase had not been hijacked by the keep Scotland in the union lot) Well done to everyone!

  2. When it comes to important matters, it is remarkable what can get done. Luckily countries are not just ran by politicians, people, I, lose sight of this, A country remains functioning even when one governing party is replaced with another. Departments are made up with people who actually think with a heart for the most part, unlike politicians with questionable intent: whom have a bad habit of watering down something meaningful and purposeful. If your hopeful, it must be going in the right direction. If the standing guard of bureaucracy have figured it out and accepted then that is good and more lasting then just persuading an elected official -yes?

    1. One of the many ways in which our teeny charity (NI Rare Disease Partnership) has been fortunate is that Chairperson is a former bureaucrat- she understands how the system works & the importance of relationship building. She didn’t work in health policy, so there has still been learning, but her experience of working within government has been invaluable.

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