The UK Strategy aims to ensure no one gets left behind just because they have a rare disease. We want to put the patient’s needs first. To do this, we will bring together the talent, skills and professionalism of all relevant sectors.This will bring real, positive change in how we deal with rare diseases and how we help people with complex conditions (Quote from The UK Strategy for Rare Disease)
This sounds great news for people in the UK who have a rare disease or being diagnosed with a rare disease at last things are going to change for them and it states that the Strategy will bring real positive change in how they deal with rare diseases and how they will help people with complex conditions it also states states that all four countries in the United Kingdom will have their own Strategy to deal with patients with rare disease’s and how to help people with complex conditions.
It States that the strategy does not just focus on patient services. It also covers scientific research, which is important for improving our understanding , diagnosis and treatment of a rare disease. The UK has a vibrant life sciences sector, which means they could be at the forefront in the development of new technology that improves services and opportunities for people with rare diseases (quote from The Strategy For Rare Disease)
The UK there are many examples of excellence and world-class services for people with rare diseases. However they want to see further improvement across the whole patient journey:the patient’s experience from their first contact with the NHS through to reaching a diagnosis and onto managing their condition.
Northern Ireland like others have to publish their strategy on rare diseases and there diagnosis my concerns about this are is Northern Ireland Health Service ready to carry out a strategy on rare disease I will be very intre4sted to read this document when it is published I have many fears in regard to the Northern Ireland Strategy