People with rare diseases to benefit from “faster diagnosis and access to treatment”

Millions of people with rare and complex diseases will get faster access to treatment, the Government has announced.

It comes after the publication of England’s first ever Rare Disease Action Plan.

According to the report, more than 3.5 million people in the UK are currently affected by around 7,000 rare diseases, such as muscular dystrophy or Huntington’s disease.

But the latest research suggests that those with undiagnosed complex conditions are finding it difficult to find specialist healthcare professionals with the relevant training to identify rare diseases.

It means that people can go through multiple referrals and appointments before a diagnosis can be made and treatment can begin.

The Action plan – written in collaboration with NHS England and NHS Improvement, the National Institute for Health and Care Excellence, Health Education England, Genomics England, the National Institute for Health Research, NHS Digital and the Medical Research Council – sets out how the healthcare system could be improved.

This includes introducing new technology and digital tools that will support faster diagnosis, and improvements to virtual consultations will make it easier for patients to see multiple specialists at once.

Commenting on the proposals, Health and Social Care Secretary, Sajid Javid, said: “This action plan will speed up diagnoses and care and allow our fantastic workforce to better support patients, by drawing upon the UK’s world-leading science and technology.

“I am committed to levelling up our health system so that everyone, regardless of their condition, can receive treatment that is tailored to their needs.”

Learn more here.

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