Wards in rare disease burden

RESEARCH: A lab medic PATIENTS with rare diseases have cost NHS England £3.4billion in the past 10 years.

Although they made up less than 1% of the hospital population, they cost at least twice as much per patient.

It takes an average of

5.6 years, eight clinicians and three misdiagnoses before the correct rare disease is identified, new figures reveal.

The figures were collated using NHS statistics on more than 60million patients for health firm Mendelian.

Researchers at Imperial College Health Partners discovered an average difference of more than

£7,000 per patient.

It is estimated rare diseases affect 400m people globally, while about one in

17 people will develop one during their lives.

Peter Fish of Mendelian said: “The ‘diagnostic odyssey’ for rare diseases is often fraught with emotional turmoil and suboptimal care for patients, frustration for clinicians and is also extremely costly.

“This new research will hopefully help us along the path to effective solutions.”

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