Exclusive: People with rare conditions 'deprioritised' by trusts during pandemic

In a survey of people living with rare diseases in the UK, two thirds of respondents said the interruption to routine care has been “probably or definitely detrimental to their wellbeing”. Twenty per cent said the changes had “probably or definitely been life threatening”. Others reported respite care had been “slashed” and hospital care “severely disrupted”.

There have been increasing concerns about the impact of coronavirus on those people with long-term health conditions, of which rare diseases are one aspect, as specialist capacity and staff were diverted to deal with coronavirus. The Health Foundation has previously reported that access to health services for people with pre-existing conditions was 20 per cent lower during the covid-19 peak between March and May.

The report by Genetic Alliance UK, an alliance of 200 rare disease charities, said: “There is evidence that some NHS trusts have effectively deprioritised patients with rare conditions as resources have been diverted to patients who have contracted covid-19”.

These resources include antibacterial ventilator filters, which would normally be provided to individuals with progressive muscle-wasting conditions who are reliant on ventilators part or full time.

Forty per cent of survey respondents said their specialist hospital units had been closed, and a further 16 per cent said necessary equipment for their hospital care was absent.

The impact on community care has been similarly stark, with half of respondents stating the lack of personal protective equipment has been the primary reason they have lost some or all access to home care during the pandemic.

The report added that “support for people living with rare conditions has been slashed”, with help from family, psychological services, home care, respite care and day care “reduced or taken away”, [with people] “placed under immense pressure” as a result.

Genetic Alliance UK has called for a “clear and short timetable” for the reintroduction of rare disease NHS services as well as the publication of the delayed UK Framework for Rare Diseases by the end of 2020, which includes how covid has affected the care offered to those with rare diseases.

It also calls for better PPE provision, access to covid testing and for stronger measures from the government to allow those shielding to continue to do so once the programme officially ends at the start of August.

The report said: “The sudden and, for many, devastating changes to our community’s lives came quickly and out of necessity. The relaxation of lockdown and changes to healthcare can be performed with greater consideration and consultation. It is crucial that further shocks to our community be avoided to prevent additional serious impact to people living with rare conditions”.

A Department of Health and Social Care spokeswoman said: “We understand how challenging this period is, especially for those with rare diseases, and we are doing everything we can to support patients, led by clinical advice.

”Even as we fight this unprecedented pandemic, the NHS has continued to treat patients in a safe way using both virtual communication and face-to-face services where appropriate.”

NHS England was also approached for comment.

The data in the report was taken from the EURORDIS Rare Barometer covid-19 experience survey and from weekly community meetings throughout the crisis. The survey ran from 18 to 28 April and had 431 UK respondents. A rare condition is defined as one that affects fewer than five in 10,000 of the general population.