Coronavirus: New NHS guidance ‘leaves door open to dangerous discrimination’

The failure of NHS England to consult with disabled people over new guidance on hospital visitors has left the door open to “dangerous and discriminatory” treatment, according to two campaigners.

Fleur Perry and Mark Williams have asked NHS England to explain why it failed to consult with disabled people and disabled people’s organisations (DPOs) before producing the guidance.

They have also launched a petition that seeks support for their call for NHS England and the UK government to consult with disabled people when planning health policies.

They had each threatened legal action over an NHS England document that prevented disabled people with high support needs being accompanied into hospital by their personal assistants (PAs) if they became ill during the coronavirus pandemic.

Both of them feared they would not be allowed to be accompanied to hospital by a PA, and that this would deny them support from someone who knew them well, preventing their needs and wishes from being met, and potentially putting their lives in danger.

But although NHS England backed down and agreed to produce new guidance, it failed to consult with Williams (left) and Perry (right), and seems also to have failed to consult with any DPOs.

When it published the new guidance (PDF) earlier this month it was given a guarded welcome, as it suggests that PAs should now be allowed to accompany patients.

But the guidance also suggests that this should be allowed only “where appropriate and necessary”, while the document says it is only “advice” for how NHS organisations “may choose to facilitate visiting”.

Perry said the new guidance “leaves room for dangerous and discriminatory treatment to occur” and that she had not ruled out further legal action.

She said: “We need change in how the NHS makes decisions which affect disabled people, and I’m willing to fight for it.”

She said it was “extremely disappointing” that NHS England did not appear to have consulted with DPOs before publishing the new guidance.

Perry said: “We’ve proved that disabled people are affected by this, but we’re not treated as stakeholders, or even mentioned as a group in the guidance.

“That doesn’t feel fair, and I suspect it may be unlawful.”

She said there had been a series of decisions and actions taken by the government, NHS England and other health bodies during the pandemic – including the widespread use of “do not attempt resuscitation” orders and guidance suggesting that many disabled people would not receive life-saving treatment if they were infected with COVID-19 – which suggested that disabled people had been deemed “unworthy”.

She said: “There are people actively making these decisions, and I’m not the only one who’s scared by that thought.

“We need to make sure that disabled people’s voices are there at the tables where these decisions are being made, that the Equality Act and Human Rights Act are respected and understood by both disabled people and decision makers, and that the way we talk and think about disabled people reflects our equal right to being.”

Williams said the new version of the guidance was “still unclear” on who makes the decisions on whether PAs can be admitted to hospital; was not underpinned by human rights; and was open to misinterpretation.

He said this lack of clarity “highlights why consultation with disabled people should always be the first action to be taken” and not an “afterthought”.

Neither NHS England nor the Department of Health and Social Care had responded to a request for a comment by noon today (Thursday).

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