Learning disabilities patients told they may be ‘too frail’ for mechanical ventilation if they get covid-19

HSJ has seen one example of a letter which was sent to a Mencap care home in Cambridgeshire. The surgery has now accepted it should not have been sent to the families of the care home residents with learning disabilities – but there are concerns other similar letters have been sent out.

Mencap, the learning disability charity, told HSJ GPs appeared to be “wrongly conflating” support needs with frailty. It said it would robustly “challenge this advice from GP surgeries”, stating “people with a learning disability have a right to equal access to healthcare just like anyone else”.

The advice also contravenes national guidelines sent out by National Institute for Health and Care Excellence last week which said frailty scores used by critical care staff to prioritise who gets care should not be used for those with learning disabilities.

NHS England and Improvement also wrote to all GP practices, acute and community trusts on Friday to clarify national guidance. It said: “Treatment decisions should not be made on the basis of the presence of learning disability and/or autism alone.”

Edel Harris, the charity’s chief executive, said: “Over the last few days, people with a learning disability have received a number of concerning letters from GP surgeries which advise them that they are unlikely to be prioritised for medical treatment because they are ‘frail’.

“These letters wrongly conflate having support needs with frailty. As revised NICE guidance clearly states, the clinical frailty scale should never be used to assess people with a learning disability for medical treatment, rather an individual assessment must be undertaken on admission to hospital.”

She added: “While GP surgeries are right to flag that people with a learning disability should make sure their hospital passports and communication guides are up-to-date in the event of being admitted to hospital, they are wrong in suggesting that people with a learning disability may be better off staying at home should they contract coronavirus or that they will end up alone in hospital.” 

It comes amid growing concerns about discrimination against vulnerable patients by GPs, following the NICE guidance published last week on prioritising critical care. NICE was forced to revise the guidance following allegations it discriminated against people with learning and other disabilities.

The letter seen by HSJ, was from Lakeside Healthcare to the families of residents at Popewalk care home in Huntingdon. 

It said: “We know that anyone who is frail enough to require full time care is unlikely to benefit from mechanical ventilation and that this therefore is unlikely to be offered in hospital.

“We would much prefer to keep your loved one [at Popewalk] and provide them with the best possible care there, including good end of life care if it becomes clear they are not going to survive the infection.”

However, when contacted by Lakeside, its chief medical officer told HSJ the letters had been sent “in haste” to all the care homes it serves, following a standard template agreed by the local medical committee. He said it was not relevant to patients with learning disabilities.

He added: “We could hold our hands up and say the wording wasn’t appropriate.”

He said a follow up letter would be sent to all the care homes to clarify that any decisions on care plans would be based on “individual conversations with patients.”