Update from Thursday 2 April 2020
Mencap responds to revised critical care guidance from NICE
Following Mencap and family/carers raising concerns that NICE’s emergency critical care guidance could result in patients with a learning disability not getting equal access to critical care, NICE revised its guidance.
The revised guidance now makes clear that the clinical frailty scale should never be used to assess patients aged under 65, or patients of any age with stable long-term disabilities (for example cerebral palsy), learning disabilities or autism.
Responding to the revised guidance, Edel Harris, Chief Executive of the learning disability charity Mencap, said:
“We are glad that NICE listened to our concerns and acted. People with a learning disability and their families will feel reassured that revised guidance now clearly states that the clinical frailty scale should never be used to assess people with a learning disability for medical treatment. Now that the critical care guidance has been revised, it must be clearly communicated to all healthcare professionals urgently to make sure that people with a learning disability access the treatment they have a right to. We continue to campaign to make sure people with a learning disability are treated equally no matter what.”
For advice and information on learning disability, including advice on coronavirus and healthcare, please contact Mencap’s Freephone Learning Disability Helpline on 0808 808 1111 (9am-3pm, Monday-Friday) or email email@example.com.
Press release from 22 March 2020
Mencap responds to “deeply troubling” new NICE COVID-19 guidance
The National Institute for Health and Care Excellence (NICE) has published new guidance on the care of patients in critical care during the COVID-19 outbreak.
The new guideline on critical care states that all patients with confirmed COVID-19 must be assessed on the basis of “frailty” when healthcare professionals are making decisions about whether to admit a patient in need to critical care.
Responding to the new NICE guidance, Edel Harris, Chief Executive of the learning disability charity Mencap, said:
“These are unprecedented times and our NHS is under extreme pressure. But people with a learning disability and their families are deeply troubled that the latest NICE guidance for NHS intensive care doctors could result in patients with a learning disability not getting equal access to critical care and potentially dying avoidably. These guidelines suggest that those who can’t do everyday tasks like cooking, managing money and personal care independently – all things that people with a learning disability often need support with – might not get intensive care treatment. That’s why we urge NICE to include specific guidance on learning disability to make it clear that healthcare professionals should not judge patients on their cognitive ability when making life or death decisions."
Clinical Frailty Scale
The graphic below shows the clinical frailty scale which the new guidance states must be used when COVID-19 patients are being assessed:
Image/graphic credit: National Institute for Health and Care Excellence (NICE).
See the clinical care admission flow chart to see how the clinical frailty scale will be used.
For further information or to arrange an interview with a Mencap spokesperson, please contact Mencap’s media team on firstname.lastname@example.org or 020 7696 5414 (including out of hours).
For advice and information about learning disability and Mencap services in your area, contact Mencap’s Freephone Learning Disability Helpline on 0808 808 1111 (9am-3pm, Monday-Friday) or email email@example.com.
Notes to editors
- An estimated 1200 people with a learning disability die avoidably every year, when timely access to good quality care could have saved them (Glover, G. and Emerson, E. (2013)‘Estimating how many deaths of people with learning disabilities in England could be prevented by better medical care' PDF,Tizard Learning Disability Review, 18(3): 146-149)
- People with a learning disability die on average two decades younger than the general population (LeDer PDF 2019)
- Research commissioned by Mencap in 2017 found that 1 in 4 healthcare professionals have never been given training about learning disability (Mencap PDF 2017)
- Half of healthcare professionals said that a lack of knowledge around learning disability might be contributing to the problem of avoidable deaths (Mencap PDF 2017)
There is approximately 1.5 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want.
Treat Me Well campaign
In 2018 Mencap launched our Treat Me Well campaign to help save lives and to transform how the NHS treats people with a learning disability in hospital.
It is estimated 1,200 people with a learning disability die avoidably every year, when timely access to good quality care could have saved them. While people with a learning disability die on average over two decades younger than people without a learning disability.
Over ten years after Mencap highlighted the issue of people with a learning disability dying avoidably in the Death By Indifference PDF report, Mencap’s Treat me well campaign hopes to address the issue by calling on the Government and NHS to make sure that no health professional sets foot on a hospital ward without having had training on meeting the needs of patients with a learning disability.
Working alongside campaigners like Paula McGowan, mother to Oliver McGowan who died in hospital, the Treat me well campaign has succeeded in securing mandatory learning disability training for all health professionals which will be named in honour of Oliver and will be piloted shortly.
Simple changes in hospital care can make a big difference – better communication, more time and clearer information.
But we know the treatment people with a learning disability get in hospital is still not good enough in many parts of the country. This has to change.
Our Treat Me Well campaign calls on NHS staff to make reasonable adjustments for people with a learning disability which can help to save lives.
What is a learning disability?
- A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life;
- Learning disability is not a mental illness or a learning difficulty, such as dyslexia. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’
- People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.