On March 22nd 2020, NICE issued COVID-19 Rapid Guideline: Critical Care NICE Guideline [NG159] https://www.nice.org.uk/guidance/ng159
The stated purpose of the guideline is:
To maximise the safety of patients who need critical care during the COVID-19 pandemic, while protecting staff from infection. It will also enable services to make the best use of NHS resources.
The guideline contains protocol for responding to COVID-19, including treatment-rationing that determines who will and who will not have access to life-saving treatment.
At Reverse Rett, we have serious concerns that the plans being put in place, discriminate against adults with disabilities such as Rett Syndrome and place their lives at serious risk.
In section 1. of the guideline (Admission to hospital) it states:
On admission to hospital, assess all adults for frailty, irrespective of age and COVID‑19 status. Consider comorbidities and underlying health conditions.
- Use the Clinical Frailty Scale (CFS) for frailty assessment, available from the NHS Specialised Clinical Frailty Network.
- Record the frailty assessment in the patient’s medical record.
The published guideline directs decision-makers to this flow chart to assist with decision making re who receives critical care: CLICK HERE
as well as the Clinical Frailty Scale: CLICK HERE
The Clinical Frailty Scale gives priority to treating people who are young and healthier and leaves those who are older and those who have underlying health problems to die.
Joanna is self-isolating at home in London with her daughter, Keisha who is in her early thirties and has Rett Syndrome. Joanna says:
‘I am just so worried. I’m worried that the doctor will see the diagnosis of Rett Syndrome on my daughter’s chart and make sweeping assumptions about her longevity and quality of life.
Rett Syndrome often comes with breathing irregularities and chest infections but recent research shows that people with Rett Syndrome can live into their 50s with adequate health care. (1)
Some patients with Rett have never been hospitalised. Many fight off infections and live valiantly and beautifully with a whole host of difficult symptoms.
Rett Syndrome is not a fatal condition and most of those affected are no where near to dying.
If my own daughter were to get COVID-19 and need a ventilator, it is clear from the published guidance that the person making decisions about who gets treatment will see her file in amongst many, many others competing for limited beds and the diagnosis will be used to exclude her from getting treatment regardless of her prognosis prior to suspected infection.‘
Joanna and Keisha’s situation shows how the guidance as it stands will severely impact people with disabilities and those who love them.
There is much which is unknown about COVID-19 at the moment, but it is clear that having an underlying medical condition increases risk of serious complications from the virus.
The conditions which are listed as serious include: compromised immunity, respiratory issues, cardiovascular and kidney problems. All of these are common symptoms of many different physical disabilities and can also accompany a dual diagnosis of learning disability.
NICE’s ‘afterthought reassurance’ to people with learning disabilities issued 23.03.20 in a series of tweets, did nothing to quell the concerns of those with much loved adult family members with learning disabilities who fit into the cross-section of those affected by both learning disabilities and underlying health problems, implicit in their overall diagnosis.
The @NICEComms tweet (4/5) says:
The Frailty scoring system is not perfect, therefore we recommend that Clinicians should take any decisions about care in conjunction with patients and their carers where possible.
@NICEComms Tweet (5/5) then directs us to the SCFN website which states:
- The CFS can be undertaken by any appropriately trained healthcare professional (doctor, nurse, health care assistant, therapist etc.) with training and support
The same page sells the CFS on rapid decision making:
Frailty identification should take no more the one minute; the more you use the scale, the quicker it will become.
Reverse Rett Co-Founder and Executive Director, Rachael Stevenson, says:
‘As COVID-19 sweeps our country, it is self-evident that the lives of people with Rett Syndrome and other rare diseases are not valued as equal in the U.K.
It is inhumane that a person with a disability seeking medical treatment during this pandemic may not receive the care they need or they may be left to suffer or die because they are seen as fundamentally ‘less than’ in our society.
We will not go quietly as members of our community are left for dead. We will stand up for people with Rett Syndrome and related disorders and all people with rare diseases of any age, old or young who become infected by COVID-19.
We call upon NICE to provide urgently needed guidance to health care professionals regarding how specifically to work with patients with rare diseases and their families and not make snap decisions based on ‘underlying conditions’ alone which will relegate much loved members of the UK rare disease community to die.
It is urgent that the government clarify immediately, that the Clinical Frailty Scale should never be used alone to assess the likely risks and benefits of critical care support for an individual with a rare disease, like Rett Syndrome and in so doing, protect against at best, rash decisions and medical misunderstandings and at worst, medical rationing plans, to discriminate against people with disabilities.
This situation is likely to continue for many months, possibly longer. This issue must be addressed now, at the beginning of the crisis. The lives of thousands of people with rare diseases across the UK are at risk. Their lives are no less valuable than yours or mine.’
Contact: Rachael Stevenson
0161 413 0585
(1) Tarquinio, Daniel C et al. “The Changing Face of Survival in Rett Syndrome and MECP2-Related Disorders.” Pediatric neurology vol. 53,5 (2015): 402-11. doi:10.1016/j.pediatrneurol.2015.06.003