On the 2nd June 2020, the BBC reported that the Care Quality Commission (CQC) had confirmed a 134% increase in the number of deaths of people with a learning disability between 10th April and 15th May this year compared with the same period in 2019. Of these deaths, 53% were from COVID-19.
In this article Sally Gillies, Adult Social Care Project Manager at tri.x and Reconstruct, brings together some of the key national news broadcasts to highlight and explore some of the initial learning and share resources for best practice.
Availability of Testing
The following report is from the BBC. It looks at the cases of Nigel and Laura, who both lived in a supported living setting before being admitted to hospital and dying from COVID-19.
The report identifies the lack of testing for people with a learning disability as a key issue.
It is a matter of fact that current testing priorities place older people above those with a learning disability, and care home environments above community based settings. There is no clear reasoning behind this hierarchy.
It is not difficult to see why a lack of testing has caused problems:
The impact of hospital admission
In my role as a social worker in a complex learning disability team, I supported people with some of the highest health needs in the local authority. When hospital admissions occurred , I found that on the whole, the experience was often not a positive one for someone with a learning disability.
On top of feeling unwell, the person is in an unfamiliar environment surrounded by people they do not know. They cannot walk around freely and may have to undergo procedures such as blood pressure checks, temperature checks or blood tests. The information given to them about what is happening may be difficult to understand and not explained clearly to them. In addition, resource pressures faced by the healthcare team means that basic needs for interaction, activity and routine frequently cannot be met.
This can create feelings of stress, anxiety and fear which can have an impact on mental wellbeing and hinder their recovery.
At least there is visiting time to look forward to………..unless you have COVID-19.
This second BBC report examines Barbara’s story and her experience of being in hospital with COVID-19. It is told through the eyes of her family and carers as sadly she died.
As the report demonstrates, all of the normal concerns about hospital admissions are understandably intensified when the admission is to treat COVID-19. The environment is even more sterile, the healthcare team can seem less approachable due to increased PPE, there is more equipment and monitoring and, perhaps most challenging fewer (or even no) visits from familiar faces.Unless the person is ‘distressed’. Although the definition of distress is not clearly defined. Aggression? Crying? Screaming? A fearful silence?
Where hospital admission is necessary, the provision of accessible information is essential in supporting the person to understand why they are there, what is happening to them and why they are not able to see their family and carers.
When someone with a learning disability is admitted to hospital with COVID-19, I would also argue that advocacy support should always be made available to ensure that their voice is heard, needs are met and opportunities to interact with loved ones virtually are maximised.
Resources to Promote Best Practice
COVID-19 Grab and Go guide (Mencap/NHS)
Where am I? (Leeds Teaching Hospitals NHS Trust)
Why we wear PPE (Mencap)
What is a cannula? (Leeds Teaching Hospitals NHS Trust)
Having your temperature taken (Leeds Teaching Hospitals NHS Trust)
Having your blood pressure taken (Leeds Teaching Hospitals NHS Trust)
Having your oxygen level checked (Leeds Teaching Hospitals NHS Trust)
Wearing a nasal cannula (Leeds Teaching Hospitals NHS Trust)
Wearing an oxygen mask (Leeds Teaching Hospitals NHS Trust)
Critical Care Communication Chart (Widgit)
In an ideal world, preventing hospital admission would, of course, be the desired outcome. Whether that is through early detection and home treatment, or through prevention work that minimises the risk of infection. The matter of testing has already been considered above and is likely to remain an issue. The issue of prevention is explored below.
Successful prevention broadly involves;
- Understanding the risks that COVID-19 poses (to self and to others);
- Understanding what action can be taken to reduce those risks;
- Taking that action at the time that it is required.
This report from ITV shows how some people with a learning disability are coping with social distancing and other actions they are taking to reduce the risk of COVID-19.
When explaining the risk around COVID-19 it is important to be honest with the person about what these are, even if they may cause anxiety. This means saying that there is a risk of death, not just being unwell.
Resources to Promote Best Practice
The Stay Up Late Guide to Coronavirus (Stay Up Late)
The Handwashing Rap (Purple All Stars)
Stop Coronavirus: Keep Clean (Mencap)
What does ‘Social Distancing’ mean? (Mencap)
What does ‘Self-Isolating’ mean? (Mencap)
Why are people wearing masks? (Mencap)
Beating the Virus (Beyond Words)
When it’s not safe to stay at home (Beyond Words)
People who lack capacity or make unwise decisions
This is perhaps the biggest challenge for successful prevention; people who lack capacity to, or choose not to, take the action required of them to reduce the risks from COVID-19 (either to themselves or to others).
In either case, there is a difficult balance to reach between protecting the health of the person (and others) and protecting their right to liberty. This is a complex area and not something I plan to go into any great detail in this article.
There are some dedicated resources to support professionals and carers faced with this dilemma to make the best decision based upon the available evidence.
Norfolk Safeguarding Adults Board has developed this excellent guidance:
The team at Mental Capacity Law and Policy have updated their previous guidance note to reflect the Government’s new ‘Stay Alert’ guidance:
Some things to remember
In all cases the Mental Capacity Act is law; as a health or social care professional, you have a legal duty to apply the principles without exception.
A DoLS application (or A Court of Protection application if the person is not in a care home or hospital setting) should be considered when a person lacks capacity to understand the risks and take appropriate action, and if additional restrictions on their movements are required to keep them safe.
A Court of Protection ‘inherent jurisdiction’ application should be considered when the reason for the required restrictions do not relate to the safety of the person, but to the safety of others. For example, if the person has or is strongly suspected to have COVID-19.
A Lasting Power of Attorney or Deputy cannot agree to or authorise a deprivation of liberty.
If a person has capacity and takes action that endangers the public, a Public Health Officer should be informed. It is their role to enforce regulations and determine the most appropriate course of action. However they have no powers of prevention, only reprimand.
This article has has used some of the latest media broadcasts about the number of people with a learning disability dying from COVID-19 to identifiy and subsequently explore some of the key reasons for this
It has provided links to some of the many resources available that can help support people with a learning disability to understand the risks around COVID-19, the measures they can take to stay safe and well and help them to understand what is happening should they require hospital admission.
The author acknowledges that there are a number of other issues surrounding this topic that have not been explored in the article including the supply of PPE to care providers and personal assistants, reduced access to routine healthcare in the community, DNAPR notices and application of the Mental Capacity Act generally following admission to hospital and the end of life care experience.
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