No one should be left out of life

Headshot of Richard Kramer, who is smiling into the camera.
Richard Kramer, Sense Chief Executive.

Access to treatment for coronavirus should not be based on erroneous quality of life judgements about disabled people.

This weekend many of you will have read the worrying news that some people with long term health conditions and disabilities have been informed that they will be denied care if they become seriously ill with Coronavirus. I recognise how distressing this must be for so many of the families that Sense supports.

First I want to reassure you that the Secretary of State for Health & Social Care Matt Hancock has stated that any blanket policies refusing care or insisting that an individual signs a do not resuscitate form are unacceptable. It is not Government or NHS policy, and the Care Quality Commission (CQC) is already contacting health authorities who have allegedly been sending out these communications. A joint statement by the CQC, British Medical Association and Royal College of General Practitioners explained:

“It is unacceptable for advance care plans, with or without DNAR (do not attempt resuscitation) form completion to be applied to groups of people of any description. These decisions must continue to be made on an individual basis according to need.”

However, we are going through a public health crisis and the NHS is under more pressure than ever. I share the very serious concerns of many disabled people and their families about the language being used to talk about underlying health conditions and quality of life. It is especially troubling when these conversations regarding complex health needs and disability are focused on the alleged scarcity of health and care resources.  We also risk undermining the concept of ‘best interests’ if decisions are left solely with clinicians and not involving the individual, their family and families and care staff with a good knowledge of that person.

I believe it is completely unacceptable to deny care or decide on a course of treatment based on a blanket policy towards disabled or vulnerable people. It is inappropriate to claim that ‘quality of life’ is a reasonable justification to withdraw or refuse treatment without the consent of the individual and or their family. Furthermore, it is insensitive and inaccurate to claim that people with complex disabilities and underlying health conditions cannot have a good quality of life. We risk going backwards to the 1980s when decisions were made on behalf of groups of people rather than taking into accounts the views and wishes of each individual.

What is quality of life?

Sense supports individuals with complex disabilities and health needs. These are individuals who may not communicate formally using speech or sign, they may have multiple health conditions, sensory impairments, limited mobility or learning disabilities. However, these individuals also have loved ones, favourite foods, great senses of humour, they enjoy their garden, swimming or a pamper session. People with complex disabilities make art and music, they bake cakes, they participate in yoga classes or go horse riding. Just like you and me they laugh, dance and stay up too late having fun, or sometimes they want to hold hands with someone they care about.

Having a complex disability does not mean that you have no quality of life. The right care, especially person centred care, empowers disabled people to lead the lives they want to lead, making the decisions they want, expressing their feelings in the way they choose and enjoying life in the way that is most meaningful to them.

Decisions about care should be made with the individual and their family, it should be about the right choice for the person who is unwell, based on their wishes and the successful outcomes of treatment. These decisions should not be made without actively involving the individual, their family or carers. It is not a judgement to be made on the basis of limited knowledge of a person’s disability, care and support circumstances or perceived capacity.

A disability or medical condition is not the entirety of a life. The medication taken, equipment used and complex diagnosis labels are not the person. Yet sometimes it is all that society sees. So I am asking politicians, the media, the NHS and you to not dismiss the loss of a disabled life because they had underlying health conditions. To not refuse treatment or compassion because someone needs a little more care and support to achieve daily tasks. Most importantly, I ask you to remember that quality of life and the joy of living is different for everyone.

At Sense we believe that no one, no matter how complex their disability, health, care and support needs should be left out of life.

We will continue to campaign for the rights of disabled people and their families. During this ongoing public health crisis, we are actively working with other disability organisations and the Government to make sure that people with complex disabilities get the support they need.

Sense has signed a letter by Disability Rights UK calling on the NHS and Government to make sure that disabled people and their families will have the right to decide about their care and treatment.

You can add your name here.

You can find accessible information about Coronavirus, including Easy Read and British Sign Language on this webpage and resources for disabled children and their families on the Disabled Children’s Partnership website.

Richard Kramer

Author: Richard Kramer

Richard Kramer is the Chief Executive Officer of Sense.

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