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Why Everybody With A Learning Disability Needs A Health Passport

crop doctor with stethoscope preparing for surgery in hospital

While scrolling through my social media newsfeed a post from the Guardian caught my attention. Fury at ‘do not resuscitate’ notices given to Covid patients with a learning disability.

Basically, the article outlines how individuals who had caught Covid-19 and were identified as having a learning disability such as Downs Syndrome and Autism, have had a Do Not Resuscitate orders (DNR) given to them. That individuals with learning disabilities have been massively discriminated against during this Covid-19 pandemic.

Being a mum of 3 sons with disabilities including Autism and ADHD, you can only imagine how the anxiety ripped through me! The sheer panic of ‘what if?!’ The feeling of wanting to protect my children even more than I have been doing from Covid-19 knowing fine well that a DNR could potentially be put on them because of their disabilities.

Over My Dead Body!

It isn’t happening unless there is a valid medical reason, not because of who they are or what disability they have!

So in good ‘me’ style, I consulted my ‘good old reliable pal’ Google. I wanted answers, I wanted a solution.

What You Need To Know – The Law

I found that if the medical professionals are using NICE Clinical Frailty Scale (CFS) or NEWS 2 Score
to assess an individual, that a diagnosis of learning disability or autism alone is NOT a reason to place a DNAR/CPR.

Because an individual has a learning disability they must not assume that the individual does not have
mental capacity.

The Human Rights Act means that staff in the NHS must respect and protect the individual’s human rights. Especially when making decisions about their care even in the time of Covid-19.

All decisions must be made in line with the Mental Capacity Act. The Mental Capacity Act has five key principles:

  1. Every adult has the right to make his or her own decisions. They must be assumed to have the capacity to do so unless it is proved otherwise.
  2. People must be supported as much as possible to make a decision before anyone concludes that they cannot make their own decision. If a lack of capacity is established it is still important to involve the person as far as possible in making decisions.
  3. People have the right to make what others regard as an unwise or eccentric decision. Everyone has their own values, beliefs and preferences which may be different from other people. They should not be treated as lacking capacity for that reason.
  4. Anything done for, or on behalf of, a person who lacks capacity must be done in their best interests.
  5. Anything done for, or on behalf of, people without capacity should be the least restrictive of their basic rights and freedoms.

Everybody With A Learning Disability Needs A Health Passport

Knowing all of the above, I fell down the rabbit hole and I came across a document called A Health Passport.

A Health Passport is a document that is filled in with the individual with learning disabilities and their family and/or carers. Allowing you to outline everything a medical professional would need to know about the individual with a learning disability. Including their medical history, medication, preferred way of communication, likes and dislikes, what is important to them, sensory needs etc.

Hospital passports allow medical professionals to understand the needs of the individual. To help them make the necessary reasonable adjustments to the care and treatment they provide.

I have come across two great Health Passports templates from National Autistic Society and Mencap. (click the links to view the documents)

Simply fill them in and keep them in a file which can be easily accessed in a medical emergency. Or on hand to take to any medical appointments.

Keep Summary Care Records Up To Date

Something else I came across was a Summary Care Records. Summary Care Records is an electronic record of important patient information, created from GP medical records. The Summary Care Records can be seen and used by authorised staff in the health and care system involved in the patient’s direct care.

You can request that your GP add additional need to know information relating to an individuals care needs. Such as how you would like to be treated. As well as support an individual might need and who to contact if more information is needed.

To update Summary Care Records, simply contact your GP surgery.

Please Take Care And Stay Safe!


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