Learning disability and Do Not Resuscitate forms


Our Chief Executive, Lesslie Young looks at recent reports in England and Wales regarding people with learning disabilities and Do Not Resuscitate (DNR) forms.

Epilepsy Scotland has become aware of reports stating people in England and Wales with learning disability and autism had been “blanket” contacted by their GPs about filling out a Do Not Resuscitate (DNR) form.

At time of writing, Epilepsy Scotland has not been made aware of such cases in Scotland. However, it is important to stress this is a line that should not be crossed.

The discussion about DNRs must be sensitive to an individual’s circumstances and those being asked to make a decision should not feel pressurised.

For people with additional cognitive needs, like learning disability or autism, it is essential families are involved in that conversation. The reported cases of blanket DNR contact is shocking and inappropriate, especially where people with learning disability are concerned.



Learning disability

Learning disability manifests differently in every individual, many also live with comorbid conditions like epilepsy. This complexity means that there is no standard treatment option for people with learning disability or autism. Their care must be individualised and adapted to suit their needs.

No research has been produced which says this group is unlikely to recover from COVID19. Whilst, as in any other group, there will be those at high risk and this conversation may be appropriate, to treat the learning disabled so overtly differently is unacceptable.

A handful of cases does not justify blanket DNR contact. Decisions made by grouping and targeting certain disabilities raises serious human rights questions.

I echo and support the words of the National Medical Director for NHS England, Stephen Powis, “learning disabilities are not fatal.”

It is all too easy to single out the vulnerable and discriminate difference. There is strength in treating people as individuals.

Epilepsy Scotland has written to the interim CMO for Scotland seeking assurances that people with profound learning disability will not be blanket contacted about completing a DNR.


What Epilepsy Scotland advises

Epilepsy Scotland advises if individuals are attending an emergency clinical setting it is a good idea to have the following, where applicable, “on hand”:

  1. A paper copy of Guardianship Order
  2. A paper copy of emergency medicines protocol
  3. Emergency medication and Anti-Epilepsy Drugs (AEDs), as well as details of prescription eg dosage
  4. A letter from your GP, epilepsy specialist or learning disability specialist emphasising epilepsy and associated learning disability is not enough to merit a “high frailty” score
  5. Seizure diary or epilepsy passport, if you have one
  6. Contact details of who should be contacted in an emergency
  7. Contact details of your epilepsy specialist nurse and neurologist. Urgent/critical care services may need to contact your epilepsy specialist for further information on your condition

If you do come across a case like this, please let Epilepsy Scotland know by emailing atonberg@epilepsyscotland.org.uk