End of Life Care

Statement from the Directors and Steering group in the use of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms. 3rd April 2020

We understand that this is a challenging situation for everyone currently, but for families of children and young people with Special Educational Needs and Disabilities it will bring additional challenges.

We have been made aware of concerning media reports nationally and locally regard the use of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms. These reports have centred around particular GP’s deeming that some adults with learning disabilities should be DNR.

There has been some confusing guidance from NICE which has since been clarified and makes it clear this is not the recommendation. You can find the most recent guidance here.
https://www.nice.org.uk/guidance/ng159

We have reported our concerns to Somerset Clinical Commissioning Group that this has happened within our area and they are taking this matter very seriously. The Clinical Commissioning Group are investigating the reports that have been made and have assured us that will take appropriate action. Please do let us know if you come across this.

We have also had clarification from NHS England around a parent’s ability to go with a child if they are admitted to hospital with coronavirus. If your child is admitted, then you are able to go with them. You will need to follow the guidance around self-isolation following this to ensure you do not pass the virus onto another person. 

To help families, we have also set up a dedicated area on our website which can signpost you to information and resources, www.somersetparentcarerforum.org.uk/covid-19. This includes links to activities to keep young ones entertained, local and nation support lines, websites and practical resources provided by a variety of individuals and teams. 

Keeping connected with others during the period of social distancing or self-isolation may be challenging. You can join our online support group finding you way on Facebook and we are planning to hold more virtual coffee mornings after the Easter holidays.

All of us at the team send our best wishes at this difficult time.

Update 4th April 2020 from Somerset Clinical Commissioning Group

The forum have received the following reassurance from Somerset Clinical Commissioning Group and would like to thank them for the speedy response to the concerns raised.

“We have spoken with the practice concerned and reviewed the letter in detail. We believe that the letter was intended as preparation in advance of arranging individual virtual video conference meetings and not intended as a blanket approach. However, we fully appreciate that it may have appeared frightening and extremely concerning for people who received the letter.

I would like to assure you that colleagues across the health and care system in Somerset have drawn up plans for end of life care during the COVID-19 response that are ethically sound and completely non-discriminatory.

We have now written to all our GP practices reminding them of the importance of careful and sensitive wording when writing to patients about advance care planning.”

You can read the full response here.