What to do when a registered tissue donor dies

This is a practical step-by-step guide for families, friends and professionals to help the Multiple Sclerosis and Parkinson’s Tissue Bank collect tissue from registered donors.

Brain and spinal cord tissues deteriorate very rapidly. We aim to collect tissue within 24 hours of death and can accept tissue up to 48 hours after death. But after this point the brain and spinal cord tissue is no longer suitable for research. Since it is vital that we are contacted as soon as possible after death, we would ask you to ensure that your next-of-kin or legal representatives and healthcare professionals are aware of your wish to donate tissue.

The procedure that we follow is described below - we make arrangements to ensure that everything is kept as straightforward as possible for next-of-kin and carers at such a difficult time.

Step 1

Contact the Tissue Bank on the relevant emergency number as soon as you can

  • Multiple Sclerosis 07659 104537
  • Parkinson's 07659 104537

 Please provide the following details to the operator:

  • Your name and contact telephone number
  • The donor’s name and donor card number

If your message is received between 9am and 5pm, Monday-Sunday, the brain bank will be in touch within 30 minutes of your call. If your message is received outside these hours the brain bank will be in touch first thing the next day.

Step 2

Inform the donor’s doctor or GP of their wish to donate, and request a medical certificate of death as soon as possible after death.

Most hospitals will not remove any tissue until they have a signed medical certificate of death. Getting death certificates can be a particular problem at weekends, so the sooner you can speak to a doctor about this, the better.

Step 3

If the death occurred at home or in care home please ask the funeral director to take the donor into their care – ideally within 4 hours. This is vital because the body needs to be kept in cold conditions to preserve the tissues.

After Step 3 all the following the steps will be arranged by the Tissue Bank. We will keep the next-of-kin informed on the progress of tissue retrieval and liaise with the funeral director when the procedure is completed.

We really appreciate your help at this difficult time. We are committed to doing everything we can to support donors and their families and will strive to honour all bequests.