Chamber and committees

Petitioner submission of 11 October 2021

PE1911/A - Review of Human Tissue (Scotland) Act 2006 as it relates to post-mortems

My child died suddenly at home in 2019. As a result, there was a post-mortem carried out – which I thought was a Grant & View, I then discovered not only was it a full post-mortem, but the brain, throat and tongue had been removed too, I was horrified.

I was advised that the tissue samples taken from my CHILD belonged to no particular person and would be held as part of Medical Records. Yet when I contacted Medical Records, they advised they only keep paperwork and had nothing to do with samples.

I discovered that samples are stored in other locations.

The policy is different in Scotland from England/Ireland & Wales, where loved ones are given a choice, and automatically offered these samples back (perhaps to add to caskets or bury). I am sure many Scottish people are unaware of this policy at present, and those who have now discovered it are shocked. We are all part of the UK.

My friend lost her sister in Ireland months before I lost my child, and they were offered the samples back without asking for them. Yet I felt when I lost my child, I had no say at all in what happened, even right down to tissue samples that were taken and stored without consent.

People may choose to decline the samples, the point is they are being given a choice. I felt these tissue samples were still part of my child. The child I gave birth to and others were telling me what was happening. All of this was so unnecessary, to put a grieving Mother/Family and relatives through such heartache.

I discovered that in the event of a sudden or unexplained death the Procurator Fiscal provides this authorisation not the next of kin. This has to be changed, loved ones have no say in what happens to their loved one or their loved ones, tissue samples – this was my child’s samples and what an ordeal I had to go through on top of grieving to retrieve them.

We are given the choice to vote, yet not given the choice regarding our loved ones. I believe this policy should be changed now. Relatives cannot go through this ordeal.

I was sent on a wild goose chase for around ten months, trying to locate where these samples were being stored all whilst grieving. No-one seemed to know where these samples were being held, which I find hard to believe. It was also discovered that, because of the Human Tissue Act 2006, these samples can be used for education, research etc without the consent of Next of Kin. I believe that all relatives should be given the choice! To accept these samples or decline them - This is their loved one! And as friend’s have said this is robbery using samples that do not belong to them, the deceased didn’t given consent to this.

Regarding Post-Mortems and the removal of brains, I was horrified to discover that my child’s brain, throat and tongue were removed without consent. I accept that were a sudden death occurs post-mortems may have to be done, on a torso but removal of the brain, throat & tongue is not acceptable. Consent from next of kin should be asked for, then they have the choice, whether this is performed or not.

Where are the rights for the deceased or their loved ones? I have nightmares thinking about what happened to my child, and I cannot have another mother/family going through this. I had no idea this was happening to my child – consent should be asked for in all of the above then at least loved ones would have a say.

No-one is being blamed for anything in the Petition but all of the above has to be looked at. I personally felt this was cruel putting a family through all, of this heartache. Wasn’t the shock of finding my child dead enough? And after all of the above this child has a death certificate of “Unascertained” meaning nothing yet on PM report there is a 1st & 2nd cause, testing for 2nd cause came back with no evidence and we have evidence of first cause, this is killing this family and, I believe, makes a farce of death certificates altogether. All of the above has destroyed this family, what a horrible world we live in. When others are making the decisions for YOUR loved one.