Introduction
  Organs/tissues are removed at a post mortem examination which is normally carried out by a Pathologist. There are two types of post mortem, a Coroner's post mortem and a Hospital post mortem. The vast majority of post mortems are ordered by a Coroner who does not need the permission of any relative. Hospital post mortems require permission from a relative and a consent form would need to be signed.

The Information you need to have at your fingertips before you start;

1. Have the details of your child/relatives date of birth, death of death and full name and address at the time of death with you.
2. Have a pen and paper ready to make notes of any conversations that you have. Take the name of the person you speak to and also their position. Make a note of the date and time that you spoke to them and what was said. Also note if they say that they will call you back. Ask them WHEN they expect to get back to you.
3. If you are concerned that the hospital may have retained organs from your child/relative you have a right to be told the truth about what may have been retained.

Preparing to ask questions

1. Ask whatever questions you want to.
2. It may be helpful to write down the questions you want to ask in advance.
3. The answers should be given in terms that you can understand. If you don't understand, say so, and ask them to explain more clearly.

Questions you may want to ask

1. Was it a Hospital post mortem.
2. Was it a Coroner's post mortem.
3. Why wasn't my informed consent sought
4. What organs/tissues were retained
5. Whose decision was it to retain organs/tissue.
6. Why were they retained.
7. Are they still kept at the hospital.
8. Have they been transferred to another hospital.
9. Have they been disposed of
10. Are they still being used at the Hospital for
    a. teaching/education purposes
    b. audit
    c. research
    1. What specific research project
    2. Can you have a copy of the findings
    3. were you retaining organs/tissue from other people for the same research project
11. How many organs have they got in the Hospital
12. How is the issue of organ retention being dealt with now
    
13. How does the Hospital/Coroner (as appropriate) ensure that informed consent, based on real choice, is obtained before organs are retained
14. When did they introduce this new procedure
15. Tell the Hospital/Coroner that you may have further questions in the future. Get the details of who you should speak to and their telephone number/address.
16. Some parents/relatives have found it beneficial to see the organs and you may wish to raise this with them

Who to Ask

The Hospital where your child/relative died or where the body has been taken. Ask to speak to the Chief Executive. He or She is the person responsible for the running of the Hospital. He or She may refer you to a help-line that they might have already set up to deal with enquiries.
If the Hospital has closed down contact the Regional Health Authority for advise for which Hospital to contact.
The Coroner - If your child/relative had a Coroner's post mortem. Contact the Hospital as above or contact The Coroner's Office directly.

How the information will be given

1. When they will get back to you. - in some cases it may only take a few hours or the following day. In others, it may take a couple of weeks
2. Inform them of how and when you want to be given the information;-
   A) By letter - you can choose when to open the letter and read the contents
   B) By phone - tell them to phone when it is convenient for you.
   C) By appointment with someone in the Hospital.
3. Who will be available for you to talk to for further information, immediately,
   later that day or within the next few days. Many parents/relatives like to meet with either the Chief Executive, the relevant doctors and / or the pathologist for more detailed information.

Choices you may wish to make

1. You can have your child/relatives organs returned to you for burial/Cremation or you may wish for them to remain in the Hospital/Laboratory or for the Hospital to dispose of them.
2. Take as long as you like to decide what choice you want to make. Tell the Hospital to keep the organs while you do so. Some people have taken several years to decide what is right for them.
3. If the Hospital and / or Coroner have retained organs, then it should be the responsibility of the Hospital / Coroner to carry out your wishes in re-uniting the organs with the deceased. This may range from actually carrying out all the arrangements to giving advise and practical help and or bearing he financial cost.
4. Alternatively, you can choose to collect the organs yourself or appoint a Funeral director to do this for you.

Burial

1. If your child/relative was buried you may bury the organs with the body once
   A) permission is given by the local council
   B) permission is given by the relevant church
2. The Funeral Director should be able to arrange his for you
3. A childs body occupies half of an adults grave. The organs can be buried without disturbing the coffin.
4. Organs cannot be buries when the deceased was cremated.

Cremation

1. 1. If your child/relative was cremated, you may cremate the organs once
   A) permission is given by the Superintendent at the Crematorium
   NB Both the Church and the Crematorium will need verification (paperwork) from the Hospital to show that the organs belong to your child / relative.

If there is any information that you think would be beneficial to have in this information pack, lease do contact us and let us know. If you need further advise or assistance, please get in touch and we will do what we can to help.