Getting Medical Records for Haemophiliacs who have died

We have been asked a lot recently about how to go about obtaining medical and treatment information for a person with Haemophilia who has subsequently died.

Here is our step-by-step guide:

Step 1 - UKHCDO

This is likely to be the easiest experience you will have. The UKHCDO (United Kingdom Haemophilia Centre Doctors Organisation) has been collecting treatment and infection information on all people in the UK with Haemophilia since the late 1960's. Many people are surprised to learn of this fact.

You can obtain a copy of the file they hold on the deceased by filling out and returning the form at the link below. (Follow the instructions on the sheet and phone before sending for up to date fees and payment details).

The information provided by the UKHCDO is likely to include a full or partial treatment history and Hepatitis / HIV infection information as well as other personal details.

Step 2 - The Hospital / Haemophilia Centre

If the person in question died more than a few years ago, this is likely to be a challenge and you must be persistent.

  1. You will need to know which Haemophilia Centre(s) the person in question was treated by. An up to date list of Haemophilia Centres can be found here.
  2. Once you know which centre treatment was given by, the next step is to send them an Application for Access to Health Records. To do to this you will need to request an "Application for Access to Health Records form" from the Centre in question. These forms vary from centre to centre and are usually not available on their website. You will likely need to call or e-mail to ask for it.
  3. Once you have the form you will need to fill it out and return it (Ask for ALL documentation and records). In order to obtain the medical records of the deceased you will usually need to rely on 1 of the following 2 possible options... a) You are the next of kin or b) You have a claim arising out of a death. Please note: Sometimes the form you receive to fill out may not list 1 or either of these options as a reason for requesting records, if this is the case, we recommend adding the relevant reason on as an option yourself and then returning the form.
  4. Expect the best but prepare for the worst...
  5. More often than not when requesting medical records for Haemophiliacs who have died in the 1980's/1990's and early 2000's families are told that their loved ones medical records are... "missing" or "would have been destroyed". It is common for people to be made to feel that they do not know what they are talking about. Expect this to happen and do not give up. You must keep up the pressure and persevere. Usually, records are eventually "found", but only after months of pestering, chasing and not taking no for an answer.
  6. To aid you in your fight and to avoid paying any fees for records, you can utilise this letter from Sir Brian Langstaff.

Do not give up.

Factor 8