Many members have asked us what the next steps are and what they need to do if they want to be involved in the contaminated blood and blood products inquiry. We have put together below some advice on what to do with evidence and our views on what form and remit the inquiry should have.
If you have evidence you think might be of interest, please keep it safe. As soon as we know how this can be submitted we will share information on our website and through social media. In relation accessing medical records please see the information below. We also understand that anyone registered with one of the Alliance House organisations will be contacted about the inquiry. The government have said they will ask those affected their views on what type of inquiry it should be.
The Haemophilia Society’s view on the inquiry
To be successful we have said that the inquiry must have the following powers and remit:
- It must involve the affected community in deciding the remit and ensure their voices are heard in the taking of evidence and the entirety of the inquiry. Anyone who wants to give evidence should be able to do so
- The remit must cover the early knowledge of transmission of hepatitis through blood transfusions and blood products, the seeking of self-sufficiency in blood products from 1973 and the development and licensing of pooled blood products in the 70s and 80s.
- It will investigate what knowledge Government, clinicians and pharmaceutical companies had, at what time, of the risks of blood transfusions and blood products
- It would then further need to consider the subsequent treatment of people affected, including diagnosis, testing, support and the circumstances by which partners and other family members became infected. When information was shared with patients and how this was decided.
- It should look at the allegations of cover-up and suppression of views continuing until the present day.
- The inquiry must consider evidence of negligence and criminal acts and if found refer them to the police.
- It will need powers to compel witnesses to give evidence under oath.
- Evidence should be sought from pharmaceutical companies and others outside the UK involved in the manufacture, marketing and licensing of pooled blood products.
- It must insist on the disclosure of all documents helped by Government and government bodies including health authorities. This must include those documents currently withheld due to commercial sensitivity.
- Campaigners and affected individuals would need to be involved in the evidence gathering process and would need reassurances that all documents would be copied and none destroyed. An inquiry should take into account all evidence statements previously offered to inquiries by the victims; in particular, the statements of those who have since died.
The inquiry will need to make recommendations of what changes are required to NHS policies and procedures, how to improve Government decision making ensuring blood and blood product safety and in relation to the levels of financial compensation.
We understand that many members would prefer a Hillsborough style panel, however only a full UK wide statutory inquiry would have the powers above and can compel witnesses to give evidence. The focus of the inquiry should be how people were exposed to blood borne viruses and other contaminants through their NHS treatment and the ongoing impact of this.
Accessing medical records in England and Wales
A request for your medical records should be made directly with the healthcare provider that provided the treatment, such as your GP surgery or hospital/haemophilia centre. It is worth requesting both as some members have told us GP records have copies of letters that are no longer in their main hospital notes. This is known as a Subject Access Request (SAR), as set out by the Data Protection Act of 1998. Many healthcare providers have SAR forms that you can complete and return by email or by post. Online access to your GP records is free of charge.
However, charges may apply if you wish to see the originals or get physical copies of your health records.
No fee is charged to see your records but if you wish to take a copy away you may be charged. The charge will vary, depending on how the information is stored. The maximum charges are:
- £10 for records that are only held electronically
- up to £50 for those records that are not available in electronic form or only partially available in electronic form
By law, you’re entitled to receive a response no later than 40 days after your application is received, your identity is checked and any relevant fee has been paid. You will then receive an appointment to see your records.
If you have asked to see a copy of your records, they should be written out in a form that you can understand. This means that abbreviations and complicated medical terms should be explained. If you still do not understand any part of the record, the health professional who is holding the record should explain it to you. You can also read the ICO’s Subject Access code of practice guidance for more information.
After you have made your request in writing (this includes email) to the data controller at the NHS organisation where your records are held – for example, the hospital that treated you, or your GP surgery – you will receive an appointment to see your records.
If you have asked to see a copy of your records, they should be written out in a way you can understand. This means that abbreviations and complicated medical terms should be explained. If you still don’t understand any part of the record, the health professional who is holding the record should explain it to you.
If you want to view the health records of a deceased person, you can apply in writing to the record holder under the Access to Health Records Act (1990).
Accessing medical records in Scotland
You can apply in writing to the practice manager at your GP and records manager at hospital. There is more information available here.
Accessing medical records in Northern Ireland
The process in Northern Ireland is slightly different in that you can ask your GP for access to your records, for hospital notes you need to send a letter to your hospital’s records manager. More information is available here.
Records may also be available from the National Haemophilia Database.
You need to complete the Application form for Access to Health Records form over on the UKHCDO website. This is also available to download as a print ready PDF here.