A retired high court judge leading the infected blood inquiry has been highly critical of NHS England for not following his request over the retention of documents relating to the scandal.
HuffPost UK reported how campaigner Jason Evans, whose father died in 1993 after getting hepatitis and HIV through contaminated blood, discovered how around 950 files were checked out by government staff and went missing with 45 still unaccounted for.
Now Sir Brian Langstaff, chairman of the Infected Blood Inquiry, has revealed that last July he wrote to the relevant heads of the NHS in the UK to request that no documents, files or paperwork that may be of interest to the inquiry should be destroyed.
He again wrote to them on December 12 telling them about the delays some people were experiencing accessing medical records and asking for action.
Sir Brian has thanked Evans, who runs campaign group Factor 8, for bringing it to his attention that his request did not happen within the NHS in England as they ‘misinterpreted’ his request.
Campaigners have now called for Simon Stevens, chief executive of NHS England, to quit amid confusion over the process.
Sir Brian said: “In Scotland, Wales and Northern Ireland, the Inquiry’s request was circulated to all NHS Trusts, Foundation Trusts, Health Boards and other statutory bodies within those countries.
“The Inquiry has learned, through the diligent work of Jason Evans and Factor 8, that this did not occur within the NHS in England.
“I am grateful to Jason Evans for bringing this matter to my attention.
“NHS England apparently interpreted my request as applying only to itself as a stand-alone organisation.
“It is disappointing both that this narrow approach was taken when NHS England presents itself as leading the National Health Service in England and that NHS England did not tell the Inquiry that it did not intend to pass my request on to Trusts, Foundation Trusts and Clinical Commissioning Groups.”
Sir Brian says that people participating in the hearings – whether in London, Belfast, Leeds, Edinburgh, Cardiff or following it at home – should not have to worry about accessing medical records, nor about current NHS record keeping.
He added: “In these circumstances and to avoid any further delay, I have instructed the solicitor to the inquiry to contact each NHS Trust, NHS Foundation Trust and Clinical Commissioning Group in England direct, rather than now relying on NHS England to do so.
“We will request and require that each trust and group retains all relevant documents and waives fees for people seeking copies of their medical records.
“I will also seek to determine whether any relevant documents (and if so which) are likely to have been destroyed in the meantime.
“I look for the fullest co-operation from NHS England in this.”
Sir Brian says that the majority of people at the heart of the inquiry have told him that for years they have felt ignored, kept in the dark or have been met with a “wall of silence”.
He said: “I am determined that the inquiry itself should not be a body against whom such allegations can be made.
“Whoever the participant is, whether a person, organisation or official body, trust in the work of the inquiry can only be achieved through transparency.
“Accordingly, I have set out what did not happen, why it did not happen, and what is being done to put the position right.”
Evans told HuffPost UK it is “shocking” that Sir Brian’s request was not carried out by NHS England.
He said: “We are calling for Simon Stevens, chief executive of NHS England, to resign as he is the one accountable for not making sure that this request from the chair of the inquiry happened.
“Campaigners have waited decades for the truth and we need to be sure it happens.”
An NHS England spokesperson said: “NHS England remains committed to supporting the families affected and as such has co-operated fully at every stage of this process, having first explained to the Inquiry’s Solicitor in July 2018 the roles and responsibilities of different NHS organisations and what information is held nationally.”
NHS England refuted the claims made about document retention when they sent an e-mail to the inquiry’s solicitor more than six months ago saying they weren’t able to provide all of the detail but gave information on how to get it.
The letter on behalf of NHS England stated: “The scope of the Inquiry goes back in time to incidents which were first identified in 1970.
“The structure of the NHS in England has changed considerably since that time which has significant consequences for identifying the location of both patient medical records and organisations’ corporate records.”
It went on to say: “NHS England is able to review its own records with a view to disclosing all relevant records in its possession to the Inquiry.
“When the SHAs and PCTs were abolished many of the records from those organisations were transferred to NHS England under the Department of Health and Social Care (DHSC) Transfer Project.
“NHS England received the records which only related to the functions which transferred from those bodies to NHS England to ensure continuity of services. However, there may be other relevant records which were transferred elsewhere.
“It is the DHSC which should be able to help you identify all receiving organisations of PCT and SHA legacy records.”