"I feel like no one has been made accountable"

My mother (a doctor in the NHS for over 30 years) was diagnosed with multiple myeloma in May 2007. Following a number of routine tests, she was recommended to undergo stem cell treatment at St Barts Hospital. The treatment took place in early December 2007.

I believe St Barts is the pioneering clinic for Stem Cell Treatment in the UK.My understanding is that the nature of the treatment means that all activity surrounding it has to be clearly monitored as the stem cell programme is an ongoing development technique that is still at an infancy stage. The government I believe oversees all stem cell work undertaken in the UK.

Having been discharged at the end of her treatment in mid December (following successful treatment), my mother was asked to return to the clinic 3 days later for routine blood transfusions.

The transfusions undertaken on this day as we observed them were not conducted according to the policy procedures laid out by the trust or within the guidelines of the NHS Blood transfusion policy. This is supported by information on the process supplied by the trust, and by my father and me observing this when we were with my mother during this day of treatment.

My mother died on the morning of the following day.

The trust was contacted soon after my mother’s death. A post mortem was conducted, concluding that the cause of death was bronchopneumonia. In addition to this it was recorded on the post mortem that my mother had signs of pulmonary oedema – caused by increased volume of liquid in the lung, due to transfusion. The family contacted the trust to understand what could have gone wrong, considering my mother was deemed a successful patient having finished the course of stem cell treatment. The trust expressed that they were baffled over the death, and commented that bronchopneumonia is just not possible, as that should have been picked up earlier by blood tests.

The family met with the consultant during January 2008 who shared with them the medical history of the treatment received by my mother. Further questions were raised, and a letter to the Trust’s record department was sent in late January to get a copy of my mother’s medical records.

The medical records were not supplied. On enquiry we discovered that they had ‘gone missing’, 4 weeks after my mother’s death.

Further questions were asked of The Consultant who was unable to help due to the missing records. A formal NHS Complaints procedure began in May 2008. A response was finally received in August 2008.

The hospital gave us a list of processes that should have been followed on the date, yet they were unable to confirm this due to the medical records going missing. As previously mentioned, my father and I were there during the whole procedure, and many of the claims made by the NHS were false.

The records had still not been located; therefore the factual claims in the letter over procedure could not be substantiated. The medical records would have resolved the answers we wanted one way or the other.

Further ongoing questions were raised and other external bodies as listed below were contacted.

Action Against Medical Accidents (AVMA)

Patient Advice and Liaison Services (PALS)

Independent Commission Office (ICO)

Independent Complaints Advocacy Services (PoWHER)

Data Protection Agency

NHS National and Local Trust

The Health Commission

NHS Holborn Records Office

The Parliamentary Healthcare Ombudsman

The Department of Health

Local MP representatives: with support from over 30 GP’s.

Various Legal – Medical Negligence Specialists

Not one of the organisations above could provide us with the advice we needed on what could be done.

A revised formal NHS complaints procedure on the missing medical records was raised in October 2009. Response of this was received in March 2010 – highlighting the fact that various searches for the records had been undertaken.

The response claimed that searches were conducted during the latter part of 2009/early 2010. It seems the Trust has been unclear over when the actual records had gone missing and when they did the searches (it will be recalled that the family asked for the records in January 2008 – literally 4 weeks after my mother’s death). The NHS response explained that the records had been found in May 2008 and then ‘lost’ again – another revelation for which no substantiation exists.

The missing records for my mother include over 5 weeks of inpatient treatment. In view of the importance and profile of the national Stem Cell programme the loss of the notes seems both exceptional and unlikely. The trust has not responded on how many records of Stem Cell patients they have lost or where accountability lies.

All my mother’s medical records went missing soon after her death, yet there is nothing in the UK NHS system to support patients or families when this occurs. In my opinion, it is fundamentally clear that the hospital did not follow procedures and give the full duty of care my mother deserved. I believe it is clear that this breach of care did contribute to her sudden death. I now understand that in the US, if a medical body appears to be ‘hiding’ the truth behind treatment, an investigation is undertaken. If no records are found then the medical body is subsequently reprimanded and recorded as having been guilty of an act of severe maladministration. To me, it feels like in the UK disposing of the evidence is a simple, acceptable way of evading justice.

My concern is that from my experience it seems that if a Doctor, GP, Nurse, NHS Trust or any medical professional who feels that they have done something wrong during treatment of a patient who subsequently dies, and does not want any comeback, all they have to do is destroy or ‘lose’ the medical records of that person and no one can question their treatment. Consequently they can avoid prosecution.

Losing records of a deceased person doesn’t seem to be seen as a negligent act in the eyes of the law, the NHS, the Healthcare Ombudsman or any UK body. I feel like no one has been made accountable or has taken responsibility for such maladministration in the case of my mother. There appears to be no form of enforceable redress for our family or anyone else in the UK.

I would like to know how often medical records ‘conveniently’ disappear? How are the public protected when records of loved ones who have died unexpectedly, and in my eyes suspiciously, cannot be found?