Mary was diagnosed with epilepsy in the early 1940s, and in the years that followed she trialled a range of anti-epileptic drugs (AEDs), with little response, under the care of several different neurologists. In 1958, her GP decided to try an unusual combination of two AEDs (one of which was not actually known as an AED in the UK) and this completely controlled Mary’s seizures for a number of years.
Prior to February 2011, Mary had not had a seizure since August 2010 and, all being well, she was 6-months from being eligible to re-apply for her driving licence (and increase her independence).
In February 2011, Mary had a fall and was taken to A&E outpatients. X-ray revealed nothing of concern, but she was admitted for observation. Anticipating a single night’s stay in hospital, Mary asked her brother to fetch some of her anti-epileptic medication from home. The staff in A&E documented what she needed to take and when, but Mary kept her tablets in her bag and self-medicated. In the event, Mary was kept in hospital for two nights rather than one and she discovered that she had too few of a particular tablet. She informed a nurse as soon as she realised, but ended up being given a ‘replacement dose’ a number of hours late (and she later suspected that it was incorrect). Mary underwent no more tests during the two-day ‘observation period’ and was discharged.
Her pain rapidly worsened, however, and at the end of March 2011 – after about six weeks ‘in agony’ with no pain killers bar those she had in the house, and having had numerous consultations with her GP – she was seen at the outpatient fracture clinic. By this point Mary had lodged a complaint with the hospital Trust about her care. A CT scan at the clinic showed that she had a hip fracture and she was admitted for surgery, which took place the following day. Two days after her operation, Mary was discharged from hospital and was helped in her recovery by a good friend.
Mary has very little recollection of events following the CT scan, until a moment when she was in a hospital bay with the curtains drawn. She remembers her brother coming in and asking him why they were drawn, to be told that the staff suspected she had had a seizure. She immediately asked where her seizure medication was; however the nurses said that they had no record of it. Mary told them exactly what she needed to take and a little while later they brought her some, but they were the wrong tablets and she informed them. Two hours later she was discharged.
It was clear to Mary that she hadn’t been correctly medicated during the previous two days, and that there had been no wider communication about her epilepsy by the A&E staff (who had documented all of her AEDs in the February).
In September 2011, when she had recovered sufficiently from her surgery, Mary lodged an additional complaint to the Trust about the way in which her epilepsy medication had been managed whilst she was an inpatient. She firmly believed that this had caused her two seizures. The Trust sought to clarify both issues with Mary in early 2012, and in September 2012 they sent her an official reply. However, Mary was dissatisfied at the amount of information the response contained, particularly relating to her epilepsy medication (she was simply told that there was no record in her medical notes concerning the treatment of her epilepsy). The Trust agreed to send Mary a further response in January 2013, but they overlooked it and eventually sent it in September 2013. When Mary was still not satisfied, the Trust invited her to take her complaints to the Parliamentary Health Service Ombudsman for England (PHSOE), which she did.
The PHSOE began investigating both Mary’s complaints at the end of 2014. With reference to the two seizures that Mary experienced, the PHSOE discovered that, despite Mary’s state immediately prior to and following her surgery, the Trust had assumed her ability self-medicate because she had previously insisted upon it. However there had been no official assessment of this by a nurse (as policy requires), and no signed agreement from Mary (as should have been requested). The PHSOE raised the point that if a patient is deemed fit by nursing staff to self-medicate, their medication must be stored in a locked cabinet and accessed (by them) at the appropriate time. Yet Mary’s reduced awareness, pain and lack of mobility would have severely restricted her ability to access a locked cabinet. The Trusts argument concerning Mary’s epilepsy management was not deemed by the PHSOE to be robust; however owing to the lack of medical records the PHSOE could not definitively state that her epilepsy had been mismanaged, or that this was the cause of her two seizures.
The PHSOE also noted that the delayed diagnosis of Mary’s hip fracture, although irrelevant to the treatment given, caused her unnecessary pain and stress, which may have increased her risk of seizures. It concluded that it was impossible to be certain exactly what factors were responsible.
Ultimately, in June 2015, both Mary’s complaints were upheld by the PHSOE. The PHSOE made recommendations to the Trust for improved care, and the Trust sent an official apology to Mary for its oversights.
Despite many disappointments and frustrations of the last four years, and even when the temptation to give up has almost been irresistible, Mary has seen her complaint through to a successful conclusion. She has not done this just for herself; she wants to raise awareness and help improve the management of epilepsy, and other chronic conditions, during (unrelated) hospital stays.
n.b. names in this account have been changed