Tony’s story

Tony was first diagnosed with high risk MDS in January 2021 following blood tests he had for knee surgery that showed low counts and raised some alarms. He quickly had a bone marrow biopsy and MDS was confirmed.

At our first meeting the haematology consultant at our local NHS hospital explained clearly what MDS was, the risk that it would turn into AML, and arranged for Tony to start Azacitidine treatment straight away.

The consultant was also very clear about the problems infections could cause and told us that, if Tony felt unwell at any time, he should not wait but to go straight to A&E. They issued us with a rapid response HEAT card (History Examine Action Treat) and said we should produce this if we ever came to A&E and it instructed staff what to do with patients at high risk of Neutropenic Sepsis. The NHS guidance on NICE, the Sepsis Trust and websites for cancer charities all show that high risk patients should be admitted and put on IV antibiotics within 60 mins of arriving in A&E. We were reassured that if this ever happened, treatment would be in place very quickly.

Tony’s treatment was supported by regular blood and platelet transfusions, and all appeared to be manageable for some time. In early 2022 Tony’s white count and neutrophils started to drop considerably and his Azacitidine dosage and frequency was reduced. In spring 2022 his red cells and platelets were doing really well, and transfusions not needed. The consultants were comfortable that MDS was in remission (and actually used that word!) so they put his treatment on hold, but they were concerned and puzzled by his very low white count and neutrophils. Tony remained reasonably well and hadn’t had any infections during this time or been admitted to hospital at all. We started to think things were really OK and managed to get travel insurance and have a holiday in Florida. Throughout this time Tony continued to have weekly blood tests and he remained neutropenic.

In early Dec 2022, Tony woke up with a sore mouth and swollen face, so we went to A&E as per instructions and presented the HEAT card. He was triaged straight away but it was a really busy day in A&E and we waited 5 hours in the general waiting room before being taken through A&E and being seen by a doctor. What we weren’t told was this was actually the Urgent Treatment Centre, not A&E, and it was outsourced to a private company, and the doctor we saw was a locum GP employed by that company. By this time Tony’s face was more swollen and he was very cold, but the GP said he needed to see a dentist and he would give us a prescription for oral antibiotics. I now questioned if the GP understood Tony had MDS, was neutropenic and had a HEAT card but he insisted I take him home and book a dentist appointment. We left the hospital thinking perhaps it wasn’t a big problem but, within hours Tony became much worse and following a 4-hour wait for an ambulance was finally in A&E early the next day. The nurses there fully understood the procedure and put him on intravenous antibiotics within minutes of arriving. Unfortunately, this was too late and, following emergency surgery to extract several teeth, (in retrospect this was unnecessary, but staff felt that it could have been the cause of the infection and the quickest way of trying to clear it.) the next day Tony was transferred to intensive care with neutropenic sepsis.

I have formally raised with the hospital the way Tony was treated in A&E. They have agreed that the correct procedure wasn’t followed by the Triage Nurse or the GP and that we will never know if the long delay made his sepsis worse and the infection more difficult to control.

Following 5 days in intensive care, Tony spent a further 11 weeks in isolation being treated with multiple high dose antibiotics to try to hold the infection at bay. All the time during this his general health got worse. Finally, they did another bone marrow biopsy, and this showed that he had AML (Acute Myeloid Leukaemia). All treatment was stopped, and Tony came home early in March for end-of-life care and to spend time with his family. He passed away at home on the 19th March.

Tony and I always found the MDS site and newsletters really helpful and a clear source of information. My reason for sharing his story is to raise awareness of how neutropenic patients should be managed in A&E and to increase awareness in MDS patients that there is a standard, documented NHS process to ensure that neutropenic patients with any hint of infection should get really quick treatment. Patients and their caregivers should insist that staff follow this process. Clearly, not all A&E staff understand this or follow the protocol. I will always wish I hadn’t let them send us home that day in early December.

Pam