Birmingham Community Healthcare NHS Foundation Trust

5. Mrs O complains about the clinical care provided to E, by the Community Trust, in her final days of life. She says the Community Trust neglected E and this caused her death from cancer.

6. She also complains about the conduct of the nurses working for the Community Trust, who provided care in the final days of E’s life, particularly regarding their professionalism on the day she died. She says this was very distressing for her family.

7. She also complains an oncologist working for the Hospital Trust delayed in commencing a clinical trial and misled the family about this. She says these delays caused the cancer to spread to E’s bones and brain, and the clinical trial could have saved her life.

8. She would like both Trusts to acknowledge the failings in E’s care and compensate her for the impact these had.

9. E was three years old in November 2018 when she was diagnosed with a medulloblastoma. This is a very serious type of cancer which is aggressive can spread quickly. In E’s case, it had already spread to her spinal cord when she was diagnosed.

10. Medulloblastomas affect the part of the brain called the cerebellum, which is responsible for co-ordination and balance. They are usually diagnosed in young children under the age of 10, and account for 15-20% of all childhood brain tumours.

11. E was reviewed by the Hospital Trust’s oncology team following her diagnosis, and she commenced chemotherapy treatment on 19 November. She had five cycles of chemotherapy and, sadly, this treatment did not result in a full remission of her cancer.

12. In 2019, E travelled to another European country for proton therapy, which was completed in July 2019. This appears to have been a success in the short-term. Unfortunately, during a routine monitoring scan in October 2021, a relapse of her cancer was identified.

13. The Hospital Trust treated this relapse with surgery and E remained well until May 2022, when a further tumour was identified. She had further surgery and radiotherapy, which was completed in July 2022.

14. In October 2022, E began to experience more symptoms of her progressing cancer. These were managed by both oncology and palliative care teams, and included pain relief, steroids, and palliative radiotherapy. An MRI scan on 19 October showed her cancer had progressed further, spreading to her bones.

15. Following the MRI scan on 19 October, both chemotherapy and a clinical trial were discussed as options. Unfortunately, E was too unwell to engage with these treatments.

16. Sadly, E’s condition continued to deteriorate and she died at home on 4 January 2023. Her family were, understandably, devastated by this loss.

Community Palliative Care

19. The Community Trust met with Mrs O to discuss her concerns on 15 June 2023 and issued a written complaint response on 23 October. In its response, the Community Trust acknowledged the following areas where it felt the service it provided fell short:

• it did not explore whether E’s family would want her to be escalated to hospital or stay at home when approaching the end of her life • it did not include enough information on E’s advanced care plan about her family’s preferences for end-of-life care • the nurse did not seek advice from an on-call medical consultant the day before E’s death, which should have happened • it was inappropriate for a nurse to discuss drawing up a death certificate for a child who was still alive.

20. The Trust apologised unreservedly for these errors. It acknowledged how distressing it must have been for E’s family and outlined the following actions it has taken to prevent the same mistakes happening again:

• the nurse completed a reflective discussion with the Service Clinical Lead regarding her management of E’s care and received training on symptom management, palliative care skills, and communication skills • it reminded the Palliative Care Team to always ask families where they would like to be, discussing the options of home, hospice, or hospital • it has highlighted the importance of ensuring there is clearly documented communication between hospital and community services regarding a family’s preferences for end-of-life care, including when they want hospital-based care • it has reviewed and updated its children’s advanced care plan document to include a clearer format for communication around preferences during life and at end-of-life • all staff in the Palliative Care and Children’s Community Nursing Teams were given training on communication skills to support families better when a child approaches the end of their life • the Head of Service reviewed the Trust’s policies to ensure they reflected the requirement to access medical advice out-of-hours where there is no escalation plan, and a patient’s clinical presentation has significantly changed.

21. We consider the Community Trust’s actions in apologising to Mrs O and her family and putting meaningful service improvements in place are sufficient to put right the distress caused by its mistakes. Understandably, nothing can put right the distress arising from the death of a child. This situation would have been devastating even if no mistakes were made. We can only consider the distress caused by the mistakes acknowledged by the Community Trust, we cannot reasonably ask it to put right the unavoidable distress arising from such a tragic set of circumstances.

22. We have considered whether the Trust should compensate Mrs O for this distress and have decided that we are unlikely to recommend a meaningful financial payment if we were to undertake a detailed investigation into what happened.

23. With regards to whether E’s death could have been avoided, we asked our Oncology Adviser whether obtaining medical advice and providing oxygen could have prevented her death. They explained that, sadly, further advice and/or oxygen therapy the day before she died could not have prolonged E’s life, nor prevented her death.

24. We are satisfied the Trust appears to have taken meaningful action to put right the distress caused by its mistakes in the final days of E’s life. We cannot imagine how devastating it was for E’s family to lose her at such a young age, and we hope our work offers some reassurance that the mistakes acknowledged by the Trust do not appear to have caused E’s death.

Clinical Trial 25. The Hospital Trust issued a response to Mrs O’s complaint on 17 January 2024. It explained that following E’s MRI scan on 19 October 2022, which showed her cancer had progressed to her bones, the Trust discussed both clinical trials and chemotherapy with Mrs O. It made appointments with clinical trial doctors, but E’s condition needed to be stable before it could consider these treatments.

26. Our Oncology Adviser confirmed that, as a minimum, to participate in a clinical trial a patient must be expected to live for at least a further six weeks. Patients must also be medically fit to engage with the trial.

27. The Trust explained that in January 2023, E was reviewed by oncologists who noted she looked much improved. They discussed different options, and Mrs O was keen for the clinical trial to go ahead. However, the oncology team felt that E was unlikely to become well enough to be eligible for the trial.

28. Our Oncology Adviser explained that it was the appropriate course of action not to proceed with the trial at this stage in her illness because E was not medically fit and well enough to qualify for the trial.

29. Our Oncology Adviser also explained that even if E had been well enough to commence on the clinical trial, it could not have saved her life. It is likely that because she was a patient with multiple relapses of her cancer, the trial would have been in a very early phase. There would have been no expectation of a cure, but there may have been some temporary response to the trial.

30. We recognise that Mrs O had hoped this trial could have saved her daughter’s life, especially as she had previously experienced a remission from a relatively novel treatment abroad in 2019. We do not underestimate how heartbreaking it must have been when E was too unwell to engage with the trial.

31. The evidence indicates that it was appropriate not to offer the clinical trial when E’s condition was unstable. It also indicates that even if she had been well enough to engage, the clinical trial could not have saved her life. The most this likely could have achieved would have been a temporary response to the treatment; however, we cannot know, even on the balance of probabilities, whether or not this would have happened.

32. The evidence also indicates that not commencing the trial had no impact on the spread of cancer to E’s brain and bones. The MRI scan of 19 October 2022 showed this had happened before the clinical trial was discussed.

33. We cannot imagine how devastating these events were for Mrs O. The loss of a child is one of the worst things that any parent can experience and we offer our sincere condolences for her loss. We hope the oncology advice we have obtained helps to reassure Mrs O that there is no indication E’s death was avoidable, nor that any of the mistakes identified contributed to her death.

1. We have carefully considered Mrs O’s complaint about Birmingham Community Healthcare NHS Foundation Trust (the Community Trust) and Birmingham Women's and Children's NHS Foundation Trust (the Hospital Trust). We were very sorry to learn about the tragic death of Mrs O’s daughter, E, and we recognise how traumatic this set of circumstances was for her family.

2. We have decided not to take further action on Mrs O’s complaint. This is because:

• the Community Trust has apologised for the conduct of its staff in the final days of E’s life and taken meaningful action to prevent this happening again • the Community Trust has apologised that more care options were not discussed with the family in the final days of E’s life and that the nurse did not seek advice from an on-call medical consultant • the evidence indicates the shortfalls in E’s care during the final days of her life did not contribute to or cause her death • the evidence indicates it was appropriate that the Hospital Trust did not proceed with a clinical trial, and this trial could not have saved E’s life.

3. We understand why Mrs O has such serious concerns about whether the mistakes acknowledged by the Community Trust caused E’s death, and we do not underestimate the significant distress these caused.

4. We also acknowledge how much Mrs O was hoping that the clinical trial could have saved her daughter’s life, and how devastating it was that E was not well enough to commence this trial. Our decision in no way detracts from the impact these events had.