The Royal Marsden NHS Foundation Trust

4. Mrs S complains about the Royal Marsden NHS Foundation Trust’s (the Trust) decision to stop treatment to her son, L, in May and October 2024.

5. Mrs S says the Trust agreed to restart L’s treatment in October 2024 however, L was only given three more rounds of treatment before the Trust withdrew his treatment for a second time.

6. Mrs S also questions the Trust’s decision to stop L’s medication, temozolomide.

7. Mrs S says the stopping of treatment impacted her son’s quality of life dramatically and reduced his life expectancy. She says he was left permanently disabled and could not walk or talk. He deteriorated so much he was unable to go to school and was left in distress and unnecessary pain.

8. Mrs S says the impact to her and her family is they had to watch L deteriorate and become more and more poorly. She says both her and her husband had to stop working to care for L. She says she suffers from nightmares, is unable to sleep and continues to experience emotional, physical and financial distress.

9. Mrs S is looking for service improvements and financial remedy to resolve her complaint.

10. L was 13 years old and was diagnosed with a high grade glioma (a brain tumour that starts in the glial cells) in February 2022.

11. Between 14 March 2022 and 26 April 2022, L underwent radiotherapy alongside chemotherapy. The chemotherapy then continued from May 2022 to April 2023.

12. The Trust completed an MRI (magnetic resonance imaging scan) in June 2023 which showed the disease was progressing. The Trust decided on further chemotherapy between June and September 2023.

13. A further MRI in September 2023 showed the disease was still progressing.

14. The Trust began everolimus (an immunosuppressant medication) in October 2023 but this did not slow the progression of the disease and so the Trust prescribed L etoposide (a chemotherapy medication).

15. The Trust conducted an MRI in April 2024 which again showed the disease was progressing and the etoposide was stopped.

16. In July 2024, the Trust began to prescribe temozolomide (an oral chemotherapy medication). However, a further MRI scan on 9 October 2024 showed the disease was still progressing. The Trust stopped the temozolomide medication.

17. On 26 May 2025, L sadly died.

May 2024

22. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.

23. Mrs S has says the Trust should not have withdrawn her son’s treatment in May 2024.

24. We understand this was an immensely worrying time for Mrs S and her family so we recognise knowing her son’s treatment was being withdrawn must have been extremely difficult for her.

25. The Trust has told Mrs S, ‘L has an incurable high-grade glioma, he has undergone two rounds of surgery, radiotherapy and five lines of systemic chemotherapy. Unfortunately, there are no other treatment options available.’ The Trust said it had tried all ‘reasonable and available’ treatment.

26. L’s medical records show in February 2024 doctors noted L’s tumour had progressed. The Trust provided a oral etoposide, which he received for two months. However, an MRI scan in April 2024 showed L’s tumour was still progressing and the Trust made the decision to stop treatment.

27. L had an incurable high grade glioma. L’s medical records show he could not have a complete surgical removal of his tumour and our adviser explains this meant L’s disease was always incurable.

28. Our adviser added there is no guidance as to what treatment L should have received.

29. The Trust’s guidance says common treatment of high grade glioma is surgery, radiotherapy and chemotherapy. We know L received radiotherapy in March and April 2022; chemotherapy between March 2022 and September 2023 and October 2023 to May 2024; and had surgery, therefore the Trust had acted in line with this guidance.

30. Our adviser says as L’s tumour was progressing and all lines of treatment had been attempted, it was appropriate to stop treatment in this circumstance.

31. We consider, given L’s diagnosis and the progression of his tumour not slowing with the treatment being offered, the Trust was correct to stop treatment at this point. We have seen no indication of failings in the Trust’s decision.

32. We recognise what Mrs S, L, and their family were going through at this time. We hope she understands and is reassured the Trust tried all possible treatments but tragically, L’s tumour was not slowing or shrinking.

October 2024

33. Mrs S has also raised concerns about the Trust’s decision to stop treatment in October 2024. Mrs S also questions the Trust’s decision to stop the medication, temozolomide.

34. We understand how upsetting and troubling this would have been for Mrs S, especially as the Trust had only just reinstated treatment for L.

35. The Trust says L’s case was discussed in numerous MDT’s (multi disciplinary team meeting – where various doctors discuss cases together) and even with other hospitals the consensus (agreement) was there was no further treatment that could be offered to L.

36. L’s medical records show, following the withdrawal of treatment in May 2024, the Trust reassessed L’s case and agreed to try a treatment which had already been attempted before which was temozolomide. This began on 24 July 2024.

37. Our adviser says following the withdrawal of treatment in May 2024, the Trust could have either began to plan for palliative care or see if it was worth trying a treatment again which had already been provided. Whilst there is no guidance on this, we consider this was appropriate given L’s diagnosis and prognosis.

38. Sadly, following an MRI on 9 October 2024, the Trust noted L’s tumour was still progressing and stopped the temozolomide treatment as it was not having the intended effect.

39. The Trust had a further MDT with another hospital and it was agreed as the temozolomide was not working it was appropriate to stop and instead plan palliative (end of life) care, which is what happened.

40. We consider when treatment had stopped working in May 2024, the Trust agreed to start a treatment which had already been attempted as a last chance to see if this would help L. Regrettably, this did not help and we consider the Trust acted appropriately by deciding to stop further treatment at this point. We therefore consider there is no indication of a failing here.

41. Watching a child deteriorate and not receive further treatment is hard to imagine. We are deeply saddened to learn Mrs S and her family feel unable to move on with their life following their experience and loss. We recognise our decision may further impact their grief. We hope our consideration of these events gives them, in time, some explanation and reassurance.

1. We have carefully considered Mrs S’s complaint about The Royal Marsden NHS Foundation Trust (the Trust). We have seen no indication that anything went seriously wrong.

2. Mrs S has raised concerns about the Trust’s decision to stop treatment for her son, L. She specifically raises concerns about its decisions in May and October 2024. We consider on both occasions the Trust stopped L’s treatment, it did so because his high grade glioma was progressing. Sadly, as the high-grade glioma was incurable there was no reason for the Trust to continue treatment when it was not having an effect on the disease. We consider there are no indications of failing here.

3. We are saddened to learn of Mrs S’s experience and loss. We understand our decision may be unexpected and upsetting to Mrs S. We offer our sincere condolences to her and her family following L’s death. We hope she understands our decision is not intended to diminish her or her family’s experience. We thank her for bringing her complaint and sharing such a personal story with us, and giving us the opportunity to consider her concerns.