North Bristol NHS Trust

1. Mrs H complains about a lack of urgency in the actions taken by the Trust between receiving a referral for her son, Mr H, on 3 March 2023 and taking a biopsy on 17 May 2023. Specifically, Mrs H says the biopsy was delayed because the Trust failed to act in line with suspected cancer pathway timeframes or with any urgency, despite a large tumour found on MRI and multiple referrals from various areas.

2. The biopsy enabled diagnosis of a sarcoma, a rare cancer. Mr H was diagnosed on 18 May 2023 and he sadly died five weeks later, on 22 June 2023. Mrs H says if the diagnosis had been made sooner, Mr H may have been well enough to receive chemotherapy to prolong his life and could have had better pain management in his final months. She says Mr H lost the opportunity of choice and he suffered in pain, which in turn cause her immense distress to witness and has only compounded her grief.

3. To resolve her complaint, Mrs H would like the Trust to acknowledge its failings, apologise for the impact, and improve its services to prevent the same issues from happening again. She also seeks a financial payment in recognition of the impact of these failings.

9. Mr H was 22 years old at the time of these events. He had neurofibromatosis type 1 (NF1), a genetic condition that causes nerve tumours to grow on the skin. Mrs H tells us Mr H had lived with NF1 for the entirety of his life without problem, that he had never been under NF1 specialists, only paediatricians in childhood.

10. On 24 January 2023 Mr H informed his GP he had a lump and ongoing pain around his right knee. Mrs H tells us this pain had started in September 2022. GP records note Mr H had ongoing knee pain and an abscess at his right hip. The GP requested a knee X-ray and an urgent MRI scan for his leg pain.

11. On 21 February the X-ray reported no bone changes or fractures. On 1 March the MRI reported multiple soft tissue masses, in keeping with plexiform neurofibromas (tumours that develop due to NF1). The report recommended referral to the NF1 multidisciplinary team (MDT).

12. On 2 March Mr H’s GP practice sent a referral to the NF1 MDT, emailing this to the Trust’s neurospine inbox. The next day, the neuro/musculoskeletal MDT coordinator forwarded the referral to a consultant neurosurgeon, as the referral needed to go to the NF1 MDT.

13. On 15 March Mrs H called the GP practice to ask after the referral. The GP re-sent the same referral and asked for an update. The coordinator replied to say she had passed this on to a colleague, as the referral said it was for the NF1 MDT which is not covered by the inbox it had been sent to.

14. On 19 March Mr H called 111 and was referred to a treatment centre. He was subsequently seen at the Trust’s accident and emergency department (A&E) for his abscess, where he was discharged home with analgesia and follow-up with the NF1 clinic.

15. On 3 April a GP felt Mr H’s leg pain may be osteomyelitis (a bone infection) and arranged for him to be seen in A&E. He was seen by orthopaedics and discharged home.

16. The GP received an email from the neurosurgeon’s secretary on 5 April, confirming Mr H had an appointment at the next NF1 clinic on 2 May. The GP informed Mrs H, who had also received confirmation of an appointment for 6 April, having contacted the neurosurgeon’s secretary the day prior.

17. At the appointment on 6 April Mr H met with the consultant neurosurgeon, who felt Mr H’s right leg pain and weakness was most likely related to the largest of the tumours seen on MRI, in the right lumbar plexus (a network of nerves in the lower back). The consultant neurosurgeon planned for a focused MRI of that region, the likely need for tissue diagnosis to determine any evidence of malignancy (cancer), and input from a neurologist and national NF1 lead based at another Trust.

18. The consultant neurosurgeon’s secretary typed the letter to the NF1 lead on 11 April. Focused MRIs of the right hip and lower spine went ahead on 13 April and were reported on 27 and 28 April. Before those reports, Mr H attended a fracture clinic appointment on 17 April where his knee and hip were assessed. It was not felt there was any MSK origin for his problems and he was discharged from the MSK service.

19. At the NF1 clinic appointment on 2 May Mr H met with a consultant neurologist, who had discussed the recent MRI findings with the consultant neurosurgeon. The plan was for the consultant neurosurgeon to arrange a biopsy of the tumour and to first refer Mr H’s case to the sarcoma MDT for their view of the plan.

20. On 9 May, Mr H was admitted to the Trust for the biopsy, with records noting he presented with worsening mobility, worsening pain in his right leg and recurring right hip abscess. The sarcoma MDT met on 10 May and confirmed the plan for biopsy, but only after a PET scan was first completed. The PET scan was scheduled for 16 May.

21. The PET scan went ahead on 16 May, and biopsy was taken on 17 May. These investigations found widespread malignant disease, and a malignant tumour at the right pelvis. Mr H and Mrs H were informed of these findings on 17 May.

22. Mr H had a sarcoma clinic appointment on 23 May and met with a consultant clinical oncologist. The oncologist documented explaining that there were no treatments that could cure Mr H’s cancer, so the aim of palliative chemotherapy would be to improve symptoms and control the disease for as long as they were able. The oncologist gave Mr H written information about chemotherapy options and planned to meet one week later, when biopsy results would be available, to discuss options again.

23. Biopsy results were reported, and Mr H was given a histological diagnosis of high grade malignant peripheral nerve sheath tumour. At an oncology clinic on 1 June, histology results were discussed along with chemotherapy options. Mr H opted to commence palliative chemotherapy, with a plan to start in two weeks’ time.

24. Before chemotherapy started, on the morning of 14 June Mrs H found Mr H more lethargic than normal and she was later unable to wake him. Mrs H called an ambulance, and Mr H was taken to the Trust where it was felt he was very sadly entering the final stages of his life. Palliative care commenced, and very sadly, Mr H died on 22 June 2023.

28. Mrs H complains of a lack of urgency in the actions taken by the Trust between it receiving the GP referral on 3 March and taking a biopsy on 17 May. Having already set out the chronology of events in our earlier background section, we will now share our view on the timeliness of these actions in turn.

29. We start by clarifying that records show the Trust received the referral on 2 March. The GP made this referral on a routine basis, meaning it was submitted under the 18-week-wait pathway. NHS waiting time guidance says: ‘The maximum waiting time for non-urgent, consultant-led treatments is 18 weeks from the day your appointment is booked through the NHS e-Referral Service, or when the hospital or service receives your referral letter’.

30. As a result of the referral Mr H was booked into the next NF1 clinic on 2 May, just over nine weeks later. We know how concerned Mrs H was with the time Mr H had to wait at that point, and we recognise the efforts she made in contacting the Trust and the GP to find out about the date of Mr H’s appointment. We hope to assure her this was a reasonable and timely course of action. It was a consultant-led service specialising in Mr H’s longstanding condition, in line with the MRI reporting advice, and arranged within the applicable 18-week-wait pathway.

31. Mrs H explains the earlier appointment with the consultant neurosurgeon on 6 April was arranged because she had called and spoken with the neurosurgeon’s secretary the day before, sharing how unwell Mr H was. This earlier appointment expedited Mr H’s consultant-led care, although it remains that had he waited until 2 May this would have remained prompt and well within the applicable NHS waiting time guidance.

32. At the appointment on 6 April, having considered the earlier MRI findings, the consultant neurosurgeon planned for a focused MRI of the specific region in question. Our neurosurgical adviser confirms this was a reasonable next investigation, as this would allow for better visualisation of the area. MRIs of this region were taken seven days later, which was reasonably prompt. We know Mrs H has raised specific concern about the Trust failing to act with urgency considering the findings from the earlier MRI, yet we find evidence of appropriate and timely action taken in response to it at this time.

33. The consultant neurosurgeon also documented the likely need for a tissue diagnosis, noting this would be done ‘to determine if there is any evidence of malignant transformation’. This was the first point in time there was a consideration of suspected cancer for Mr H’s diagnosis. Our neurosurgical adviser confirms that from this date, Mr H’s patient pathway should therefore have been upgraded to a cancer pathway, and cancer tracking/national cancer standards should have applied. We cannot see that this happened, and we identify this as a failing. We explore this in more detail later in our report, after first completing our consideration of the chronology of events.

34. The focused MRIs were taken promptly, on 13 April. Our neurosurgical adviser confirms this timeframe would be considered prompt even in line with cancer pathways. However, these MRIs were not reported until 28 April, two weeks later. This was not prompt. Had Mr H been under suspected cancer pathways, this would have flagged the MRIs as needing expedited reporting.

35. A national NHS document published in August 2023 set a maximum turnaround of three days for imaging reports for suspected cancer. Although this guidance came into effect after the events in this case, our neurosurgical adviser says at the time of Mr H’s care just four months earlier, it remained reasonable to expect reporting within a few days of the scans being taken, had Mr H been under the cancer pathway. We again return to discuss this delay later in our report, after continuing our consideration of the chronology in full.

36. The NF1 clinic on 2 May was a prior arrangement which went ahead at the point the MRI reports were known. These reports were appropriately considered by both the neurosurgeon and neurologist. Their plan was for tissue biopsy, however in line with European guidelines, PET scan should have been the next reasonable step. Our neurosurgical adviser explains this is because biopsy can only target a specific area of tissue whereas PET can look at all tumours and better differentiate cancers from benign neurofibromas that have developed due to NF1.

37. That said, the neurosurgeon and neurologist appropriately referred Mr H’s case to the sarcoma MDT first, to gain its view of the plan. The MDT met eight days later, on 10 May. We do not know how frequently this MDT meets however our neurosurgical adviser says eight days even under suspected cancer pathways is not an unreasonable period.

38. The MDT agreed with the plan for biopsy, but only after PET scan. This was appropriate, in line with European guidelines. The PET scan went ahead six days later, and the biopsy was taken the following day. We again consider this a reasonably prompt timescale, even had Mr H been under the cancer pathway.

39. We hope the above can assure Mrs H that with just one exception, we consider all other actions taken by the Trust were appropriately prompt and timely, despite Mr H not having been upgraded to the cancer pathway from 6 April. It remains we find this a failing, and that as a result this led to the one exception, the delay in reporting upon the focused MRIs. Had Mr H been placed onto the appropriate cancer pathway, we think his timeline could have been brought forward by 11 days.

40. We know part of Mrs H’s concern was that Mr H’s care did not meet the required urgency outlined within cancer standards. NHS cancer waiting times guidance outline the three relevant cancer service standards that would have applied in Mr H’s case as follows: • In 75% of cases, there should be a maximum of 28 days from the date of upgrade onto the cancer pathway to the date the patient is informed of a cancer diagnosis; • In 96% of cases, there should be a maximum of 31 days from the decision to treat to the date the patient first receives definitive treatment; and • In 85% of cases, there should be a maximum of 62 days from consultant upgrade onto the cancer pathway to the date the patient first receives definitive treatment.

41. Mr H should have been upgraded onto the cancer pathway on 6 April, which is when the clock would have started for the first service standard above. The Trust informed Mr H and Mrs H of the PET scan findings of cancer on 17 May, 42 days later. Even without the 11-day delay we identify and considering we find all other actions to have been timely, this service standard would not have been met.

42. The first decision to treat was made at the sarcoma clinic appointment Mr H attended on 23 May. This is when the clock would have started for the second service standard above. Mr H consented to chemotherapy at the oncology clinic on 1 June and the plan was for this to start in two weeks’ time, reasonably on or from 15 June. This would have been 24 days after the decision to treat. Had this gone ahead as planned, this service standard would have been met.

43. However, with 6 April being the date the clock would have started for the third service standard, had Mr H’s treatment commenced as planned, this would have been 71 days later. This means the third service standard would not have been met, yet we think it reasonably could have been met, if not for the failing we have identified.

44. Whilst we can apply these to individual patient’s care, just as we have done above for Mr H’s case, these standards are designed to apply to an NHS trust at an operational level. Each trust must report against these standards and meet the associated percentage level of compliance – as outlined above, none of these are expected to be met 100% of the time. This therefore acknowledges that whilst these timeframes should be the aim, not every patient on a cancer pathway will meet them.

45. We consider Mr H’s care could have met the third standard, if not for the failing we identify. And yet, we find the first standard would not have been met even if not for the failing, as we find all other actions that were taken were timely. This demonstrates that whilst appropriate to aim to meet these service standards, Mr H’s journey was not unreasonable to have fallen outside of the aimed percentage rate. For the reasons explained, we are not directly critical of the Trust for not having met all three of these standards in Mr H’s case.

46. It remains that if Mr H had been upgraded onto the cancer pathway as he should, his timeline could have been brought forward by 11 days. We considered the impact of this very carefully. We know it is Mrs H’s view, that if the diagnosis had been made sooner Mr H may have been well enough to receive chemotherapy to prolong his life and could have had better pain management in his final months. She says as a result of this not happening, Mr H lost the opportunity of choice and he suffered in pain.

47. Our oncology adviser says whilst Mr H was sadly becoming more unwell as time was passing, on balance it appears he was well enough to receive palliative chemotherapy at the point the decision to provide it was made. We think it likely that if not for the failing, Mr H would have been well enough to start and receive at least one cycle of chemotherapy as per the plan made by the treating team.

48. Our oncology adviser explains there are different definitions of palliative chemotherapy, but the most effective is: ‘chemotherapy given with the aim of reduce a person’s symptoms rather than to change or reduce the cancer, or to prolong life’. They explain the main aim of palliative chemotherapy for people with the type of cancer Mr H had, is to achieve therapeutic benefit, meaning improvement in symptoms such as pain and mobility. Even in best effective cases, it sadly has only a marginal impact on the length of life.

49. In a study considering the role of palliative chemotherapy in people with the type of cancer that Mr H had, Kroep et al. reported in eight out of ten people palliative chemotherapy has no therapeutic benefit. Our oncology adviser explains that for most people, alongside palliative chemotherapy having no therapeutic benefit they also experience additional side effects of the chemotherapy. Our oncology adviser says in some people, palliative chemotherapy will very sadly bring their death forward in time due to side effects that are too strong for their body to heal.

50. Only in two out of ten people with this type of cancer is palliative chemotherapy found to shrink the tumour, giving the possibility of therapeutic benefit in symptoms. Even then, Kroep et al. report the median time the cancer would remain shrunk for is four months.

51. The World Health Organization supports a classification system, which categorises performance status as follows: ‘0able to carry out all normal activity without restriction 1restricted in strenuous activity but ambulatory and able to carry out light work 2ambulatory and capable of all self-care but unable to carry out any work activities; up and about more than 50% of waking hours 3symptomatic and in a chair or in bed for greater than 50% of the day but not bedridden 4completely disabled; cannot carry out any self-care; totally confined to bed or chair’

52. Considering what is documented about Mr H’s abilities as far back as his GP’s involvement, even before the referral into the Trust, our oncology adviser says this would equate to him having a performance status score of 2. This meant Mr H was marginal for his fitness to receive palliative chemotherapy when it was offered, sadly meaning it carried an associated lesser benefit.

53. Our oncology adviser explains that due to this, many oncologists would not have recommended palliative chemotherapy, because of how restricted Mr H’s mobility was by his cancer. In Kroep et al.’s study, only 9% of the people chosen for chemotherapy were as limited in their mobility as Mr H was. The huge majority were much less disabled by their cancer, whereas Mr H sadly appears to have been disabled in this way since February 2023.

54. Therefore, considering both Kroep et al.’s conclusions and Mr H’s performance status, even had palliative chemotherapy commenced as was planned, it was far more likely than not to have had no therapeutic benefit or to have caused additional side effects, and it sadly might even have hastened his death.

55. We know this will be very difficult for Mrs H to read. We hope to assure her we have considered all possibilities, including the less likely possibility that Mr H may have fallen within the two out of ten cohort of people who do experience tumour shrinkage with palliative chemotherapy. Even in this case, our oncology adviser explains in someone with Mr H’s restricted mobility and with a sarcoma in the trunk of the body rather than in a limb, tumour shrinkage is sadly rarer. Kroep et al. report the median length of time seen from any possible shrinkage in this case as just two months.

56. Our oncology adviser explains any possible therapeutic benefit such as with pain, was even less likely to have been achieved, and any material impact on prolonging life was very unlikely.

57. In summary, we do think if not for the failing we identify, that Mr H would have been well enough to have received at least one cycle of chemotherapy. We recognise this would have allowed him this opportunity of choice and the ability to have at least started the treatment offered to him. We think it would have avoided Mrs H’s distress, having been left not knowing whether this may have had a more significant impact on Mr H’s final months.

58. Yet, the evidence suggests it was very unlikely to have prolonged his life or reduced his pain as Mrs H has considered. Sadly, the evidence suggests it was much more likely to have had no impact or to have caused Mr H additional negative consequences and even potentially may have hastened his death. We cannot say even if palliative chemotherapy started, that Mr H would not have had the deterioration he did on 14 June.

4. We have carefully considered Mrs H’s complaint. We do not see any concern with the urgency or timeliness of the actions taken by the Trust, with one exception. We find the Trust failed to upgrade Mr H onto the cancer pathway at his appointment on 6 April. Had this been done, we think the two weeks Mr H waited to have his focused MRI scans reported later in April, would have been reduced by 11 days.

5. We think this would have shortened the timeline and Mr H’s diagnosis should have reasonably been made 11-days sooner. We think if not for this delay, Mr H would have received at least one cycle of palliative chemotherapy.

6. Sadly, we do not find evidence to suggest this would have prolonged Mr H’s life or enabled better pain management in his final months. Whilst it would have provided Mr H the choice to have received some chemotherapy treatment, we think it more likely than not it would have had no clinical impact and could possibly have caused him negative side effects.

7. Yet, we recognise knowledge of our decision will cause Mrs H otherwise avoidable distress. We partly uphold this complaint and set recommendations for the Trust to remedy this impact.

8. We know how deeply Mrs H and her family have been affected by these events, and by Mr H’s incredibly sad death both at the time, and still to this day. We hope our report fully explains the reasons for our decision and provides the family some resolution.

59. We make recommendations in line with our Principles for Remedy, which are reflected in NHS Complaints Standards. These state that where poor service or maladministration has led to an injustice or hardship, the organisation responsible should take steps to put things right.

60. In line with this, we recommend that by 5 January 2026, the Trust should write to Mrs H, to acknowledge the failing we have identified in not having upgraded Mr H onto the cancer pathway on 6 April, specially set out at paragraphs 33 and 34 of this report, and apologise to her for the impact this caused, as set out specifically at paragraphs 57 and 58.

61. NHS Complaints Standards state that public organisations should look for continuous improvement and use the lessons learnt from complaints to make sure they do not repeat poor service or maladministration.

62. In line with this, we recommend that by 5 March 2026, the Trust should produce an action plan to address the failing we have seen. It should identify the reason(s) for this failing (where possible), and explain what action it will take, or has already taken, to learn from and prevent a repeat of the failing. For each action it should state who is responsible for it, give a timescale, and explain how it will monitor this.

63. NHS Complaint Standards also state that if it is not possible for the responsible organisation to put things right, then they should compensate the person affected appropriately. In this case the injustice we find resulted from the failing is not as severe as Mrs H claimed, as we sadly consider it highly unlikely the outcome would have been any different or improved for Mr H. In the circumstances, we are satisfied the above recommendations are sufficient to put things right, and we do not consider it appropriate to make a recommendation for a financial remedy.

64. The Trust should provide a copy of the action plan to Mrs H. It should send us a copy of the action plan and the letter it sends to Mrs H. It should also send an anonymised copy of our final report and its action plan to the Care Quality Commission (send to informationsharing@cqc.org.uk) and NHS Improvement (send to enquiries@improvement.nhs.uk.