Kettering General Hospital NHS Foundation Trust

5. Mrs R complains about aspects of the care and treatment the Trust gave to her mother, Mrs G, between 8 May and 16 May 2023. Specifically, she says:

• The Trust failed to manage Mrs G’s condition appropriately, and delayed taking action to provide the appropriate treatment for her lymphoma and kidney failure, despite concerns being raised by the family.

• left-190500The Trust failed to communicate with the family about how unwell Mrs G was and tell them that she was imminently dying.

6. As a result, Mrs R says Mrs G prematurely died. She says the delays in the appropriate management and treatment of her conditions, including steroid administration, meant Mrs G could not access chemotherapy at the earliest opportunity. She also says the Trust’s lack of communication with the family meant they spent very little time with Mrs G before she died. She says this has left a void in hers and her family’s lives and has caused significant distress.

7. By bringing this complaint to us, Mrs R would like acknowledgement of failings, an apology, systemic improvements, and a financial remedy.

8. Mrs G was 70 years old when she was found by her family lying on the floor of her home on 8 May 2023. She had been in and out of hospital on several occasions in the weeks prior to 8 May and had undergone a lymph node biopsy for suspected cancer but had not yet received the results. Mrs G was taken to hospital by ambulance and was admitted following an assessment in A&E, presenting as acutely unwell. Mrs G and her family told the Trust she was HIV positive and that she had not taken her HIV medication (known as antiretroviral therapy – ART) for a month. Her ART was provided to the Trust but never administered. A do not attempt cardiopulmonary resuscitation (DNACPR) order was also put in place on the same day.

9. During 8 and 9 May, Mrs G underwent some tests to try and establish the cause of her presentation, and a referral was made to the haematology team for their input. Due to a lack of oversight and initial management of her potassium levels, a doctor noted that a patient safety incident report should be made but this was never done.

10. On 10 May, Mrs G’s biopsy results came back and it was confirmed she had a type of lymphoma known as diffuse large B-cell lymphoma (DLBCL), which is a fast-growing type of blood cancer. She was also confirmed to have developed Tumour Lysis Syndrome (TLS) on 10 May, and treatment for this was started. TLS is an oncological emergency caused by the rapid breakdown of cancerous cells leading to electrolyte imbalances in the blood that can be fatal. Common triggers for TLS can be the initiation of chemotherapy, corticosteroids, hormonal therapy and radiotherapy. In rare instances, this can also happen spontaneously. Mrs G’s TLS was spontaneous.

11. On 11 May, Mrs G was moved to the Trust’s haematology ward and following a conversation with her, a decision was made to remove her DNACPR order. A plan was made for Mrs G to start curative chemotherapy on 12 May, and she was given steroids in preparation for this.

12. On 12 May, Mrs G was too unwell to begin her planned chemotherapy treatment. Mrs G continued to deteriorate over the weekend, and her kidneys started to fail. On 14 May, a renal consultant suggested Mrs G required renal dialysis in the intensive care unit (ICU) and a referral was made. Mrs G was accepted by the ICU on 15 May at around midday but, due to bed availability, she was not admitted to ICU until around eight hours later. Dialysis was started during the early hours of 16 May and Mrs G sadly died a few hours later.

13. Mrs R made a complaint to the Trust on 26 June. She raised several concerns about the care given to Mrs G and was concerned her death was premature. The Trust provided a response to those concerns on 12 November. The Trust largely found no issues with the care provided but did identify some learning. Dissatisfied with its response, Mrs R brought her concerns to us in February 2024.

14. During our investigation, we told the Trust we had concerns about aspects of the care and treatment provided to Mrs G between 8 May and 16 May. The Trust reviewed what we told it and largely agreed with our concerns. The Trust started a patient safety incident investigation (PSII) under the patient safety incident response framework (PSIRF) in June 2025. The purpose of a PSII is to identify what happened and why so that this learning can be used to either prevent, or reduce the chances of, the same mistakes happening again. The Trust shared its findings with Mrs R and us in December 2025, following the conclusion of its PSII. We have looked at its contents in conducting our investigation.

18. We have set out a detailed background of the events relevant to this complaint between paragraphs 8 and 14 above to put the events in this complaint into context. Having done this, the following analysis only contains the information needed to explain our thinking. We have set out our thinking under separate sub-headings below, for clarity.

19. For each section, we consider the GMC’s ‘Good Medical Practice’ (the GMC Guidance) applies. The GMC Guidance sets out the professional standards expected of all doctors registered in the UK. It exists to protect patients, define professional standards, maintain public trust and support accountability.

20. It says clinicians must adequately assess a patient’s condition, taking into account their history, symptoms, and views, and must promptly provide or arrange appropriate advice, investigations, or treatment where necessary. They should consult colleagues when appropriate and ensure that patients are given the information they want or need in a way they can understand, while being considerate and sensitive to those close to the patient when offering information and support. Clinical records must be made as evidence of actions taken and should be clear, accurate, legible, and completed at the time of the consultation or as soon as possible afterwards. These records should include relevant clinical findings, decisions made, actions taken (and by whom), information provided to the patient, and details of any medication, investigation, or treatment given.

21. Where any other specific guidance or standards apply to a particular section, we have set out the full title and how we will refer to it.

Initial presentation and treatment

22. When Mrs G arrived at hospital on 8 May, her potassium, lactate, and CRP levels were very high. This was her second admission in recent weeks, and she was also under investigation for possible lymphoma (a biopsy was taken at the end of April and sent for testing). Mrs G and her family also told staff she was HIV positive, and they provided staff with her ART (we explore this further at paragraphs 70 to 81).

23. The clinical records also show staff noted that a referral to the haematology team was possibly required. During our investigation, the Trust told us that while it was noted that a referral to haematology was possibly required, this was not done because Mrs G did not have a confirmed lymphoma diagnosis, therefore there was no reason to ask haematology for their input.

24. With the benefit of hindsight, we know Mrs G had developed spontaneous TLS (paragraph 10) which can be fatal. Our physician adviser told us they would not expect general clinicians (such as those who were responsible for assessing and treating Mrs G on 8 May) to suspect spontaneous TLS given the absence of a confirmed high-grade lymphoma diagnosis or having started chemotherapy. However, they told us it is reasonable to expect haematology to have been involved from this day given the fact Mrs G was suspected of having lymphoma, and her overall presentation.

25. Our haematology adviser told us Mrs G’s situation was a medical emergency given her presentation (high potassium, lactate, and CRP levels). They told us these results should have prompted a review by a senior clinician, and a referral to haematology should have been made.

26. There is no evidence a senior clinician reviewed Mrs G on 8 May after she was transferred to the ward (although we recognise a senior clinician review did take place in the emergency department). We think a senior clinician review should have taken place after Mrs G was transferred to the ward given her condition and based on the advice we have received. We therefore consider this is not in line with the GMC Guidance and is a failing.

27. Further, although the Trust says it did not need to make a referral to haematology on 8 May because Mrs G had not yet been diagnosed with lymphoma (and was therefore not under the care of haematology), we think it was not in line with the GMC Guidance, and therefore a failing, not to do so. Although Mrs G did not have a confirmed lymphoma diagnosis, it was suspected. Staff on 8 May clearly thought haematology input was possibly warranted. Our physician and haematology advisers have both told us, as above, that referral to haematology was indicated. We also know Mrs G’s lymphoma diagnosis (DLBCL – the most common form of non-Hodgkin lymphoma) was not made until 10 May. However, the Trust made a referral to haematology on 9 May, which demonstrates that the lack of a lymphoma diagnosis was not a preclusion to making the referral.

28. We will revisit the impact of these failings later (paragraphs 102 to 116).

Duty of Candour

29. As well as the GMC Guidance, we consider the following guidance is applicable for this aspect of Mrs G’s care and treatment:

• CQC’s ‘Regulation 20: Duty of candour’ (the Duty of Candour Guidance)

30. The Duty of Candour Guidance says NHS organisations regulated by the CQC should be open and transparent with patients and their families when there has been a ‘notifiable safety incident’ in the provision of care provided to a patient. An incident qualifies as a ‘notifiable safety incident’ if it was unintended or unexpected, took place as part of a regulated activity, and in the reasonable opinion of a healthcare professional it already has, or might, result in death or severe or moderate harm to the patient.

31. We can see from Mrs G’s clinical records on the morning of 9 May that the doctor who reviewed her was concerned about the lack of handover, follow up blood tests, and general management of Mrs G’s case, given her serious condition. The notes say this was reported as a clinical incident on DATIX (an online tool for staff to report incidents and risks), which indicates the situation was thought to be serious. However, we have not seen any evidence the DATIX report was made beyond the reference in this entry.

32. Additionally, there is no evidence in the clinical records that Mrs G or her family were told about this safety incident either at the time of events or later during the complaints process. For us to consider the Trust to have acted in line with the guidance set out above, we would expect there to be evidence of a DATIX report being made, and that Mrs G and her family had been informed. Further, we think the Trust should have identified this safety incident (and subsequent error to report and inform) and told the family during the complaints process.

33. With this in mind, we consider the Trust failed to act in line with the Duty of Candour Guidance and the GMC Guidance. We therefore consider this to be a failing. We will revisit the impact of this later (paragraphs 102 to 116).

Blood tests

34. As well as the GMC Guidance, we consider the following guidance is applicable for this aspect of Mrs G’s care and treatment:

• Jones GL et al. ‘Guidelines for the management of tumour lysis syndrome in adults and children with haematological malignancies on behalf of the British Committee for Standards in Haematology’ (the TLS Study)

35. The TLS Study says the management of TLS requires a multidisciplinary approach with the involvement of haematologists (blood specialists), nephrologists (kidney specialists), and intensive care physicians (specialists in the care of critically ill patients). If the facilities and, or, resources are not available locally for intensive management and monitoring, consideration should be given to the transfer of the patient to a high dependency facility or haematology centre.

36. The Trust gave Mrs G treatment for her high potassium and lactate on 8 May. However, we can see from the clinical records that the Trust did not repeat its blood tests on 8 May to check on the effectiveness of the treatment it had administered. On 9 May, Mrs G’s lactate was still elevated and had not responded to treatment.

37. Our haematology adviser told us the lack of repeat blood tests during this 24-hour period, particularly when treating high potassium, is concerning. Further, they told us elevated lactate can represent low oxygen supply or, as turned out to be the case, high-grade lymphoma such as DLBCL. They told us the lactate result on 9 May warranted investigation, and ICU admission should have been considered or, at the least, ICU should have been notified that their input may be required given Mrs G’s deteriorating condition. However, there is no evidence in the clinical records that this result was acknowledged, investigated further by staff, or further consideration given to it.

38. On 10 May, the haematology team recommended eight-hourly blood tests be carried out to monitor Mrs G’s condition. However, while the clinical records show these were carried out on 11 May, they did not continue and the frequency dropped to daily until 15 May (with the exception of 12 May when there is no evidence that Mrs G underwent any blood tests). Our haematology adviser told us this was not enough given the haematology team’s recommendation and Mrs G’s deteriorating condition.

39. As such, we consider the above shows staff did not act in line with the TLS Study or the GMC Guidance because it did not repeat blood tests on 8 May, take further action regarding the lactate result on 9 May, or conduct the eight-hourly blood tests. We consider these to be failings. We will revisit the impact of this later (paragraphs 102 to 116).

Monitoring

40. As well as the GMC Guidance, we consider the following guidance is applicable for this aspect of Mrs G’s care and treatment:

• Jones GL et al. ‘Guidelines for the management of tumour lysis syndrome in adults and children with haematological malignancies on behalf of the British Committee for Standards in Haematology’ (the TLS Study) • BJH study, Fox CP et al. ‘The management of newly diagnosed large B-cell lymphoma: A British Society for Haematology Guideline’ (the Lymphoma Study)

41. The TLS Study says the management of TLS requires a multidisciplinary approach with the involvement of haematologists (blood specialists), nephrologists (kidney specialists), and intensive care physicians (specialists in the care of critically ill patients). If the facilities and, or, resources are not available locally for intensive management and monitoring, consideration should be given to the transfer of the patient to a high dependency facility or haematology centre. It also says patients with a potassium level of equal to or greater than six, or those who have had a 25% increase in their potassium levels, should have cardiac monitoring. It also says a person’s electrolytes should be carefully monitored (in this case monitored via blood tests). Electrolytes are salts and minerals in the body (such as calcium, potassium and phosphate) that carry an electrical charge and are essential for nerve, muscle, and fluid balance.

42. The Lymphoma Study says patients should be offered a corticosteroid in the ‘pre-phase’ before chemotherapy in patients who are adversely affected by their lymphoma.

43. As mentioned earlier, staff recognised on 9 May that Mrs G had not been properly monitored, amounting to a patient safety incident (paragraphs 29 to 33). A referral was also made to the haematology team (paragraph 25) for their input in Mrs G’s care.

44. The haematology team reviewed Mrs G on 10 May and quickly identified that she was suffering from spontaneous TLS. The haematology team recommended the commencement of medication to try and treat her TLS (we explore this at paragraphs 52 to 63 below) and regular blood tests at an eight-hourly frequency (paragraph 38). She was also moved to a specialist haematology ward on 11 May and a plan was made to start Mrs G on curative chemotherapy from 12 May. Mrs G was given steroid treatment on 11 May to treat her lymphoma.

45. Our haematology and ICU advisers told us TLS is a serious condition which requires close monitoring and timely, effective treatment. Although the TLS Study does not say all patients should be moved to the ICU or high dependency unit, our haematology and ICU advisers told us Mrs G required close monitoring given her presentation and condition. This is because of her TLS, comorbidities, acute kidney injury, and potassium and lactate readings. Both advisers agree Mrs G would have received the closest monitoring in the ICU (or high dependency unit). However, our ICU adviser told us Mrs G did not require organ support on 10 May, and neither her blood pressure, heart rate or level of consciousness indicated ICU admission was definitely necessary.

46. Our haematology adviser also told us that when a plan was made to provide Mrs G with curative chemotherapy from 12 May, she required steroid treatment in preparation for this. She received these steroids on 11 May. They told us this treatment was appropriately administered (as per the Lymphoma Study) but steroid treatment can exacerbate TLS. Therefore, they told us it was even more important from 11 May that Mrs G was closely monitored.

47. We acknowledge the Trust says it moved Mrs G to its haematology ward on 11 May following the TLS diagnosis. It says staff on this ward had the tools and resources to be able to provide Mrs G with the treatment she required. It says ICU admission was therefore not necessary at that time.

48. There is no doubt that the ICU would have provided Mrs G with the closest form of monitoring and treatment. However, the TLS Study and the GMC Guidance allows for clinicians to decide on the best place to closely monitor a patient depending on various factors.

49. We note there is a lack of documentation across the 12, 13 and 14 May demonstrating what actions were being taken when, and what considerations were being made. We think this reflects the lack of monitoring and care being given to Mrs G.

50. Mrs G’s conditions included spontaneous TLS, low calcium, high potassium and phosphate, and worsening renal function. Our haematology and ICU advisers told us closer monitoring of Mrs G would have involved monitoring her electrolytes, renal function, heart rate and rhythm, and fluids. While the Trust asserts that the correct care and monitoring could be given on the haematology ward (therefore underpinning its view that ICU admission was not necessary) the evidence shows this did not happen.

51. With this in mind, we consider staff were not acting in line with the TLS Study or the GMC Guidance and think this is a failing. We will revisit the impact of this later (paragraphs 102 to 116).

TLS medication

52. As well as the GMC Guidance, we consider the following guidance is applicable for this aspect of Mrs G’s care and treatment:

• Jones GL et al. ‘Guidelines for the management of tumour lysis syndrome in adults and children with haematological malignancies on behalf of the British Committee for Standards in Haematology’ (the TLS Study) • BNF ‘Allopurinol’ (the BNF Guidance)

53. The TLS Study refers to two different medications Mrs G received during her admission. Those medications are rasburicase and allopurinol. Rasburicase is used to manage uric acid levels in a person by helping to clear uric acid from the blood quickly. Allopurinol reduces the production of new uric acid which means a person’s uric acid level will reduce over time. Controlling uric acid levels is important because it indirectly helps control potassium, phosphate, and calcium levels in the blood by helping keep the kidneys working, preventing kidney injury, and reducing the need for dialysis.

54. The TLS Study says patients with established TLS should be given rasburicase at a dose of 0.2mg/kg/day (unless it would be harmful to do so, such as due to an allergy). It says rasburicase should be given for three to seven days, with careful monitoring and management of a person’s electrolytes, and the duration of this treatment should be determined by the clinical response of the patient. Both medications can be used as a prophylactic at a lower dose with the intention of preventing disease for patients who do not have established TLS but are at risk of developing it. The TLS Study says rasburicase and allopurinol should not be given at the same time and, if allopurinol is given, this should be at least 24 hours after the last dose of rasburicase. It also says patients with a potassium level of equal to or greater than 6, or those who have had a 25% increase in their potassium levels, should have cardiac monitoring.

55. The BNF Guidance recommends that patients with renal failure are not given doses of allopurinol exceeding 100mg. This is because the kidneys cannot clear allopurinol from the system properly, increasing the likelihood of harmful effects from drug accumulation.

56. The haematology team recommended Mrs G be started on rasburicase on 10 May after they identified she had established TLS. She was given 19.5mg on this day and the rasburicase worked to good effect, reducing her uric acid levels to normal levels by the next day. She was given three further doses on 12 May (3mg), 14 May (3mg), and 15 May (20mg). No rasburicase was administered on 11 or 13 May.

57. On 11 May, 300mg of allopurinol was prescribed to be given daily until 15 May. However, we can only see evidence that 300mg of allopurinol was given once, on 11 May.

58. Our haematology adviser told us that while Mrs G’s uric acid levels dropped to normal levels after the first dose of rasburicase she continued to deteriorate clinically. Specifically, Mrs G’s renal function was still impaired (and worsening), and her calcium and phosphate levels were outside of the normal ranges. They told us this shows Mrs G’s TLS was not controlled, she was not getting better, and rasburicase should have continued in line with guidelines and the clinical picture, without skipping any days. They also told us that while the doses of rasburicase given on 10 and 15 May were broadly appropriate (Mrs G’s weight was recorded as being 111kg), the doses given on 12 and 14 May were too low.

59. It appears that staff gave Mrs G the prophylactic dose of rasburicase on 12 and 14 May (3mg). However, we think this dose should only be given as a prophylactic in cases where a patient does not have established TLS, as per the TLS Study. As explained earlier, Mrs G had established TLS.

60. We also have concerns about the decision to prescribe and administer 300mg of allopurinol.

61. Our haematology adviser told us rasburicase and allopurinol should not be administered together or concurrently because of how they each work respectively. This is because both drugs work at cross-purposes and, when used concurrently, their efficacy can be reduced, with an increased risk to renal function. As above, the TLS study recommends not administering the two drugs concurrently, and says allopurinol should be given at least 24 hours after the last dose of rasburicase. The BNF Guidance also says the dose of allopurinol should not be above 100mg in patients with renal failure, such as Mrs G.

62. With the above in mind, we consider staff failed to administer rasburicase and allopurinol correctly, based on the TLS Study, the BNF Guidance, and Mrs G’s clinical presentation. This meant staff were not acting in line with the GMC Guidance because the appropriate assessment and treatment were not provided.

63. Therefore, we consider the Trust’s administration of rasburicase and allopurinol to be failings. We will revisit the impact of this later (paragraphs 102 to 116).

ICU

64. As well as the GMC Guidance, we consider the following guidance is applicable for this aspect of Mrs G’s care and treatment:

• Jones GL et al. ‘Guidelines for the management of tumour lysis syndrome in adults and children with haematological malignancies on behalf of the British Committee for Standards in Haematology’ (the TLS Study) • Intensive Care Society’s and Faculty of Intensive Care Medicine’s joint ‘Guidelines for the Provision of Intensive Care Services’ (the GPICS Guidance)

65. The TLS Study says the management of TLS requires a multidisciplinary approach with the involvement of haematologists (blood specialists), nephrologists (kidney specialists), and intensive care physicians (specialists in the care of critically ill patients).

66. The GPICS Guidance is strongly recommended guidance and generally followed by critical care providers. This says admission to the ICU should be made within four hours of the decision being made to admit the patient. It also says if the ICU is over capacity, there should be procedures in place to overcome this.

67. We can see from the clinical records that the first time ICU admission was considered was in the evening of 14 May due to Mrs G’s continuing deterioration, and a referral was made. However, the ICU team did not accept her initially. On 15 May, the ICU team decided around midday to accept her for admission. However, Mrs G was not admitted to the ICU until around 8 hours later. This is because there were no beds available in ICU, and it was already over capacity.

68. Our ICU adviser told us Mrs G would have benefitted from admission to ICU in the late evening of 14 May at the latest, given her condition at that time. In the early hours of 15 May, there is a note in the clinical records which says Mrs G cannot be treated on ICU due to bed capacity and that she was strictly to receive ward-based management. Our ICU adviser said this is concerning because it was not the case that Mrs G did not meet ICU admission criteria but rather, due to bed capacity, she was to receive a lower standard of care on the ward. Further, they said the delay between the ICU team’s decision to accept Mrs G at midday on 15 May, and her admission eight hours later, was unacceptable.

69. With the above in mind, we consider the Trust did not act in line with the TLS Study, the GPICS Guidance, or the GMC Guidance and because of this, it subsequently failed to admit Mrs G at the earliest opportunity and there was an unacceptable delay. We consider this to be a failing, although we recognise that capacity issues such as those present in this case, and any procedures in place surrounding this, are often outside the control of front-line staff. We will revisit the impact of this later (paragraphs 102 to 116).

HIV care and treatment

70. As well as the GMC Guidance, we consider the following guidance is applicable for this aspect of Mrs G’s care and treatment:

• BHIVA’s ‘Guidelines for HIV-associated malignancies 2014’ (the BHIVA HIV-associated Malignancy Guidance) • BHIVA and ICS’s, ‘Intensive Care Society (ICS) and British HIV Association (BHIVA) statement on considerations for critical care for people with HIV during COVID-19’ (the HIV Critical Care Guidance) • BHIVA ‘Guidelines on antiretroviral treatment for adults living with HIV-1 2022’ (the BHIVA HIV Guidance)

71. There is some overlap between the BHIVA HIV-associated Malignancy Guidance, the HIV Critical Care Guidance, and the BHIVA HIV Guidance. From this point, we will collectively refer to them as ‘the HIV Guidance’. In summary, the HIV Guidance says:

• Maintaining uninterrupted ART is essential for patients with HIV to prevent viral rebound (a resurgence of viral load after a period of suppression), development of viral resistance (when the HIV virus mutates, causing the drug being used to become ineffective), immune deterioration (gradual weakening and damage of the immune system), and the development of opportunistic infections (such as pneumocystis pneumonia, PCP – a serious lung infection that typically affects those with a weakened immune system). All these things can happen even with short term interruptions to treatment.

• ART should be given to patients with HIV-related cancers in a timely way.

• HIV treatment should not be interrupted even in the event of significant deterioration or critical illness (including COVID-19).

• ART can be modified where critical care is required. This could occur due to possible interactions that may occur between ART and any other medication required to provide critical care, due to organ dysfunction, or formulary modification. This applies even in the setting of acute kidney injury, haemofiltration, and dialysis.

• All patients should be discussed with a HIV team if possible, including a specialist HIV pharmacist.

• Antimicrobials (medicines that kill or inhibit the growth of microorganisms such as bacteria and viruses) should be given to prevent opportunistic infections such as PCP. Prophylactic antimicrobials should be administered when the CD4 count is lower than 200/mm3 (and higher CD4 counts if patients are due to start chemotherapy).

72. During our investigation, the Trust placed significant weight on Mrs G’s HIV status and how this may have contributed to her death. In particular, it told us she had a high viral load and a low CD4 count. Because of this, we have considered the Trust’s management and treatment of Mrs G’s HIV.

73. When Mrs G was admitted on 8 May, her family made staff aware that they had just found out she was HIV positive and she had not taken her HIV medication for around a month. They also provided staff with Mrs G’s HIV medications, also known as ART. ART is a combination of medications used to treat HIV, helping to reduce a person’s viral load (the number of HIV particles present in a person’s blood) and maintain a healthy immune system. While ART does not cure HIV, it significantly reduces a person’s viral load, allowing them to live long, healthy lives and minimising the risk of HIV transmission to others.

74. Two important things to consider in the management of HIV-positive patients is their CD4 count and their viral load. A person’s CD4 level indicates how effective their immune system is, whereas a person’s viral load illustrates how many HIV particles are present in a person’s blood. The lower a person’s CD4 count is, the less effective their immune system is. In people with HIV, a low viral load indicates their HIV treatment is effectively suppressing the HIV virus. A low viral load is below 200 copies/ml, whereas a viral load below 20 copies/ml is categorised as ‘undetectable’ and therefore controlled.

75. On 8 and 9 May, the Trust took steps to assure itself of Mrs G’s HIV status by carrying out HIV-related tests such as a CD4 count, HIV viral load test, and by contacting a local provider to try and establish if they were overseeing her treatment for HIV. This was so the Trust could establish what her treatment plan was. The Trust told the family at the time it would not administer ART until it had confirmed Mrs G’s HIV status. During the complaints process, the Trust told the family it did not receive the confirmed HIV diagnosis until 19 May, which was after Mrs G died.

76. When the local provider confirmed on 9 May they had no record of Mrs G being under their care for HIV, staff noted they would make further enquiries elsewhere the following day. However, there is no evidence that this happened. On 12 May, the results of Mrs G’s CD4 count showed she had a CD4 count of 130/mm3 which is very low and indicative of a severely weakened immune system. When a person’s CD4 count is lower than 200/mm3, there is a very high risk of infection. On 15 May, Mrs G’s viral load was confirmed as being 91 copies/ml which is low, but not ‘undetectable’. Staff spoke with an HIV specialist and ART was prescribed at this point, but it was not administered.

77. Our HIV adviser told us it was reasonable for the Trust to carry out initial HIV-related tests and make enquiries despite the patient confirming her HIV status and providing it with her HIV medication. However, they told us the Trust should have made more enquiries (for example with Mrs G’s GP and specialist units such as those it planned in the clinical records to contact) and had discussions with HIV specialists at the Trust. They also told us the Trust should have administered ART and antimicrobials as prophylaxis because Mrs G’s CD4 count was very low.

78. The HIV Guidance says it is important ART is uninterrupted because if not it can cause complications for patients such as those described at paragraph 71. Critical care should not be a barrier to a patient receiving ART and our HIV adviser says that the Trust, knowing all it did (confirmation from Mrs G and the family, presentation of ART, and a ‘reactive’ HIV result it would have received locally before sending the sample to the external specialist laboratory for confirmation), should have prescribed ART sooner than 15 May. This should then have been administered without delay. They told us that while ART can negatively interact with many drugs that patients who are acutely unwell may receive, modifications can be made to allow all necessary treatments to be carried out. As such, it is important that discussions with HIV specialists occur promptly.

79. In other words, Mrs G’s other health conditions (such as her TLS) should not have delayed or prevented the Trust from starting Mrs G back on ART.

80. Additionally, our HIV adviser told us the Trust should have considered the need to start Mrs G on prophylactic antimicrobials to prevent the most common opportunistic infection in the UK, PCP, (or other infections) during her admission. PCP is a significant risk for HIV patients with a low CD4 count. Our HIV adviser said the need to consider and prescribe this became more acute when Mrs G’s CD4 count was reported as 130/mm3 on 12 May, which is under the threshold of 200/mm3 as per the HIV Guidance. They told us this result should have been discussed with an HIV specialist at the time. There is no evidence in the clinical records that this happened.

81. We consider the above demonstrates the Trust did not act in line with the GMC Guidance or the HIV Guidance. As such, we consider the Trust’s lack of further enquiries and discussion with HIV specialists, and its lack of ART and prophylactic antimicrobial administration to be failings. We will revisit the impact of this later (paragraphs 102 to 116).

Communication

82. As well as the GMC Guidance, we consider the following guidance to also be applicable for this aspect of Mrs G’s care and treatment:

• NMC’s ‘The Code’ (the NMC Guidance) • NICE’s Quality Standard 15, ‘Patient experience in adult NHS services’ (the NICE Guidance)

83. The NMC Guidance says nurses should keep clear and accurate records relevant to their practice, making them either at the time or as soon as possible after the event.

84. Quality statement 5 of the NICE Guidance says people using adult NHS services should have their preferences for sharing information with their family members established, respected, and reviewed throughout their care.

85. Mrs R complains the Trust did not communicate to her and the family how unwell Mrs G was or that she was imminently dying. She says examples of this include when she and the family told staff they felt Mrs G was drowsy on 13, 14 and 15 May but staff dismissed these concerns. She also says the Trust delayed telling them when Mrs G’s National Early Warning Score (NEWS) reached 10 on 15 May. NEWS is a standardised scoring system used to determine the degree of illness of a patient, and prompts intervention where required.

86. We have seen evidence Mrs G had capacity to make her own decisions, and she told staff early on in her admission that she wanted information shared with Mrs R. There is evidence staff spoke with Mrs G about her condition, treatment and her family but there is a lack of detail, so it is not possible to establish what she was told, or what her input was.

87. We can see evidence that Mrs G and her family were involved in discussions about, and provided consent for, her starting curative chemotherapy. However, there is no evidence of further discussions with the family about Mrs G’s condition (such as at the time of her lymphoma diagnosis), the likelihood of her dying, her progressive deterioration over subsequent days, or when the ICU became involved on 15 May.

88. Mrs R says she and her family tried to highlight to staff that Mrs G was drowsy across 13, 14 and 15 May, and that these concerns were dismissed. In the clinical records, we can see staff had noted Mrs G as being sleepy and drowsy, but not that this was being highlighted by the family. We can also see that Mrs G’s NEWS was documented as being 10 at 5.30pm on 15 May, which was during the period when she was not transferred to ICU due to capacity (paragraph 68). A NEWS of seven or more can indicate a patient is seriously unwell and needs intervention.

89. The Trust said in its complaint response that it found no evidence in the clinical records that the family had been raising concerns about Mrs G’s drowsiness. It said there were three entries in the clinical records relating to Mrs G’s sleepiness but that when reviewing her observations, it found she was always alert except for when she was transferred to the ICU on 15 May. It said it was sorry it could not address this aspect of Mrs R’s complaint more directly, but that staff would be reminded of the importance of effective communication and thorough documentation.

90. With regard to the NEWS, the Trust said the NEWS was documented as 10 mainly due to an abnormal blood pressure reading. However, it said when Mrs G’s observations were repeated 15 minutes later, her NEWS was four.

91. It is not possible for us to know exactly what Mrs R and her family discussed with staff about Mrs G’s drowsiness, how these discussions played out, or in what way their concerns were dismissed.

92. Due to the lack of information in the clinical records, we do not know what, if anything, staff did with this information beyond recording Mrs G’s sleepiness in the records. We have already commented earlier in this report about the lack of management and care provided to Mrs G across these dates and, as such, we will not repeat this here. That said, we know from the limited evidence available that staff had concerns about Mrs G’s condition over the weekend and there is no evidence that they kept the family informed of this. For example, the first referral to ICU was made on 14 May due to Mrs G’s kidneys failing and, on 15 May, a doctor noted that Mrs G was so metabolically unwell that her heart could stop. The family were not made aware of either of these instances.

93. With regard to the NEWS, our physician adviser told us it is only a small part of a patient’s presentation, and the overall clinical picture needs to be taken into account. Mrs G’s NEWS was high at 5.30pm but, this did come down significantly 15 minutes later. We do not consider staff needed to notify Mrs R as soon as a NEWS of 10 was identified.

94. On 16 May, Mrs G contacted the Trust at around 6am to ask for an update on Mrs G’s condition. She was told Mrs G was more alert and was being considered for breakfast. Mrs R told us this surprised her and was unexpected, particularly given how she had appeared over that weekend. However, less than two hours later, the Trust contacted Mrs R and told her Mrs G had deteriorated.

95. At this time, it is documented in Mrs G’s clinical records that she was in multi-organ failure, deteriorating rapidly, and that her tumour may be spontaneously breaking down. It is documented that Mrs G was still not strong enough for chemotherapy and that treatment should be withdrawn. The clinical records indicate a conversation was had with the family about this at 9am, shortly after Mrs R and her brother arrived at the hospital, and they agreed with the withdrawal. Mrs R says Mrs G died a matter of minutes later, rather than the official time of death that was recorded as being around 10.30am. She wished for this distinction to be made in our report.

96. With the above in mind, we do not consider the Trust always acted in line with the GMC’s ‘Good Medical Practice’, the NMC’s ‘The Code’ or NICE’s Quality Standard 15 ‘Patient experience in adult NHS services’. This is because there is no evidence detailed discussions took place between staff and Mrs G and her family, except for when they discussed starting curative chemotherapy, and on the day she died.

97. We have seen no evidence the family were aware of how unwell Mrs G was between 13 and 15 May, but we know they were concerned. Mrs G’s condition was discussed with the family on 16 May, and she died very shortly after.

98. With the above in mind, we consider this to be a failing and we will consider the impact of this later (paragraphs 117 to 120).

Impact

99. We consider we have found the following failings:

• Staff missed the opportunity to make a referral to haematology for advice on 8 May.

• There was a lack of review by a senior clinician on 8 May on the ward.

• Blood tests on 8 May were not repeated for 24 hours.

• A failure to be open and transparent about a notifiable safety incident as per the Duty of Candour on 9 May.

• High lactate result on 9 May was not acknowledged or investigated further.

• Mrs G was not closely monitored from 9 or 10 May (we think this should have started on 10 May at the latest), or after steroid treatment was commenced on 11 May which can exacerbate TLS.

• Rasburicase was not administered in line with Mrs G’s clinical presentation and should have been given in line with the guidance we have set out.

• Allopurinol was prescribed and administered when it should not have been (and at an incorrect dose), based on Mrs G’s clinical presentation and the guidance we have set out.

• Staff did not make all the appropriate enquiries it should have regarding Mrs G’s HIV.

• Staff did not administer ART to Mrs G.

• Staff did not administer antimicrobials to Mrs G.

• The 8 hourly blood tests were not carried out as recommended between 10 and 15 May.

• ICU admission was delayed for eight hours.

• There was a lack of communication with Mrs G, Mrs R and their family about Mrs G’s condition.

100. Mrs R told us when she first brought her complaint to us that the Trust’s poor care and treatment led to Mrs G’s avoidable death and that her experience was heartbreaking. As explained in the ‘Background’ section of this report (paragraphs 8 to 14), we told the Trust we had concerns about aspects of the care and treatment it provided. This prompted the Trust to carry out its PSII. As explained, we have looked at its contents in conducting our investigation. In short, the Trust’s PSII told us and Mrs R that it did not think any failings in care ‘obviously’ led to Mrs G’s death.

101. We have set out our view on the impact of the failings we have found, under sub-headings below.

Care and treatment

102. We think the Trust missed several opportunities to provide the correct treatment for Mrs G’s conditions. During our investigation, the Trust’s PSII highlighted many of these conditions as being possible causes and contributory factors for her death.

103. Specifically, it told us:

‘Studies support that spontaneous TLS is a rare but very serious complication that can occur in people with aggressive blood cancers such as DLBCL…Research indicates that TLS in HIV-related lymphoma can cause a very rapid and severe deterioration, with deaths sometimes occurring within days of diagnosis…cancer cells releasing toxins into the bloodstream, combined with the effects of HIV and a high viral load, which can make recovery much more difficult…despite the treatment being provided in the intensive care unit, the development of multiple organ problems, ongoing or new infections, and potential chances of reduced blood flow to important organs greatly lowers the chances of recovery.’

104. It also said in closing:

‘…tumour lysis syndrome and aggressive lymphoma inherently carry a significant and often unpredictable risk of morbidity and mortality. In [Mrs G’s] situation, her rapid and profound clinical deterioration was driven largely by the natural progression of these conditions. Tumour lysis, the severity of her lymphoma, a markedly elevated viral load, evolving multi-organ failure, possible new sepsis despite treatment, and organ ischaemia all contributed to a clinical picture in which [Mrs G’s] outcome was not obviously avoidable, even with optimal care…considering the risks associated with her underlying medical conditions.’

105. We consider that if Mrs G had received the correct care and treatment for her conditions she would likely (more than 50% chance) have survived beyond 16 May after considering the evidence available, including advice from our haematology adviser and ICU adviser. This means we also think she would potentially have been well enough to start her chemotherapy which, as we explain, may have prolonged her life, even if it had not cured her cancer.

106. We explain why below, with reference to the clinical advice we have received.

107. Our haematology adviser told us:

• Mrs G had a specific subtype of DLBCL which is curable in 30% to 40% of cases but even without cure, treatment can prolong life in the longer term.

• When Mrs G’s family felt she was drowsy over the weekend (13 and 14 May), this was likely indicative of her kidney failure.

• If treated correctly, Mrs G would have received intravenous (IV) hydration, cardiac monitoring (monitoring heart activity), and renal replacement therapy (such as dialysis) much sooner than she did. Her electrolytes, pH (the measure of how acidic a person’s blood is), and lactate (a substance produced by the body when oxygen levels are low) should have been properly monitored and reacted to.

• Had the appropriate monitoring and treatment for TLS been provided, Mrs G would likely have lived beyond 16 May and been able to start her chemotherapy. She may well have survived longer term (depending on her reaction to chemotherapy).

108. Our ICU adviser told us:

• Mrs G was left with profound metabolic acidosis and high potassium, as well as her untreated TLS.

• Close monitoring of Mrs G’s condition (and active treatment such as that mentioned above) would have greatly reduced the chance of Mrs G developing multi-organ failure and would have increased the likelihood of her surviving beyond 16 May with the potential for being well enough to start the planned chemotherapy. This is because staff would have been able to identify and respond to more gradual and subtle changes in her condition rather than acting after a gross change or deterioration occurred.

• The fact the ICU accepted Mrs G on 15 May shows it was thought at the time that her condition was reversible. However, by this point, our ICU adviser thinks it was ‘too late’, given the failings before. This is evidenced by the fact she did not respond to renal replacement therapy or blood pressure support once in ICU.

109. While we have not seen any evidence Mrs G had developed ‘new sepsis despite treatment’, our HIV adviser also told us prophylactic antimicrobials would have prevented infection, such as PCP, which could provoke a septic response if untreated.

110. With the above in mind, and firstly with regard to Mrs G’s cancer, we cannot say it was more likely than not that her cancer would have been cured if it was not for the failings identified, and she went on to receive chemotherapy. This is because only 30% to 40% of people with this cancer are cured following treatment.

111. However, people with incurable cancer can still have treatable cancer, and therefore receive treatment that will manage their condition and prolong their life. This means that while there was a less than 50% chance her cancer would have been cured, she could have received treatment that may have prolonged her life. We are simply unable to reach any conclusion as to how successful any cancer treatment would have been and how long, if at all, this would have prolonged Mrs G’s life.

112. This then means the pertinent consideration is why we think, had it not been for failings, Mrs G would have lived beyond 16 May and, potentially, gone on to start her planned chemotherapy.

113. We accept and recognise Mrs G was very unwell and had lots of complications when she arrived at hospital on 8 May. This meant her clinical situation was challenging. She developed a rare and serious condition (spontaneous TLS), had HIV she had not taken treatment for (her CD4 count was low, but contrary to the Trust’s assertion, her viral load was not high), had lymphoma, and had developed an acute kidney injury that subsequently developed into renal failure.

114. What we have identified are many significant failings by the Trust that show these complications and conditions were not treated appropriately or, in some cases, at all. When these conditions are not treated correctly, they lead to an increased risk of further complications such as those Mrs G experienced, and that the Trust has recognised occurred (paragraphs 103 to 104).

115. Therefore, in summary, we consider Mrs G’s death was avoidable. We can see Mrs G’s condition was considered to be treatable. Based on the evidence we have seen, we consider there were multiple missed opportunities to provide treatment and there were occasions where treatment was provided that was wrong. When taken together, we think the impact of all these factors mean, on the balance of probabilities, Mrs G would not have died when she did if she had been treated properly.

116. However, for the reasons outlined, it is not possible for us to say how much more time she would likely have had. We think this will cause Mrs R and her family significant distress and uncertainty that is likely to be ongoing beyond the conclusion of our investigation. We make recommendations to address this later (paragraphs 121 to 130).

Communication

117. We recognise events unfolded quickly in this case, and when this happens it can be more difficult for staff to have conversations with patients and their families in a timely way before things get worse.

118. However, our view is that the communication was not effective enough and did not adequately inform Mrs R or her family about the seriousness of Mrs G’s condition, and how things were being managed and unfolding. Staff had concerns about the management of Mrs G’s condition when they noted that a DATIX should be completed. However, Mrs R and her family were not notified of this, or what it meant for her care.

119. We know they were told the plan was for Mrs G to receive chemotherapy to treat her cancer (which was thought to be curable), with this planned to commence on 12 May, which was a Friday. Over the course of that weekend, there were no detailed discussions about Mrs G’s deterioration, or any suggestion that Mrs G was gravely ill, which culminated in being told treatment would be withdrawn on 16 May. We consider this would have been very distressing for Mrs R and her family because less than a week prior they were under the impression Mrs G was going to be receiving chemotherapy with a view to curing her cancer.

120. This means the family were not as prepared as they otherwise could have been and this left them with very little time to say goodbye to Mrs G. We consider this would have been significantly distressing for Mrs R and her family and will continue to affect them and their lasting memories of Mrs G. We make recommendations to address this below.

1. Mrs R told us poor care and treatment by staff at Kettering General Hospital NHS Foundation Trust (the Trust) led to the premature death of her mother, Mrs G, in May 2023. Mrs R told us her family were not prepared for Mrs G’s death because it was unexpected, and they had very little time to say goodbye. She told us this has left a void in their lives, and continues to cause significant distress. We recognise how distressing this experience has been, and continues to be, for Mrs R and her family.

2. We have found failings in the way the Trust monitored and treated Mrs G during her admission. It failed to manage Mrs G’s condition appropriately and communicate effectively with her, Mrs R, and their family. We consider, on the balance of probabilities, that Mrs G would not have died on the day she did if she received the correct care and treatment. We also think the failings identified caused significant emotional distress for Mrs R and her family, that will be ongoing.

3. Therefore, we uphold this complaint.

4. We recommend the Trust writes to Mrs R to acknowledge the failings we have identified and apologise for the impact arising from them. We also recommend the Trust pays Mrs R £18,750 in financial remedy to further recognise the impact of its mistakes. We also recommend it creates an action plan setting out what actions it will take, or has already taken, to address the failings identified. The Trust should share a copy of the action plan with Mrs R, the Care Quality Commission (CQC), NHS England, and us. Finally, we recommend the Trust bring this complaint, our report, and the action plan, to the attention of its board of directors.