A practice in the Somerset area

The Practice

7. Mrs O complains about aspects of the care and treatment the Practice gave Mr O. Specifically, she complains:

• in October 2017 and November 2017, the Practice missed an opportunity to refer her husband under the urgent, two-week cancer pathway • the Practice failed to communicate with her and her husband about his care in a timely manner • there was a lack of coordination in her husband’s care, particularly his palliative care • clear information about her husband’s prognosis was not given.

8. Mrs O says that because the Practice did not act sooner, her husband’s treatment was delayed, which resulted in reduced life expectancy. Due to poor communication, Mrs O, her husband and their family were denied time to prepare for his death. Mrs O says the lack of coordination in her husband’s care has caused her distress.

9. Mrs O wants service improvements and financial compensation.

YDH

10. Mrs O complains about the care and treatment YDH gave Mr O between November 2017 and September 2018. Specifically, she complains:

• YDH failed to identify Mr O’s cancer had spread to his throat and lymph nodes (lumps of tissue containing infection-fighting, white blood cells) in a timely manner • the communication between the clinicians and Mrs O and her husband was poor, particularly concerning his prognosis and palliative care • Mr O’s treatment was poorly coordinated between the organisations involved in his care • a nurse failed to inform another trust to expect Mr O.

11. Mrs O says that because YDH did not identify the cancer had spread sooner and as there was a lack of communication about Mr O’s prognosis and palliative care, she, her husband and their family were denied time to prepare for his death.

12. Mrs O says the lack of coordination between the consultants involved in his care caused her and Mr O distress. Mrs O says she and her husband were upset to learn the nurse had not informed the other trust of their visit.

13. Mrs O wants service improvements and financial compensation.

UHBW

14. Mrs O complains about the care and treatment UHBW gave Mr O between November 2017 and September 2018. Specifically, she complains: • UHBW failed to identify Mr O’s cancer had spread to his throat and lymph nodes in a timely way • the communication between the clinicians and Mrs O and her husband was poor, particularly concerning his prognosis and palliative care • Mr O’s treatment was poorly coordinated between the organisations as the results of CT scans (which use X-rays and a computer to create detailed images of the inside of the body) were not made available to UBHW in a timely manner • on 5 September 2018, Mrs O was given the impression her husband’s treatment was progressing well when, instead, he was deteriorating.

15. Mrs O says that because UBHW did not identify sooner the cancer had spread and as there was a lack of communication about Mr O’s prognosis and palliative care, she, her husband and their family were denied time to prepare for his death.

16. Mrs O and her husband were upset the scans were not available to UBHW. Mrs O was devastated to learn her husband was not progressing well.

17. Mrs O wants service improvements and financial compensation.

The ICB

18. Mrs O complains when the ICB investigated her complaint it failed to interview key people involved in the treatment given to her husband.

19. Mrs O feels the ICB’s investigation was not thorough and this has caused her distress.

20. Mrs O wants service improvements and financial compensation.

21. In November 2017, Mr O went to the Practice. He complained of throat pain and swelling. His GP referred him to a head and neck surgeon at YDH for an X-ray.

22. The X-ray results did not show any obvious mass. In January 2018, Mr O complained of ongoing throat pain, and he was unable to eat solid food. An urgent referral was made for the upper gastrointestinal (upper GI) clinic at YDH to see Mr O for further investigation.

23. In February and March 2018, Mr O had a gastroscopy (a test to check inside the throat, food pipe and stomach), a positron emission tomography (PET) scan (used to produce detailed three-dimensional images of the inside of the body) and a biopsy (a procedure which involves taking a small sample of body tissue so it can be examined under a microscope). He was diagnosed with oesophageal cancer (cancer in the food pipe) and his case was discussed by a multidisciplinary team (MDT) at UHBW. Mr O was referred to an oncologist (cancer specialist) at UHBW.

24. In March 2018, Mr O had a gastrostomy (a surgical opening through the skin of the abdomen to the stomach) to put a feeding device in place before starting chemoradiotherapy (having chemotherapy and radiotherapy treatment together).

25. In August 2018, Mr O had a CT scan. It was reviewed by the specialist MDT, which noted an ongoing shadowing on the right side of Mr O’s chest. The MDT agreed to carry out a restaging CT scan three months later to make sure there were no signs of metastatic disease (secondary cancer) spreading to Mr O’s lung. The consultants felt the chances of this were very low and the CT scan findings were more likely to be a sign of resolving lobar pneumonia (an infection affecting one or more lobes (sections) of the lungs).

26. Mr O sadly died in September 2018.

The Practice

Diagnosis

30. Mrs O tells us the Practice missed an opportunity to refer her husband under the urgent, two-week cancer pathway in October and November 2017. She says her husband saw a GP about his symptoms in October, but the GP did not take any action. On 24 November, the GP saw her husband again and advised him to take paracetamol and Gaviscon (a medicine for treating heartburn and indigestion).

31. We have reviewed Mr O’s GP records and see no evidence of Mr O visiting the Practice in October. The first appointment at the Practice was in November with a nurse practitioner (NP).

32. Section 13 of the NMC guidance advises a nurse must accept and work within the limits of their competence. To achieve this, they must, as appropriate:

• ‘accurately identify, observe and assess signs of normal or worsening physical and mental health in the person receiving care • make a timely referral to another practitioner when any action, care or treatment is required • ask for help from a suitably qualified and experienced professional to carry out any action or procedure that is beyond the limits of [their] competence.’

33. Mr O was seen by the NP on 10 November. The NP noted Mr O had a three-month history of throat pain with a sensation of a ‘shooting pain from his throat into the left side of his chest’. He was drinking fluids but had a reduced diet, and he could not confirm if he had lost weight. He had no urinary or bowel problems and no family history of cancer. He smoked 20 cigarettes a day. On examination, no throat abnormality was detected and there were no lumps on his neck. Mr O weighed 54kg and his vital signs were normal. The NP arranged for Mr O to have a blood test and booked a follow-up appointment with a GP for two weeks later.

34. The NP accurately assessed Mr O had a throat problem, did an appropriate examination, arranged appropriate tests and arranged an appointment with a GP for further assessment. This is in line with the NMC guidance.

35. The GMC advises doctors ‘[they] must provide a good standard of practice and care. If [they] assess, diagnose or treat patients, [they] must:

• adequately assess the patient’s condition, taking account of their history (including symptoms and psychological, spiritual, social and cultural factors), their views and values • where necessary, examine the patient • promptly provide or arrange suitable advice, investigations or treatment, where necessary • refer a patient to another practitioner when this serves the patient’s needs’.

36. On 24 November 2017, a GP at the Practice saw Mr O. The GP noted Mr O had a history of smoking 20 cigarettes a day and had done so for the past 43 years. They recorded Mr O did not have difficulty swallowing or weight loss. He did have severe throat pain, which spread to the left side of his chest. Mr O also complained of a foul taste in his mouth. The GP examined Mr O’s throat. The GP arranged an urgent ear, nose and throat (ENT) appointment, and a chest X-ray because of Mr O’s history of heavy smoking.

37. At this appointment, the GP adequately assessed Mr O, examined him and quickly arranged suitable investigations. We have looked at the NICE guidance, which says to ‘consider suspected cancer pathway referral for laryngeal cancer (a type of cancer that affects the voice box) in people aged 45 and over with persistent unexplained hoarseness or an unexplained lump in the neck’. A referral for suspected cancer was not made at this appointment as Mr O did not have the symptoms listed in the NICE guidance. Instead, the GP arranged for Mr O to have a chest X-ray and made a referral to an ENT consultant. The GP acted according to his responsibilities under the GMC guidance.

38. On 2 January 2018, a GP at the Practice saw Mr O, who complained of throat pain. The GP noted the ENT consultant had referred Mr O for a magnetic resonance imaging (MRI) scan (a type of scan which uses strong magnetic fields and radio waves to produce detailed images of the inside of the body) on 17 December 2017. Mr O told the GP he had had the MRI scan but had not received the results. As the results of the MRI scan were not available, the GP arranged for Mr O to have a repeat X-ray.

39. On 16 January, Mr O went back to his GP as he was still unable to eat solid foods and had throat pain. In November 2017, Mr O had seen an ENT consultant who did not find any abnormality and had arranged for Mr O to have an MRI scan. Mr O told his GP he still had not received the results of the MRI scan, and the GP could find no information about it. The GP noted Mr O had lost weight. Although Mr O was under the care of the ENT consultant and was waiting for the results of the MRI scan, the GP made an urgent two-week referral to the upper GI clinic because of Mr O’s worrying symptoms.

40. The NICE guidance says to ‘offer urgent direct access upper gastrointestinal endoscopy [a procedure to examine the upper digestive system] to assess for oesophageal cancer in people with dysphagia [swallowing difficulties] or aged 55 and over with weight loss and any of the following: upper abdominal pain, reflux [heartburn] and dyspepsia [indigestion]’. At the appointment on 16 January, Mr O’s symptoms fitted the description in the NICE guidance for suspected oesophageal cancer.

41. We note at the time the GP made a referral to the upper GI clinic, Mr O was still under the care of the ENT consultant. We asked our GP adviser how common it is for a GP to refer a patient to a specialist while under the care of another. Our GP adviser told us it is unusual and, in this case, it appears the GP referred Mr O to quicken the investigation process as they considered it clinically necessary to do so.

42. We understand how difficult it was for Mrs O to witness her husband in pain and how worried she was about his symptoms. From the evidence and clinical advice received, we see Mr O was referred appropriately to an ENT consultant in November 2017 based on the symptoms he had at the time. Mr O did not then have symptoms for the GP to suspect cancer. In January 2018, Mr O’s symptoms worsened. He was already under the care of the ENT consultant but, in order to have Mr O seen quickly, the GP made a second referral to the upper GI clinic. While this may not have been the normal process, we consider the GP acted appropriately in the circumstances. There is no evidence to suggest the GP missed an opportunity to refer Mr O sooner.

Communication

43. Mrs O tells us the Practice failed to communicate with her and her husband about his care in a timely manner. She complains there was a lack of coordination in her husband’s care, particularly his palliative care, and clear information about her husband’s prognosis was not given.

44. The GMC guidance advises doctors to communicate effectively:

• ‘[they] must listen to patients, take account of their views and respond honestly to their questions • [they] must give patients the information they want or need to know in a way they can understand • [they] should make sure arrangements are made, wherever possible, to meet patients’ language and communication needs • [they] must be considerate to those close to the patient and be sensitive and responsive in giving them information and support • when [they] are on duty [they] must be readily accessible to patients and colleagues seeking information, advice or support.’

45. Our GP adviser says once Mr O had been diagnosed with cancer he would have been under the care of the hospital specialist and their team. There would be no great involvement from the Practice when Mr O went for investigations, cancer treatment and hospital appointments. Mr O’s GP would have received correspondence from the hospitals but it would have taken several weeks to receive it. So, the Practice would not be up to date in its knowledge of Mr O’s treatment.

46. Mrs O says there was a lack of coordination in providing palliative care. The NICE guidelines define palliative care as ‘the active holistic care of patients with advanced, progressive illness’. Management of pain and other symptoms, and psychological, social and spiritual support are vital. The goal of palliative care is to achieve the best quality of life for patients and their families.

47. The Practice says Mr O was under the care of the oncologist and the hospice nurses. It expected palliative care and end of life management to have been discussed in that clinical environment, where such discussions were more appropriate. The Practice says it adopted a supportive role in Mr O’s case, helping with patient management. It acted quickly each time it was contacted by Mr O, his wife, the hospice or secondary care teams to act on treatment and prescription requests. This included giving explanations of the need for ‘Just in Case’ medication (which is given to a patient to keep and use when needed) and providing this when requested by the hospice team.

48. In primary care, district nurses are the main professional care providers, with GPs being available for advice and prescriptions. They coordinate care with Macmillan and Marie Curie nurses, hospices and hospital services. In this case, both the hospital and the Practice were involved in Mr O’s care.

49. We see there were several interactions between the Practice and the hospitals in that the Practice was providing prescriptions and services requested by the hospitals. We note the Practice saw Mr O on several occasions and followed this up with a call to the hospitals, for example on 1 June and 28 August 2018.

50. Mrs O complains the Practice did not give clear information on her husband’s prognosis. As mentioned above, once Mr O had been referred, the hospital was responsible for the management of his overall care. The hospital would have sent the Practice information about Mr O, but there would have been a lag. The hospital would have had up-to-date information on Mr O’s prognosis and it was the hospital’s responsibility to keep his family informed.

51. We understand Mrs O feels the Practice should have been more involved in her husband’s care and we accept how worrying it is when someone is receiving cancer treatment. From the evidence we have seen and the advice from our GP adviser, we consider the Practice carried out its responsibilities in line with the guidance.

YDH

Failure to identify the spread of the cancer

52. Mrs O says YDH failed to identify her husband’s cancer had spread to a lymph node and his throat. She says it did not communicate to her and Mr O the cancer had spread. Mrs O believes had this been picked up sooner she and her family would have been better prepared for her husband’s death.

53. YDH says Mr O was diagnosed with oesophageal cancer in February 2018. While under the care of YDH, he had several scans to monitor his condition.

54. The Cancer Research UK website says a process known as staging is used to describe the size of a cancer and how far it has grown. There are two main types of staging systems for cancer: the tumour, node and metastasis (TNM) system and the number system. In the TNM system, T describes the size of the tumour, N describes whether there are any cancer cells in the lymph nodes and M describes whether the cancer has spread to a different part of the body.

55. At the time Mr O was diagnosed with cancer, it was suspected the tumour had grown into the muscle layer of the wall of the oesophagus. Our oncologist adviser has confirmed Mr O’s cancer was at the T2 N0/1 M0 stage. We note Mr O underwent further tests, such as a PET scan, to confirm the stage of the cancer. In March 2018, the tumour had grown into the membrane covering the outside of the oesophagus. Our oncologist adviser has confirmed Mr O’s cancer was at the T3 N0 M0 stage. At this stage, he was treated with chemoradiotherapy.

56. There is no specific guidance setting out how a cancer should be monitored. We asked our radiology and oncologist advisers if Mr O’s cancer was appropriately monitored. We see there were several X-rays and CT scans, which we detail below.

57. A chest X-ray was carried out on 21 May 2018. Our radiology adviser says it shows the lungs were clear apart from emphysematous changes (a lung condition which causes shortness of breath). A chest X-ray dated 25 June shows consolidation (this occurs when the normally air-filled spaces of the lung are filled with the products of disease) in the right upper zone, the right mid zone and the left lower zone of the lung. This X-ray was compared to the one taken in May. The changes suggested an infection.

58. A chest X-ray carried out on 18 July shows a partial resolution of the consolidation in the right upper and mid zones and in the left lower zone of the lung, which suggested a resolving infection.

59. A CT scan was carried out on 31 July. The scan shows indeterminate nodules in both upper zones of the lungs. These are usually non-cancerous nodules caused by scarring, inflammation or infection. Due to the nodules’ shape, they were identified as inflammatory. The scan also shows lymph nodes up to 10mm in diameter in the oesophagus. Our radiology adviser tells us this is consistent with the main tumour.

60. The scan shows changes in terms of low attenuation (weakening or thinning) in the thyroid gland, which may have been caused by radiotherapy. An MDT meeting was held to discuss the results of the CT scan. The consultants agreed the cancer had improved with treatment and the suspicious lung change did not suggest the cancer was returning, but rather a resolving infection. On 15 August, the oncologist passed the results of this CT scan to Mr O and Mrs O with a recommendation to arrange a further CT scan to monitor these changes. A follow-up letter was sent to Mr O and his GP.

61. A CT pulmonary angiogram (a scan which takes pictures of the blood vessels running from the heart to the lung) was carried out on 10 August. This was compared to the CT scan from July, and there was no overall change.

62. A chest X-ray was also carried out on 10 August. This was compared to the chest X-ray taken on 18 July, and there was an improvement with a resolution in the areas of consolidation.

63. A CT scan carried out on 26 August shows the consolidation noted in the right upper zone, the right lower zone and the left lower zone had reduced in size compared to the CT scan of 21 July. The nodules in the upper zones were unchanged. This scan was discussed at the MDT meeting on 31 August. It was agreed the cancer was responding to the treatment, there was no spread and there should be a repeat scan in three months’ time. An oncologist communicated the results of this CT scan and follow-up to Mr O and Mrs O on 6 September.

64. A chest X-ray was carried out on 28 August, which shows resolving consolidation in the right upper zone. This was compared to the X-ray taken on 10 August and shows improvement. On 3 September, a chest X-ray was taken and compared to the one taken on 28 August. There was no change.

65. The chest X-rays show Mr O’s lungs were filled with fluid and, between June and September 2018, the main areas - right upper lobe, right lower lobe and left lower lobes - were improving. The CT scans show small wedge-shaped nodules in the upper lobes, and these were unchanged.

66. We recognise how distressing it is to find out cancer has spread. Having considered the evidence and the clinical advice from our radiology and oncologist advisers, we see no evidence to suggest YDH failed to identify the cancer had spread. Regular monitoring was carried out through X-rays and CT scans. There were nodules in Mr O’s lungs, but YDH identified them as inflammatory (as a result of infection, as Mr O was seen in the emergency department for pneumonia) and not cancerous.

Communication between Mr and Mrs O and the clinicians

Prognosis

67. Mrs O complains YDH failed to keep her and her husband informed about his prognosis. Mrs O says no one explained the seriousness of her husband’s condition to her.

68. A prognosis may be defined as an educated prediction of the course of a disease and how a person may recover. A doctor can estimate a patient’s prognosis using statistics taken from research studies over many years. It cannot be forced on a patient unless asked.

69. As we set out earlier in this report, the GMC gives guidance on good communication between consultants and patients and their families.

70. There were several trusts involved in Mr O’s care. He was referred to YDH, which made his cancer diagnosis. However, YDH could not provide specialist oncology treatment for oesophageal cancer and it does not have a radiotherapy service. YDH referred Mr O to a specialist unit at UHBW, where he received oncology advice and a management plan. The cancer treatment itself – chemoradiotherapy - was given by a hospital in a third trust.

71. YDH says it unsuccessfully tried to have discussions with Mr O and Mrs O on a number of occasions. YDH says Mr O’s GP arranged a ‘Just in Case’ medication box on 20 June 2018, and its purpose was explained to Mr O and Mrs O. YDH says communication with family members at a time of serious illness and distress is an important skill for all practitioners. However, difficult messages are not always fully appreciated at the first, second or even third attempt at discussion.

72. We have reviewed the medical records which show a number of discussions between the upper GI cancer nurse specialist (CNS) and Mr O and his wife. In particular, the CNS gave Mr O and his wife emotional and psychological support. On 14 March 2018, the CNS and nutrition specialist saw Mr O and his wife in the gastrostomy clinic to discuss measures to help with his nutrition.

73. We have seen evidence of further discussions between the upper GI CNS and Mr O. The upper GI CNS discussed treatment with Mr O and explained to him he would not have induction chemotherapy (a treatment to destroy as many cancer cells as possible to achieve a remission). This was not offered to Mr O because of his frail condition and low body mass index (BMI). Instead, Mr O was offered chemoradiotherapy.

74. On 27 March, the consultant spoke to Mr O and his wife and told them Mr O had a reasonably good prognosis as long as he was fit for treatment. Here, we note the consultant briefly mentioned Mr O’s current prognosis at the time.

75. On 28 March, the acute oncology service (AOS) saw Mr O and his wife. They were given the opportunity to speak to an oncologist to discuss chemotherapy. Mr O and his wife did not accept this offer as they felt it was not needed at the time as so much information had been given to them, which they needed time to process.

76. Mr O’s medical records contain a treatment escalation plan and resuscitation decision record dated 5 April, on which it is noted ‘pt [patient] has good prognosis in regard to treatment’. However, this document is unsigned and there is no further entry on or around this date saying what was discussed with Mr O and his wife.

77. In May, further discussions took place between the upper GI CNS, the acute oncology service at YDH and Mr O and his wife. We note during this appointment Mrs O raised concerns about her husband’s fitness and whether he would be fit for the treatment. Mr O and his wife were advised to continue with the plan and to seek medical advice if his symptoms worsened.

78. On 21 May, there is evidence in the records to show Mrs O contacted the upper GI CNS and they discussed Mrs O’s concerns her husband may be too unwell for treatment. During this conversation, the upper GI CNS explained why they had completed a DS1500 form even though Mr O was to have stages radical treatment. Our oncologist adviser says the DS1500 form is usually completed for terminal patients with a life expectancy of less than six months. Completion of this form suggests the consultant considered Mr O’s life expectancy to be less than six months, and this would have been explained to Mr O and his wife.

79. On 26 June, Mr O was seen in the emergency department (ED). In its complaint response, YDH says Mr O asked the ED clinician if this was the end of his life and the ED clinician accepted it might be.

80. The community palliative care notes dated 29 August say ‘[Mr O] presented at A&E, with increasing breathlessness. [Mr O] reports to hospital CNS he does not want to hear about disease progression.’

81. We recognise Mr O and Mrs O would have felt overwhelmed by the amount of information given to them and would not have processed all of it at the time. From the evidence we have seen, although YDH were not providing oncology treatment, the AOS kept Mr O and his wife informed about his treatment and were available for support as and when needed. The GMC guidance says patients should be given information they want or need to know in a way they can understand.

82. The consultants gave Mr O and Mrs O the information they wanted to know when asked, in line with the GMC guidance. The community palliative care notes say Mr O could have asked about his prognosis. We understand he may not have been ready to hear this information. Mr O was receiving radical treatment and the doctors were looking for a good prognosis, which would have given him more months to live. We have considered whether the consultants should have provided this information. We see from the evidence the consultants were treating Mr O’s cancer and they planned to see him again three months after the appointment in August. There are no signs they expected Mr O’s condition to deteriorate. So, we consider the communication to be appropriate.

Palliative care

83. Mrs O says she was led to believe her husband was receiving palliative care for symptom control, not end of life care.

84. In YDH’s complaint response dated 21 January 2019, it says the palliative care team, the doctors in the ED and the CNS, at various times throughout his treatment, had attempted to have discussions with Mr O and his family about advanced care planning (making personal decisions about the care and treatment someone wishes to receive now and in the future) and do not attempt resuscitation (DNAR) decisions. However, these conversations caused Mr O and his family distress and were mainly unsuccessful.

85. We got advice from our senior nurse adviser. Palliative care may be given at any time during cancer care from diagnosis to end of life. According to the NIC website, when a person receives palliative care, they may also continue to receive cancer treatment. The NICE guidance CSG4 says people with cancer, and their families and carers, should be well informed, cared for and supported from before formal diagnosis onwards.

86. YDH tells us there was ongoing communication between acute oncology, upper GI, emergency medicine and palliative care services throughout Mr O’s treatment. The palliative care team first discussed advance care planning on 7 February 2018. No further discussions are noted until June 2018, following Mr O’s emergency hospital admission for hemoptysis (coughing up blood). YDH says the on-call doctor approached Mr O and his family about his wishes in relation to treatment escalation and resuscitation, and the family said they would think about this. YDH notes there is no evidence of a follow-up conversation in the medical records until Mr O was urgently admitted to hospital in August 2018. A further attempt for the palliative care team to discuss advance care planning with Mr O and his family was made on 10 August, but no progression was made as this caused upset.

87. We have reviewed the medical records. Our senior nurse adviser tells us palliative care can be introduced at any time during a patient’s treatment or when treatment fails. Mr O was not considered to be at the end of his life. He was receiving active treatment. He had a key worker who was part of the local and national MDT. This key worker would have acted as the communication channel between patient and consultants for discussions on palliative and end of life care. On 6 March, Mrs O asked the lead cancer nurse about DS1500 forms and arrangements were made to discuss this at the next appointment. We have not seen evidence of a follow-up conversation. However, we note the lead cancer nurse spoke to Mrs O on 21 May and they mention completing the DS1500 form and the reason for this.

88. On 23 March, the palliative care team saw Mr O and his wife to discuss symptom control. There is an unsigned treatment escalation plan dated 5 April, which says, ‘for resuscitation in the event of cardiac arrest’.

89. On 1 June, Mrs O contacted the community palliative care team at the hospice for advice about Mr O’s sore throat and coughing. As Mr O was having active chemotherapy, the team advised Mrs O to contact the cancer helpline. On 26 June, Mr O was seen in the ED. YDH’s complaint response says Mr O asked the ED clinician if this was the end of his life. This would have been a cue for the clinician to discuss palliative care with Mr O and his family. The records note the clinician asked if a treatment escalation plan had been discussed with the family. Mr O and his wife said it had not, and they were given time to go away and think about it. We have seen no evidence this was followed up with the family or that Mr O raised it with YDH. We have reviewed the records received from the community palliative care team and see no evidence of follow-up to discuss the treatment escalation plan.

90. The medical records dated 31 July note Mr O and his wife were unhappy they had not been contacted by the palliative care team despite being told by oncology the week before. The same day, the palliative care team reviewed Mr O’s pain management. The community palliative care team notes dated 1 August say the community palliative care nurse specialist (CPCNS) spoke to Mrs O about changes to Mr O’s medication. There is no mention of a discussion about end of life care.

91. On 10 August, Mr O was seen in the ED. There was a discussion between the AOS and Mr and Mrs O during which it was mentioned Mr and Mrs O had been seen by the palliative care team on Monday, they had had an advanced care planning discussion and ‘felt they [the clinician] had known something’. This entry suggests the palliative care team had mentioned advanced care planning, but there are no notes in YDH’s records on or around this date to confirm this. The community palliative care notes say the CPCNS visited Mr O at his home, where his medical history was taken and his symptoms were assessed, and emotional support was given to Mrs O.

92. On 3 September, Mr O was admitted to the ED. The palliative care team reviewed Mr O’s pain management. Doctors made arrangements for the palliative care team to review him again a few days later but, before this could happen, Mr O discharged himself. It is not fully documented what the palliative care team discussed with Mr O and his daughter although we know they discussed pain control.

93. From the evidence we have seen, we can see Mr O and Mrs O raised concerns they had received no contact from the palliative care team, which led to clinicians contacting the team. The evidence suggests the palliative care teams at YDH and in the community discussed pain management with Mr O and Mrs O. There was also an opportunity for Mr O and Mrs O to discuss matters of concern.

94. We accept it is difficult for a patient and their family to talk about palliative care and what this can mean. We see there was mention of a treatment escalation plan, which suggests Mr O was very unwell. However, we have seen no evidence to show this was followed up. Mr O’s condition was not expected to deteriorate as suddenly as it did in August 2018, as the next planned action was for him to have a CT scan in three months’ time. We accept communication could have been better and it is clear Mrs O feels she and her husband were not fully informed. We find no sign of failing as attempts were made to have difficult conversations and Mr O was receiving active treatment, so was not considered to be at the end of his life. This is in line with GMC guidance.

Communication between the clinicians

95. Mrs O says her husband’s treatment was poorly coordinated across the organisations involved in his care. As we mentioned earlier, although Mr O’s GP referred him to YDH, not all his treatment was carried out there. Mr O was seen by the oncologist consultant at UHBW. He was referred to a third trust for a radiological inserted gastrostomy (RIG) procedure (to insert a feeding tube) and further treatment.

96. Section 10 of the GMC guidance says MDTs can benefit patient care when communication is timely and relevant, but problems can arise when communication is poor or responsibilities are unclear.

97. Section 11 of the GMC guidance says all doctors must make sure they communicate relevant information clearly to:

• ‘colleagues in the team • colleagues in other services with which they work • patients and those close to them in a way they can understand, including who to contact if they have questions or concerns, particularly when patient care is shared between teams.’

98. On 16 January 2018, the GP made an e-referral to gastroenterology at YDH under the two-week referral and cancer diagnosis pathway. On 29 January, Mr O was seen by upper gastroenterology and an endoscopy procedure was carried out. Gastroenterology saw Mr O within the two-week time period.

99. From the medical records, we note several local MDT meetings were held, with the first one on 13 February. An MDT meeting involves a group of professionals from one or more clinical disciplines who, together, make decisions about the recommended treatment of individual patients. At this meeting, the MDT agreed to refer Mr O to UHBW to be seen by an oncologist and to arrange a PET scan. Records dated 26 March show UHBW did not receive a referral for Mr O. This was sent again and Mr O’s first appointment with the oncology consultant took place on 25 April.

100. YDH were responsible for arranging for Mr O to have a RIG procedure, as agreed at the urology MDT on 6 March, and for starting him on his course of treatment. Mr O needed specialist treatment, which was not available at YDH, so a referral was made for him to receive treatment at another trust. As several hospitals were involved in Mr O’s care, we accept Mrs O feels there was a lack of communication between organisations, particularly as Mr O was first referred to a different hospital to have the RIG insertion and later to Taunton and Somerset NHS Trust to receive chemoradiotherapy treatment. Our oncologist adviser says an appropriate and timely referral was made for Mr O to receive his treatment.

101. We have seen evidence in the medical records to show YDH were providing updates to their colleagues at UHBW. For example, the outcomes of the local MDT meetings were communicated to UHBW. We have seen evidence that YDH’s acute oncology team were communicating with the nutritional nurse at the third trust about the RIG insertion.

102. The medical records dated 27 March note the consultant at YDH discussed Mr O’s case with the oncology nurse and the consultant at UHBW. We have seen evidence the acute oncology team regularly updated the third trust, UHBW, the CNS and the oncologist between then and 24 July. On 5 April, a consultant at YDH discussed Mr O’s case with the dietician at the third trust. There is evidence of the acute oncology team arranging to speak to the oncologist on 26 June, following Mr O’s admission to the ED. We have also seen evidence of clinical letters sent between consultants at YDH and UHBW with updates on Mr O.

103. Having considered the medical records and our clinical advice, we think, on the whole, YDH were communicating with the organisations, providing updates on outcomes and arranging for further follow-up. As mentioned earlier, due to the number of organisations involved and with Mr O being sent from one hospital to another, it not unreasonable for Mrs O to believe there was a lack of communication between the organisations. We see the consultants communicated relevant information to their colleagues in line with section 11 of the GMC guidance.

Nurse’s failure to inform another organisation of Mr O’s appointment

104. Mrs O says the CNS told her and her husband, on 11 September, an appointment had been arranged for Mr O to see the ENT consultant at the third trust that afternoon, and a Macmillan nurse and an oncologist would be waiting to see him on arrival. Mrs O tells us when she and her husband arrived, the hospital had no knowledge of this appointment. Mrs O complains the CNS failed to inform the third trust about the appointment.

105. YDH says Mrs O spoke to the CNS explaining her husband was unwell, had gone to the ED the previous night and was told an appointment would be made at YDH. The CNS arranged for Mr O’s case to be discussed at the MDT meeting and made an ENT referral appointment for 12 September. The CNS called Mrs O and spoke to Mr O. The CNS felt Mr O had a stridor (a harsh, wheezing sound when breathing, caused by obstruction of the windpipe or larynx). The CNS advised Mr O to go to the ED at the third trust, where both the clinical oncologist and the ENT specialist were located, as the CNS felt it was important for Mr O to speak to the specialists about the treatment options available to him.

106. The CNS asked for the documents from Mr O’s hospital admission the previous night to be sent to the third trust’s ED through the acute oncology service. Unfortunately, this did not happen, and Mr O and Mrs O arrived at the hospital without the ED knowing they were on their way. The hospital contacted the CNS who went through Mr O’s medical history and faxed the relevant information immediately following the conversation. The CNS accepts there was a breakdown in communication between YDH and the third trust, causing Mr and Mrs O additional stress.

107. We can see YDH has already accepted this failing and the impact it has had on Mrs O. Our Principles say where maladministration (fault) or poor service has led to injustice or hardship, the public body responsible should take steps to provide an appropriate and proportionate outcome.

108. We have also looked at our severity of injustice scale, which says, ‘a case will generally be level one if we consider the person affected has experienced a low impact injustice such as annoyance, frustration, worry or inconvenience, typically arising from a single (one-off) incidence of maladministration or service failure, where the effect on the person complaining is of short duration, and where there are no other adverse effects or ongoing wider impact. We will usually consider an apology to be an appropriate remedy for these cases.’

109. Mr O and Mrs O were distressed when they arrived at the ED at the third trust and no one was expecting them. YDH accepts there was a breakdown of communication and have apologised to Mrs O for the distress caused. YDH advises us, since Mrs O’s complaint, it has significantly improved referrals for acute oncology-related issues from the ED to the oncology team. This is appropriate action and puts right what went wrong.

UHBW

Failure to identify the spread of the cancer

110. UHBW and YDH were working together to treat Mr O’s cancer as previously discussed in this report. We find no sign of failing in the care given to Mr O.

Communication between Mr and Mrs O and the organisations

111. UHBW and YDH were working together to treat Mr O’s cancer as previously discussed in this report. We find no sign of failing in the care given to Mr O.

112. Mrs O tells us there was poor communication between the organisations, which resulted in Mr O’s CT scan not being made available to UBHW in a timely manner.

113. On 15 August 2018, Mr O had an appointment to see the consultant oncologist. At the appointment, the consultant had the X-rays but was told the CT scans had not been sent from YDH. Mrs O says she and her husband were worried because they did not know the results of the CT scan, and the wait caused them distress.

114. Our oncologist adviser notes while the CT scans were not available on the day, the consultant made sure Mr O and Mrs O received the results. This was done by sending them a copy of the clinical letter dated 15 August 2018. The letter notes the consultant had spoken to the upper GI CNS at YDH to discuss the results of the CT scan. This was then communicated to Mr O and Mrs O, who told the consultant they were not aware there could be malignancy (cancer) in the lung. The consultant told Mr O and Mrs O they believed the chances were low but they recommended restaging chest, abdominal and pelvic scans. The scans took place on 26 August and were discussed at the MDT meeting at UHBW on 31 August.

115. The consultant oncologist says they did not have the CT scans available at the time of the appointment and they apologised to Mr O and Mrs O. The consultant says they spoke to the upper GI CNS at YDH immediately and they were able to clarify the results of the scans and the outcome of the MDT meeting. When the consultant oncologist became aware there was a possibility of cancer in the lungs, they arranged for a repeat scan at YDH.

116. We accept it would have been distressing for Mr O and Mrs O for the consultant to tell them they did not have the CT scans on the day of the appointment. From the evidence we have seen, even though the CT scans were not available to the consultant, they were aware of the results and so were able to communicate them to Mr O and Mrs O and arrange follow-up treatment. We can see Mr O and Mrs O were given information they needed to know in line with the GMC guidance.

117. Mrs O tells us she and her husband were due to attend an appointment at UHBW on 5 September 2018. On that day, she received a call from a consultant to advise her the appointment had been delayed by 30 minutes as there was only one consultant available. Mrs O tells us her husband was ill, and they decided not to attend the appointment. Mrs O tells us when she spoke to the consultant, she was led to believe her husband was doing really well. Mrs O says this was not the case as her husband was deteriorating and died later that month.

118. We have reviewed the medical records from UHBW and can find no record of this conversation. However, YDH’s medical records include an entry dated 6 September to the consultant gastrologist. They note Mrs O had received a call from a consultant at UHBW and was told her husband was responding well to treatment and there was nothing in his right lung. She had been told her husband should be seen urgently by gastroenterology.

119. We have already addressed Mr O’s prognosis and how this was communicated to Mrs O. We have considered Mrs O’s account of what happened and, from the evidence we have seen, we accept this call did take place.

120. We have not found any independent evidence to support Mrs O’s account she was told her husband was doing really well. We do not dispute her version of events. It appears from the notes she was told her husband was responding well to treatment for his lung. It is possible she misunderstood this to mean her husband was improving overall, rather than in response to this particular treatment. We understand how stressful events were for Mrs O at that time, and any good news would be taken as positive. We do not know exactly what was said during the phone conversation. We cannot say if the information given was correct or incorrect. So, we cannot reach a firm view about whether there was a failing.

The ICB

Complaint handling

121. Mrs O complains the ICB failed to interview key people involved in Mr O’s treatment when investigating her complaint. Mrs O feels the investigation of her complaint was not robust.

122. The role of the ICB complaints manager is set out in the NHS Somerset ICB Complaints Policy. The ICB says it is standard practice for the complaints manager to speak to the complainant directly and explain the process. The ICB says complainants are not told it will be interviewing key people involved in the complaint during the investigating stage. This would be the responsibility of the investigation office in the provider organisation. The ICB says the role of the ICB’s complaints manager is to coordinate the investigation of complaints.

123. We have reviewed the ICB’s complaints file. On 29 October 2018, the ICB’s complaints manager called Mrs O to discuss her complaint and explain the complaints process. On 12 November 2018, the ICB emailed Mrs O with an update. The emails say the ICB had asked each of the providers to investigate her concerns and to respond to the ICB. The ICB would review the responses and write to Mrs O with a summary of the findings.

124. We note, as part of the investigation, the Practice, YDH and UHBW got relevant statements from the clinicians involved in Mr O’s care.

125. In deciding whether the ICB’s actions were reasonable in its handling of Mrs O’s complaint, we have looked at its complaints policy. The policy makes no mention of the complaints manager interviewing people as part of the complaints process. It says the complaints manager coordinates the process with other providers.

126. We have also looked at section 14 of the Local Authority Social Services and National Health Service Complaints (England) Regulations 2009. It says organisations must investigate a complaint in an appropriate manner to resolve it speedily and efficiently.

127. We accept going through the complaints process can be frustrating and difficult at what is already a challenging time. The ICB has considered Mrs O’s experience. It has taken this on board and made a change to give an additional explanation of its role when writing to complainants. In this case, we have seen evidence the ICB explained its role to Mrs O as set out in its complaints policy. So, we find the ICB appropriately involved the right people to give a response to the complaint.

1. The Parliamentary and Health Service Ombudsman understands how distressing it is to learn someone you love has a cancer diagnosis and how challenging this can be to accept. We understand why Mrs O feels more could have been done for her husband Mr O. It is clear from the information we have seen, and it is accepted by all involved, that Mr O’s condition deteriorated quicker than expected. This would have been very difficult for Mrs O to witness.

2. We do not see any signs the practice in the Somerset area (the Practice) missed an opportunity to refer Mr O sooner under the cancer pathway. We see the Practice communicated with everyone involved. We do not uphold this part of the complaint.

3. We see both Yeovil District Hospital NHS Foundation Trust (YDH) and University Hospitals Bristol and Weston NHS Foundation Trust (UHBW) appropriately monitored Mr O’s cancer. We see palliative care (which improves the quality of life for someone with a life-threatening condition) was used to manage Mr O’s pain, but a discussion did not take place about end-of-life care as he was still receiving active treatment. There was no sign Mr O’s condition would deteriorate as it did. We see Mr and Mrs O were given the information they needed in line with General Medical Council (GMC) guidance at the appointment on 15 August 2018. We do not uphold this aspect of the complaint.

4. We can see YDH accepted the staff nurse failed to inform another trust to expect Mr O. We also see it has accepted this failing and has put this right.

5. We are unable to come to a decision about what was communicated to Mrs O on 5 September 2018.

6. We do not see any failing by NHS Somerset Integrated Care Board (the ICB) in its handling of Mrs O’s complaint. We do not uphold this part of the complaint.