The Practice
Action taken by the Practice from August 2021 to January 2022
26. Miss R complains the Practice did not take appropriate action to refer Miss K for further tests following the biopsy she had taken in August 2021.
27. We reviewed the contact Miss K had with the Practice during this time, with help from our GP adviser.
28. GMC good medical practice guidelines explain that when doctors assess, diagnose or treat patients, they must adequately assess the patient’s condition, taking account of their history and where necessary examine the patient. They should also promptly provide or arrange suitable advice, investigations or treatment where necessary.
29. Prior to August, the Practice had referred Miss K to the urology department at the Trust due to long-standing issues she had with her bladder and recurrent UTIs. The Trust carried out some investigations into this, including an ultrasound and cystoscopy.
30. After the cystoscopy and biopsy procedures that Miss K had in early August, she was in contact with the Practice numerous times until her admission to the Trust in January 2022.
31. She spoke to the Practice on 17 August where she was still experiencing side effects from the procedures. She had some bleeding and pain. It was thought she had a urine infection due to the symptoms she had, so antibiotics were prescribed, and blood tests were taken.
32. The results showed no obvious infection and Miss K’s symptoms were thought to be from the procedures she had and from self- catheterising (using a catheter to remove urine from the bladder). No further action was required from the Practice.
33. In October, Miss K had an appointment with her urology consultant at the Trust who wrote to the Practice and recommended Miss K’s GP prescribe low dose trimethoprim (an antibiotic used to treat and prevent UTIs). The GP noted that Miss K was allergic to this so contacted the urology consultant for advice on what to prescribe.
34. The urology consultant recommended cephalexin (a different antibiotic used to treat UTIs) to be used on a long-term basis, which was prescribed by the Practice on 20 October. We think this shows the GP was being proactive and taking advice from a specialist on how to proceed in Miss K’s treatment.
35. In November, Miss K contacted the Practice twice with further symptoms of a UTI and she was prescribed amoxicillin (antibiotic used to treat bacterial infections, such as UTIs) as this seemed to help her in the past.
36. In late November, Miss K contacted the Practice again with bladder symptoms. It advised her to restart cephalexin and suggested she try Vesicare (medication to treat an overactive bladder) to settle her bladder issues, but she was not keen to take it. She was asked to take a urine sample to the Practice but did not take one in at that stage.
37. In early December, Miss K contacted the Practice again with symptoms of a further UTI. It recommended she take cephalexin for 6 months and to increase the dose to help with ongoing symptoms. It advised that if her symptoms did not improve, she should return.
38. Miss K spoke to the Practice in mid-December regarding irritable bowel syndrome symptoms, which appeared to be unrelated to her bladder. Appropriate treatment for this was provided.
39. On 30 December, Miss K contacted the Practice again with further symptoms, along with experiencing pain. It arranged a face-to-face appointment so it could carry out an examination.
40. Miss K attended the appointment on 4 January 2022. An examination was carried out and it was thought she had another UTI. The GP prescribed antibiotics and it was suggested she contact the urology department at the Trust to discuss her ongoing symptoms, and she agreed to this.
41. We understand Miss R’s concern that the Practice did not contact the urology department at this point. The Practice had letters from the urology department confirming that Miss K was still under its care, and that she would be seen again in due course. We think it was reasonable for the Practice to suggest she contact the urology department herself as this would have been a quicker way for her to gain advice.
42. Miss K had a few more consultations with the Practice in January and was given appropriate advice to carry on with the antibiotics or increase the dose to help with her recurrent symptoms.
43. We think that on each contact Miss K had with the Practice, it assessed the symptoms she had, took advice from the urology department where appropriate, and prescribed the correct antibiotics. The histology report following Miss K’s biopsy, also showed no abnormality that needed further attention, and she had further appointments with the urology department in September and October, where advice was given to manage her ongoing symptoms.
44. Based on the evidence we have seen, we think the Practice took the appropriate action to investigate the symptoms that Miss K had.
45. We also note Miss R’s concern that most of her sister’s consultations with the Practice during this time took place over the telephone. Within its complaint response, the Practice said these were conducted during the COVID-19 pandemic as well as some video consultations where appropriate.
46. GMC prescribing guidelines explain that there are different situations were remote consultations may be appropriate. This includes when the doctor has access to the patient’s medical records, can give patients all the information they want and need about treatment options, they do not need to examine the patient and there is a safe system in place to prescribe.
47. Having considered the appointments that Miss K had, we think it was appropriate for them to take place over the telephone and in line with GMC prescribing guidelines. This is because most of her symptoms were related to UTIs and there were known reasons for this, due to the procedures she had in early August, or the self-catheterisation which increases the likelihood of UTIs. The UTIs could also be confirmed by urine samples, which Miss K was asked to hand in at the Practice and it was able to provide treatment to her by prescribing antibiotics.
48. We think that seeing Miss K face to face during this time is unlikely to have changed the investigations and treatment provided.
49. It was appropriate to book Miss K a face-to-face appointment in January due to her explaining she had a new symptom of pain (that was not related to anything else), so that a physical examination could be carried out.
Antibiotics
50. The Practice said it mainly prescribed different antibiotics following advice from Miss K’s urologist and prescribed further ones alongside this when she attended with different symptoms. Miss R says the various antibiotics did not help or treat her sister.
51. NICE UTI guidance says that if a woman presents with recurrent UTIs, her symptoms should be managed depending on her specific clinical situation. This includes taking a urine sample, use of an immediate short-course antibiotic treatment, seeking specialist advice or referring the women to urology and considering the use of antibiotic prophylaxis (antibiotics given as a precaution to prevent, rather than treat, an infection).
52. As explained under issue one, Miss K had her urine sampled, was prescribed different antibiotics for the UTIs she experienced, and these were the correct medications to give. The Practice also took advice from the urology department, about what treatment should be given, including the use of long-term antibiotics. This was appropriate as she was already under the urology department for her long-term condition, and they were the specialists in providing treatment for the condition she had.
53. The urology department was also in contact with the Practice, it had detailed the investigations Miss K had and the plan for follow up.
54. We understand Miss R’s concern that her sister was prescribed different antibiotics and kept having UTIs. Each time she contacted the Practice it took the correct steps to investigate her symptoms, and provide treatment, including taking advice from the urology department. We think these things are in line with GMC good medical practice guidelines and NICE UTI guidance. It was not indicated at that time that Miss K’s symptoms were caused by any other condition.
55. There is no indication of failings in the care provided to Miss K by the Practice, so we do not uphold this part of the complaint.
The Trust
Diagnosis of cancer
56. Miss R complains the Trust failed to diagnose that Miss K had cancer when she had the biopsy in August 2021. We looked at this issue with our urology adviser.
57. EAU guidelines recommend a cystoscopy is carried out in atypical cases of recurrent UTIs, for example if there is interstitial cystitis (inflamed or irritated bladder wall) or bladder cancer is suspected.
58. A cystoscopy was carried out in August 2021, and this was reported as showing severe inflammation and a biopsy of the area was taken. These were the appropriate investigations to exclude cancer and as recommended by EAU guidelines.
59. The biopsy showed keratinising squamous epithelium (noncancerous changes to the cells lining the organs) of the bladder and concluded that Miss K had follicular cystitis, recurrent UTIs and an overactive bladder, and malignancy was excluded.
60. There was no evidence of cancer at this stage, so we do not think the Trust failed to diagnose it.
Investigation of Miss K’s bladder symptoms when they persisted after August 2021
61. Urology Journal highlights evidence that keratinising squamous epithelium of the bladder is a significant risk factor for the subsequent development of bladder cancer, and cystoscopy follow up is recommended. There is no specific timeframe highlighted for this and is based on a clinical decision.
62. Miss K’s condition and investigation findings were discussed at the MDT held at the urology department on 22 September 2021 and she was seen in the urology clinic in October 2021.
63. The MDT recommended that she had a repeat cystoscopy in 9 months. The Trust were also due to review Miss K in the urology clinic again and said the timeframe for this would have been three months. Unfortunately, the Trust admitted Miss K to hospital before a clinic review could take place.
64. Miss R also complained the Trust did not take appropriate action to treat the symptoms Miss K was experiencing, during the appointments she had in September and October.
65. NICE UTI treatment guidance recommends daily antibiotic prophylaxis (antibiotics given as a precaution to prevent, rather than treat, an infection) for recurrent UTIs. This was the treatment provided to Miss K in the form of low dose, long term antibiotics, when the biopsy excluded anything abnormal.
66. We think the Trust took the right steps to carry out a cystoscopy in August 2021, and this was the correct investigation to rule out bladder cancer. The results were discussed in an MDT and a plan made for Miss K’s treatment going forward, which included antibiotics as recommend by NICE UTI treatment guidance. There was no evidence she had cancer at that stage and the MDT recommended a repeat cystoscopy and follow up and this is in keeping with the evidence in the journal highlighted above.
67. We recognise that Miss K’s symptoms persisted and as explained earlier, investigations were carried out by the Practice and the Trust, and treatment provided. We think this is in line with GMC good medical practice guidelines which explains doctors should promptly provide or arrange suitable advice, investigations or treatment where necessary.
68. Miss K was also provided treatment in the form of antibiotics, and this is in line with NICE UTI treatment guidance.
69. We think Miss K was managed in accordance with the available evidence and guidelines, and the investigations she had, did not show evidence of bladder cancer. Despite this, it appears Miss K developed an aggressive form of bladder cancer before presenting to the Trust as an emergency in January 2022. We recognise this was a difficult time for her and her family.
Communication
70. Miss R complains the Trust waited three weeks to tell her sister she had cancer, and when it did, she was on her own without any support.
71. GMC good medical practice guidelines explain that doctors should give patients information they want or need to know in a way they can understand.
72. NICE cancer guidelines state doctors should discuss with people who have suspected cancer, their preferences for being involved in decision-making about referral options and further investigations including potential risks and benefits.
73. Miss K had surgery on 27 January 2022. The surgery revealed an extensive bladder tumour which had unfortunately extended the bladder. A biopsy was taken to clarify the results.
74. After surgery, Miss K was cared for on the intensive care unit and moved back to the ward on 30 January. On 31 January, a consultant reviewed her and informed her of the surgical findings. We think the time it took to inform her of this was appropriate, given she had come out of surgery and was recovering.
75. The results from the biopsy were made available to the Trust on 15 February. The doctor informed Miss K of the results on 16 February when they were available and there was no delay in this.
76. Miss K’s doctor informed her of the diagnosis at the same time and explained the cancer had unfortunately metastasised. They also explained the oncology department would discuss treatment options with her when it carried out its review.
77. We recognise how difficult it must be to receive a cancer diagnosis and understand it was a challenging time for Miss K. The doctor was open to her about the results and her diagnosis, and we think this is in line with the guidance above. The medical records note that staff supported her following the news and Miss R visited her shortly after.
The Trust provided no treatment to Miss K following her cancer diagnosis
78. Miss K had a rapidly progressive and advanced cancer of the bladder. This was not present on the cystoscopy and biopsies carried out in August. When the cancer was diagnosed in her bladder, it had sadly spread to other parts of her body (metastatic cancer).
79. We considered what happened in Miss K’s care after the diagnosis of cancer, with our oncology adviser.
80. EAU guidelines on bladder cancer explain the treatment options for the type of cancer Miss K had.
81. A radical cystectomy (surgical removal of the bladder) can be considered but the evidence of its effectiveness is weak. Radical radiotherapy (high doses of radiotherapy) is also mentioned. However, this is not considered to be first-line treatment for the type of bladder cancer that Miss K had. There is also an option of down staging chemotherapy (planned cycles of chemotherapy).
82. In January, Miss K had a partial cystectomy where the surgical team tried to remove as much as the tumour as possible. Following the operation, she was diagnosed with a locally advanced cancer which was high risk.
83. Her case was discussed with another hospital to discuss treatment options, which as stated above can include more surgery, radiotherapy and chemotherapy.
84. Miss K was not well after surgery and sadly her condition deteriorated. She had a high-risk cancer and was expected to deteriorate, which she did. Unfortunately, she would not have benefited from any further treatment. This is because she was not fit enough for it to have a positive impact on her prognosis.
85. The decision not to give her further treatment, was in line with EAU guidelines on bladder cancer. We understand this was a distressing time for Miss R and her family.
Did not give Miss K palliative chemotherapy
86. EAU guidelines on bladder cancer explain the decision-making process for giving a patient palliative chemotherapy.
87. It states that a fit patient (and a possible candidate for palliative chemotherapy) would be considered as having a performance status of up to two. This is based on if the patient is fit enough to do at least some physical activities and be up and about for more than 50% of the waking hours.
88. Miss K’s performance status was three or four as she was bed bound and not mobile. A patient with a status above two would not be indicated to have any palliative chemotherapy because they are too poorly, and the evidence shows there would be no benefit from it.
89. Unfortunately, due to this it was not indicated for Miss K to have palliative chemotherapy as she was too poorly and would not have received benefit from it. The decision not to give her palliative chemotherapy, was therefore in line with the guidelines above.
Palliative care
90. Miss R complains about aspects of the palliative care provided to her sister when she was at home. We reviewed this aspect with help from our nursing adviser.
Delay in being seen following Miss K’s discharge
91. In its complaint response, the Trust’s community palliative care team received a referral on 14 April 2022, Miss K was discharged from hospital on 15 April and an initial visit took place on 17 April by the district nursing team to assess her needs. They requested an urgent palliative care review, and this was carried out on 19 April.
92. The document ‘One chance to get it right’ sets out priorities to ensure high quality, consistent care for people in the last few days and hours of life. As part of this, it says care should involve an assessment of the person’s condition whenever that condition changes and timely and appropriate responses to those changes, with an individual plan of care in place.
93. The need for a package of care and intermediate care team support on discharge, was documented in Miss K’s medical records on 25 March when discharge planning was started. There is also reference to a review by the palliative care team on 1 April.
94. On 4 April, a visit was carried out to assess Miss K’s home as suitable for discharge and on 6 April, a day visit schedule was planned together with a hospital bed to provide for Miss K’s ongoing care needs.
95. Over the next few days, discharge plans were put in place including a mobile commode and a referral to the district nursing team and community palliative care team.
96. It appears that while Miss K was in hospital, referrals were made to the community teams in a timely manner, although the complexity of Miss K’s condition does not appear to have been well communicated or acted upon.
97. Prior to her discharge, we recognise that Miss K’s condition was rapidly changing, and it appears there was a delay in recognising that she was coming to the end of her life.
98. The Trust discharged Miss K on 15 April, but she was not seen for two days.
99. The district nursing team that first attended to her needs at home were unaware that she was coming to the end of her life and were not able to manage her complex needs in relation to her pain relief or stomas (issues considered in further detail below). They also noted there were gaps in Miss K’s discharge planning such as a do not resuscitate form not being completed and specific medications (injections) to control Miss K’s symptoms had not been considered.
100. The palliative care team did not visit Miss K until 19 April, this is four days after her discharge from hospital.
101. The evidence shows the palliative care team did not assess or address Miss K’s changing needs in a timely manner following her discharge.
102. There was a delay in her being seen at home by the palliative care team when she required this for her needs, but this had not been recognised earlier and a robust plan of care was not in place. We consider this is not in line with ‘One chance to get it right’ and a failing in care occurred. We consider the impact from this failing below.
Pain not managed
103. NICE last days of life guidance provides recommendations for the care of adults in their last two to three days of life. It describes the assessment of a dying person’s level of pain and matching the medicine to the severity of pain.
104. Prior to her discharge, the medical records note that Miss K was experiencing pain. On the days leading up to her discharge, extra pain relief was provided to her from 11 to 15 April. This increase in demand should have been recognised and a stronger form of pain relief considered such as a syringe driver (battery powered pump) to provide sub-cutaneous (given under the skin) morphine, prior to her discharge.
105. When Miss K went home, she did not take her oral pain relief regularly and when she was seen by the district nurses on 17 April, she was in so much pain, that she could not move. This indicates her pain was not managed well at this time.
106. We note the team suggested that Miss K’s family contact the district nurses to request administration of pain relief via injections, as needed. We do not think this was an appropriate request to make of her family as Miss K had not been sent home with that medication and it was not commenced until the palliative care team saw her.
107. When the Trust discharged Miss K, there was a delay in her needs being assessed and this led to her being in pain that was not controlled. Miss K should have had a robust plan in place to escalate her oral medication to sub-cutaneous injections, which would have led to increased and earlier visits at home.
108. Overall, we do not think the palliative care team managed Miss K’s pain well when she was first discharged home, and a failing in her care occurred. We consider the impact from this below.
Help for Miss K’s stoma
109. In its complaint response, the Trust said it was trying to engage with Miss K about her stoma to ensure she could care for it. It said it regretted not paying more attention to changes in her physical condition, as she was becoming more fatigued and less able to care for herself. It said the district nurses wanted to check Miss K’s stoma on 19 April, however they were unable to do so due to Miss K’s pain. It said a stoma nurse arrived on 21 April to change the stoma bag, and it should have addressed the concerns much earlier on and offered support.
110. Stoma care guidelines explain that part of the hospital’s role is to ensure ‘patients with a stoma are safely discharged from hospital with the knowledge and skills to be independent at home. In the absence of independence then there will be structures in place to support them. They will also have details of how to contact their stoma care nurse’.
111. The evidence from the medical records shows that throughout Miss K’s admission, she struggled with managing her stomas. It is documented she was seen by a stoma nurse on 2 March, but she struggled to become stoma competent and asked staff to help her. The wounds were not easy to manage as they did not heal well and there were several reports of leakage. We recognise this must have been distressing for Miss R.
112. Prior to her discharge, the doctor asked the palliative care nurse to take Miss K’s care of her stomas into account on discharge, as she was unable to do it herself.
113. Whilst the aim of stoma care is to try and ensure a patient can self-manage, after her discharge, Miss K had become less well and required more support. This does not appear to have been addressed, particularly on her discharge home when immediate support was not available. We recognise this was an upsetting time for Miss K and her family.
114. The stoma nurse did not visit Miss K until 21 April, the day she died. We think that before this time she was left without adequate support to help her with her stomas. This is not in line with stoma care guidelines and shows a further failing in Miss K’s care at home. We have considered the impact below.
Impact
115. We have identified failings in the palliative care provided to Miss K while she was at home. The evidence shows there was a delay in her being seen after her discharge, her pain was not managed well after her discharge, and she was not provided with appropriate help for her stomas.
116. We think these failings led to Miss K being left without adequate support on her discharge home which caused her upset and distress at the end of her life. She also experienced some pain shortly after discharge that ranged from mild to more severe and some discomfort from not being supported with her stoma care.
117. We think this was distressing for Miss R and her family to witness at the end of Miss K’s life. This is a lasting memory that exacerbated their grief after Miss K died. We recognise how difficult and upsetting this is for them.
118. Our complaint standards say organisations should look for continuous improvement and use the lessons learnt from complaints to make sure they do not repeat maladministration or poor service and apologise when things go wrong.
119. In its complaint response, the Trust apologised that the palliative care provided to Miss K was not of a level expected and for the impact of this. It also explained a number of steps it has taken to improve its service to try and ensure that this never happens again.
120. This includes the introduction of a virtual ward for palliative care patients. This will provide a focus for better recognition when someone is approaching the end of their life and should ensure a much more robust plan can be put in place for their care on discharge.
121. It is also recruiting a pharmacist to the team who will assist with concerns about medication access and any other changes that may be required. This should improve the way that pain medication is dealt with after someone’s discharge.
122. It has also introduced training on the ‘Gold Standards Framework’ which is a charity and training provider for frontline staff and offers practical and evidence-based end of life care service improvement programmes. We think this will support both better recognition of deterioration in patients and help staff to be more proactive in supporting people in the final stages of life.
123. The Trust has also made improvements in its discharge planning which should see that stoma care has been added to the discharge plan, to better support people after their discharge.
124. The complaint and learning actions from it, has also been shared with all adult teams in the Trust and with the teams that were involved in delivering care to Miss K. This should ensure that staff reflect on the care provided and learn from it.
125. We think these actions should ensure the relevant standards are met (as highlighted under the palliative care issues above) and are in line with our complaint standards. We hope this provides some reassurance to Miss R and her family about the improvements made to the service provided to future patients.
126. Miss R is also seeking a financial remedy, and we have made a recommendation at the end of this report to address this.