University Hospitals Plymouth NHS Trust

5. Ms U complains about the care and treatment she received from University Hospitals Plymouth NHS Trust (the Trust) around the middle of November 2020. Ms U specifically complains:

• the Trust failed to appropriately do follow up scans of her kidney stone • the Trust failed to provide appropriate ADHD and Autism Spectrum Condition support • the Trust failed to give her sufficient hydration.

6. Ms U says because the Trust failed to identify the kidney stones she was in pain and unable to eat. She says it also exacerbated her urological problems.

7. Ms U says because of the lack of appropriate ADHD and Autism Spectrum Condition support she was unable to process information and understand what was going on. This left her in a state of fear and confusion throughout her admission. She says this meant the Trust was unable to properly manage her symptoms and treatment. She says this caused further distress and health deterioration.

8. Ms U said this culminated in her decision to leave the hospital, which further caused distress and health deterioration.

9. Ms U says she was severely dehydrated when she left the Trust, and this resulted in her having another hospital admission.

10. Ms U says she now avoids the Trust as she has lost confidence in it. She now travels to Exeter if she needs hospital treatment.

11. Ms U would like the Trust to acknowledge the failings, apologise for them, and improve its service.

12. Ms U was taken to hospital by ambulance with abdominal pain around the middle of November 2020.

13. Ms U has Autism Spectrum Condition (ASC, also referred to as Autism, is a developmental condition that can affects social interaction, communication, and sensory processing) and ADHD (Attention Deficit Hyperactivity Disorder - a condition where the brain works differently to most people).

14. On the same day as her admission, Ms U had a CT scan (Computed Tomography – a type of scan used to produce internal images of the body). This found a 3 x 3 x 2 mm ‘kidney stone’ within the left ureter (the duct where urine passes from the kidney to the bladder). As this was in the ureter it is a ureter or ureteric stone. For the purpose of this report, we will refer to the stone as a kidney stone or just stone, as these are the more common and understood terms.

15. Kidney stones are abnormal, hard chemical deposits usually found in the kidneys or in the ureter, the tube that connects the kidneys to your bladder. They can be extremely painful and can lead to kidney infections or the kidney not working properly if left untreated.

16. The kidneys are two bean-shaped organs about the size of a fist. They are situated just below the rib cage on either side of the spine. Their crucial functions include filtering waste products from the blood, maintaining balanced electrolyte levels, and regulating blood pressure.

17. The following day the Trust attempted a lithotripsy. This is a type of treatment for kidney stones. It sends focused ultrasonic energy or shock waves directly to the stone to attempt to break it into smaller stones. The treatment was stopped early after 481 shocks due to the pain it caused Ms U.

18. Two days later there was a discussion with Ms U regarding a treatment plan. It is recorded Ms U would like to trial URS (Ureteroscopy). This is a procedure in which a small, flexible scope is inserted through the urethra into the bladder and ureter. It can be used to remove stones in the ureter.

19. The Trust performed an X-ray later that day. It could not see the kidney stone as it appeared on the CT scan two days earlier. The Trust concluded the stone likely passed on its own.

20. Three days later the Trust planned to discharge Ms U. Ms U initially said she was happy to be discharged but later found this plan distressing. Before the discharge Ms U self-discharged as she was upset about the planned discharge.

21. Ms U says she was seen at another Trust where she had another CT scan which found the stone was still in place.

Kidney stone

25. We can see Ms U had a kidney stone diagnosed via a CT scan when she was admitted to the Trust. The CT report states the stone was not visible on the scout image. Scout images are taken before a CT scan to help with the scan.

26. Ms U then had an X-ray of the stone two days later. The stone was not visible on the X-ray. The Trust concluded the stone had likely passed. We understand Ms U’s stone had not passed.

27. With this investigation we are considering if the follow-up X-ray was appropriate in the circumstances. Firstly, we consider the below suggests this was not an appropriate scan.

28. Our adviser confirmed there is no guidance that specifies what type of scan should be done as a follow-up. The Trust highlighted the relevant NICE guidance NG118, does not specify what type of scan should be done as a follow-up.

29. In the absence of guidance, journal articles can provide a standard or understanding of what should happen. Ms U’s stone was relatively small. Journal A (above) says stones less than 5mm have a 37% chance of been visible on X-rays in this area – which was the case here. This increases to 87.5% for stones greater than 5mm. Ms U’s stone was less than 5mm.

30. This suggests, based on the size of the stone alone, an X-ray would likely not have revealed the location of Ms U’s stone.

31. Further, the initial scout image done before the CT scan not showing the stone, is further evidence the stone may not have been visible on an X-ray, meaning an X-ray was not an appropriate scan. Our adviser says it would have been unlikely the stone would have appeared on the X-ray after not appearing on the scout image.

32. On the other hand, we consider the below suggests an X-ray was an appropriate follow-up scan.

33. NG118 says exposure to radiation should be considered when considering follow-up imaging. CT scans generally expose patients to higher radiation exposure. Our adviser said an X-ray in itself is likely an appropriate scan in most cases. This suggests a follow-up X-ray is usually appropriate but the question here was whether this is the case when the stone is small and possibly not visible on the scout image.

34. There is some discrepancy within the records, and the Trust urologist’s recollection, about whether the stone was visible in the scout image. We understand there was only one CT scan done during the admission. The CT report states, ‘the stone is not readily visible on the scout imaging.’ However, the discharge summary says the stone was visible on the scout image, as did the Trust in response to our investigation.

35. The Trust acknowledged the CT report says the stone was not visible on the scout image. It said the clinical team felt, after further review of the scout image, there may have been an opacity in the region where the stone was located. The Trust also said a specialist urology-radiologist did not report on the CT scan. The Trust therefore seems to be suggesting there was an error in the CT scan report saying the stone was not visible on the scout image.

36. The CT scan report is a contemporaneous report of the scan (done at the time), it is therefore less likely to be incorrect and therefore is usually more compelling evidence to determine what the images show.

37. That said, it is possible the CT report is wrong. This would explain the discrepancy in the records about whether the stone was visible, and clinical team’s view about what the image shows. We therefore consider this is plausible.

38. Based on this, we consider we cannot say on balance, more likely than not, if the stone was visible on the scout image or not. If the stone was not visible than it would likely mean a follow-up X-ray was not suitable. But as we consider we cannot say we cannot conclude this.

39. We have not seen copies of the images, which would be helpful to understand if the stone was visible. However, based on what the Trust says, the scout images may be ambiguous. In any event, the images may not help us reach a decision.

40. This is because the Trust has provided further research (journal B) that suggests some stones that are not visible on the scout image are more likely to be visible on an X-ray. This contradicts the above rationale which may suggest an X-ray was not an appropriate follow-up scan. This also highlights the lack of clear guidance on this matter and the difference in research and clinical opinion.

41. In summary, there is a gap in the objective robust guidance relating to this matter, like NICE guidance, that we can rely on to guide our thinking on what should happen.

42. Our decision hinges on whether the stone was visible on the scout image which is in doubt due to the discrepancy in the records and contradicting evidence from the Trust’s urologist.

43. Finally, and more importantly, in the absence of any guidance research journals and clinical opinion can help guide us, but on this subject, this evidence is contradictory. It appears the answers to the question of what the appropriate follow-up scan are subjective that can change between clinicians and be supported by different research.

44. When this is the case, it is very difficult for us to robustly say what should have happened on balance. If we cannot do that we also cannot say if there was or was not a failing. As such, we simply say we cannot make a decision on this matter.

45. Considering all the above, we consider we cannot make a decision about this part of the complaint.

46. With this decision we are not disagreeing with what Ms U or the Trust have told us. We are also not condoning or criticising the Trust’s care. Rather we cannot say on balance what should have happened. In reality, it may be a situation where there is no right or wrong answer. It may be the case either a CT scan or X-ray could be justified in this specific situation.

ADHD and Autism Spectrum Condition support

47. We can see two days after Ms U’s admission the Trust’s clinicians discussed Ms U’s care with an autism specialist nurse (ASN) at the Trust, to get extra support to help with Ms U’s decision making. The ASN had no capacity to see Ms U but provided some advice to the Trust clinicians. They advised clinicians to use the ‘autism folder’ (a folder prepared by the ASN that instructs clinician on best practise to care for autistics patients). They suggested clinicians use easy read books with the patient. These are books written in an accessible way and usually include pictures. The ASN suggested clinicians use a quite side room when talking with Ms U, and sit and write down information during discussions if Ms U would find this helpful.

48. The Trust said the ASN does not include direct support for patients due to lack of capacity unless there is high complexity involved.

49. The Trust sent us a reasonable adjustment request form for autistic patients accessing its hospital services. This asks the patient to specify any adjustments in care they would like clinicians to consider. It also sent us a local autism service’s advice referral form. These documents were not filled in.

50. The Trust also sent us a hospital passport for autistic patients. A hospital passport is a document that includes useful information for clinicians to help them care for patients. Again, this was not filled in, but we can see a copy of a different health passport Ms U says she completed herself after contacting the National Autistic Helpline. This is dated three days after her admission. Ms U says the Trust did not use her health passport.

51. Ms U says in her health passport she struggles to communicate her symptoms. She asked for information to be explained in ‘bitesize chunks’ and favours communication through writing it down. It also says she will say anything to end interactions that make her uncomfortable and anxious. The records do not show the patient’s needs or requests in her health passport were recorded or considered when discussing this with the patient. Ms U says this was not done.

52. The Trust says in its response it asked on several occasions if it could contact Ms U’s family. It says Ms U did not give permission.

53. Our adviser says there is no specific guidance about this, but there is more general guidance such as NICE guidance CG142. As there is nothing more specific, then the Trust’s local Autism Service SOP is relevant here, as well as the GMC’s Good Medical Practice (GMP).

54. The Trust’s standard operating procedure (SOP) says, ‘Ensure ward care plans reflect the needs of the patient with Autism, making and recording reasonable adjustments made based on information provided by patient.’

55. We were pleased to see the Trust made some attempts to understand Ms U’s needs, but this was only after two to three days after her admission. We cannot see Ms U’s needs were recorded in a care plan or in the records.

56. We can see the Trust did take steps to support Ms U’s needs, but it could have done more to understand, record, and meet those needs, such as using the documents in the autism folder, and recording Ms U’s needs that were in her health passport.

57. We consider this is contrary to the Trust’s SOP because the care plans did not reflect the needs of the patient with Autism based on the information Ms U provided, and it also did not record any reasonable adjustments.

58. The records state on the day of discharge the patient is ‘happy to go home’. It is recorded in the nursing notes the patient was not happy with the decision to discharge her and was very upset.

59. This is consistent with Ms U’s health passport, which was available at the time of her discharge. This says Ms U struggles to communicate her symptoms. She also said if she feels uncomfortable or anxious by someone, she has a tendency to say anything to make that person go away. Clearly Ms U was anxious about the discharge given what then happened. Ms U was also complaining of more pain, and said she did not want to be discharged, so it is unclear if she was truly happy to be discharged.

60. The GMP says, at paragraph 32, doctors must give patients information in a way they can understand. It says they should make sure that arrangements are made, wherever possible, to meet patients’ language and communication needs.

61. We cannot say this was done at the Trust, and how her discharge was communicated may be an example of where the Trust needed to take additional care to meet Ms U’s communication needs. Ms U’s communication does not look to have been recorded as per the Trust’s SOP, if these had been recorded, they would have more likely to have been met.

62. NICE guidance CG142 says, all clinicians providing care and support for autistic adults should be aware of under-reporting and under-recognition of physical disorders in autistic people. This suggests the Trust should have taken more care when communicating Ms U’s discharge with her.

63. The notes suggest Ms U was told the kidney stone had passed and nothing further could be done other than to manage the pain. The Trust told us it planned to follow up with Ms U in four weeks after discharge. It has not been recorded this was communicated to Ms U when she was told about the discharge.

64. We can see from the records it is noted the day before her discharge, the plan was to wait until Ms U’s pain had reduced before discharging her. It is not clear if this was communicated to Ms U. The next day Ms U complains of more pain, but the decision is made to discharge, country to what had previously been recorded in the records. This is confusing from our perspective. We can understand why Ms U may not have fully understood, given she has specific communication needs and was in pain and already confused.

65. We consider the Trust could have done more to ensure it met Ms U’s communication needs. This could have been done by first recording her needs as per its SOP, and secondly meeting those communication needs as per the GMP to help Ms U better understand her treatment plan and next steps.

66. We consider this amounts to a failing and caused Ms U further fear and confusion.

67. It is clear this was a difficult time for Ms U. She was in a lot of pain and was being told her stone had passed and there was nothing more the Trust could do. Ms U says she was fearful and confused. Ms U had specific communication needs which were not met. Had these needs been recorded they would have been more likely met. Had these needs been met, we can say on balance Ms U’s fear, confusion, and distress would likely have been reduced.

68. We therefore consider this failing caused Ms U fear, confusion and distress.

69. The impact of this failing contributed to cause Ms U’s overall significant distress that led to her self-discharge. We appreciate this was ultimately Ms U’s decision, but it highlights the distress she was feeling.

70. We considered if the Trust has already made steps to put right this failing. The Trust maintained nothing went wrong with this aspect of Ms U’s care. Therefore, we cannot see the Trust has already remedied this failing.

Hydration

71. Ms U considers she was not provided enough fluid during her admission at the Trust. She says this caused her to be dehydrated which exacerbated the above impact.

72. Ms U recalls receiving no fluid at the Trust during her admission other than having intravenous (IV) fluids (fluids injected directly into the vein to treat or prevent dehydration) for an hour. She says following her discharge she went to another hospital at another Trust, as she was severely dehydrated. Ms U says she almost died due to her dehydration.

73. Ms U says she was mobile during her admission as she went to the toilet a lot to urinate. She also says she was vomiting a lot. She says this combined with no fluids made her severely dehydrated.

74. The records show Ms U was given 2.5 litres of IV fluids for the first two days of her admission. Following some difficulties inserting the catheter the Trust reviewed the need for ongoing IV fluids two days after Ms U’s admission. The Trust advised Ms U to take fluid orally instead of via IV that same day.

75. This is in line with the NICE guidance CG174, which says, IV fluid therapy is only for patients whose needs cannot be met by oral (mouth – drinking) or enteral routes (tube feeding), and it should be stopped as soon as possible.

76. The records show Ms U was independent and mobile during her admission. Which Ms U confirms. Ms U was encouraged to eat and drink regularly. The nursing records say Ms U was fully independent with personal care. The nutrition care rounds are complete, and fluids were ticked as offered. The intentional care round shows Ms U was offered food and fluids and the pressure ulcer risk assessment shows Ms U was independent and was encouraged to eat and drink.

77. This suggests that on balance Ms U’s hydration needs could be met orally and therefore we consider the decision to stop IV fluids was correct and in line with the guidance.

78. The records do not show any concerns about lack of hydration, or documentation of Ms U been unable to access drinking water. Likewise, there was no indication in the records of Ms U’s observations showing she was dehydrated.

79. Ms U’s recollection of what happened is different to what the records show. We therefore, as above, need to consider what likely happened on balance (more likely than not). In this case, we consider the records are very compelling evidence. This is because they are contemporaneous (taken at the time) meaning they are likely to be accurate, and we have seen many different record entries supporting each other than Ms U was independently mobile and regularly encouraged to eat and drink. Therefore, we consider the records are more compelling evidence than Ms U’s recollection to establish what happened.

80. We note Ms U says she was not provided with any fluids after being removed from the IV fluids. We are not disagreeing or disregarding what Ms U is saying. This does not change what we have seen in the records where Ms U was regularly encouraged to drink.

81. Ms U’s fluid intake as per her fluid charts is low, however this is unlikely to paint a full and accurate picture. This is because Ms U’s fluid charts are incomplete. Because Ms U was independent, it would not be possible or reasonable for the Trust to record every and all fluid intake and output. Therefore, we consider the fluid intake charts do not hold much weight when considering Ms U’s fluid intake.

82. We consider what is more compelling are the many record entries where Ms U is recorded as independent and encouraged to drink as explained above.

83. We consider Ms U’s hydration is fundamental nursing care and therefore the NMC’s Code applies, specifically section 1.2 - ensuring the delivery of the fundamentals of care effectively. We consider, the Trust did a lot to ensure Ms U was hydrated and there was nothing more it could do to ensure Ms U was any more hydrated. Therefore, we consider it delivered this fundamental of care, hydration, effectively and in line with the NMC’s Code. We therefore consider there was no failing with this part of Ms U’s complaint.

1. This is our final report. We partly uphold Ms U’s complaint. We consider we cannot say on balance if there was or was not a failing when the Trust chose not to do a follow-up scan of Ms U’s kidney stones. We also consider Ms U’s hydration was appropriately managed. We consider the Trust did not provide appropriate autism support in the form of communication.

2. We consider the above failing caused Ms U fear, confusion, and distress throughout and after her admission culminating in her decision to self-discharge and her loss of confidence in the Trust.

3. We recommend the Trust write to Ms U acknowledging what possibly went wrong and apologise for this. We also recommend the Trust provides an action plan to avoid the failing happening again.

4. We appreciate how the events complained about impacted Ms U. We recognise this was a very difficult time for Ms U when she was in pain while also been scared, confused, and distressed.