Failed to treat her sister quickly enough and discharge her from A&E
13. Miss O says if her sister had been treated quicker in A&E, and the decision made to discharge her home sooner, her carers would still have been at home and she would have been allowed to leave.
14. The GMC guidance says:
‘You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must:
• adequately assess the patient’s conditions, taking account of their history (including the 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.
In providing clinical care you must:
• prescribe drugs or treatment, including repeat prescriptions, only when you have adequate knowledge of the patient’s health and are satisfied that the drugs or treatment serve the patient’s needs
• provide effective treatments based on the best available evidence.’
15. The records indicate Miss P attended A&E at 3.00pm on 9 February 2023 and was immediately assessed by the Trust’s triage nurse. The RCEM guidance recommends that all patients who attend A&E should be triaged and assigned a priority according to the severity of their illness or injury. The standard system in the NHS is the Manchester Triage System which assigns a number from 1 to 5 (1 being the highest priority and 5 the lowest priority) according to the patient’s presentation with a recommendation for the target time to be seen by a clinician (from immediately in priority 1 to within 4 hours for priority 5).
16. The Trust’s triage nurse assigned Miss P a priority of 4, which indicates her needs were not urgent. According to the Manchester Triage System a patient with a priority of 4 would normally expect to be seen by a clinician within 2 hours.
17. Our adviser said the recent and ongoing situation in A&E departments nationally has led to waiting time targets becoming increasingly extended and unachievable by the vast majority of NHS Trusts. The combination of increased attendances, inability to recruit and retain A&E staff, a national lack of in-patient beds to move patients to and the continuing effects of the COVID pandemic have all contributed to extreme difficulties for A&E departments in hitting targets such as triage and waiting times. For patients assigned a low triage priority, longer waits than recommended are common due to the need for A&E staff to concentrate on more seriously ill and injured patients.
18. The records show that Miss P waited over 5 hours from her initial triage until she was seen by a doctor in the assessment unit at 8.30pm. Although the Trust failed to meet the target time of 2 hours we do not think this can be considered a failing in the current climate due the ongoing widespread issues and demands faced by A&E departments throughout the NHS.
19. The records indicate Miss P had needs which required carers and nurses to attend to her in her home to provide care and support. The fact that her carers were not at home to support her return that evening raised a safeguarding concern for the Trust. The doctor concluded that it was not safe to send Miss P home in the evening with no carer support available to assist her.
20. Our A&E adviser said this decision can be supported by the information in the records and is consistent with the GMC guidance. The evidence in the records indicates it was unsafe to discharge Miss P at this point given her presentation, her complex needs and the lack of any care support to assist her return home that evening. Our A&E adviser said the impact of discharging her home without adequate care and support could have been severe. The Trust recognised this risk and made the appropriate decision not to discharge her on the grounds of safety.
21. We carefully considered Miss O’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. We acknowledge Miss O’s concerns about the time her sister spent in the Trust’s A&E department.
22. We acknowledge that her sister waited longer to be seen in the A&E department than she would have expected under the Manchester Triage System. However we do not think this can be considered a failing and we do not consider the waiting time on this occasion to be unreasonable in light of the ongoing widespread demands faced by A&E departments throughout the NHS.
23. We found the Trust acted in accordance with the GMC guidance and took the safest option available when deciding not to discharge Miss P on the evening of 9 February 2023.
Inappropriately placed her sister in a side room of a covid ward
24. Miss O says the Trust’s decision to place her in a side room of a covid ward caused her sister to suffer neglect. She says this contributed to her decline and led to her death.
25. In its response to this point of complaint the Trust said:
‘Often, we will prioritise nursing patients who are living with learning disabilities to be cared for in a side room. From a reasonable adjustment perspective side rooms offer a more calming and quiet space as opposed to being in an open bay with other patients and therefore your sister was transferred to a side room.’
26. The records indicate the Trust placed Miss P in a side room on Washbrook ward, a general medical ward, following her transfer from the assessment unit of the A&E department. Miss P remained in the side room until she began to experience breathing difficulties on 19 February 2023. The Trust then transferred her to its ARCU.
27. The records indicate Miss P was continuously cared for by the doctors and nurses whilst in the side room. The Trust completed contemporaneous records highlighting the care interventions throughout her stay. The records indicate Miss P was also reviewed by the Trust’s chest physiotherapist and learning disability specialist nurse whilst in the side room and supported by the Trust with her personal care, eating and drinking.
28. Our nurse adviser said there is no evidence in the records to indicate the Trust’s decision to place Miss P in a side room meant it was unable to provide her with the care she needed. Our nurse adviser said there is no evidence in the records to indicate being in a side room caused Miss P to suffer from neglect.
29. Our physician adviser said a side room would generally be considered advantageous to a patient due to the reduction in extraneous noise and activities compared to a normal ward or bay. Our physician adviser said the records indicate Miss P was regularly attended to by the doctors and nurses whilst in the side room and she was reviewed whenever her circumstances dictated. Our physician adviser said there is no evidence in the records to indicate Miss P was disadvantaged by being in a side room and it can be considered good practice given her needs at this time.
30. We carefully considered Miss O’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. We acknowledge Miss O’s concerns about the time her sister spent in the side room. It is clear from her account that this was a very distressing time for her and her sister.
31. We found the Trust acted in accordance with the GMC guidance when deciding to treat Miss P in a side room. We have not identified any evidence to indicate the Trust’s decision was detrimental to her condition or led her to suffer neglect.
Failed to provide appropriate treatment to prevent her from becoming dehydrated
32. Miss O says the lack of fluids form the Trust caused her sister to become dehydrated, develop a buildup of catarrh and contributed to her worsening respiratory problems.
33. The NICE fluid therapy guidance recommends intravenous (IV) fluid therapy as a way of replacing fluids into the body to reduce the risk of dehydration. It states:
‘Principles and protocols for IV fluid therapy
The assessment and management of patients' fluid and electrolyte needs is fundamental to good patient care.
Assess and manage patients' fluid and electrolyte needs as part of every ward review. Provide IV fluid therapy only for patients whose needs cannot be met by oral or enteral routes, and stop as soon as possible.
Skilled and competent healthcare professionals should prescribe and administer IV fluids, and assess and monitor patients receiving IV fluids.’
34. The Trust’s Learning Disability and Autism Policy states individuals may need extra support to maintain their own nutrition, hydration and hygiene needs whilst in hospital.
35. The records indicate the Trust carried out an oral hydration assessment in the assessment unit of the A&E department at 2.00am on 10 February 2023 which identified Miss P was able to take oral hydration independently. The records indicate Miss P was offered food and drinks at this time whilst she waited for a hospital bed. The records indicate her fluid intake was monitored daily following her move to the ward.
36. The records indicate the Trust treated Miss P with IV fluids from 13 February 2023 as she began to lose more fluid due to her vomiting. The Trust continued to monitor Miss P’s fluid intake and the records for 16 February 2023 state ‘further IV fluids prescribed today and the patient is drinking plenty of fluid’. On the same date the Trust record that Miss P’s ability to drink was improved with the beaker recommended by Miss O, and a beaker was provided and used from this point.
37. Our nurse adviser said the records indicate the Trust provided appropriate care for Miss P’s hydration needs by treating her with IV fluids and providing extra support with the beaker Miss O suggested to encourage adequate fluid intake.
38. Our physician adviser said there is no evidence in the records to indicate the Trust failed to meet Miss P’s hydration needs. The records show the Trust administered fluid (both through IV fluid therapy and oral intake) in line the NICE fluid therapy guidance.
39. The records of her blood tests indicate Miss P’s renal function (the function carried out by the kidneys to filter waste products from the body and balance the body’s fluids) showed improvement throughout her admission, even when her respiratory problems progressed and she approached the end of her life. Our physician adviser said this indicates dehydration was never a significant physiological problem for Miss P.
40. Our physician adviser said this does not mean Miss P did not suffer with symptoms of dry mouth and chest secretions. However given the improvement she experienced in her renal function it is more likely these symptoms resulted from her respiratory problems and not from her level of hydration.
41. We carefully considered Miss O’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. We acknowledge Miss O’s concerns about the Trust’s management of her sister’s hydration and fluid intake. It is clear from her account that she felt more could have been done by the Trust to support her sister with her hydration.
42. We found the Trust’s management of Miss P’s hydration and fluid intake was in keeping with the NICE fluid therapy guidance and the Trust’s Learning Disability and Autism Policy. We found no evidence which would indicate the Trust’s management of Miss P’s hydration caused her to become dehydrated or contributed to the worsening of her respiratory difficulties.
Failed to provide appropriate treatment to maintain her oxygen levels
43. The BMJ oxygen treatment guidance states:
‘Oxygen is a treatment for hypoxaemia (low blood oxygen), not breathlessness. Oxygen has not been proven to have any consistent effect on the sensation of breathlessness in non-hypoxaemic patients.
Oxygen is required to be prescribed according to a target saturation range and for those who administer oxygen therapy to monitor the patient and keep within the target saturation range.
The guideline recommends aiming to achieve normal or near-normal oxygen saturation for all acutely ill patients apart from those at risk of hypercapnic respiratory failure or those receiving terminal palliative care.
Assessing patients
For critically ill patients, high-concentration oxygen should be administered immediately and this should be recorded afterwards in the patient's health record.
Clinicians must bear in mind that supplemental oxygen is given to improve oxygenation but it does not treat the underlying causes of hypoxaemia which must be diagnosed and treated as a matter of urgency.
The oxygen saturation should be checked by pulse oximetry in all breathless and acutely ill patients, ‘the fifth vital sign’ (supplemented by blood gases when necessary) and the inspired oxygen concentration should be recorded on the observation chart with the oximetry result. (The other vital signs are pulse rate, blood pressure, temperature and respiratory rate).
Oxygen should be prescribed to achieve a target saturation of 94–98% for most acutely ill patients or 88–92% or patient-specific target range for those at risk of hypercapnic respiratory failure.’
44. The records indicate on 19 February 2023 Miss P’s oxygen saturation levels dropped to 79% meaning she was suffering respiratory failure and the Trust moved her to the ARCU to provide her with NIV treatment. The Trust’s critical care outreach team reviewed Miss P on 20 February 2023 and documented her oxygen saturation levels had improved to between 88-90%. The records indicate Miss P’s oxygen saturation levels fluctuated between 88% and 94% in the days that followed and she suffered no further sudden drops in her oxygen saturation level until her condition deteriorated shortly before she died.
45. The records indicate Miss P experienced difficulty tolerating the mask whilst the Trust attempted NIV treatment and she would become distressed and remove it. We acknowledge this made the NIV treatment more challenging for both Miss P and the Trust.
46. The records indicate the Trust considered providing NIV treatment to Miss P under sedation. However the condition driving her respiratory problems was her recent diagnosis of tracheobronchomalacia (a very rare incurable condition which causes severe narrowing of the windpipe) which was not expected to improve. For this reason the Trust decided it could not provide NIV treatment under sedation as it would require Miss P to be permanently sedated. The records indicate the Trust attempted to support Miss P with carefully controlled oxygen treatment without sedation instead.
47. Our physician adviser said the records support the view the Trust provided Miss P with appropriate treatment to maintain her oxygen saturation levels in line with the GMC guidance and the BMJ oxygen treatment guidance. The records indicate as Miss P was suffering with respiratory failure and hypercapnia (raised carbon dioxide levels), the Trust needed to deliver oxygen to her in a controlled way in order to stabilise her oxygen saturation at the appropriate level, in her case at between 88-92%.
48. We carefully considered Miss O’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. We acknowledge Miss O’s concerns about the Trust’s management of her sister’s oxygen levels. We acknowledge how distressing this was for Miss O and her sister and that Miss P experienced great difficulty tolerating the mask during her oxygen treatment. It is clear from Miss O’s account of this aspect of her sister’s care that she feels there is more the Trust could have done to help her sister maintain her oxygen levels.
49. We found the Trust’s management of Miss P’s oxygen level was in keeping with the BMJ oxygen treatment guidance and the GMC guidance. We found no evidence to indicate the oxygen treatment provided by the Trust failed to maintain Miss P’s oxygen saturation within the target levels throughout her admission until she suffered the deterioration in her condition shortly before she died.
Failed to support her posture and positioning
50. Miss O says the Trust laid her sister on her back which was inappropriate and contributed to her breathing difficulties, chest infection and the deterioration in her condition.
51. In its response to this point of complaint the Trust said:
‘You mention that the nurse did not help Miss P to sit up in bed and make her more comfortable. As a hospital, our focus is the comfort of our patients and we are very sad to hear that this did not happen on this occasion. Please accept my apologies. We will ensure that feedback is given to the staff involved and that all staff are reminded of the expectation to prioritise patients comfort and dignity.’
52. The records indicate the nursing team understood the importance of maintaining Miss P’s posture whilst in bed and there are several recorded instances where they adjusted her position to achieve this. However the records also indicate Miss P experienced several episodes of slipping down the bed which required her to be repositioned by the nursing team. The records indicate the nature of Miss P’s condition and background problems meant it was challenging for the Trust to ensure she maintained an appropriate posture whilst in bed. We acknowledge that the Trust has identified this issue and apologised.
53. We do not uphold a complaint if we can see that the organisation has already identified the issues. We have seen from the complaint response that the Trust has agreed with Miss O that it could have done more to help maintain Miss P’s posture whilst in bed. We have therefore looked to see whether Miss P’s posture had an impact on her condition and outcome.
54. The records indicate Miss P had a medical history of chronic lung disease, asthma and COPD prior to her admission and she had been admitted to hospital on numerous occasions previously due to her respiratory difficulties. Following her admission to the Trust on this occasion she was diagnosed with a chest infection and tracheobronchomalacia. Our physician adviser said they were unable to identify any evidence in the records which would indicate the Trust’s inability to maintain her posture at all times caused or contributed to her breathing difficulties, chest infection or the deterioration of her condition.
55. From the account provided to us by Miss O it was clearly very uncomfortable for Miss P and not appropriate for her condition on the occasions when her posture was not maintained and she slipped down the bed. We acknowledge this was very distressing for both Miss P and Miss O. Having reviewed the records we have not seen evidence of any sudden deterioration in her condition on the occasions when this happened or that she required additional care and treatment for her respiratory difficulties as a result of any of these incidents.
56. We carefully considered Miss O’s complaint and the supporting information she has provided. We also considered the information in the records and the advice we have received. We acknowledge Miss O’s concerns about the Trust’s inability to consistently maintain her sister’s posture. It is clear this was a failing in the part of the Trust and it has acknowledged this failing, apologised and taken steps to ensure the risk of similar failings happening in future are reduced.
57. We found no evidence which would indicate the failure to consistently maintain Miss P’s posture led to any instances of respiratory distress. It has been accepted by both parties that this was an aspect of care that could and should have been better. However we found no evidence which would indicate the failure to consistently maintain Miss P’s posture had a detrimental impact on her condition or contributed to the worsening of her condition.
Failed to notify and involve the family when her condition deteriorated and she experienced respiratory difficulty & Inappropriately attempted NIV treatment without the assistance and support of the family
58. These two points of complaint are very closely linked and we have addressed them together.
59. Miss O says her sister had difficulties understanding and she could have helped the Trust communicate with her. She says the failure to notify and involve the family when Miss P experienced respiratory difficulty prevented her from doing this. Miss O says NIV treatment may have saved her sister’s life and she may have helped her tolerate the treatment if the Trust had involved her in her sister’s care at this time.
60. The NICE learning disability guidance states a single point of contact should be provided for those with a learning disability, and their support network, to help people access the right support and information at the right time. The NMC code of practices states nurses must communicate clearly and take reasonable steps to meet people’s language and communication needs, providing wherever possible, assistance to those who need help to communicate their own or other people’s needs.
61. The records indicate the Trust’s specialist learning disability nurse offered to act as the single point of contact for Miss O during their telephone discussion on 15 February 2023. The records indicate the Trust discussed Miss P’s condition and treatment with Miss O on multiple occasions. The notes of the discussions in the records indicate the Trust provided updates to Miss O about the care being provided to Miss P, the circumstances of her deteriorating condition and the decision to transfer her to the ARCU for NIV treatment.
62. The records indicate the Trust used visual aids to try and help Miss P understand the NIV treatment. The records also indicate on 22 February 2023 the Trust shared the images of Miss P’s tracheobronchomalacia with Miss O to help explain the condition that was causing her breathing difficulties. The records include multiple telephone discussions between the Trust’s specialist learning disability nurse and Miss O consistent with a good level of communication.
63. The Trust’s Learning Disability and Autism Policy states its clinicians should ensure the patient has support from their family/carer/support worker or advocate during any vital discussions such as diagnosis and treatment plans.
64. The records indicate when discussing NIV treatment and resuscitation options with Miss P, the Trust did not ensure she had support and discussed this with her whilst she was alone. Although the Trust spoke with Miss O afterwards about both of these discussions with her sister, it would have been in line with the Trust’s own policy for it to ensure Miss P had the support of a family member during these discussions to help her understand the information being provided.
65. Miss P suffered respiratory failure requiring immediate oxygen treatment, initially through a trial of NIV. The BTS guidance recommends NIV for patients suffering with COPD who experience respiratory difficulties. It says the patient’s oxygen saturation levels must be continuously monitored during the treatment to prevent hyperoxia (excessive amount of oxygen in the blood).
66. The BTS guidance says NIV can worsen a patient’s agitation and distress and sedation may be considered. It says sedation needs to be carefully considered due to the risk of suppression of respiratory drive (the patient’s efforts to breathe). The BTS guidance clinicians should avoid any delay in starting NIV in cases of extreme acidosis (where the lungs are unable to remove enough carbon dioxide).
67. The records indicate the Trust considered and attempted NIV treatment in line with the BTS guidance. However the treatment was not successful as Miss P could not tolerate the mask and would remove it. Our physician adviser said as it was essential to attempt this treatment urgently due to her respiratory failure it would not have been appropriate or in keeping with the BTS guidance for the Trust to delay the treatment and wait for the family to be available before attempting it. Our physician adviser said the treatment needed to be attempted at that time and the records indicate the team providing the treatment at the Trust were appropriately skilled in its administration.
68. Our physician adviser said although assistance and support from family members would be welcome when clinically appropriate, a patient’s care and treatment should not be reliant on support from family members. We acknowledge the benefit the support of a family member can provide to a patient suffering distress and experiencing difficulty with a specific treatment. However there is no evidence we can point to that would indicate additional support from the family would have enabled Miss P to tolerate the NIV treatment or prevent her from removing her mask.
69. Our physician adviser said there is no evidence to indicate attempting to provide Miss P with NIV without the assistance of her family had a detrimental effect on the Trust’s ability to provide the oxygen treatment. The records indicate following the difficulties Miss P and the Trust experienced whilst attempting NIV, the Trust was able to provide carefully controlled oxygen treatment which maintained her oxygen saturation within the target levels until she suffered the deterioration in her condition shortly before she died.
70. We carefully considered Miss O’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance, the Trust’s Learning Disability and Autism Policy and the advice we have received.
71. We acknowledge Miss O’s concerns about the Trust not involving her in Miss P’s care. It is clear from Miss O’s account that she feels her input would have helped her sister tolerate the NIV treatment and that the Trust should not have attempted it without her being there to support her sister. We acknowledge how distressing this was for Miss O and her sister. We accept Miss O’s support would have provided her sister with a great deal of comfort at what was clearly a very distressing time.
72. We found no evidence which would indicate involving the family in the NIV treatment would have led to Miss P tolerating the treatment without the need for sedation. However it would have been in line with the Trust’s own policy to ensure she had the support of her family when the Trust discussed important aspects of her care such as the need for NIV treatment and her resuscitation options.
Failed to provide appropriate care and treatment following her move to the respiratory ward
73. Miss P was transferred to the Trust’s ARCU on 19 February 2023 after she developed respiratory failure. The Trust identified Miss P was suffering with tracheobronchomalcia, a very rare condition which causes the cartilage holding the windpipe open to weaken and collapse inwards narrowing the passage through which air can flow. Sadly there is no cure or treatment for tracheobronchomalcia, it is a progressive condition that worsens over time.
74. The records and the scans of Miss P’s trachea indicate her airway had narrowed significantly making it impossible for her to get enough air into her lungs. The records support the view this caused her to develop respiratory failure. The records indicate clinicians from the Trust’s respiratory team and intensive care team discussed Miss P’s care and treatment options and decided to attempt NIV treatment to try and maintain her oxygen levels.
75. Miss P experienced great difficulty tolerating the NIV treatment and would remove her mask. The records indicate the Trust considered providing the NIV treatment under sedation but felt this was not appropriate as her condition was progressive and irreversible meaning Miss P would need to remain permanently sedated.
76. The records indicate the Trust provided active treatment to Miss P throughout her time the ARCU and following her move to the ARCU step down ward, Shotley ward. The Trust provided her with physiotherapy, antibiotic medication and controlled oxygen therapy. There is no indication in the records of active treatment being stopped by the Trust at any stage and no evidence to indicate the Trust decided to place Miss P on end-of-life care.
77. Our physician adviser said there is no evidence to indicate the care and treatment provided by the Trust was not appropriate for Miss P’s condition or not in keeping with the GMC guidance and the NICE oxygen treatment guidance. Our physician adviser said there is no evidence to indicate there was any additional treatment options available to the Trust that would have enabled it to do any more to support Miss P following her respiratory failure.
78. The records indicate Miss P was suffering severe chronic health problems at this time and appropriate treatment was attempted by the Trust to improve her symptoms. Our physician adviser said in light of Miss P’s numerous previous admissions to hospital for her chronic respiratory problems (lung disease, asthma and COPD) and the additional diagnosis of tracheobronchomalcia, which as we have said is a progressive, incurable condition there is no evidence in the records to indicate her death could have been prevented.
79. We carefully considered Miss O’s complaint and the supporting information she has provided. We also considered the information in the records, the guidance and the advice we have received. We acknowledge Miss O’s concerns about the care and treatment provided by the Trust to her sister. We acknowledge how distressing this was for Miss O in light of the deterioration her sister suffered as a result of her condition.
80. We found no evidence to indicate the Trust failed to provide appropriate care and treatment to Miss P following her move to the ARCU and then Shotley ward.
81. The records indicate Miss P’s condition deteriorated rapidly due to her severe long term poor respiratory health and the subsequent diagnosis of a terminal condition (tracheobronchomalcia). We found the management of her condition by the Trust was in keeping with the GMC guidance, the NICE oxygen treatment guidance and the BMJ oxygen treatment guidance.