Management of Parkinson’s Disease
22. Mrs M raised concerns about the understanding and management of Dr M’s Parkinson’s disease. She says she was frequently told Dr M was showing signs of agitation and confusion throughout his admission, with one nurse saying Dr M had dementia despite having been tested for this on the ward. Mrs M felt there was a lack of understanding of Parkinson’s disease, and instead, Dr M was treated like a confused old man.
23. Further to this, Mrs M raised concerns that Dr M’s medication was changed, and this caused his symptoms of paranoia and hallucinations to worsen, she also observed that he gradually deteriorated over the course of the admission following the changes to his medications. Mrs M explained that Dr M’s medication had been effective prior to his admission, and his condition well controlled.
24. In response to the complaint the Trust explained that prior to the admission, during a consultant neurologist’s review in August 2022, it had been noted that Dr M had become slower over the preceding year with progressive symptoms due to slowing and rigidity in his limbs. The consultant also explained he was become more unsteady on his feet and was veering towards his right side. It was noted his speech had become slurred intermittently, he had word finding difficulties, and other people were struggling to hear what he was saying. Dr M could feed himself, but needed help with dressing and toileting and needed a zimmer frame to walk.
25. The consultant also noted that Dr M had experienced progressive weight loss since early 2022, leading to him becoming frailer. Dr M’s medications had been changed at this point to reflect the changes in his presentation, and the Trust acknowledged there was some stability in his condition after these changes were made.
26. Following the admission to hospital, the consultant neurologist reviewed Dr M on 14, 20, and 23 September. His Co-Careldopa (a mixture of carbidopa and levodopa, medications used to treat motor symptoms) was increased from 2 tablets (three times a day) to two tablets (four times a day). Dr M was experiencing worsening behaviour and impulse control issues, and his behaviour had been reported as becoming increasingly inappropriate by nursing staff. As such, when he was reviewed on 23 September, the consultant suggested the dose of Repinex XL (a medicine used to treat motor symptoms) was reduced from 12mg per day to 4mg – however it was felt that the behaviour changes were in the context of delirium.
27. The consultant explained that the reason Dr M deteriorated so quickly was due to his delirium on the background of advanced Parkinson’s disease, and the development of co-existing frailty in the preceding months. It was considered that the delirium also contributed to Dr M’s behavioural issues, and so there was no choice but to reduce the dopamine agonist to help with his symptoms.
28. Further to this, the Trust explained that a change was made from oral medication to a medication patch in response to Dr M’s varied capacity to take his medications, to ensure he was receiving the medication he needed.
29. With regards to agitation and confusion, the Trust explained that Dr M was treated for a kidney infection and an umbilical infection during his admission, and this likely contributed towards any delirium he was presenting with.
30. We sought advice on this part of the complaint from our neurology adviser, together we reviewed Dr M’s records, and carefully considered the care he received during his hospital admission.
31. NG71 says that medication changes for patients with Parkinson’s disease should only be made following discussions with specialists in the management of Parkinson’s disease, and similarly, if there have been any changes to symptoms or behaviours, or progression of disease, a specialist opinion should be sought (1.3.4, 1.3.9, 1.4.6).
32. We can see that the changes to Dr M’s medications were only made following discussions with specialists in the management of Parkinson’s disease, and that these changes were made in response to the changes in Dr M’s symptoms and behaviours. As Dr M’s presentation changed throughout his admission, further changes to medications were made in response to this, following consultation with the specialist team. For this reason, we consider this is in line with the NICE guidance we have quoted above.
33. We can also see that during the admission, Dr M’s ability to take oral medication was fluctuating, and our adviser has commented that it was reasonable to substitute his oral medication to a transdermal patch, given his compliance with oral medication was variable.
34. Our adviser explained that it is very difficult to manage the combination of poor mobility, confusion, and delirium in patients with end-stage Parkinson’s disease, and it is evident in this case that the clinical team were trying to address these concerns as best they could. The adviser explained that there is often a trade off with increased medication improving mobility but promoting confusion, and it can be difficult to find a balance between the two.
35. Our adviser explained that this is evidenced with the medication Dr M was prescribed at discharge. Upon discharge, Dr M was prescribed a high dose of opiate medication, an anticholinergic drug (medication which can help with involuntary muscle movements and urinary incontinence), and two dopaminergic agonist drugs (ropinirole and rotigotine – medications which help with motor symptoms) at the same time. Our adviser confirmed that the co-prescription of the two dopaminergic agonist drugs would most likely be harmless and have no adverse effects.
36. We understand it would be usual practice to minimise opiate painkillers and anticholinergic drugs in patients with a liability to confusion and delirium. Therefore, prescription of these medications may have promoted sedation and confusion in Dr M.
37. However, this must be balanced against the fact that his fractured hip caused significant pain, necessitating the prescription of opiate painkillers, and that anticholinergic medication can help with rigidity, slowness of movement, tremors, and speech and writing difficulties.
38. Overall, we consider the team acted within NICE guidance when attempting to address Dr M’s presentation with reduced mobility. As his presentation changed throughout his admission, changes were made to his medication to address this. When compliance issues occurred, changes were made to the administration of medication to ensure Dr M was still receiving the treatment he needed.
39. With regards to comments made on the presence of confusion and agitation, NICE CG103 provides recommendations on the recognition and management of delirium. All clinical staff should be aware of the risk of delirium, and the serious consequences this can have for patients in hospital (1.1.1). Risk factors of delirium include: age 65 or over, cognitive impairment, a current hip fracture, and a severe illness (or clinical condition which is deteriorating or is at risk of deterioration) (1.2.1). Therefore, those in hospital should be observed (at least daily) for recent changes or fluctuations indicating delirium (1.5.1). With this in mind, we do not consider it unreasonable that the clinical teams were assessing and monitoring Dr M for signs of delirium. Dr M was at risk of developing delirium, and his presentation changed and fluctuated throughout his admission.
40. We recognise that the changes to Dr M’s medication contributed to these fluctuations and consider the infections he was being treated for also contributed to his overall presentation. On occasions where Dr M was posing a risk to himself and to staff, he was given lorazepam to help calm him down and prevent any risks escalating further. We consider this was in line with the GMC’s Good Medical Practice guidance with regards to taking all possible steps to alleviate pain and distress (16c).
41. For the reasons outlined above, we will not be taking any further action on this part of the complaint.
Nursing care
• Assistance with diet and hydration
42. Mrs M raised concerns that Dr M had lost a significant amount of weight in a short space of time. She recalls when she visited him that he was often lying flat in the bed with his dinner and drinks left untouched on the table. Mrs M explains this made it impossible for him to reach his food/drinks, and that he needed assistance to eat his meals. Mrs M tried to visit at mealtimes to help him, but this wasn’t always possible.
43. Mrs M says the weight loss caused Dr M to become weak and frail, so much so that he could barely stand. She is also concerned that they were told Dr M slept through his meals and medication, and questions why he was not offered food and medication when he was awake.
44. In response to the complaint, the Trust says Dr M was referred to the dietetics team on 14 September 2022, and was first assessed on 16 September. It was recorded that Dr M was around 82kg and had been eating smaller portions of food recently. Mrs M had reported, upon Dr M’s arrival to the Emergency Department (ED) that he had lost two stone in weight in recent months. Dr M was weighed on 24 September and was 74.9kg, and on 1 October he weighed 73kg. The last recorded weight was on 10 October, where he was 64kg. This indicated a significant weight loss.
45. The Trust explained that throughout the admission Dr M was seen regularly by the dietitians and speech and language therapists. He was assessed multiple times and found to have moderate to severe dysphagia on a background of Parkinson’s disease, and appropriate modifications were made to the texture of his food. Dr M was also given thickened fluids, and was prescribed nutritional supplements, including fortisip drinks, calogen shots and forticreme to boost his calorie intake.
46. The Trust explained that upon review of the nursing notes, it felt Dr M was offered sufficient assistance and encouragement at mealtimes. It says his oral intake was monitored by a food chart, and it is evident some days were better than others. The Trust reports there were many days where Dr M would refuse food, but other days where he was eating well. The Trust added that staff were aware Dr M needed assistance, and it is documented that he was offered or given assistance by nursing staff.
47. Lastly, the Trust explained that there were times when Dr M slept through mealtimes and medication rounds. He was often awake and unsettled through the night and it considers this may have contributed to him being sleepier in the day. It explained if patients are sleeping and cannot be woken at mealtimes, they are offered food when they wake.
48. When considering this part of the complaint we sought advice from our nursing adviser. The relevant standard we will refer to is the NMC (2018) standards for registered nurses, which provides the following guidance as to what should happen: • Nurses should demonstrate the ability to accurately process all information gathered during the assessment process to identify needs for individualised nursing care and develop person-centred evidence-based plans for nursing interventions with agreed goals (point 3.5 – main guidance) • Nurses should use evidence-based, best practice approaches for meeting needs for care and support with nutrition and hydration, accurately assessing the person’s capacity for independence and self-care, and initiating appropriate interventions (Point 5 – Annexe B), to do this, they should: • Observe, assess, and optimise nutrition and hydration status and determine the need for intervention and support (5.1) • Use contemporary nutritional assessment tools (5.2) • Assist with feeding and drinking and use appropriate feeding and drinking aids (5.3) • Record fluid intake and output and identify, respond to, and manage dehydration or fluid retention (5.4) • Identify, respond to, and manage nausea and vomiting (5.5) • Insert, manage, and remove oral/nasal/gastric tubes (5.6) • Manage artificial nutrition and hydration using oral, enteral and parenteral routes (5.7)
49. Prior to Dr M’s admission, it was noted his appetite was severely impaired and that he was not feeling hungry. He had also experienced an unplanned weight loss of two stones. Upon admission (9 September 2022), Dr M’s risk of malnutrition was assessed.
50. Our nursing adviser has explained that he was incorrectly assessed as being at low risk of malnutrition in these assessments up until 10 October 2022, when weight loss was correctly considered. Dr M should have been medium risk from his admission, based on his unplanned weight loss.
51. If he had been recorded as medium risk, the following interventions should have been implemented: • Start a food record chart and document dietary intake for 3 days, • Discuss with patient and family regarding food preferences, • Help patient make suitable choices from the menu, • Choose portion size to suit appetite, • Offer snacks available on wards and check if family can bring in snacks to tempt appetite, • Offer nourishing drinks in preference to water, • Offer assistance at mealtimes to patients who have been allocated a red tray, • If less than half of a meal is eaten, offer a supplement (e.g., fortisip), • Document supplements offered on food chart, • Repeat weekly weights, • Repeat MUST screening weekly, (MUST – malnutrition universal screening tool – used to identify those who are malnourished or at risk of malnutrition) • If there are concerns regarding food intake after implementing these measures, to refer to the dietitian.
For comparison, low risk requires:
• Weekly weights • Weekly MUST screening unless patient’s condition raises concern • If a patient is eating less than half a meal on a regular basis, to follow medium risk interventions
52. Despite this mistake, Dr M was referred to, and assessed by, occupational therapists on 13 September and Dr M stated that he was able to make himself a simple breakfast. On 14 September, during a neurology ward round, it is documented that ‘swallowing seems okay’. He was referred to dietetics on the same day and reviewed on 16 September. Mrs M was present of the dietetics review and was able to provide valuable input to the assessment.
53. A plan was made for nutritional supplements to boost calorie intake, for Dr M to be encouraged at mealtimes and for the family to help with this, and for his food, fluids, bowels and weight to be monitored.
54. The dietitian requested the speech and language therapy team (SLT) for swallow review as Dr M was noted to be coughing during lunch. He was seen by SLT on the same day. The SLT concluded Dr M had moderate to severe dysphagia on a background of Parkinson’s. It was recommended that he had a pureed diet and thicker fluids. SLT also requested that Dr M was given encouragement for his oral intake, and that a food chart was kept. The records show Mrs M was updated with the outcome of this assessment.
55. Whilst the MUST score was incorrectly calculated, Dr M had been reviewed by the appropriate teams and his recommended diet was amended to meet his needs. Both the dietetics team and SLT team made recommendations in line with the MUST medium risk interventions.
56. Dr M was reviewed by the dietitian and SLT team on 26 September. The dietitian recommended continuing with the current plan, as it was noted Dr M had been eating and drinking well. The SLT team carried out a swallow review and noted Dr M had been eating and drinking well, having been given slightly thicker fluids and pureed food. It was noted that he was to continue with an amended diet of thicker fluids and soft bite sized food.
57. The dietitians reviewed Dr M again on 3 October. it was noted that nursing staff had recorded Dr M was tolerating diet and fluids well but was eating less when confused. The plan was to continue with nutritional supplements, continue completing a food chart, to discuss likes and dislikes with Mrs M, and ask her to encourage intake. The dietitian also asked that the nurses continued to monitor fluid and bowels when able.
58. A further dietitian review on 10 October noted there had been no food chart completed since 8 October, and that the fluid balance chart of 9 October was incomplete. The plan remained the same for nutritional supplements with encouragement, weigh when able, use a red tray at mealtimes, and to monitor his food and fluid intake.
59. An SLT review on 23 October resulted in a recommendation for thinner fluids, and soft bite sized food. He was to be supervised when eating and drinking and encouraged to take small sips/bites.
60. A dietitian review on 26 October noted Dr M’s compliance and oral intake varies with mood and behaviour, on some days he was refusing meals. The plan was changed, and it was requested that Dr M was reviewed by SLT for his swallow, he was nil by mouth and so was not to receive any nutritional supplements, and it was to be considered whether a nasogastric (NG) or percutaneous endoscopic gastrostomy (PEG) tube would be appropriate given the varied intake. NG and PEG tubes help to provide nutrition, hydration, and medication directly into the stomach.
61. A further dietetics review took place on 28 October and noted Dr M continued to refuse some meals. Dr M was recorded as not meeting his dietary requirements due to poor oral intake. He was to receive nutritional supplements, be given food on a red tray, have food and fluid charted, and to be weighed when able. The SLT team reviewed Dr M on the same day for a swallow review. They recommended mildly thick fluids and a puree diet, and to continue monitoring his intake.
62. On 2 November, Dr M was reviewed by the dietitians and SLT team, the nursing team reported he was managing to eat/drink as per recommendations but had a variable intake due to refusal and drowsiness. They recommended to continue with the plan when Dr M was alert. The dietitians noted fluid balance charts were incomplete, and that Dr M was not meeting his requirements for intake. The dietitians prescribed further nutritional supplements, requested Dr M was weighed, and asked that he was encouraged with his oral intake as well as continuing with a red tray.
63. An SLT review on 4 November recommended an upgrade to slightly thick fluids, with pureed food still appropriate. Dr M was to be encouraged with his intake when upright and alert. A further SLT review on 8 November recommended normal fluids with small sips, and a soft bite sized diet, to be given when fully upright and alert.
64. It appeared therefore that Dr M’s needs were rapidly changing, documented as being secondary to advancing Parkinson’s disease.
65. Overall, our review of the nursing notes shows us that:
• Food charts are present between 13 September and 1 October 2022, 3 October to 8 October 2022, 16 October to 9 November 2022. But it appears food intake was not documented on 2 October, and between 9 and 15 October 2022.
• A red tray was in use from 10 October 2022, however, the intentional rounding charts document that it wasn’t used between 15 and 18 October, on 21 October, between 25 October to 27 October, and between 29 and 31 October 2022.
• During a comprehensive geriatric assessment on 26 October, it was documented that Dr M had lost a further 1.5 stones since his admission.
66. We have identified that the nursing staff incorrectly documented Dr M as at low risk of malnutrition from the point of his admission until 10 October 2022. Despite this, there were some interventions taken. Dr M was reviewed by the dietician team and SLT team throughout his admission, and nutritional supplements were prescribed, as well as an amended diet which would meet his needs.
67. Food and fluids were mostly documented, and we recognise there were difficulties with compliance as at times Dr M was not fully alert or was refusing meals. This would have made it more challenging for staff to encourage his food intake and ensure he was meeting his intake requirements, despite having appropriate measures in place such as nutritional supplements and the red tray.
68. It was not recommended that a red tray was required until 10 October, however, it was then omitted between 15 and 18 October, 21 October, 25 to 27 October, and 29 to 31 October. Additionally, there is poor record keeping on 2 October, and between 9 and 15 October, and because of this it is not clear if Dr M was assisted during these times with his diet.
69. We consider it could be possible that the lack of consistency with record keeping and assistance contributed towards Dr M’s poor intake during those periods, and therefore contributed to his ongoing weight loss which had begun prior to his admission.
70. We should however also take into consideration that Dr M may have refused food, even if he had been given assistance, as this appears to be an ongoing trend throughout the admission. Therefore, we consider Dr M’s weight loss should be considered alongside the bigger picture of his deterioration, end stage Parkinson’s disease, and increasing frailty.
71. We discussed this with the Trust and highlighted our concerns about incorrectly categorising Dr M as ‘low risk’ until 10 October 2022, the lack of consistency with recordkeeping and with assistance at mealtimes.
72. The Trust reviewed the information we provided and has agreed to write to Mrs M to acknowledge the indications of poor service which we have identified, as well as providing Mrs M with an apology. The Trust has committed to doing this within the next 25 working days.
73. We are satisfied that agreeing to take these steps to put things right is in line with the NHS Complaint Standards with regards to giving a fair and accountable response and providing a sincere apology. For this reason, we will not be taking any further action on this part of the complaint.
74. We recognise this does not change the experience of Dr M, but we hope it is reassuring for Mrs M that these circumstances will be reflected upon in the care provided by the nursing team going forward.
• Mobility
75. Mrs M told us the physiotherapy team advised Dr M was struggling with his mobility because he was at the ‘end-stage’ of his disease. They had not previously been informed this was the case, and this was distressing for them as Dr M had been well prior to his hospital admission. Mrs M is also concerned with the speed of Dr M’s deterioration in mobility and increasing frailty.
76. In response to the complaint, the Trust explained that Dr M received extensive physiotherapy input on several occasions. The physiotherapy manager reviewed the notes and explained there was consistent mention of Dr M’s worsening and/or progressive Parkinson’s disease. There were some pre-admission issues and concerns regarding Dr M’s speech and mobility.
77. Therefore, it considered the physiotherapist was informed enough to make a statement regarding Dr M’s abilities, but on reflection, the term ‘end stage’ was not the best choice of phrase. As part of the Trust’s response, the physiotherapy manager has apologised for the upset caused by the comments made.
78. NICE guideline (NG71) advises to offer specific physiotherapy for people who are experiencing balance or motor function problems (1.7.3) and to offer specific occupational therapy for people who are having difficulties with activities of daily living (1.7.6).
79. Our neurology adviser commented that the input from both occupational therapy and physiotherapy was appropriate based on Dr M’s presentation. Our neurology adviser also commented that Dr M was at the end stage of his condition, and therefore the physiotherapist would have been accurate in his comments.
80. However, we recognise that if the family were not aware of the consensus that he was at the end-stage of his disease, despite his deterioration, this would have been extremely distressing for them.
81. We can see the Trust has acknowledged the events and provided an apology to Mrs M for the distress caused. This is in line with the NHS Complaint Standards with regards to giving a fair and accountable response and providing a sincere apology. We consider this is a proportionate remedy to the impact this likely had on Mrs M. For this reason, we will not be taking any further action on this part of the complaint.
• Toileting needs
82. Mrs M raised concerns that Dr M was not shown any respect or dignity during his admission, she says he was left to urinate in bed when he was capable of using a bottle.
83. In response to the complaint, the Trust has apologised that Mrs M felt this was the case. It explained that it had reviewed the notes with the ward manager, and could see that Dr M was often incontinent, but also used urine bottles and was assisted to do so from time to time. The Trust also explained that Dr M may have been experiencing increased incontinence due to the urinary tract infection (UTI) he was being treated for.
84. We have considered this part of the complaint with our nursing adviser. The NMC’s standards of proficiency for registered nurses states that nurses should observe, assess, and optimise skin and hygiene status and determine the need for support and intervention (point 4.1).
85. The records note that prior to admission, Dr M was suffering from urinary incontinence and would have a wet chair or bed. He wore pull up pads to manage episodes of incontinence, and the initial assessment of Dr M’s needs upon his admission note that assistance was needed. In looking at the records, there were episodes of incontinence, and it appears Dr M had good days and bad days. There are times when he was able to use a bottle or bedpan, or times when he had use of a pad.
86. Overall, there are indications in the records that Dr M’s needs were assessed, concluding that he needed assistance. His toileting needs varied based on his ever-changing presentation, and so there were times when he was fully continent and times when he was incontinent. We can see from the records there are indications he was attended to regularly by the nursing staff and given appropriate support. Our nursing adviser confirmed the support given throughout these periods was in line with his presenting needs at the time.
87. For this reason, we have not identified any indications of service failure in relation to the management of Dr M’s toileting needs and will not be taking any further action on this part of the complaint.
Communication
• Staff disregarding Mrs M’s experience in caring for Dr M and understanding his needs.
88. The NMC’s Code says nurses must work in partnership with people to make sure they deliver care effectively (2.1) and recognise and respect the contribution that people can make to their own health and wellbeing (2.2).
89. There are entries within the records which detail Mrs M’s involvement with aspects of Dr M’s care. However, we recognise there may also have been instances where Mrs M felt her opinion was being disregarded.
90. Whilst we do not have any supporting independent evidence which indicates a service failure took place, we recognise that this must have been considerably frustrating for Mrs M, especially given the experience she had in caring for her husband, and the knowledge of his presentation this would have given her.
91. We can see in response to the complaint the Trust has apologised for the experience Dr M and Mrs M had. For this reason, we consider the Trust has responded to this concern in line with the NHS Complaint Standards with regards to giving a fair and accountable response and a sincere apology, and we will not be taking any further action on this part of the complaint.
92. Mrs M told us Dr M’s deep brain stimulation battery needed charging every few days to a week, and as there was nobody able to do this, she was happy to go into the hospital and do this and had been doing so during the admission.
93. Mrs M told us that on 4 October 2022 she was turned away from the hospital, despite having driven from Worcester to Redditch, even though she was the only person who could charge the battery. Although the ward had Covid-19, she had proof of a negative test and was wearing a mask.
94. In response to the complaint the manager of the ward has apologised for the distress caused when Mrs M was denied entry to the ward. The Trust confirms that the ward was closed due to an outbreak of Covid-19, and visiting was stopped. There were strict infection control protocols in place at the time, and the nurse Mrs M spoke to was following advice at the time.
95. However, it has acknowledged that visiting was allowed in exceptional circumstances, and once the ward manager was made aware of the situation, she spoke to Mrs M and agreed she would be allowed to visit for purpose of charging the device.
96. We acknowledge how frustrating this must have been for Mrs M, and given an agreement was in place for her to attend to charge the battery, the nurses should have honoured the agreement and allowed her onto the ward. Instead, Mrs M had a wasted journey on that day. She was then able to return to the ward the following day to charge the battery.
97. We can see that Trust has acknowledged the events and provided an apology to Mrs M for the distress caused, and we consider the Trust has responded to this concern in line with the NHS Complaint Standards with regards to giving a fair and accountable response and a sincere apology. For this reason, we will not be taking any further action on this part of the complaint.
• Delay in informing Mrs M about Dr M’s fractured hip.
98. Mrs M says she was only told that Dr M had a fall that morning during the meeting on 17 October. They were not told he had broken his hip despite Dr M having had a scan before the meeting. She says they were told he had broken his hip on 21 October.
99. In response to the complaint, the Trust explains that whilst an X-ray had been carried out prior to the meeting, a CT scan had been requested to rule out a fracture. The CT scan was requested on the same day and took place on 18 October. As such, the scan had not been performed at the time of the meeting, and the team were not aware of the fracture at that point in time. The Trust says Dr M was informed of the injury once the CT scan had been reported, and it was documented that Dr M wanted to tell Mrs M himself. As he was deemed to have capacity at this time, the Trust did not contact her.
100. We have reviewed the records from 17 October. It is noted at around 12:30pm that Dr M had an unwitnessed fall. The doctor on call was bleeped to attend and review him. Dr M was referred for a CT head, pelvis, and spine. The notes indicate that Mrs M was contacted and informed, and an apology was provided. It is not clear whether Mrs M was informed that Dr M had a potential fracture.
101. The family meeting took place at 3:40pm, and the notes do not indicate there a discussion about the fall or possible fracture.
102. At approximately 4:30pm, a plan was made to contact the duty radiologist for a further review of the X-ray report, and if they did not obtain a response, to request a CT scan. The notes indicate a CT scan of the right hip was requested.
103. The CT scan took place on 18 October in the afternoon, and it was reported that there was a fracture. The fracture was for conservative management, and Dr M was referred to the fracture clinic for an appointment on 21 October.
104. The scan results were explained to Dr M shortly afterwards, and the senior house officer (SHO – a junior doctor) asked if he wanted him to update his wife. Dr M advised the SHO he would like to update her himself.
105. The GMC’s Good Medical Practice guidance states doctors must communicate effectively and listen to patients whilst taking account of their views. They must give patients the information they want or need to know and must be considerate to those close to the patient and be sensitive and responsive in giving them information and support (points 31, 32, and 33). Further to this, doctors must work in partnership with patients, sharing with them the information they need to make decisions about their care (point 49).
106. Mrs M had been made aware of the fall shortly after it happened, which we consider is in line with the GMC’s Good Medical Practice. At that time, it was not known if Dr M had a fracture. We cannot see from the records whether Mrs M was told this was a possibility, and we recognise if this was not discussed, how frustrating it must have been to be told he had a fracture a few days later. Similarly, it was not known at the time of the meeting what the outcome of the scan was, and so it would not have been possible to inform Mrs M at this point.
107. The GMC’s Decision making and consent guidance states capacity is decision specific and time specific, and doctors must in the first instance presume that every adult has the capacity to make decisions about their treatment and care (points 76 and 81).
108. Dr M was then informed of the scan results and was asked if he wanted the doctors to update Mrs M. He chose to tell Mrs M himself. We can see from the Trust’s response that at that time, it was considered Dr M had the capacity to decide that he wished to inform Mrs M of the fracture.
109. As such, we do not consider there are any indications of service failure relating to this part of the complaint, and we will not be taking any further action.
Complaint handling
110. Mrs M has raised concerns about the way the Trust handled her complaint. She told us that the Trust did not initially log her concerns as a formal complaint, and therefore delayed in providing her with a thorough response to all the concerns she raised.
111. We have reviewed the process the Trust followed alongside its complaint handling guidance.
112. Following Mrs M raising her concerns with the Patient Advice and Liaison Service (PALS) in October 2022, a meeting was arranged for 17 October. As Dr M was an inpatient at this time, the PALS officer felt it was appropriate to take immediate action and arrange a meeting.
113. During the meeting, several members of the team looking after Dr M attended, and it is documented that they discussed Dr M’s presentation and the changes to his medication. They discussed how his care needs had increased significantly since his admission and spoke about the plans for his discharge.
114. Mrs M contacted our Office in August 2023, and we contacted the Trust to enquire about a response to the complaint. The Trust stated it had never received a formal complaint, and that the family were out of time to raise their concerns. Based on the information we have reviewed, we consider this response was inaccurate. The Trust had received a formal complaint from the family, and the family were not out of time to raise their concerns.
115. The family wrote to the Trust on 7 November 2023 outlining their outstanding concerns and explaining that they were never told the complaint had not been registered as a formal complaint. The Trust then provided a formal response to the complaint on 15 December 2023.
116. It appears that the Trust’s initial response to the complaint was in line with its complaint handling guidance, as the guidance says that the Trust’s first response should be to seek quick local resolution, allowing for a speedy and effective outcome for the complainant (Section 5.3).
117. However, the guidance goes on to say that if a complaint can be resolved immediately, and without investigation, the investigating officer can negotiate with the person making the complaint for the complaint to be deregistered, and it will then be recorded as an informal complaint (Section 5.3).
118. We cannot see that it was discussed or clarified with Mrs M whether she was happy with her concerns to be dealt with informally, or if she wished to log a formal complaint. A discussion of this nature should have occurred following the meeting, and Mrs M’s concerns should have been recorded as a formal complaint in line with Section 5.5 of the Trust’s complaint handling guidance. For this reason, we consider there are indications of maladministration in the complaint handling.
119. Understandably, the delay in getting a response to these concerns caused additional distress for Mrs M and her family, following the passing of Dr M. We recognise that had the complaint been registered formally after the meeting, the family would have had a written response sooner than what they did, and they would not have had to chase the Trust for this.
120. The Trust has acknowledged that there was a misunderstanding at the time, as staff were under the impression Mrs M was happy for her concerns to be dealt with through the PALS process, rather than as a formal complaint. The Trust also explained that the ward manager had not been told there were outstanding concerns, and so had not progressed these matters to a formal complaint.
121. The Trust has apologised to Mrs M that her concerns were not fully addressed following the meeting, and acknowledged she was not told her complaint had not been formally registered. Furthermore, upon receiving the letter from the family with the outstanding concerns, the Trust provided a written response addressing the complaint.
122. We consider the Trust has put things right for the family, in line with the NHS Complaint Standards. It has provided an open and honest explanation for why it did not initially log the complaint as a formal matter and has provided a sincere apology for this mistake. For this reason, we will not be taking any further action on this part of the complaint.