Failed to refer Mr P to the SLT team soon enough after his admission to hospital on 14 June 2021
13. The NICE guidance says:
‘1.7.8 Offer speech and language therapy for people with Parkinson’s disease who are experiencing problems with communication, swallowing or saliva.’
14. The NCEPOD guidance post-dates this incident but such reports are based on previous established good practice. The work leading to this publication occurred in the months prior to publication and the findings are based on practice and opinion of healthcare providers within the UK. We think it is appropriate to refer to this guidance as a measure of good clinical practice.
15. The NCEPOD guidance states:
‘Screen patients with PD for swallowing difficulties at admission. Patients admitted to hospital may have swallowing difficulties, not recorded as ‘dysphagia’. Other indicators should be considered, such as the patient’s ability to swallow food, fluids or medication, whether they have control of saliva or have a history of pneumonia.
Refer patients with PD who have swallowing difficulties (or who have problems with communication) to speech and language therapy. Early input, as needed, from speech and language therapy (SLT) is fundamental to improving swallowing difficulties and communication for many patients with dysphagia.’
16. The GMC guidance states:
‘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:
• provide effective treatments based on the best available evidence
• consult colleagues where appropriate.’
17. The records indicate Mr P was initially reviewed in the Trust’s Respiratory Assessment Unit on 14 June 2021. The Trust recorded on his admission document he had experienced swallowing difficulties for several months prior to his admission but examinations identified no evidence of a current aspiration pneumonia (a type of lung infection that occurs when food, liquid, saliva, or vomit is inhaled into the lungs) such as cough or fever. The inflammatory markers in his blood tests were not elevated, indicating that there was no current infection, and the CT chest scan performed by the Trust also found no signs of a current infection.
18. Our physician adviser said the results of the initial review indicated a possible ongoing aspiration with recent or previous infection but there was no evidence to confirm a current infection. The records indicate the Trust made the provisional diagnosis of ‘probable aspiration pneumonia’.
19. Our SLT adviser said a diagnosis of probable aspiration pneumonia in a patient with a background of Parkinson’s disease would usually trigger a referral to SLT. Following the initial review the Trust recommended Mr P be admitted to hospital so he could be assessed by the Trust’s SLT team. The record of this assessment specifically states, ‘needs SLT assessment’. Despite this recommendation no referral was made to the Trust’s SLT team and no assessment was carried out at this time.
20. Mr P was transferred to a ward on 16 June 2021. Our SLT adviser said where a patient is suspected to be at risk of complications resulting from swallowing difficulty the Trust should complete a Nurse Swallow Screen within 4 hours of admission to the ward. This is confirmed on the Trust’s own Nurse Swallow Screen document. The records indicate the Trust started a Nurse Swallow Screen following his transfer to the ward but it was not completed. No referral was made to the Trust’s SLT team and no assessment was carried out at this time.
21. The records indicate the Trust recommended a SLT assessment again on 19 June 2021 due to Mr P’s swallowing difficulties. However no referral was made to the Trust’s SLT team and no assessment was carried out at this time. Mr P suffered a further pneumonia which developed into sepsis on 2 July 2021. The records indicate no referral was made to the Trust’s SLT team and no assessment was carried out at this time.
22. Mr P’s condition continued to deteriorate and the Trust referred him to the SLT team for assessment on 9 July 2021. The SLT assessment was carried out that afternoon and identified him as having ‘wet breath sounds, indicative of aspiration risk’ when drinking thin fluids which reduced when trialling slightly thickened fluid. The assessment found he could manage 100ml of slightly thickened fluid with no signs of aspiration. When assessed eating, the SLT team identified difficulties chewing and swallowing food. The result of the SLT assessment was the following change in what was considered appropriate from Mr P to eat and drink:
• from normal food (Level 7) to minced and moist food (Level 5) • from normal drinks (Level 0) to slightly thickened drinks (Level 1).
23. We carefully considered Mrs O’s complaint and the supporting information she provided. We also considered the advice we received and the information in the guidance. The purpose of the NICE guidance is to ensure patients who require SLT assessment are appropriately referred. The emphasis of the NCEPOD guidance to complete a SLT assessment as early in the care as is reasonable and practical.
24. It was clear from the outset that Mr P’s swallowing difficulty posed a risk to his wellbeing. We do not think the Trust acted in line with the NICE, NCEPOD and GMC guidance as it did not act on the initial recommendation for a SLT assessment on 14 June 2021 or the further recommendation on 19 June 2021. The failure of the Trust to act on the initial recommendations for a SLT assessment resulted in missed opportunities for Mr P to be assessed sooner.
25. The records indicate Mr P was diagnosed with a further pneumonia which led to sepsis on 2 July 2021. Our SLT adviser said the role of the SLT team is to implement changes aimed at reducing the risk of a person aspirating and developing aspiration pneumonia. Although it cannot be completely ruled out in patients with swallowing difficulties and Parkinson’s disease, it is possible that an earlier referral to the SLT team may have led to an assessment and changes in his diet that could have potentially reduced the risk of Mr P aspirating and developing a further pneumonia.
26. Our physician adviser said it cannot be said for certain whether an earlier SLT assessment would have prevented Mr P aspirating and developing a further pneumonia or prevented his condition from deteriorating as it did. The purpose of the SLT assessment is to mitigate the risk as much as possible. By the time the SLT assessment was eventually carried out on 9 July 2021 Mr P’s condition had already deteriorated and the changes implemented by the SLT team were a reaction to his specific condition at that time.
27. It is possible that Mr P’s swallowing difficulties may have prompted changes to his food and fluid intake if assessed earlier in the admission. However our physician adviser said it is not possible with the evidence we have for us to establish how poor Mr P’s swallowing was at various points earlier in the admission and how modified his diet would have been had he been assessed by the SLT team earlier. Our physician adviser said even if his diet had been modified earlier in the admission there is no guarantee that this would have prevented him from aspirating or developing a further pneumonia as this risk cannot be completely removed even with the changes in diet.
28. We carefully considered this advice and the information in the records. We acknowledge Mrs O’s view that an earlier assessment from the SLT team may have prevented her father from suffering a further pneumonia. It is clear an assessment could and should have been carried out sooner during the admission.
29. Regrettably there is insufficient evidence to enable us to comment on whether or not an earlier assessment would have resulted in changes in his diet being implemented and whether these changes would have prevented his further pneumonia.
Inappropriately changed Mr P’s fluid provision on 15 July 2021
30. Mrs O says on 9 July 2021 the Trust changed her father’s fluid provision to thickened fluid. This was reviewed by the Trust on 12 July 2021 and thickened fluids were continued. On 15 July 2021 the Trust revised Mr P’s fluid provision and changed from thickened fluid to thin fluids. Mrs O says this was inappropriate as the thickened fluids were being tolerated by her father and helping him. She says as a result of the decision to change to thin fluids her father aspirated again on 20 July 2021. She says this would not have happened if the Trust hadn’t changed his fluid provision.
31. The SLT fluid guidance states:
‘There is insufficient evidence to conclude definitively that thickened fluids can prevent or reduce dysphagia-related complications of aspiration pneumonia, dehydration, death, or that they can improve quality of life.
When a service user uses thickened fluids, a trial and ongoing review will allow for monitoring of any potential adverse effects and ascertain whether continued use is necessary.’
32. Our SLT adviser said there is no evidence in the records to indicate the change from thickened fluids to thin fluids was inappropriate or not in keeping with the SLT fluid guidance. The records indicate Mr P was assessed on 15 July 2021 by the same clinician who saw him on 9 July 2021. The clinician provided him with 150ml of thin fluids, observed for any adverse effects and reported ‘nil overt signs of aspiration’. Our SLT adviser said if there are no contraindications, the least restrictive option for providing a patient with fluid would be taken, which in this case would be thin fluids as these are ‘normal’ drinks.
33. The records indicate Mr P was reviewed after the change to thin fluids and regularly state he was ‘tolerating diet and fluids’, including on 20 July 2021. There is no mention in the records of Mr P experiencing coughing or showing signs of aspiration when drinking thin fluids between 15 and 20 July 2021. Our SLT adviser said there is no evidence in the records that would lead us to conclude that the change to thin fluids had a detrimental impact on Mr P’s condition.
34. Our physician adviser said Mr P may have aspirated regardless of any change in consistency of diet or fluid provision. There is a lack of medical evidence to say that modified diets prevent aspiration in patients with difficulty swallowing and thickened fluids provide their own potential risks such as dehydration and poorer drug absorption. Our physician adviser agreed there is no evidence in the records that would lead us to conclude that the change to thin fluids had a detrimental impact on Mr P’s condition or caused his aspiration.
35. We carefully considered Mrs 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 Mrs O’s concerns about the change in fluid provision and the deterioration her father suffered in the days that followed.
36. We found the Trust acted in accordance with the SLT fluid guidance when assessing Mr P’s condition and reviewing his fluid provision before deciding to change to thin fluids. We found no evidence to indicate the decision to change Mr P’s fluid provision on 15 July 2021 was inappropriate or detrimental to his condition.
Failed to treat Mr P as nil by mouth on 21 July 2021
37. Mrs O says her father suffered a further episode of aspiration on 21 July 2021. She says despite this the Trust continued to provide food and fluids rather than treat him as nil by mouth. In its complaint response the Trust agreed Mr P should have been treated as nil by mouth on 21 July 2021.
38. 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 Mrs O that her father should have been treated as nil by mouth on 21 July 2021. We have therefore looked to see whether the decision not to treat Mr P as nil by mouth on 21 July 2021 had an impact on his condition and outcome.
39. The records indicate on 16 July 2021 Mr P was tolerating his diet, there are no reports of chest symptoms or cough and his chest was clear on examination. He was reviewed by the Trust’s SLT team on 19 July 2021 and reported to be tolerating his diet and fluid. On 20 July 2021 the records indicate the Trust were planning Mr P’s discharge from hospital however he developed symptoms of fever and the records indicate the Trust thought it likely he was suffering with aspiration pneumonia.
40. The records indicate the Trust treated Mr P with antibiotic medication in accordance with the BTS guidance which states:
‘Management of Aspiration Pneumonia
A 5-day course of antibiotics is considered adequate unless there is failure to improve, in which case alternative sources of illness, complications and/or an alternative antibiotic regimen should be sought.’
41. The records indicate on 21 July 2021 the Trust recommended Mr P’s fluid provision change from thin to slightly thickened liquid due to the difficulties he was demonstrating with his swallowing at this time. The records indicate the Trust recommended Mr P be treated as nil by mouth if any further concerns were identified with his ability to swallow.
42. The records indicate the Trust provided Mr P with thin fluids on the morning of 21 July 2021 despite the recommended change to thickened fluids and there is no information in the records to explain why thin fluids were provided on this occasion. The records indicate the Trust SLT team then recommended Mr P be treated as nil by mouth on 22 July 2021 due to the risk of him suffering further aspiration on all consistencies of food and fluid.
43. Our physician adviser said management of patients with compromised swallowing, especially when they have Parkinson’s disease is complicated and difficult. Whether to modify a person’s intake, make a person nil by mouth and insert an NG feeding tube are all difficult decisions and rely on educated judgement calls and trialling the suggested intervention. Our physician adviser said there is no evidence in the records to indicate not treating Mr P as nil by mouth on 21 July 2021 had a detrimental impact on his condition or that his outcome would have been different if he had been treated as nil by mouth sooner.
44. Our SLT adviser said there is no evidence to indicate not treating Mr P as nil by mouth on 21 July 2021, or the oversight which led to him being given thin fluid that day, had a detrimental impact on his condition. The Trust decided to treat him as nil by mouth the next day and insert an NG feeding tube to support him with his nutrition and fluid. There is no evidence in the records to indicate his condition deteriorated during this period as a result of the Trust not treating him as nil by mouth a day sooner.
45. We carefully considered Mrs 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 Mrs O’s concerns about the difficulties her father experienced with his nutrition and fluid at this time. We acknowledge her view that her father should have been treated as nil by mouth on 21 July 2021 instead of on 22 July 2021. We also acknowledge that the Trust has agreed with Mrs O’s view in its response to her complaint.
46. We found no evidence to indicate the delay in treating Mr P as nil by mouth had a detrimental impact on his condition or that his outcome would have been different had he been treated as nil by mouth on 21 July 2021.
Inappropriately inserted an NG feeding tube on 22 July 2021
47. Mrs O says it was inappropriate for the Trust to insert an NG feeding tube at this time. She says the Trust did not adequately assess her father’s ability to consent to the procedure or provide him or his family with adequate information to inform such a decision prior to the tube being inserted.
48. Our SLT adviser said once the decision is made to treat a patient as nil by mouth the consideration of how that person will receive fluids and nutrition is imperative. Our SLT adviser said the decision of the Trust’s SLT team to recommend insertion of an NG feeding tube is appropriate in this situation given Mr P’s nutrition and fluid requirements and the decision to treat him as nil by mouth.
49. Our physician adviser agreed and said as the Trust’s SLT team had recommended he be treated as nil by mouth, it was appropriate for the medical team to follow this advice. At this point an NG feeding tube would have been the only realistic option as Mr P could not have been kept nil by mouth with no alternative method of feeding.
50. Our physician adviser said treating Mr P as nil by mouth and commencing feeding by NG feeding tube would have been a difficult decision for the Trust to make. Insertion of, and feeding by, an NG feeding tube presents challenges and risks of its own. Our physician adviser said the decision was important for Mr P, not only to ensure his nutrition and fluid provision but also to ensure the provision of his Parkinson’s disease medications. Our physician adviser said the Parkinson’s disease medications the Trust provided to him in hospital are usually given by mouth and can be given through an NG feeding tube, however they cannot be given by injection.
51. Our physician adviser said not providing Mr P’s medications would have exacerbated his Parkinson’s disease making many things worse, including his swallowing difficulties. Management of patients with compromised swallowing, especially when they have Parkinson’s disease is complicated and difficult. Our physician adviser said there is no evidence in the records which would indicate the decision to insert an NG feeding tube was inappropriate or not in Mr P’s best interests.
52. The records indicate the Trust completed a mental capacity assessment on 16 July 2021. This was specifically relating to Mr P remaining in hospital against his wishes and the Trust decided at this time that he did not have the capacity to make his own decision on whether to remain in hospital.
53. The GMC professional standards state the assessment of capacity and consent is with respect to a specific decision, meaning that it cannot be applied to decisions in general. Therefore, the mental capacity assessment carried out by the Trust on 16 July 2021 could only be used to keep Mr P in hospital.
54. The doctor had a discussion with Mr P on 21 July 2021 to assess his capacity to decline thickened fluids and the records indicate the doctor concluded Mr P did not have the capacity to make this decision. There is no evidence in the records to indicate any further discussions were held to gain consent, or assess Mr P’s capacity to consent, for the insertion of an NG feeding tube.
55. In line with the GMC professional standards a separate capacity assessment should have been completed by the Trust in relation to the insertion of an NG feeding tube. In a situation where a patient has been deemed not to have capacity, GMC professional standards state a doctor must consult with those close to the patient before deciding what would be of overall benefit for the patient and there is no evidence in the records of any such discussions being held by the Trust.
56. The notes of the procedure to insert the feeding tube say ‘NG tube insertion, no problems’. Our physician adviser said this suggests Mr P cooperated with the procedure and the Trust may have regarded his cooperation as non-verbal consent. However in accordance with the GMC professional standards non-verbal consent is not appropriate for invasive procedures such as the insertion of an NG feeding tube and should only be resorted to for routine minor investigations and treatment.
57. We carefully considered Mrs O’s complaint and the information in the records, the guidance and the advice we have received. We found no indications of failings in the Trust’s decision to insert an NG feeding tube on 22 July 2021. This was the only option available to the Trust once it had decided to treat Mr P as nil by mouth. However the Trust did not appropriately assess Mr P’s ability to consent to the procedure or provide him or his family with adequate information to inform the decision prior to the tube being inserted.
58. Mrs O says the Trust did not appropriately monitor and review the food and fluid provided to her father through the NG feeding tube or provide appropriate care to ensure safe feeding was carried out. Our nurse adviser said the records indicate the Trust monitored Mr P’s nutritional intake whilst he had an NG feeding tube and his fluid balance charts were completed for the period. The records also include entries from the Trust dietician and SLT team documenting the reviews of his nutritional intake whilst the NG feeding tube was in place.
59. Mrs O says the Trust laid her father flat when he was fed overnight. Our nurse adviser said, in line with the NNNG guidance, before administering feed or medication with an NG feeding tube the nurse should ensure the patient is positioned upright or at a minimum of a 30 degree angle and it would not be appropriate for the Trust to lay Mr P flat whilst administering his feed. In its response to this point the Trust has said it could not confirm Mr P’s position overnight as it was not documented in the records.
60. The GMC guidance states:
‘Record your work clearly, accurately and legibly. Documents you make (including clinical records) to formally record your work must be clear, accurate and legible. You should make records at the same time as the events you are recording or as soon as possible afterwards.
Clinical records should include: • relevant clinical findings • the decisions made and actions agreed, and who is making the decisions and agreeing the actions • the information given to patients • any drugs prescribed or other investigation or treatment • who is making the record and when.’
61. Our nurse adviser said there is no evidence in the records to indicate the Trust laid Mr P flat whilst providing his NG feed. However there is also no evidence in the records to indicate he was consistently correctly positioned whilst the Trust provided his NG feed.
62. The records include the patient positioning chart from 22 July 2021 which says Mr P was sat up in bed during the evening whilst the Trust provided his NG feed. However this is the only patient positioning chart in the records and there are no charts for the following 2 days and no other information in the records which may offer any indication of Mr P’s position during his NG feeding on these days.
63. We carefully considered Mrs 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 Mrs O’s concerns about the Trust feeding her father overnight whilst he was laid flat.
64. There is insufficient evidence to allow us to comment on whether the Trust laid Mr P flat whilst it provided his NG feed and insufficient evidence to allow us to comment on any potential impact this may have had. This is because there is no information in the records to explain how the Trust ensured Mr P was appropriately positioned when it provided his NG feed. The insufficient information in the Trust’s records has created doubt about whether Mr P was appropriately positioned by the Trust whilst his NG feed was administered which we cannot now resolve.
65. Mrs O says the Trust’s decision to insert an NG feeding tube, and the care provided by the Trust whilst feeding her father, caused him to aspirate again between 22 and 24 July 2021. Mrs O says this led to a further deterioration in his condition and his death on 26 July 2021.
66. The records and supporting x-ray scans indicate the NG feeding tube was correctly placed on 22 July 2021. The records indicate that around midday on 24 July 2021 Mr P suffered a drop in his oxygen levels and increase in his breathing rate. The Trust performed a repeat chest x-ray which indicated the tube may have moved slightly in comparison to the previous x-ray but remained in place in his stomach. Our physician adviser said the opinion that the tube may have moved is not clinically relevant if it remains in the correct place. It would not have any impact on the function of the tube if it is a little higher or lower than on the previous chest x-ray as long as it remains in the stomach.
67. The records indicate the Trust believed it likely Mr P had aspirated and large amounts of liquid feed were suctioned from his airways. Our physician adviser said this can happen at any point when a patient is fed through an NG feeding tube, even when the tube is in the correct place, and it does not mean the tube had become displaced and was not reaching Mr P’s stomach. The RCP guidance says ‘risk of aspiration from correctly placed NG feeding tube cannot be completely eliminated. Many patients are at increased risk of aspiration of secretions even without NG tube feeding.’
68. Our physician adviser said Mr P was at risk of aspiration due to his condition with or without an NG feeding tube. Although the Trust’s decision to treat him as nil by mouth and feed him through an NG feeding tube changed the composition of his nutrition (from consumed food and drink to nasogastric feed) there is no evidence to indicate it caused his aspiration or led to his deterioration and death.
69. We carefully considered Mrs 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 Mrs O’s concerns about the Trust’s decision to feed her father through an NG feeding tube and the care taken by the Trust to ensure his feed was safely provided.
70. Aspiration cannot be completely ruled out in any patient and there is no guarantee that any measures taken to reduce the risk will prevent a patient from aspirating. This risk cannot be completely removed even with the changes in food and fluid consistencies and feeding methods. We found no evidence to indicate the NG feeding caused Mr P to aspirate or led to his death.