A practice in the Oadby and Wigston area

5. Ms A complains that on 14 November 2022 the Practice decided her mother, Mrs X, should be nil by mouth, without carrying out a proper assessment. Ms A complains that the Practice made her mother nil by mouth with the potential of a five day wait before an appointment and proper assessment by the speech and language team (SALT).

6. Ms A complains about the time taken and lack of communication and response from the Practice when handling her complaint.

7. Ms A says the Practice’s actions were extremely distressing for Mrs X, who did not have the ability to understand why she was not receiving food or drink. Ms A says the Practice’s actions meant Mrs X’s final days before she died were uncomfortable and it was upsetting for her family to witness her struggle.

8. Ms A says the Practice’s complaint handling has caused frustration and extended the period of grief following her mother’s death. Ms A says she has not been able to move on or receive closure whilst the complaint is ongoing.

9. As an outcome to her complaint, Ms A is seeking service improvements and financial remedy.

10. Mrs X had advanced dementia and lived in a care home. On 14 November 2022, a GP from the Practice assessed her following concerns about her swallowing. The GP documented that Mrs X was very frail, likely nearing end of life, and ‘likely had an unsafe swallow’. The GP advised mouth care only and made an urgent SALT referral. Ms A tells us she disagreed with the decision.

11. On 16 November 2022, a different GP reviewed Mrs X by video. They documented she was approaching end of life and advised that she could have ‘sips of water’ and ‘shakes if desired’. Mrs X died on 17 November 2022.

12. Ms A raised her complaint with the Practice on 22 December 2022. The Practice said it issued a full response on 13 August 2024. However, Ms A has told us she did not receive this response. The Practice sent this response to us on 23 December 2024, and we shared this with her at that stage.

Nil by mouth decision 16. Ms A complains the Practice placed her mother on nil by mouth without a proper assessment on 14 November 2022, causing unnecessary distress.

17. In its complaint response, the Practice explained that on 14 November 2022 the GP assessed Mrs X following concerns raised by care home staff about her swallowing. The GP considered Mrs X to be very frail and approaching the end of her life and was concerned about the risk of choking or aspiration.

18. The Practice said that, because of uncertainty about Mrs X’s swallow, the GP advised mouth care only and made an urgent referral to the speech and language therapy (SALT) service, believing an urgent assessment was available. The Practice said the GP discussed this plan with the care home and Ms A and understood that Ms A agreed at that time. Ms A says she did not agree.

19. The GMC guidance states that doctors must assess nutrition, and hydration needs separately and keep them under review. It explains that for patients approaching the end of life, maintaining comfort is the priority and that comfort feeding is usually appropriate, even where there is a risk of aspiration.

20. Our GP adviser said comfort feeding means offering food and fluids in small amounts, based on the person’s wishes and tolerance, with the aim of maintaining comfort rather than providing full nutrition or avoiding all risk. This approach accepts that there may be some risk of aspiration but prioritises comfort and relief from thirst or hunger.

21. The records show on 14 November the GP assessed Mrs X, who had advanced dementia and appeared to be nearing the end of her life. The GP felt there was uncertainty about her ability to swallow safely and advised the care home to provide mouth care only. The GP made an urgent SALT referral.

22. On 16 November, a different GP reviewed Mrs X and advised that, given her end-of-life stage, she could have sips of fluid for comfort. That same day, SALT told Ms A they do not provide urgent end-of-life swallow assessments and recommended a comfort-feeding approach. Mrs X died on 17 November.

23. Our GP adviser explained that, for people with advanced dementia who appear to be nearing the end of life, the usual approach is comfort feeding as requested, accepting the risk of aspiration. They said the comfort feeding approach should have been used for Mrs X on 14 November 2022. They explained that a SALT assessment was not clinically required in this context and that feeding decisions should not have been dependent on SALT input.

24. We find that the decision to place Mrs X on nil by mouth on 14 November 2022 was not in line with the GMC guidance. As Mrs X was end of life, a comfort-feeding approach should have been offered instead, and reliance on a SALT referral was not appropriate in this clinical context. We consider this to be a service failure.

25. Our GP adviser said it is likely that Mrs X experienced distress from thirst between 14 and 16 November. As Mrs X was at the end of her life, our GP adviser said this did not contribute to her death. However, we consider it likely reduced her comfort in her final days. Ms A also found it distressing to witness her mother’s discomfort and we recognise this would have been extremely difficult for her.

26. We can see the Practice has apologised for the distress caused and has shared learning with its clinical team about the use of urgent SALT referrals. However, we do not consider that the Practice has acknowledged that comfort feeding should have been offered on 14 November, or that the decision to place Mrs X nil by mouth was inappropriate.

27. The Practice has also not recognised the distress this may have caused Mrs X in her final days or taken steps to address that impact for Ms A.

28. We do not consider the actions the Practice has taken go far enough to put things right. We appreciate that it will have been extremely distressing for Ms A watching her mother suffer at the end of her life, particularly knowing that some of this may have been avoidable.

Complaint handling

29. Ms A told us that the Practice’s failure to respond to her complaint for nearly two years caused significant and ongoing distress. She explained that she raised her complaint shortly after her mother’s funeral, hoping for answers about her mother’s final days. Instead, she was left without updates or explanation, which prolonged her grief and prevented her from gaining closure.

30. Ms A made her initial complaint on 22 December 2022. The Practice acknowledged receipt on 3 January 2023 and asked her to confirm that she was authorised to act on her mother’s behalf. Ms A responded promptly on 6 January 2023, explaining that she had held power of attorney and had been fully involved in her mother’s care. Despite this, the Practice sent a similar request again on 11 January 2023.

31. From January to October 2023, Ms A made repeated attempts to progress her complaint. She left messages, attended the Practice in person, and provided formal evidence of her status as executor on 21 July 2023. The Practice told her that the investigation could not progress without this information. Ms A continued to follow up in August 2023 and hand-delivered a letter in October 2023. After this point, the Practice ceased communicating with her.

32. During this period, the Integrated Care Board (ICB) told us that it attempted to contact the Practice between December 2023 and March 2024 to assist Ms A in obtaining a response. It did not receive a reply.

33. Ms A contacted us on 27 April 2024 because she still had not received a response. We wrote to the Practice on 27 May 2024 asking it to provide a response by 7 June 2024. The Practice wrote to Ms A on 31 May 2024, apologising for the delay and stating that its response had been drafted. However, no response was issued.

34. We followed this up again on 4 July 2024, asking the Practice to respond by 19 July 2024. Ms A told us she still received nothing and contacted us again in August 2024.

35. On 23 December 2024, the Practice told us that it had posted a response on 13 August 2024. Ms A says she did not receive this. The Practice said its investigation had been delayed and was only started once it received executor documentation in July 2023.

36. The Regulations require organisations to respond, ‘as soon as reasonably practicable’, and specifically state that organisations must send the complaint response within six months or explain why they are unable to do so.

37. Our NHS Complaint Standards say staff should respond to complaints at the earliest opportunity and give clear timeframes for how long it will take to look into the issues, taking into account the complexity of the matter.

38. The Practice received confirmation of Ms A’s legal authority in July 2023 but did not provide a response until August 2024 and Ms A did not receive this until December 2024. During this time it did not meet deadlines set by us and did not respond to repeated attempts by the ICB to assist.

39. We have found that the Practice’s complaint handling took over 12 months, it did not communicate with Ms A during this time, and the investigation was not complex enough to merit such a delay. It also did not keep Ms A, the ICB, or us appropriately informed about the progress of the complaint. This is not in line with the Regulations or the NHS Complaint Standards, and we consider this to be a service failure.

40. Ms A explained that these delays caused prolonged distress at a time when she was already grieving her mother’s death. She described being unable to move forward because she was left without answers about her mother’s final days.

41. We appreciate this would have been a difficult time for Ms A and that the delays in the complaint handling exacerbated this. Based on the evidence, we are satisfied that these delays directly contributed to her ongoing distress.

1. We are very sorry to hear about Ms A’s complaint and recognise it has been a very difficult and distressing time for her.

2. We have found that the Practice should not have placed Mrs X on nil by mouth on 14 November 2022. We have found this caused her avoidable distress in the final days of her life.

3. We have also found that the Practice did not handle Ms A’s complaint in line with the NHS Complaints Regulations. We have found that this prolonged Ms A’s distress over a period of almost two years, during which she was repeatedly left without answers about the circumstances of her mother’s final days. As such, we have upheld this complaint.

4. We have found that the Practice has not done enough to put things right for Ms A. We have therefore recommended that the Practice provide evidence of service improvements, a detailed apology, and a financial remedy to recognise the distress caused to Mrs X and the prolonged grief experienced by Ms A, who was unable to find closure.

42. We make recommendations in line with our Principles for Remedy which say public bodies should acknowledge failures, apologise, make amends, and use the opportunity to improve their services. The Principles say we aim to ensure the public body puts the complainant back in the position they would have been in had nothing gone wrong. If that is not possible, the public body should compensate them appropriately.

43. Our Principles for Remedy are reflected in the NHS Complaints Standards which say organisations should offer fair remedies to put things right and identify learning and use it to improve services.

What we found

44. Through investigating Ms A complaint, we found: • the decision to place Mrs X nil by mouth on 14 November 2022 fell below the GMC guidance, as a comfort-feeding approach should have been advised • this caused avoidable distress to Mrs X in her final days, and caused Ms A further to upset in witnessing her discomfort • the Practice’s complaint handling involved significant, avoidable delays, and it did not keep Ms A updated, which prolonged her distress and prevented her gaining closure.

What the organisation should do

45. Our Principles for Remedy say organisations should acknowledge poor service and take steps to put things right when this leads to an injustice or hardship.

46. The Practice should write to Ms A to: • acknowledge and apologise for the decision to place Mrs X nil by mouth on 14 November 2022 without offering a comfort-feeding approach • acknowledge and apologise for the distress this caused Mrs X and for the emotional impact on Ms A • apologise for the significant delays in responding to Ms A’s complaint and for not keeping her updated and recognise the prolonged distress this caused • the Practice should also send a copy of this letter to us within one month of the date of our final report.

47. Our Principles for Remedy say organisations should acknowledge poor service and take steps to put things right when this leads to an injustice or hardship.

48. To decide on a level of financial remedy, we review similar cases where the person has experienced a similar injustice, along with our severity of injustice scale. Following this review, we recommend the Practice: • pay Ms A £500 in recognition of the avoidable distress caused to her mother in the final days of her life, and the prolonged emotional distress caused to Ms A by the Practice’s significantly delayed handling of her complaint. This amount reflects a level 2 injustice under our severity of injustice guidance. It recognises the avoidable distress and loss of comfort experienced by Mrs X in the final days of her life, and the prolonged emotional impact on Ms A caused by the Practice’s delayed complaint handling. While the injustice did not result in lasting physical harm or affect the outcome of Mrs X’s care, it occurred at a particularly sensitive time and was compounded by significant and avoidable delays, meaning an apology alone would not be a sufficient remedy.

• the Practice should send us evidence it has done this within one month of the date of our final report.

49. Our Principles for Remedy also say organisations should look for continuous improvement and learn lessons from complaints to make sure poor service is not repeated.

50. We recommend the Practice produces an action plan to address the failings identified in: • clinical decision-making around nil-by-mouth instructions and end-of-life comfort feeding • understanding and use of SALT referrals, including awareness of which services provide urgent assessments • complaint handling processes, including how complaints are tracked, communicated and responded to within statutory timeframes

51. The action plan should identify the reasons for these failings where possible, state who is responsible for each action, the timescales for completion, and how progress will be monitored. It should share the completed action plan with us and Ms A within three months of the date of our final report, together with supporting evidence of learning and assurance, including: • the significant event analysis (SEA) record relating to this incident • evidence of how learning was shared with clinical staff (for example, meeting minutes or training records) • evidence of any audit or monitoring undertaken to assure the Practice that similar incidents have not occurred since.