St Helens and Knowsley Teaching Hospitals NHS Trust

6. Mr E complains about the following aspects of care his wife, Mrs E, received at St Helens and Knowsley Teaching Hospital NHS Trust (the Trust) between 29 and 30 October 2018:

· the Trust delayed discharging his wife home · the Trust failed to provide him with adequate information about the end-of-life process, prior to his wife being discharged · the Trust failed to adequately communicate with him the reasons for his wife’s delayed discharge home.

7. Mr E says the delayed discharge meant he lost precious final hours to spend with his wife before she died, which caused him significant distress and upset. Mr E said this distress and anger had a lasting impact on his memory of his wife.

8. Mr E says the lack of adequate information about the Enhanced Rapid Discharge (ERD) process meant he did not know what to expect and was distressed once his wife died. Mr E said the Trust’s lack of communication with him about the delayed discharge caused him significant and ongoing distress, upset, and anger.

9. Mr E wants a sincere and genuine apology from the Trust. Mr E also wants service improvements and a financial remedy.

10. On 27 October 2018, Mr E’s wife, Mrs E, was admitted to hospital. She had a diagnosis of progressive terminal multiple sclerosis and the cause of her admission to hospital was an infection, and not passing urine.

11. A consultant reviewed Mrs E on the morning of 30 October 2018, noting she was approaching the end of her life. As Mrs E expressed a wish to die at home, she was to be discharged under Enhanced Rapid Discharge. The Enhanced Rapid Discharge from hospital to home is designed to support the wishes of patients in their last hours or days of life when their preferred place of care is at home. A palliative care nurse met with Mr and Mrs E that day, then a number of referrals were made to community services, including specialist palliative care and district nursing.

12. A respiratory nurse specialist saw Mrs E at 12.45pm and completed a home oxygen form and, at 1.30pm the completed transfer of care form. The hospital discharge letter was printed at 4.17pm and the first request for transport was made at 5.54pm. The ambulance service processed the request at 6.15pm and informed the Trust the service was particularly busy that evening.

13. The Trust contacted the ambulance service again that evening asking for an update and was informed that due to the high number of emergency calls, no emergency ambulances were available. Mrs E was discharged at 11pm, following her husband collecting her from hospital. The following morning, Mrs E died at home.

Delayed discharge

17. Mr E complains on 30 October 2018, the Trust delayed discharging his wife from hospital once it agreed she was able to go home. The consultant agreed Mrs E could be discharged at 9.20am on 30 October. Mr E says the Trust did not arrange an ambulance in a timely manner, which led to him collecting his wife himself from the hospital at 11pm that evening, after receiving no contact from the hospital until 10.30pm.

18. The Trust’s ERD policy says it aims to discharge patients’ home within six hours. The Trust’s discharge policy says nursing staff should escalate concerns to the matron or site manager, concerning transport delays.

19. The NMC Code says nurses must respect the skills, expertise, and contributions of your colleagues, referring matters to them when appropriate. It goes on to say, nurses must keep colleagues informed when they are sharing the care of individuals with other health and care professionals and staff.

20. Our adviser explained it was concerning that the Trust did not make the initial transport request until 5.54pm and notes the delay for this being due to the outstanding hospital discharge letter. Our adviser explained the delay in booking transport should not have happened because of the unavailability of the discharge letter, as information was available in the transfer of care document and district nursing and community palliative care referral. A respiratory nurse specialist saw Mrs E at 12.45pm and completed a home oxygen form and, at 1.30pm the completed transfer of care form - to the district nursing and community palliative care team.

21. Our adviser explained in line with the NMC guidance above, nursing staff should have taken steps to consult with the medical team to ensure earlier completion of the discharge letter, or for discharge to take place without a copy of this.

22. All other steps taken to expedite the ERD were completed by 2pm, and had the discharge letter been completed sooner (or not been required), an earlier request for transport should have been made. Our adviser explained based on the time of the first request for transport, it took five hours to discharge Mrs E.

23. Our adviser added there was a delay in booking transport and so the actual time to discharge would be considered longer. Our adviser explained the ERD process says the aim would be to discharge a patient within six hours. The discharge of Mrs E did not take place until 11pm when Mr E came to collect her. The discharge therefore took three hours longer than what the Trust aims for.

24. The initial transport request for Mrs E was not made until 5.54pm and the Trust indicated the delay was because nursing staff were awaiting completion of the hospital discharge letter. We think nursing staff should have printed the letter earlier, once ERD arrangements appeared to be completed at 2pm, or if they were unable to do this, arrange for Mrs E to be discharged without the letter.

25. We saw no indication the nursing staff escalated concerns to the matron or site manager following the acknowledgement of delayed transport for Mrs E, as the Trust’s ERD policy stipulates. The Trust notes in its complaint response, that the Macmillan nurse acknowledged no discussion had taken place with nursing staff about an alternative option of a private ambulance.

26. From completing the do not attempt resuscitation (DNAR) form at 2pm, and Mrs E being discharged from hospital at 11pm, nine hours had elapsed. While we accept the ambulance service was unable to fulfil the request to arrange transport, when the Trust became aware of this, it should have been escalated to determine whether a private ambulance could have transported Mrs E home. As this is not in line with the Trust’s ERD policy and NMC guidance, we find this to be a failing.

27. Our Principles for Remedy says where maladministration or poor service has led to injustice or hardship, organisations should try to offer a remedy that returns the complainant to the position they would have been in otherwise. If that is not possible, the remedy should compensate them appropriately. An appropriate range of remedies will include an apology, acknowledgement of responsibility or remedial action.

28. We cannot say for certain how much earlier Mrs E would have been returned home had the Trust completed the discharge letter earlier than it did, or if it had provided a private ambulance. We think, on the balance of probabilities, Mr E would have had more time with his wife in the end of her life had the failing not occurred, as there was an opportunity to arrange earlier transportation, or inform him of the delay. If Mr E was informed earlier, he could have decided to collect her earlier. We think Mr E suffered a material loss of time with his wife as a result of the failing we identified.

29. We consider it likely Mr E suffered some degree of distress, anger, and upset due to the delayed discharge. We think this was over a short period of time, but significant, given his wife was palliative, he did not know how long she would live, and that he expected her home shortly after he left from visiting her in hospital. Mr E made the proactive decision to collect her from hospital so he could have his wife home and spend more time with her before she died. The Trust acknowledged in its initial complaint response to Mr E that, although all the required referrals were made, the support in the community did not take place in a timely manner and it apologised for this.

30. In its Local Resolution Meeting minutes, the Trust apologised for the delay in booking an ambulance for Mrs E, and said it let her and Mr E down due the discharge letter awaiting completion. The Trust said it reminded staff that ERD should never be delayed because of outstanding discharge letters.

31. The Trust also explained it reminded staff of the importance of booking ambulances as soon as possible to reduce the risk of delay. The Trust explained, following the complaint, it now had an ambulance service facility for use within the hospital up to 8pm, to ensure delays do not reoccur in the future. The Trust agreed to provide a further apology to Mr E as part of our resolution proposal.

32. We note the Trust apologised to Mr E for the delay and the impact this had on him. It also introduced the following service improvements:

· improving the documentation the specialist palliative team use · reminded staff about not delaying discharging patients due to discharge letters · reminded staff on the importance of booking ambulances as quickly as possible for patients under ERD process · introduced the facilitation of an internal ambulance service for patients needing transport.

33. We think the Trust’s complaint responses and meeting, where it apologised to Mr E, and the service improvements it introduced were positive and demonstrated a robust attempt to resolve the complaint. We think its apology and service improvements remedies the distress and upset Mr E experienced.

34. We do not consider the apology or service improvements mitigate Mr E’s material loss of time with his wife before she died. While it was unknown how long Mrs E would go on to live, she expressed a wish to die at home and the ERD process should have facilitated a discharge home within six hours. We therefore consider this part of the injustice to Mr E remains unremedied, in line with our Principles.

35. We explain our recommendations to address this injustice at the end of this report.

Information on end-of-life

36. Mr E complains he was not given information to help him understand what he should do when his wife died at home. He told us how he experienced uncertainty and confusion about who he should contact, and what the process was. We understand this must have been a very distressing time for Mr E.

37. NICE guidance emphasises the importance of communication and shared decision-making with the dying person and those important to them. Our adviser explained information should be given about equipment provision, personal care provision, community nursing, specialist palliative care and GP input, what to expect in the last hours of life, and who to contact following the person’s death. They also said verbal information should be supported by written information.

38. We note in the Trust response, the palliative care nurse specialist met with Mr and Mrs E on 30 October 2018. There is limited reference to the content of this discussion. It is, however, evident from an entry documented by the discharge co-ordinator that Mr E was aware that his wife was ‘palliative’ and that her condition had rapidly deteriorated during her hospital stay.

39. Prior to Mr E leaving hospital, the records do not indicate he was informed about the role of the district nursing staff who would be delivering Mrs E’s day-to-day care and when, or if, specialist palliative care services would be involved. Our adviser explained it was unclear if Mr E was fully aware that a package of care would not be available and that he would need to meet his wife’s personal care needs.

40. Our adviser reviewed the Trust’s ERD leaflet (2018) given to Mr E and saw it contained no information on what should happen when a person dies in the community. We saw a section of the form was available for useful contact numbers, to be contacted if there were any concerns, but we are unable to confirm if these numbers were provided to Mr E when he received the leaflet as we do not have a copy of the original leaflet given to him.

41. The updated leaflet (2021) provides information on the ERD process. The only amendment made in 2021 version is in regard to the lack of availability of a package of care on discharge (due to the rapid nature of the discharge). An additional sentence identifies that, because of the lack of a package of care, family must provide personal care. We are unable to determine what information Mr E was told prior to his wife’s discharge other than that she was palliative, and her health was rapidly deteriorating.

42. We are satisfied that there was a lack of information provided to Mr E, both written and verbal, about what to expect in the last hours before his wife’s death. As this was not in line with NICE guidance, we consider this a failing.

43. We think Mr E experienced some degree of distress because of the uncertainty he experienced, but that this was against a backdrop of bereavement as his wife had recently died. We do not consider distress from the uncertainty to be significant as we think the loss of his wife at that time would be the prevailing cause of distress. We do however think the uncertainty he experienced added to his distress following his wife’s death.

44. While the uncertainty was over a short period of time, it was significant, and Mrs E’s body remained in the home for 14 hours before it was taken to the mortuary. Had Mr E been provided with information he needed once his wife died, the uncertainty he experienced could have been mitigated. We do not consider this impact to be remedied by the Trust as its ERD leaflet does not contain information which would prevent this injustice from reoccurring.

45. Our Principles for Remedy says remedies should be fair, reasonable, and proportionate to the injustice or hardship suffered. The organisation should consider how the circumstances of the case have affected the complainant in all ways. We think the Trust has not considered the information Mr E needed when amending its ERD leaflet and we do not consider this to be in line with our Principles. We have made recommendations to address this at the end of this report.

Communication about delayed discharge

46. Mr E complains the Trust failed to tell him his wife’s discharge was delayed until late in the evening on 30 October 2018. He says it was incredibly frustrating for him and he felt anger and upset as he wanted her to be home. He told us his family member told him that his wife wanted to tell him something once she got home, but when he collected her she was non-verbal. This has had a lasting impact on Mr E, the memory of his wife and those events.

47. NMC guidance says nurses must share with people, their families and their carers, as far as the law allows, the information they want or need to know about their health, care and ongoing treatment sensitively and in a way they can understand.

48. Our adviser explained in Mr E’s situation, he should have been contacted by telephone and informed that Mrs E’s discharge from hospital was delayed. He was not contacted until approximately 10.30pm, following which he decided to come and collect his wife from hospital and take her home himself. Mr E says he was not contacted at all and was already making his way to the Trust at 10.30pm. We saw no evidence the Trust attempted to contact Mr E earlier, after becoming aware of the delay.

49. There were two potential earlier opportunities for Mr E to be informed of the delayed discharged. The first was at 5.54pm when transport was initially requested. The Trust was aware the ambulance service was very busy that evening and could have informed Mr E of this, so he could have decided himself what he wanted for his wife. The second opportunity was at 9.17pm when the Trust became aware ambulance transport was unavailable due to the busyness of the service. The Trust could have contacted Mr E at this point but did not until 10.30pm.

50. We think the Trust should have contacted Mr E by telephone when it became aware Mrs E’s discharge from hospital was delayed. It did not do this, and we do not consider this to be in line with NMC guidance and so think this is a failing.

51. The Trust did not provide, as part of its complaint response letters to Mr E, a substantive response to this point of complaint. The Trust did however, as part of our resolution proposal, apologise for the lack of communication it had with Mr E around the delayed discharge. The Trust offered to provide an explicit apology to him for this along with a financial remedy.

52. Our Principles for Remedy says in considering a remedy, organisations should ideally, return complainants and, where appropriate, others who have suffered injustice or hardship as a result of the same maladministration or poor service, to the position they were in before the maladministration or poor service took place. If that is not possible, compensate them appropriately.

53. The impact Mr E says he experienced is closely linked to the delayed discharge. Had Mr E been informed of the delay he would have had a choice to collect his wife from hospital much sooner. We think the lack of communication likely caused Mr E significant distress, upset, and anger. He said he was angry after receiving the call at 10.30pm and decided to collect his wife from the hospital himself.

54. We think the distress, upset and anger resulting from the lack of communication was over a short, but significant, period of time, given his expectation of his wife being home much earlier. The Trust has offered to apologise explicitly for the lack of communication and offer a financial remedy to Mr E in recognition of this.

55. The Trust’s offer of an apology and a financial remedy is positive and in line with our Principles, but we think this alone does not return Mr E to a position he would have been in had the failing not occurred. We think the Trust should review its policies around communication with relatives of patients discharged under ERD, to ensure the failing does not reoccur. We have made recommendations to address this.

1. We were sorry to hear of the sad loss of Mr E’s wife and how he is still grieving. He told us about the distress, upset, and anger he experienced, along with loss of time with his wife before she died. We appreciate it was, and remains, a very difficult experience for him.

2. We found the Trust delayed discharging Mr E’s wife home, and it should have escalated this once it became aware the transport was delayed, which we consider a failing. We found this led to Mr E losing the opportunity to spend more time with his wife before she died, causing him distress, upset and anger. We acknowledge the Trust has apologised and introduced service improvements in recognition of the delay. However, we consider the lost opportunity Mr E had to spend more time with his wife is unremedied.

3. We found the Trust provided insufficient information to Mr E about what would happen when his wife died at home, which is a failing. This led to Mr E being uncertain about what he should do when his wife died. We do not find the significant distress he experienced primarily stemmed from this failing. We found the distress Mr E felt was mainly due to the grief he experienced when his wife died.

4. We found the Trust failed to communicate with Mr E about his wife’s delayed discharge and should have updated him sooner than it did. We found this led to Mr E experiencing significant distress, upset, and anger.

5. Based on the above, we uphold this complaint. We recommend the Trust:

· apologises to Mr E for the upset and distress caused by not communicating with him about his wife’s delayed discharge · introduces an action plan to address the communication issues experienced on Mrs E’s discharge · reviews its Enhanced Rapid Discharge leaflet to address the injustice caused to Mr E · pays Mr E a financial remedy of £750.