North West Anglia NHS Foundation Trust

5. Mrs S complains about the Trust’s care and treatment of her late husband, Mr S, between December 2019 and January 2020. Specifically, she complains the Trust:

• did not tell her what her husband was being treated for • completed a recommended summary plan for emergency care and treatment (ReSPECT) form without discussing it with her • completed the ReSPECT form with inaccuracies and omissions • did not tell her about the use of AMBER care (a care package used for patients whose recover is uncertain) • did not carry out Mr S’s personal wishes for end-of-life care • was inconsistent in its prognosis assessments • failed to follow through on or ignored agreed and expected phone calls • made untrue and distressing accusations about her being verbally abusive • did not respond seriously to Mr S’s age being recorded incorrectly on a medical certificate • lost Mr S’s medical notes in the post.

6. Mrs S says this caused her to experience huge frustration, sadness and regret. She says she has required counselling due to these events.

7. Mrs S would like an apology and answers about what happened.

8. On 1 December 2019, Mr S presented to accident and emergency and was diagnosed with sepsis.

9. On 11 December 2019, Mrs S asked for someone to call to tell her which ward the Trust would take Mr S to. She says nobody called her.

10. Mrs S says that on 12 December 2019 a nurse completed do not resuscitate (DNR) and ReSPECT forms while talking generally about DNR decisions. She says a doctor’s note made on 13 December reported ‘AMBER care to be discussed’ but she did not have that conversation.

11. Mrs S told us she was expecting a call on 17 December 2019 from a doctor and stayed by the phone. The doctor called and asked what Mrs S wished to discuss. She told us that, as she was talking, the doctor said he was very busy and said, ‘With respect, I am going now’, then ended the call.

12. Mrs S says that during a telephone call on 19 December 2019, the Trust accused her of being verbally abusive. She denies she was verbally abusive.

13. On 20 December 2019, Mrs S asked a doctor for Mr S’s prognosis. Mrs S said the doctor responded with ‘only weeks to live but maybe up to a year’ and that the results of the bone scan would not change the prognosis. Mrs S says on the same day doctors agreed for AMBER care to be put in place for Mr S. Mrs S says no one discussed it with her and she did not see an AMBER care form.

14. On 24 December 2019, Mrs S asked for copies of the ReSPECT form and the reports of the interviews with two doctors. She says the Trust did not provide her with the copies and told her to request them via its patient advice and liaison service.

15. On 25 December 2019, Mr S was in a lot of pain, agitated and distressed. The next day, Mrs S called the Trust and asked for someone to arrange for Mr S to be transferred to a named hospice. The Trust said Mr S was not ready or on the list for the hospice. Mrs S says after all the requests, reminders and assurances about the hospice, she came to realise the Trust had taken Mr S off the waiting list.

16. On 27 December 2019, Mr S’s prognosis changed from ‘rapidly deteriorating’ the day before to ‘improving’.

17. On 29 December 2019, a consultant said the prognosis was very limited and to refer Mr S to hospice care. Mrs S says there was no discussion or opportunity to discuss Mr S’s transfer to their own home, and she felt the Trust was urging her to put Mr S into a nursing home.

18. On 31 December 2019, Mrs S had a meeting with a doctor regarding the ReSPECT form to discuss why a decision was made without her knowledge or input.

19. On 6 January 2020, a nursing home accepted Mr S and said he could be transferred there the next day. Mrs S asked if someone from the ward could call her when Mr S was due to be transferred, as he would be confused and frightened.

20. Mrs S says nobody called her on 7 January 2020 and, as she walked into the ward, Mr S was already on the trolley for discharge and was screaming Mrs S’s name.

21. Mr S sadly died a few days later.

24. The law says a person needs to make their complaint to us within a year of becoming aware of the problem. We cannot investigate complaints brought to us after one year, unless we consider there is a good reason to do so. We have discussed this with Mrs S to understand the reasons why she could not make the complaint earlier. We have also considered the time the Trust took to respond to Mrs S (local resolution).

25. Mrs S’s complaint has many parts, with different dates by when she was aware of the respective problem. The earliest date of knowledge is in December 2019 and the latest is in February 2020. Mrs S should have brought a complaint to us by December 2020 for some components and by February 2021 at the latest.

26. Mrs S sent the complaint to us on 11 October 2021, so all parts of Mrs S’s complaint are outside our 12-month time limit by a minimum of eight months and a maximum of ten months. We considered Mrs S’s reasons for her complaint being lodged after the time limit expired.

December 2019 and January 2020 to November 2020

27. Mrs S became aware of all the issues she is complaining about between December 2019 and February 2020, but did not complain to the Trust until November 2020. Mrs S said she was terribly affected immediately after the death of her husband. So much so, she had to get counselling. The sessions began in May 2020 and ended in June 2021.

28. In October 2020, during a GP visit, Mrs S became upset and told the GP the reasons why. Mrs S told the GP she intended to complain about how her husband was treated. She was advised about the Trust’s patient advice and liaison service, and she physically took her complaint to the complaints department in November.

29. Mrs S’s counselling sessions continued for seven months after that.

30. The delay in initiating a complaint can be justified to a degree up until November 2020. After this point, although counselling sessions were ongoing, Mrs S was well enough to complain to the Trust and liaise with them. The remainder of the counselling sessions she was undertaking would not contribute to or account for the delay in bringing the complaint to us.

Time taken for local resolution

31. The local resolution between Mrs S and the Trust took nine months, from 27 November 2020 to 6 August 2021, but the Trust did refer Mrs S to us quite early in the complaints process. It signposted her to us on 12 January 2021 and again on 17 March 2021. This meant Mrs S was aware she could bring her complaint to us if she remained dissatisfied.

32. Mrs S kept going back to the Trust. Mrs S was aware the next step would be to bring the complaint to us. She chose to persist with the Trust, and she went back to go over issues she felt were not being resolved.

33. While Mrs S was entitled to choose to go back to the Trust, and we imply no criticism of her for doing so, we think those disagreements were unlikely to ever be resolved through further correspondence with the Trust. The Trust’s later responses were essentially the same as its previous ones, albeit with a little more detail. The Trust told Mrs S on 12 January 2021 and 17 March 2021 to approach us if she wanted to escalate her complaint. She did not submit the complaint to us until October 2021, two months after the Trust’s final response.

August 2021 to October 2021

34. Another delay occurred from August 2021 to October 2021. Mrs S says she was weighing up her options at this stage. She did contact an advocate on 18 August 2021 but felt she was able to pursue the complaint herself. Towards the end of August 2021, Mrs S contacted us for some assistance with the complaint form and she also contacted the Care Quality Commission (CQC). Mrs S told us in September 2021 she was collating all her evidence and was also in contact with the CQC. At the beginning of October, Mrs S contacted us again to ask further questions about the complaint form. Mrs S then submitted the form a short time later, in October 2021.

35. In this two-month period, there does not seem to have been any barrier to Mrs S submitting the complaint to us sooner. She had contacted an advocate, who could have assisted in the process, but Mrs S chose not to follow that route. Instead, Mrs S decided to continue on her own and, in the meantime, contact another organisation to gauge their interest in the issues.

Conclusion

36. We recognise Mrs S had an extremely difficult time with the death of her husband and the emotional effect of that experience. Mrs S brought her complaint to the Trust between nine and eleven months after she had reason to complain. Mrs S submitted the complaint to us between eight and ten months after expiry of the time limit.

37. Some of the delay in bringing the complaint to us is understandable, but it can be seen in the correspondence that the Trust did signpost Mrs S to us and told her this would be the next step if she was still not satisfied with the Trust. The complainant kept returning to and liaising with the Trust.

38. Taking all the above into account, we do not think the reasons Mrs S gave us show there was a significant barrier to her complaining to us sooner. There is clear information on our website about our time limits. We do not think the reasons Mrs S provided are sufficient for us to set aside the time limit.

39. We will not consider the complaint further. We appreciate this decision will not be what Mrs S was hoping for.

40. We were very sorry to hear about how upset Mrs S has been. It is clear it has been a very difficult period for her, and we understand how much this complaint means to her. We hope this statement clearly explains the reasons why we will not be considering the complaint further.

1. We have carefully considered Mrs S’s complaint about North West Anglia NHS Foundation Trust (the Trust). We have decided the complaint falls outside our 12-month time limit.

2. After considering the relevant information, we have seen the complaint falls outside of our 12-month time limit. We recognise Mrs S was trying to resolve the complaint with the Trust, but we do not think it led the complaint to fall outside our time limit.

3. We consider the reasons Mrs S gave for the time taken to bring her complaint, and for it being outside our time limit, to be insufficient for us to set aside our time limit. For this reason, we will not consider the complaint further.

4. We appreciate the time Mrs S committed to making this complaint and recognise this decision will be disappointing. We explain in this statement the reasons for our decision.