Summary: The care provider delayed in notifying Mrs X’s family of her condition in a timely manner. The delay caused considerable distress and lost the family the opportunity to be with their mother at the end of her life: the care provider will make a consolatory payment accordingly. The care provider acknowledges staff did not always make accurate records and will ensure it complies with that requirement in future: there is no evidence that failure of itself caused injustice to Mrs X but it did cause distress to her family for which the care provider has apologised.

The complaint

1. Mr X (as I shall call the complainant) says the care provider did not let the family know his mother Mrs X was nearing the end of her life, nor call them all in sufficient time to see her before she died. He complains about inaccurate care notes. He says his family suffered the distress of not being able to spend her last hours with their mother.

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The Ombudsman’s role and powers

2. We investigate complaints about adult social care providers and decide whether their actions have caused injustice, or could have caused injustice, to the person complaining. I have used the term fault to describe this. (Local Government Act 1974, sections 34B and 34C)
3. If an adult social care provider’s actions have caused injustice, we may suggest a remedy. (Local Government Act 1974, section 34H(4))
4. Under the information sharing agreement between the Local Government and Social Care Ombudsman and the Care Quality Commission (CQC), we will share this decision with CQC.

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How I considered this complaint

5. I considered the information received from Mr X, and from the care provider. I spoke to Mr X. Both Mr X and the care provider had an opportunity to comment on an earlier draft of this statement and I considered their comments before I reached a final decision.

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What I found

Relevant law and guidance

6. The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 set out the fundamental standards that registered care providers must achieve. The Care Quality Commission (CQC) has guidance on how to meet the fundamental standards.
7. Regulation 17 says care providers must maintain an accurate compete and contemporaneous record in respect of every service user.
8. The care provider uses a computer record system on which care staff record their notes which are then translated into formulaic “care stories” by the software, using standard phrases (eg, “Mrs X was content”).

What happened

9. Mrs X became resident in the Willows in 2017. She had dementia and a number of physical conditions. Mr X and his sister Mrs A held power of attorney for her health, welfare and finances.
10. Mrs X’s care plan was updated as required. In 2020 it was updated to record that Mrs X wished to have a DNAR notice put in place: this was agreed by Mr X and Mrs A and signed by the GP and Mr X. Mr X and Ms A said their mother’s wish was to remain in the Willows for end-of-life care.
11. Mrs X became increasingly frail during 2021. She had some hospital investigations in the early part of the year but her family agreed they should not proceed to any further interventions.
12. During the pandemic the family’s visits were limited. In April 2021 the care provider wrote to relatives with updated Government guidance and said residents could nominate two people who could visit from now on. Mr X and Mrs A were the two nominated visitors. The care provider says that before that only one visitor (Mr X) was allowed although video calls from other family members were permitted.
13. On 4 May 2021 Mrs A visited her mother. Mrs X was ill while Mrs A was present.
14. The care provider contacted the GP who carried out a consultation by Facetime on 6 May. The care records note “(the GP) said that he will contact the family to have a discussion about her further care plan”.
15. Mr X says, “During the next couple of days Mrs X ate virtually nothing but was vomiting. On the day Mrs X passed away, 08/05/21 the attending ambulance crew informed Mr X that this was a sure sign she was nearing end of life but Willows had not communicated this to the family”. The care records note Mrs X ate very little but vomited several times over the next two days.
16. The care recording for 8 May notes (03.45) that Mrs X had laboured breathing. The staff member noted Mrs X appeared to be dehydrated and was offered thickened fluid but threw the beaker on the floor. The staff member asked a nurse if they should call an ambulance. The notes state the nurse checked Mrs X at 04.00 and put 30 minutes observations in place: Mrs X was noted to be calm but awake.
17. The care recording continues, “Around 05.50am l noticed that (Mrs X) breathing became Laboured and l sent for the senior nurse on the ground floor for assistance and advice. Senior nurse came around 06:20am, SN decided to check (Mrs X) 's vital signs again but she refused. …The senior nurse said l should continue monitoring (Mrs X) closely and she (SN) was going to call the NHS 111 and informed the family. SN called me on phone that she (SN) informed the NHS 111 doctor about (Mrs X’s) situation and informed the family too.”
18. Mr X says, “Willows were aware that Mrs A lived in Norfolk and Mr X within just 30 minutes drive and had they been notified at this time both of them could have arrived prior to their Mother's death”.
19. The staff member remained with Mrs X who sadly died at 07.20. An ambulance attended at 07.40.
20. Mr X says there are many discrepancies in the notes. He says, “Mrs A was called at 06.33 and left home in Norfolk immediately. There is no explanation why Mr X did not receive a call until 7.07 when he was advised about the laboured breathing, if he had been contacted at the same time as Mrs A he would definitely have been able to be with his Mum before she died. He was informed of her death at 07.36 and Mrs A was called at 07.39. There are far too many discrepancies in all of the information provided by Willows. The times given by Mr X and Mrs A are accurate as they did not delete the calls from their mobile phones and the London Ambulance form must be correct”.

The complaint

21. A few days later Mr X wrote to the care provider. He said he had been called at 07.07 on 6 May to say an ambulance had been called to Mrs X; he had a further call at 07.36 to say she had died. He said when he arrived at the care home the ambulance was still there. He said the paramedic expressed his view that the ambulance had not been called early enough as Mrs X was reported to have been suffering laboured breathing since the early hours: he also said the care staff should have recognised that the vomiting Mrs X had suffered for the last few days was a sign she was nearing the end of her life. Mr X said he was devastated to know that he could have been with Mrs X when she died if called soon enough.
22. Mr X also expressed concerns about the standard of the written care notes: “she certainly could not have been 'chatting a reasonable amount with staff and residents' and having stated 'death confirmed' to write 'on average was content' was extremely inappropriate”.
23. The care provider manager responded. She said the GP had seen Mrs X on 4 May and “took a decision to commence end of life pathway. This involves the GP prescribing anticipatory medicine for administration for symptom control”. She said the ambulance crew were not aware Mrs X had been recently seen by the GP. She also said the ambulance had taken 1 hour and 45 minutes after the 111 call to arrive, as it was not considered an emergency.
24. The manager said she had spoken to Mrs A who had said she was “very happy” with the care Mrs X had received at the Willows.
25. Finally she said that in respect of the allegation of inaccurate care notes, she had previously raised concerns with the software company following Mr X’s earlier complaints. She said the staff did not write the “care stories”, they were generated on the basis of information input by staff.
26. Mr X remained dissatisfied and replied to the manager. He said as the GP had already indicated Mrs X was on an end-of-life pathway, the staff should have called the family immediately when her breathing became laboured: their failure to do so deprived her family of the chance to spend some last time with her. He said staff members were fully aware of Mrs X’s condition as one of them had told her sister of it in a phone call, and he asked why the care home had not informed himself and his sister.
27. Mr X also pointed out that 111 had not been called until 06.51, almost three hours after Mrs X’s laboured breathing had been noted and a staff member had alerted nursing staff.
28. Mrs A also complained to the care provider. She said “The GP failed to inform us that he had placed Mum on an 'End of Life' pathway, yet staff were aware of his decision but didn't tell myself or my brother that the GP had done so. To then find out that my Mum's breathing had become laboured hours before receiving a call telling us that she was deteriorating is, quite frankly, unacceptable - There is every possibility that if we had been contacted earlier we could have been there for Mum to say our final goodbyes. Staff must have been aware that Mum was 'End of Life' but still chose not to contact us to this effect, instead choosing to phone us less than an hour before she passed away.”
29. The manager responded to Mrs A. She said “Due to the anticipated emotional complexity involved with end-of life decisions, this conversation is always between the GP and the family or/and resident.” She added that she had not known the GP had not discussed this with the family until Mr X’s complaint. She also said the staff had not considered death was imminent
30. The manager also responded to Mr X. She said staff had monitored Mrs X’s condition throughout the night after they had first noticed the change in her breathing and her observations had been within a normal range until 05.50 when the ambulance was called. She said it was normal procedure that it was the GP who had the conversation with family about an end-of-life pathway, not the care provider.
31. Mr X complained to the Ombudsman. He said he had not seen Mrs X for three weeks prior to her death because of Covid (Mrs X had been in isolation after a hospital visit) and if he had been called sooner, he would have been able to be with her before she died. He also said the inaccuracies in the home’s records were a “constantly upsetting and frustrating situation that went on for months”.
32. The care provider says “We are currently using Person Centred Software, which is a live system for recording care notes, care plans and any other notes related to any residents. This is a system, which records life information, as imputed by the staff…… (Mr X) and his sister has had access to the Relatives Gateway which allow them to see daily notes in a story type of message. The Relatives Gateway gives an overview of the daily tasks and can change from morning to evening, depending on the activities recorded. It creates a ‘story’ for the day from the care note entries and is not necessarily a chronological reflection of all the care delivery for the day that has been inputted by various team members.”
33. In respect of notifying the family, the care provider says “At around 6.20am call to NHS 111 was made for advice, and the daughter was also called, as well as the manager on call. 1 hour later, the son was called to ensure he was aware that his mother was poorly, and he was not made aware by his sister…. Our policy is to inform families, as soon as we are able to sign and symptoms of deterioration. We felt that on this occasion, the breakdown in communication was between the son and the daughter as they did not inform each other’s. The care home informed the daughter as soon as the NHS 111 call was made.”
34. The care provider's case recording says, " SN called me on phone that she (SN) informed the NHS 111 doctor about (Mrs X’s) situation and informed the family too.” Although that follows some recording from 06.20 when the senior nurse was called to check Mrs X’s vital signs, there is no record of the time of that call and the note does not specify who was called.

Analysis

35. The care provider knew from 6 May of the GP’s view that Mrs X was nearing the end of her life. The care provider’s policy that it should be the GP who discusses that with the family is understandable. However, in this case, a member of staff passed on the news to a member of the wider family on 7 May. Once Mrs X’s condition deteriorated in the early hours of the morning of 8 May, staff should have called the family. In my view the failure to do so in this case was fault on the part of the care provider which denied them the opportunity to visit and so led to significant injustice to Mr X and Mrs A.
36. There is too much discrepancy between the times given for when 111 and the family were called: the care provider’s response to Mr X says 05.50; the notes from staff record sometime after 06.20 or 06.51. In any event, a call should have been made to Mr X and Mrs A earlier in the night to enable them to decide whether to visit (and certainly the first call should have been to Mr X who lived close by, and who was then the most frequent visitor). It is unfair for the care provider to rely on blatantly inaccurate records to say it was the fault of family members that they did not keep each other informed.
37. The recording system used by the care provider is a live system which can be updated during the day. That is not always helpful for relatives trying to gain a picture of their relative’s day. Moreover, like any record-keeping system it relies on accurate information being submitted by staff which the care provider acknowledges has not always been the case.

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Agreed action

38. Within one month of my final decision the care provider will apologise formally to Mr X and Mrs A for its delay in notifying them of the deterioration of their mother’s condition;
39. Within one month of my final decision the care provider will make a payment to each of Mr X and Mrs A of £1000 in recognition of the significant distress its actions caused them;
40. Within three months of my final decision the care provider will carry out a review of the way it uses its recording system to ensure accuracy and timeliness and let me have details of the review’s outcome.

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Final decision

41. There was an unnecessary delay in calling relatives and poor record keeping on the part of the home: those failings caused distress to Mr X and Mrs A. I find there was fault on the actions of the care provider which caused injustice to Mr X and Mrs A.

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Investigator's decision on behalf of the Ombudsman