Summary: Ms X complains about a lack of care and support provided to her late sister, Ms Y. Ms X says this enabled Ms Y to ingest items she should not have had access to, and that a serious incident report did not answer some of her questions about what happened. We found that Ms X’s questions about Ms Y’s medication could have been answered in more detail, and that not doing so prolonged Ms X’s distress. Livewell Southwest has agreed to apologise to Ms X for this. Livewell Southwest and the Council have taken reasonable steps to remedy the other failings they have already identified.

The complaint

1. Ms X complains about a lack of care and support provided to her late sister, Ms Y, who had learning disabilities and lived in private accommodation with 24-hour care. She says the lack of care and proper checks enabled Ms Y to ingest items she should not have had access to. She also complains Ms Y was not supported to attend medical appointments, and carers did not communicate with her appropriately when trying to establish what was wrong. She also says Ms Y’s medication should not have been changed and she has not been given reasons for why this happened.
2. Ms X says that had her sister been properly supported and monitored, she might have received better care and interventions. She says she has been left with a lot of unanswered questions about her sister’s death, and this continues to be very difficult for her.

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The Ombudsmen’s role and powers

3. The Ombudsmen investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, the Ombudsmen consider whether it has caused injustice or hardship (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1), as amended).
4. If it has, they may suggest a remedy. Our recommendations might include asking the organisation to apologise or to pay a financial remedy, for example, for inconvenience or worry caused.  We might also recommend the organisation takes action to stop the same mistakes happening again.
5. If the Ombudsmen are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, they can complete their investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)

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How I considered this complaint

6. In considering this complaint, I spoke to Ms X and read the information she sent us. I wrote to the Council and Livewell Southwest to tell them what I intended to investigate, and to request copies of relevant records. I considered the comments and documents they sent. I considered the relevant guidance and legislation. I also took advice from a consultant psychiatrist.
7. Ms X, the Council and Livewell Southwest had an opportunity to comment on my draft decision. I have taken their comments into account when making a final decision.

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Background information

8. Ms Y lived in private accommodation with full time support from carers, funded by the Council. Ms Y had learning disabilities, autism, anxiety and obsessive compulsive disorder (OCD). As well as support from carers, Ms Y also received support from a Community Learning Disabilities Team (CLDT). The CLDT includes both health and social care practitioners, and is managed by Livewell Southwest. The CLDT is described as “improving outcomes for people who have a learning disability… a specialised service that supports people with multiple, often complex, health needs.”
9. In June 2018, Ms Y was seen by a psychiatrist from the CLDT. One of the medications that she had been taking (aripiprazole, a type of antipsychotic) was stopped. In September 2018, Ms Y’s care team contacted her GP practice with concerns that Ms Y’s behaviour had deteriorated. Ms Y had an appointment with a GP, and aripiprazole was re-started.
10. In February 2019, Ms Y’s carers contacted the Positive Behaviour Support (PBS) team (part of the CLDT) to report concerns about Ms Y’s deteriorating behaviour and increased ripping of items. The PBS team was to offer Ms Y, along with her carers, an appointment for one month later, but Ms Y and her care team did not attend. A further appointment was offered for 1 April, which the care team attended. It is documented in the clinic letter following the meeting, that the care team said Ms Y’s behaviour of ripping items had increased, and she had started to break glass and cup handles and hide them in her bed. They said the risk of Ms Y harming herself was low, and that changes to her care team were the reason for her worsening behaviour. It was documented that the care team asked for a new care plan to manage Ms Y’s behaviours and anxiety.
11. The plan was that the meeting minutes would be typed and sent to the care provider management team, and to arrange another clinic appointment “as it was felt it was important to have management sign up for the care plan”. Sadly, Ms Y died in April 2019, before these actions could be put into place. The cause of Ms Y’s death was given as peritonitis due to swallowing plastic.
12. In June 2019, Livewell Southwest completed a Serious Incident Review (SIR). It recommended improvements to record keeping and communication with GP practices. The SIR and complaint response said there was no history of Ms Y ingesting items. In October 2019, Ms X met with Livewell Southwest to discuss the findings of the SIR. She also complained to Livewell Southwest and the Council. However, Ms X was dissatisfied with their responses and complained to the Ombudsmen.

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What I found

Guidance and standards

Fundamental Standards of Care

13. The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 set out the fundamental standards those registered to provide care services must achieve. The Care Quality Commission (CQC) has issued guidance on how to meet the fundamental standards which care must never fall below.
14. This includes guidance that providers should make sure that people using a service have care or treatment that is personalised specifically for them (Regulation 9: Person-centred care). Providers must work in partnership with the person, make any reasonable adjustments and provide support to help them understand and make informed decisions about their care. Information should be provided in a way the person understands (Regulation 9(3)(c)).

NICE Guideline 11

15. The National Institute for Health and Care Excellence (NICE) has produced a guideline on Challenging Behaviour and Learning Disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges (NICE Guideline 11, May 2015).

STOMP Learning Disability guidelines

16. STOMP (Stop overmedicating people with learning disability, autism or both with psychotropic medicines) is a national project involving many different organisations which are helping to stop the overuse of psychotropic medications. This is a type of medication which affect how the brain works. Information from STOMP says people with a learning disability, autism or both, are more likely to be given these medicines than other people.

Mental Capacity Act

17. The Mental Capacity Act 2005 (the MCA) applies to people who may lack mental capacity to make certain decisions. Section 42 of the MCA provides for a Code of Practice (the Code) which sets out steps organisations should take when considering whether someone lacks mental capacity.
18. Both the MCA and the Code start by presuming individuals have capacity unless there is proof to the contrary. The Code says all practicable steps should be taken to support individuals to make their own decisions before concluding someone lacks capacity. The Code says people who make unwise decisions should not automatically be treated as not being able to make decisions. Someone can have capacity and still make unwise decisions.
19. The Code says, at paragraph 2.11, there may be cause for concern if somebody repeatedly makes unwise decisions exposing them to significant risk of harm or exploitation. The Code says this may not necessarily mean the person lacks capacity but further investigation may be required.

Best Interest Decisions

20. A key principle of the Mental Capacity Act 2005 is that any act done for, or any decision made on behalf of a person who lacks capacity must be done, or made, in that person’s best interests. Section 4 of the Act provides a checklist of steps that decision-makers must follow to determine what is in a person’s best interests. The decision-maker must also consider if there is a less restrictive option available that can achieve the same outcome
21. As Ms X has raised several different issues within her complaint, I have organised these under separate headings, below.

Care and support/checks on Ms Y

22. Ms X complained there was a lack of support and proper checks on Ms Y. In the Serious Incident Review, Livewell Southwest said that Ms Y was supervised by a member of the care team during the day, and had a sleep-in carer at night. The records I have seen support this response, and this was in line with the information in Ms Y’s care plan, which says she required 24 hour support to maintain and monitor her safety and wellbeing.
23. As noted above, on 1 April Ms Y’s care support team met with the PBS and psychology team, and raised concerns that Ms Y’s care plan needed updating. There was a plan for Ms Y’s carers to meet with CLDT management team to agree an updated care and support plan, after the 1 April meeting. However, sadly, Ms Y died before this could be arranged.
24. The Council response to Ms X’s complaint said the care team had no recollection of reporting Ms Y had started to break cups and glasses, and hide them in her bed (as the SIR said). The Council reviewed the records and said Ms Y’s bed was made daily and the sheets changed regularly, and that staff were unaware that Ms Y had ingested non-food items. This Council response reflects the information in the care records I have seen. However, the meeting between the CLDT and the care team on 1 April does refer to Ms Y “breaking glass and cup handles and hiding them in her bed”. I note that when the Council investigated Ms X’s complaint in April 2021, it spoke to the care staff still working there about what happened. The care team could not recollect any concerns about broken glasses and cups. Therefore, I am unable to add any further explanation on this point, based on the information I have seen.

Medication changes

25. Ms X says stopping aripiprazole contributed to the deterioration in Ms Y’s behaviour and agitation, and that she has not had an explanation for why it was stopped. The Serious Incident Review refers to aripiprazole being stopped but does not give details of why this happened.
26. The records indicate that Ms Y had been taking aripiprazole to reduce agitation, but in June 2018, the psychiatrist wrote to Ms Y’s GP Practice to recommend that aripiprazole be stopped. Ms Y continued taking aripiprazole until August 2018. However, it was then re-started in September 2018.
27. Ms Y did not have capacity to consent to changes to medication, so a best interests decision was made, in line with the guidance in paragraph 19, above. The records show the timing of stopping the medication was planned around stability from Ms Y’s team of support staff. This was so that changes would be made when Ms Y’s regular support workers were available.
28. Based on the information I have seen, Ms Y’s treatment was in line with the General Medical Council’s Good Practice guidelines in assessing and treating her condition. In the clinic letters from the psychiatrist, there is a clear rationale for stopping aripiprazole. It was identified that Ms Y’s anxiety levels were resulting from changes in her care team, which is often seen in people with learning disability and autism spectrum disorder. However, as it was expected that Ms Y would have a stable care team from May 2018 onwards, it was decided to stop her aripiprazole at that point.
29. The records indicate aripiprazole was restarted by Ms Y’s GP in September 2018, following discussions with her carers. She had received her last prescription for it in June and therefore, Ms Y was off the medication for approximately four weeks. In the SIR, Livewell Southwest acknowledged that even though it had written to the GP Practice about the medication changes, there was no prompt for the Practice to look at the letter. It took steps to ensure task prompts would be sent to GP Practices when changes were made to medication.
30. Stopping aripiprazole was also in line with the NHS STOMP Learning Disability guidelines (Stop overmedicating people with learning disability, autism or both with psychotropic medicines). Antipsychotic medications are often used to manage behavioural difficulties in patients with learning disability and autism, although they are not licensed for this. It was documented that changes to the staff team could cause anxiety to Ms Y, and the records show this was taken into account in terms of planning changes to her medication. The reasons for doing so are clearly documented and are in line with the relevant guidance. Therefore, based on the information I have seen, there was no fault by Livewell Southwest in the decision to stop Ms Y’s aripiprazole.

Medical appointments

31. Ms X was concerned that Ms Y missed medical appointments, even though she should have had support to attend them. She said that although the Serious Incident Report referred to the missed appointments, it did not explain why this happened.
32. Ms Y had a supported risk plan in place, which stated she did not have the capacity to make and attend medical appointments herself, and that she would need support from carers to attend every appointment. There was also a medical file which was to be kept up to date and appointments communicated to staff so none were missed.
33. The care and support records indicate Ms Y had an appointment with the practice nurse at her GP Practice in early March 2019, but did not attend as she was unwell. The appointment was rescheduled for two days later. This is set out in the Council response to the complaint, which reflects the information in the records.
34. In February 2019, Ms Y was referred to the PBS team because of concerns raised by her carers about her increased ripping of items. The records show the PBS and psychology team scheduled an appointment for Ms Y for one month later in March, but Ms Y and her carers did not attend this appointment. The Council said the care team had checked the diary, daily records, and emails to the manager, but there was no record of an appointment letter or email within their records. It is not clear from the information I have seen, how the appointment was sent to Ms Y, and I have not seen anything to indicate whether the appointment was not sent or not received. Therefore, I am unable to add any further explanation of why Ms Y missed this appointment.
35. The PBS team rescheduled the meeting for 1 April 2019. In the meantime, the PBS and psychology team liaised with the occupational therapist for a sensory assessment of Ms Y’s behaviours around ripping things. Ms Y’s care team attended the 1 April appointment. It was decided that the carers would work with the management of the CLDT service, to help the team manage Ms Y’s behaviours better. This was appropriate, and is accepted practice with PBS teams. This is a model of care to help the care team understand the function of behaviours, and try and manage them better, and care teams often attend consultation appointments to describe behaviours and agree an assessment plan going forward. This is in line with the national guidance referred to in paragraph 11 (NICE Guideline on Challenging behaviour and learning disabilities).
36. In its response to Ms X’s complaint, Livewell Southwest said it did not take any other action after Ms Y missed the March appointment, because she had missed only one appointment. Livewell Southwest said that if a there had been “a pattern of missed appointments”, this would have been escalated. Timeframes for rescheduling such appointments vary between organisations. However, it is good practice for the person and/or their care team to be seen within four to six weeks after the cancellation. This is what happened in Ms Y’s case, as the appointment was rescheduled for 1 April, when the care team attended. Based on the available information, I have not found any fault with the way Ms Y’s appointments were handled.

Communication with Ms Y

37. Ms X said Ms Y’s carers did not communicate with her appropriately when trying to establish what was wrong. Ms X said Ms Y was asked if she was “self-harming”, and said she would not have understood the language used. Ms X said Ms Y would not have recognised this phrase could have meant swallowing inedible items.
38. The relevant guidance is the CQC Fundamental Standards Regulation 10, person-centred care. This states that information must be provided in a way the person being cared for can understand. Ms Y had a communication passport. This is a document which set out how Ms Y communicated with others, and how others should communicate with her.
39. The communication passport states it was important for people to use short sentences and key words when communicating with Ms Y. I recognise Ms X would be best placed to say whether Ms Y would have understood the phrase “self-harm”. In its response to Ms X’s complaint, the Council said Ms Y’s care team agreed Ms Y would have found a question about self-harm difficult to understand and answer. Therefore, it is reasonable to conclude Ms Y would have found this phrase difficult to understand.
40. The SIR said that Ms Y was asked if she used ripped items “to self-harm or hurt herself”. However, the SIR also noted this conversation had not been recorded in the electronic patient record, and I could not see any record of Ms Y being specifically asked about “self-harm” in the care logs provided. The Council’s response also said it was not clear who asked Ms Y the question about self-harm. I recognise that this information not being documented in the electronic patient record left Ms X with questions about what was said to Ms Y. The SIR recommended improvements to ensure information was added to the electronic system in a timely way. I found this was a reasonable remedy to this part of the complaint.

Summary

41. I recognise that Ms X had unanswered questions about what happened leading up to Ms Y’s death. Livewell Southwest could have responded to Ms X’s questions about Ms Y’s medication in more detail. This may have prevented some of the distress Ms X experienced in not knowing what happened. Regarding Ms X’s concerns about Ms Y’s care and support, appointments, and communication, my view is the Council and Livewell Southwest have provided a reasonable response on these points. Through the Serious Incident Review, Livewell Southwest has taken appropriate steps to remedy the failings it identified in recording information in the electronic patient record, and ensuring prompts are sent to GP practices when medication is changed.

Agreed actions

42. Within one month of my final decision on this complaint, Livewell Southwest will apologise to Ms X for distress caused by the lack of explanation about Ms Y’s medication changes.

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Final decision

43. I found fault with Livewell Southwest as it did not provide a reasonable explanation to Ms X about medication. I am satisfied an apology from Livewell Southwest to Ms X represents a reasonable remedy for the injustice caused to Ms X by the lack of explanation.
44. I am satisfied the actions the Council and Livewell Southwest have already taken through the SIR are a reasonable remedy for the failings they had already identified around record keeping and communication.
45. I have now completed my investigation on this basis.

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Investigator's decision on behalf of the Ombudsman