East Cheshire NHS Trust

4. Mrs X complains about the care given to her daughter, Y, by the Trust. She also complains about the Trust’s treatment of her as a parent. She says, • in 2023 Y was not provided the correct amount of physiotherapy (PT) and occupational therapy (OT) appointments according to her Educational Healthcare Plan (EHCP) and any appointments were inadequate for her needs • the Trust incorrectly applied its Violence Reduction and Prevention Policy when it issued Mrs X a verbal warning about her behaviour in November 2023 • Mrs X stopped receiving Y’s Speech and Language Therapy reports and information about her appointments after November 2023 • Mr X received contrasting appointment reports from Y’s Speech and Language Therapist on the 8 December 2023 containing different recommendations for Y’s ACE referral.

• the Trust failed to refer Y to the ACE centre despite her being eligible for referral between 2023 and 2024 • Y’s Speech and Language Therapy provision (SALT) was incorrectly removed in April 2024.

5. Mrs X told us Y is now weaker because her therapy appointments did not meet her needs. Y also experiences problems with her bowels and must take medication for this.

6. Mrs X told us she feels her behaviour was not violent. The behaviour warning she received made her feel paranoid and introverted. Mrs X was too scared to speak to any of Y’s specialists in case she upset someone.

7. Mrs X told us when she stopped receiving Y’s reports, she felt excluded from her daughter’s care. Mrs X said the contrasting reports her husband received added to the feelings of demoralisation.

8. Mrs X told us Y did not have adequate support through her GCSE’s and began to fall behind. Y struggled with complex words and would tire in the afternoons which meant exam scribes could not understand her. This affected her performance in her exams.

9. As an outcome Mrs X would like an acknowledgement of the Trusts failings and an apology for its actions.

10. Y has bilateral predominantly left sided upper limb and bilateral lower limb spastic dystonic cerebral palsy. This means she needs assistance with her speech and communication. Y had an Educational Health Care Plan (EHCP) in place that specified the type of support she needed from the Trust. Y was under the care of Speech and Language Therapy (SALT). Y was visited at her school by a Speech and Language Therapist (the Therapist) from the Trust once every half term.

11. The Therapist helped Y use Augmentative Alternative Communication (AAC). AAC refers to tools and strategies that help or replace speaking for individuals who struggle to communicate. This could be gestures, sign language or picture boards. Assistive technology (AT) is a particular type of AAC. AT refers to technological devices and software’s that help with communication. Y used a type of AT called proloquo2go, an app with buttons with words installed on Y’s iPad.

12. The ACE center is a service local to Y. The ACE center specializes in AAC and AT and can provide more support than an NHS Trust is able to. Children must be referred to the ACE center by healthcare practitioners.

Issue 1- In 2023 Y was not provided the correct amount of PT and OT appointments according to her EHCP and any appointments were inadequate for her needs.

17. 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 X to understand the reasons why she could bring her complaint to us within our time limit.

18. On 22 May 2023 Mrs X wrote to the Trust to complain about the OT and PT provided to Y. In this complaint, Mrs X claimed, • the communication was poor, • Y did not receive the right number of appointments, • and the appointments Y had were inadequate for her needs.

19. We consider the latest date Mrs X knew she had reason to complain to the Trust was 22 May 2023.

20. For this to be within our time limit, Mrs X needed to bring her complaint to us by 22 May 2024. Mrs X brought her complaint to us on 15 April 2025, 11 months outside of our time limit.

21. Mrs X complained to the Trust about this issue in May 2023. The Trust responded to her complaint by July 2023, approximately two months after she made the complaint. As the time the Trust took to respond to Mrs X’s complaint was outside of her control, we will put this time aside.

22. Mrs X formally complained to the Trust about the same issues nine months later in April 2024. We asked Mrs X why she delayed putting in a formal complaint between July 2023 and April 2024.

23. Mrs X agreed the issues were resolved by the Trust in July 2023. Mrs X said the reason she complained about the issue again in April 2024 was because new impacts came to light. She told us Y began to have problems with her digestive system, caused by PT’s not moving her. Y had started medication for this.

24. From Y’s medical records we can see she started medication to help with her digestion in June 2023. We therefore do not see sufficient reason to put this nine-month delay aside.

25. The Trust responded to Mrs X’s formal complaint on 15 August 2024, four months after she made her complaint. We will put this time aside as the time the Trust took to respond was outside of her control.

26. On 15 August 2024 the Trust sent its first response to Mrs X. It admitted there had been a missing appointment between January 2023 and March 2023. The Trusts response said if Mrs X needed any further assistance after reading the letter she could call the customer care officer. The letter made no reference to us. We consider it was appropriate for Mrs X to return to the Trust with her remaining questions.

27. Mrs X delayed her response to the Trust until 1 October 2024. We asked Mrs X to tell us her reasons for this. Mrs X explained she became unwell in June 2024. Mrs X went blind in one eye at this time. Mrs X had several MRI scans on her spine and brain and multiple blood tests. Neurologists told Mrs X to not stress herself out with anything as it could make her symptoms worse. From about August 2024, Mrs X began treatment and started to feel better over the next few months. Mrs X was eventually diagnosed with MS in November 2024.

28. It was reasonable for Mrs X to not respond to the Trusts response between August 2024 and October 2024. Under medical advice, Mrs X could not go through a stressful complaint process. We consider it was reasonable that Mrs X took two months adjusting to her new medication before re-engaging in the complaint process in October 2024.

29. Mrs X chased the Trust for a response. When Mrs X did not get a response, she came to us on 6 February 2025. The Trust then issued its final response on 6 March 2025. We consider Mrs X made efforts to get the Trusts final response. We also consider Mrs X made efforts to come to us within the expected time limit. For this reason, we can put the time taken for local resolution between April 2024 and February 2025 aside.

30. We consider this part of Mrs X’s complaint part is out of time. We have not seen sufficient reason to waive the time limit. While we can put aside the delays in the Trusts complaint process, we cannot put aside Mrs X’s delay in making a formal complaint between July 2023 and April 2024. We consider this nine-month delay was not reasonable. For this reason, we will not be taking any further action on this part of her complaint.

Issue 2 – The Trust incorrectly applied its Violence Reduction and Prevention Policy when it issued Mrs X a verbal warning about her behaviour in November 2023

31. Mrs X told us the Trust did not provide appropriate evidence to give her a behaviour warning on 2 November 2023. Mrs X told us she was advocating for her daughter to get an ACE referral from the Trust. She believes the Trust went looking for evidence to give her a warning.

32. We asked the Trust what happened. The Trust told us Mrs X’s communication over the previous years had upset staff. The Trust said the most recent issues had been direct emails to Y’s therapist, (the Therapist) and an unreasonably long phone call.

33. The Therapist felt Mrs X’s demands were unreasonable and she was being contacted at an unreasonable level. The Therapist was upset by this behaviour. This prompted the manager of the department (the Manager) to send a letter to Mr and Mrs X to arrange a meeting for 12 October 2023. The meeting was to discuss the parents’ communication. Mr and Mrs X explained they could not make the meeting due to work commitments.

34. The Manager sent a follow up letter on 19 October 2023 which gave more information on the communication causing concern. The Trust explained Mrs X’s written communication often used upper case which had a demanding tone. It said Mrs X’s emails were too frequent and filled the departments inbox and the Therapists inbox without giving time for them to answer. The Manager said there was a fifty-minute-long phone call between Mrs X and the Therapist, this meant the Therapist had ten minutes left for Y’s appointment. We can see from the Trust records, this phone call on was on 22 September 2023 and lasted 45 minutes.

35. The letter said in future, all emails should be to the department inbox instead of directly to the Therapist. It stated if any further instances happened, it would be escalated in line with the Trusts Violence Reduction and Prevention Policy (the Behaviour Policy). Mrs X would then be issued a formal written warning. The Trust asked Mrs X to email with her availability to arrange an in-person meeting.

36. On 2 November 2023, Mrs X attended a meeting at the Trust. Mrs X told us the Manager brought HR files from a physiotherapist who had left the Trust to the meeting. The Manager claimed Mrs X’s behaviour was the reason this physiotherapist left. The Manager also accessed private emails between Mrs X and the Therapist. The Manager said in these emails, Mrs X used capital letters and a demanding tone.

37. After the meeting the Trust sent Mrs X a letter to say it agreed to draw a line under everything and move forward in a positive way. The Trust said it would pass on Mr and Mrs X’s apologies to the Therapist. It agreed no emails should be sent directly to the Therapist, and only to the department inbox. The Trust made no mention of a warning being given.

38. In the Trust’s first complaint response dated 15 August 2024, it explained the 2 November meeting was planned in line with the Behaviour Policy. The Trust said the meeting was a Level 1 verbal warning. It said if any further instances occurred it would progress to the next stage of the policy.

39. The Trust’s final complaint response dated 6 March 2025 stated the purpose of the meeting on 2 November 2023 was to prevent further escalation of the situation. It said the Behaviour Policy had not been enacted.

40. The purpose of the Trust’s Behaviour Policy is to maintain a safe and secure environment for its workforce that ensures its staffs health, safety and welfare is maintained. It uses the Health and Safety Executive’s (1999) definition of aggression, stating it is, ‘any behaviour that is perceived by the victim as being deliberately harmful or damaging either psychologically or physically.’

41. The Behaviour Policy states there are several situations that a staff member may have to deal with. It states sometimes the behaviour is non-physical, but still challenging or unacceptable, and can occur through written communications, emails and phone calls.

42. The first intervention described in the policy is a verbal warning. The purpose of this is to ensure the patient, relative or visitor is made aware their conduct is unacceptable. The person should be made aware of the consequences of further unacceptable behaviour.

43. We can see the Therapist was upset by the unreasonable demands and levels of contact from Mrs X. We do appreciate Mrs X felt she was advocating for Y. As aggression is defined by how it is perceived by the victim, in this case the Therapist, we cannot comment on the appropriateness of Mrs X’s actions.

44. The Behaviour Policy defines unacceptable behaviour can be through emails and phone calls, so we can see it covers the issues the Trust raised. We can see the phone call and emails were appropriate evidence in line with the Trusts Behaviour Policy. The Trust acted in line with its Behaviour Policy by evidencing the behaviours, and agreeing emails should be sent to the department inbox in future.

45. We can see the language the Trust used in its two complaint responses could have been misleading to Mrs X. In the first complaint response, it said a Level 1 verbal warning was given. In its second response, the Trust said the Behaviour policy had not been enacted.

46. We can see the Trust did the first step on their Behaviour Policy, which was to tell Mrs X about the behaviour it found unacceptable and inform her of the consequences of it continuing. The purpose of this was to prevent further escalation of the situation, again in line with its Behaviour Policy.

47. When the Trust stated in its final response it hadn’t enacted the Behaviour Policy, this referred to the fact it hadn’t taken any formal action or placed any restrictions in place.

48. In summary, we can see the Trust acted in line with guidance when it addressed Mrs X’s behaviour.

Issue 3 - Mr X received contrasting appointment reports from Y’s Speech and Language Therapist on the 8 December 2023 containing different recommendations for Y’s ACE referral.

49. On 8 December 2023, Mr and Mrs X received Y’s school reports from the Trust. Mrs X complains both school reports gave different recommendations for Y’s ACE referral. Mrs X explained this made her feel demoralised. She sent us copies of these school reports to review.

50. We can see one school report talks about the work Y’s therapist did with her on her breath support and volume. The report also mentions Y’s use of Proloquo2go and how it had been adapted to help Y’s communication. The second school report focused on Y’s suitability for AAC. The report summarised the meanings of AT and AAC. It concluded by explaining some new methods of AAC that Y could use to aid her communication. The report stated the Trust could not refer Y to the local ACE centre.

51. We can appreciate the report stating Y would not be referred to the ACE centre would have been demoralising. We can see the SALT reports were for different purposes and did not contain different recommendations for ACE referrals for Y. We find no indications of failings in this part of the complaint.

Issue 4 - Mrs X stopped receiving correspondence of Y’s SALT reports and appointments after November 2023.

52. Mrs X told us she stopped receiving copies of Y’s SALT reports and appointments after the behaviour meeting on 2 November 2023. Mrs X believes the Therapist was told not to communicate with her after this meeting. Mrs X told us no one had a conversation with her to tell her this would happen. Mrs X explained this made her feel excluded from her daughter’s care.

53. We spoke to the Trust about what happened. It told us the Therapist supported Y from a very young age. For years, the Therapist always sent write ups of Y’s SALT appointments to her parents. The Therapist found this worked well to maintain a good relationship with Mr and Mrs X.

54. We looked at the Trusts email records to see whether there was a change in communication after November 2023. After careful review of the documentation, we can see the communication changed after 2 November 2023. We can see no SALT reports were sent to Mrs X’s email address after this date.

55. On 15 February 2024, Mr X asked the Therapist to send the reports to Mrs X. The Therapist replied to this email and said her manager had told her to only send emails to Mr X. The Therapist said they thought this had been agreed in the behaviour meeting. The Therapist said they would check this with their manager when they returned from leave. We can see after this date, the emails were still not sent to Mr X.

56. We asked the Trust about this. The Trust said it was not aware the Therapist changed her communication. The Trust said the Therapist had been sending this report for years. The Trust said this was not done for any other family. The Trust told us it had no communication standards to say what the Therapist should or should not send to Mrs X. The Trust told us it should have had a conversation with Mrs X to explain why communication was changing.

57. Our Principles of Good Administration say, public bodies should do what they say they are going to. If they make a commitment to do something, they should keep to it or explain why they cannot.

58. We can see the Trust changed its communication in November 2023 and stopped correspondence to Mrs X. There is no evidence of Mrs X being told this change was going to happen or why. The Therapist told Mr X they were going to check with their manager and let him know if reports could be sent to Mrs X. We have not seen any evidence this happened either. We have seen an indication the Trust did not follow up on their commitment or explain why it could not.

Issue 5 - The Trust refused to refer Y to the ACE centre despite her being eligible for referral between 2023 and 2024.

59. Mrs X told us Y has had an EHCP since she was about three years old and this has always said she will need to be referred to the ACE centre at some stage. As Y’s GCSE’s approached, Mrs X became aware of the pressing need for specialist input as the AAC offered by the Trust was not meeting Y’s needs. At the end of 2023, Mrs X began pushing the Trust for an ACE referral. Y began to fall behind at school because she was struggling to speak. Y also got lower marks in her exams because scribes could not understand what Y was saying.

60. We can see from email records, the Trust told Mrs X on 13 December 2024 it would not be referring Y to the ACE centre because it did not feel she met the eligibility criteria. Y was discharged from the Trust on 18 April 2024 without having an ACE centre referral.

61. The Trust’s complaint response says Y was referred to the ACE centre in September 2023 but she was declined. Mrs X completed a SARS request and was unable to obtain a copy of an ACE centre referral.

62. We contacted the Trust to ask for a copy of the completed referral. The Trust did not provide this. The Trust sent us records of its internal emails. An internal email sent by a manager said the referral sent in September 2023 was to a different service and not the ACE centre.

63. We have considered Mrs X’s evidence and the Trusts evidence. On the balance of probabilities, it is most likely an ACE centre referral was not completed between 2023 and 2024.

64. Y’s medical records for this period show she experienced tiredness when she spoke, which increased in the afternoon. It was a physical effort for Y to speak, and she relied on her communication aid during this time. This tiredness made it hard for Y to communicate, and she could not be understood by listeners, particularly listeners who did not know her.

65. We asked our adviser to explain what should have happened in Y’s care. Our adviser referred to RCSLT guidance. It states, AAC is designed to support conversation and expression, and it can be used to enhance any existing communication skills. It is used when someone’s communication does not do justice to their thoughts and their desired contribution to conversation. It states the start of AAC use is the beginning and not the end of communication intervention. AAC should be a lifelong support mechanism which evolves with the individual’s communication demands and educational contexts.

66. The ACE Referral Guidance says an individual who needs to be referred will have a clear difference between their level of understanding and ability to speak. They also must be able to understand the purpose of a communication aid. They may have experienced using low technology AAC, but this is not enough to reach their full communication potential.

67. We can see from the records Y had low technology AAC support from the Trust in the form of proloquo2go. We can see this was not meeting all of Y’s communication needs. In line with RCSLT guidance the Trust should have considered if specialist input would help further, as AAC is not the end of communication intervention. We can see Y met the criterion laid out in the ACE Referral guidance. We can see an indication of a failing in the Trust not referring Y for a specialist assessment.

Issue 6 – Y’s SALT provision was incorrectly removed in April 2024

68. Mrs X told us Y was under the care of the Trust’s SALT department for communication. Mrs X told us Y’s communication provision was important in helping her pronounce the difficult words she was learning for her GCSE’s. Mrs X told us Y desperately needed this provision as she was coming home from school unable to speak because she had used so much effort trying to communicate in the day.

69. On 16 February 2024 Mrs X was emailed by the Trust and told her daughter’s SALT was going to be removed by the Trust. The rationale for this decision was Y’s communication was stable, and she had made considerable communication progress. On 18 April 2024 Y was discharged from this service.

70. We spoke to one of our clinical advisers about what should have happened in Y’s care. Our advisor explained cerebral palsy is a lifelong condition. They explained a person with this condition is likely to experience ongoing speech and communication challenges, including difficulty controlling muscles around their face, tongue and jaw.

71. Our adviser referred to RCSLT guidance on AAC. This guidance says AAC users should have full access to SALT. This therapy should not be stopped or held back due to the person’s AAC use. RCSLT guidance says SALT should provide therapeutic input for as long as required to develop the person’s language and communication. It says using AAC is not a one-off support but is designed to give life-long support. The guidance says AAC is a lifelong and evolving area of support that needs continued monitoring. SALT should regularly review the user.

72. Our adviser explained according to this guidance Y should have had continual SALT to support her with her AAC use.

73. We have considered what happened in Y’s care and what should have happened. We can see indications of a failing as discharging Y from SALT was not in line with RCSLT guidance.

Impact

74. We have the following indications of failings, the Trust, • stopped sending Mrs X Y’s SALT reports and information about her appointments after November 2023, • failed to refer Y to the ACE centre despite her being eligible for referral between 2023 and 2024, • incorrectly removed Y’s SALT provision in April 2024.

75. Mrs X explained the Trust stopping sending her Y’s SALT reports made her feel excluded and isolated as she stopped being updated on her daughter’s care. We have identified three occasions where the Trust sent SALT reports and appointment information to Mr X and did not include Mrs X. We can see this would have had the impact of Mrs X feeling excluded.

76. As a result of Y not getting a referral for a specialist assessment and being discharged from SALT, Mrs X feels Y did not have adequate support through her GCSE’s and began to fall behind. Y struggled with complex words and would tire in the afternoons which meant her exam scribes could not understand her. This affected her performance in her exams. Mrs X sought external AAC support from another organisation, but this came too late for Y’s GCSEs, and it was not adequate. She says this made Y’s GCSEs considerably more difficult and impacted her grade.

77. Our advisor agreed if Y did not have the right tools to communicate it could have impacted on how well she would do in her GCSEs.

78. We have shared our findings with the Trust. The Trust have told us it would like to issue Mrs X and Y with an acknowledgement of the error and an apology. The Trusts proposal demonstrated understanding, learning and willingness to put complaints right in line with the NHS Complaint Standards and the outcome Mrs X wished to achieve by raising her complaint.

79. We consider the action the Trust has proposed will resolve this complaint for Mrs X and Y. For this reason, we will not be taking further action on this complaint.

Conclusion

80. We can see the significant impact these events have had on Y and her GCSE’s. We do not underestimate how frustrating it must be to not be able to communicate what you want to say. We hope our investigation has suitably acknowledged this.

81. We appreciate the impact these events have had on Mrs X who has had to advocate for Y for the years she was under the Trusts care. We appreciate the outcome on some of Mrs X’s complaints may be disappointing for her.

82. We can see the Trust has had a valuable opportunity to reflect and acknowledge where we have seen indications of failings. For this, we thank Mrs X for bringing this complaint to us.

83. The Trust have agreed to send Mrs X a formal apology. We would like to thank the Trust for its willingness to listen and put right Mrs X’s and Y’s concerns.

1. We have carefully considered Mrs X’s complaint about East Chesire NHS Trust (the Trust). The first part of Mrs X’s complaint falls outside our time limit, and we have not seen sufficient reason to put our time limit aside.

2. We have seen the Trust acted in line with guidance when it applied its Violence Reduction and Prevention Policy. We have seen indications of failings in the Trust not sending SALT reports to Mrs X, not referring Y for specialist assessment and discharging Y from Speech and Language Therapy. The Trust has agreed to Mrs X’s desired outcomes. For this reason, we cannot take further action on the complaint.

3. We realise the difficult experience Mrs X had advocating for her daughter. We also appreciate the distress caused to Y by not having the correct support to help her communicate. Where we have found indications of failings in Y’s care, we hope Mrs X is reassured the Trust has now recognised this. We thank Mrs X and Y for bringing this complaint to us.