The Walton Centre NHS Foundation Trust

4. Mrs A represents her husband, Mr A, in making his complaint about the care and treatment provided to him by the Trust. He specifically complains:

• since November 2022 there has been a lack of contact from the Trust’s Multiple Sclerosis (MS) Nurses • the Trust has not arranged a sufficient number of appointments with the consultant neurologist since July 2024 • its Consultant Neurologist did not explain in their clinical letter - following his magnetic resonance imaging (MRI) scan in August 2024 - about the significance of the ‘increased prominence’ of the lesions at the base of his brainstem and how this may impact his ongoing quality of life • the Trust reduced his Botox appointments following his September 2024 complaint • did not fully respond to his complaint.

5. Mr A says the lack of contact from MS nurses has resulted in a significant deterioration of his MS symptoms.

6. He explains the lack of explanation within the consultant’s letter and lack of appointments has caused a detrimental effect on his mental health and feels like the consultant does not care about his condition.

7. Mr A believes the lack of Botox appointments may have caused a reduction in his mobility.

8. Mr A would like service improvements to minimise the risk of this happening to anyone else and full and detailed explanation of the results of the August MRI scan and potential implications for him.

Lesions at the base of the brainstem

14. Mr A complains the Trust did not explain the significance of the increased prominence of the lesions at the base of the brainstem following his magnetic resonance imaging (MRI) scan in August 2024, and how this may impact his ongoing quality of life.

15. The Trust apologised the letter was not clear and for not explaining it more thoroughly.

16. The relevant guidance is the GMC: Good medical practice. This says doctors ‘must give patients the information they want or need in a way they can understand.’

17. By way of background, our adviser said there are two different types of pathology that a patient with multiple sclerosis (MS) will experience:

• Inflammation, causing new areas of damage, visible as new lesions on an MRI scan. Inflammation can be treated with disease modifying medication, which reduce the chances of new lesions forming.

• Degeneration of nerves. This is not treatable with medication, and it does not show up on a scan.

18. The purpose of the scan is to identify if there are any new lesions, and therefore if there is any inflammation that can be usefully treated with disease modifying medication.

19. The Trust carried out an MRI scan in early August 2024. The scan report said:

‘there is extensive demyelination change in the left midbrain at the level of the trigeminal nerve is certainly much more prominent than it was on imaging for August 2022. I do not see any other change. No other change.’

20. Our adviser said this report is hard to understand. This is because the phrase ‘much more prominent’ carries no meaning in the context of MS lesions.

21. The Trust’s Consultant Neurologist summarised the scan results in a brief letter to Mr A, in early September 2024 saying:

‘the MRI scan of your head came back reported as showing the same number of lesions. There is a comment that the lesions around the brainstem look more prominent….However, the disease seems to be inactive for the past two years.’

22. Our adviser said it was good the consultant explained to Mr A that the lack of new lesions meant his MS has been ‘inactive’. However, it was confusing for Mr A that they referred to the lesions in the brainstem looking more prominent. Our adviser said in most cases a patient would not know what to make of that explanation. The consultant’s explanation within the clinical letter is not in line with section 28 of the GMC: Good medical practice. This is an indication of a failing.

23. Having seen indications of failings, we next looked at whether this had a negative impact on Mr A, and, if so, whether the Trust has put things right. We do not normally progress a complaint to detailed investigation where we think appropriate action has been taken to put things right or if we cannot link the impact to the failing.

24. Mr A explains the lack of explanation within the consultant’s letter - following the August 2024 MRI scan - caused a detrimental effect to his mental health and he feels like the consultant does not care about his condition.

25. We recognise the lack of explanation within the consultant’s clinical letter would have caused Mr A distress at an already difficult time.

26. The consultant acknowledged within the November 2024 Trust’s letter that they should have explained this more clearly and apologised for this.

27. The consultant explained that the use of disease modifying treatments requires evidence of active lesions on scans. They reported that ‘following review of Mr A’s scans from 2021, 2022 and 2024 there is no activity on the scans that would require discussion at the MDT to consider disease modifying treatment. He acknowledged that [Mr A] had ongoing symptoms from MS, but MS specific treatment is decided by activity on scans.’

28. Our adviser said the Trust’s November letter provides a good and appropriate explanation of the August MRI findings, in line with GMC guidance.

29. We consider the above actions are in line with our Principles for Remedy, which say what organisations should do to put things right when they go wrong.

Appointments

30. Mr A complains there was a lack of appointments with the consultant since July 2024.

31. The Trust said in its March 2025 complaint response, that the consultant saw Mr A in early February 2024 and the outcome was a follow up appointment in a year. This was arranged for early April 2025. It explained the neurologist had reviewed Mr A frequently since March 2023 for Botox treatment.

32. The relevant guidance is NICE [NG220]: Multiple sclerosis in adults: management, published. Section 1.2.4 explains that people with MS ‘should have a comprehensive review of their care at least once a year.’ This review can be carried out by any healthcare professional in MS.

33. Our adviser says this means this can be carried out, for example, by an MS nurse, occupational therapist (OT), physiotherapist (PT) or neurologist who are specialised in this field.

34. The medical records show that Mr A saw the neurologist for a review in early February 2024 and then in late March 2025. Our adviser said that although this is slightly over the 12 months (by one month) as recommended in the NICE guidance, it is not so far outside the guidance to mean a significant delay. Furthermore, since July 2024, Mr A was reviewed by an MS nurse, OT, PT, and a neuropsychologist – within 12 months, in line with NICE guidance.

35. In line with NICE guidance, our adviser says there is no evidence within the medical notes that show a consultant neurologist should have arranged more appointments to see Mr A. The number of appointments he had during this period were in line with the above guidance.

36. We recognise Mr A’s concerns on whether there should have been more appointments with the consultant since July 2024. We have carefully considered all the relevant evidence. We consider the number of appointments he had with the consultant and other healthcare professionals were in line with NICE guidance. We cannot see that the Trust did anything wrong.

Botox

37. Mr A complains the Trust reduced his Botox appointments following his complaint.

38. The Trust did not address this complaint within its response.

39. The medical records show that Mr A was given Botox in February 2024 and July. Within the July meeting, the consultant neurologist said he would see Mr A in three months. This would mean he should have been seen in October but was not seen until March 2025. This represents a delay of five months.

40. The consultant neurologist saw Mr A in late March and was given Botox (Xeomin). Within the letter the consultant acknowledged that Mr A should have been seen sooner and given Botox. However, there is no evidence to indicate this was due to Mr A’s complaint. Our adviser said that based on clinical experience/practice, the delay in appointments were more than likely due to pressures on clinical capacity.

41. Our adviser said there is no specific guidance on how frequent Botox injections should be given to a patient suffering from MS. However, the consultant did say to Mr A a further appointment would be arranged for around October 2024.

42. The relevant guidance is our Principles for Good Administration. This says:

‘Public bodies should do what they say they are going to do.’

43. In line with the above Principles, given what had been promised, the Trust delayed giving Mr A a further Botox injection by five months. We consider this is an indication of a failing.

44. Mr A believes the lack of Botox appointments may have caused a reduction in his mobility.

45. Based on clinical experiences and practice, our adviser said it is very unlikely a lack of or delayed Botox injections would have reduced Mr A’s mobility. This is because Mr A has progressive MS. This means that over time his mobility will deteriorate as his condition progresses. Therefore, we cannot relate the lack of or delayed Botox injections to reduced mobility.

46. Informed by clinical advice, it is not possible to say that a lack of, or delayed Botox injections led to a reduction in Mr A’s mobility. We therefore cannot link the indicated failing to Mr A’s claimed impact. We recognise this delay will have caused Mr A some concern and frustration and we hope he is reassured by our investigation into this.

Complaint handling

47. Mr A complains the Trust did not answer all his queries.

48. The relevant guidance is Regulations 2009. This explains that the responsible organisation (in this case the Trust), after completing the investigation, must send the complainant in writing a response with ‘an explanation of how the complaint has been considered’…. and conclusions reached, including where the responsible organisation considers ‘that remedial action is needed.’

49. We have considered Mr A’s supporting information, including the Trust’s complaint file.

50. We have considered the Trust’s complaint response letters dated November 2024 and March 2025 and we are of the view it responded to Mr and Mrs A’s questions.

51. We consider the Trust provided a response to his complaints in line with Regulations 2009. This is because its responses showed ‘an explanation of how the complaint has been considered’…. and conclusions reached, including where the responsible organisation considers ‘that remedial action is needed’. There is no indication of a failing.

Contact from MS nurses

52. Mr A complains there was a lack of contact from the Trust’s MS nurses since November 2022.

53. The HSC Act 1993 (Section 9(4)), says we cannot accept a complaint if it is made more than a year after the day on which the person aggrieved first had notice of the matters in the complaint, unless we consider it reasonable to do so.

54. During our introductory telephone call in March 2026, Mrs A explained they (her and her husband) first contacted the Trust’s MS Nursing Team in November 2022.

55. We asked when they became aware there was a lack of contact from the MS nurses. Mrs A said they initially used to see the consultant neurologist regularly and they thought the consultant would update the nurses and they would be in touch, but they never did. Mrs A said she first became aware of the lack of contact from the MS nursing team following the MRI scan in August 2024. She said after she spoke to friends who had good experiences with MS nurses, they decided to raise concerns with the Trust.

56. We consider Mr and Mrs A had a reason to complain in late 2022/early 2023. This is because they knew the MS nursing team had not contacted them then.

57. Mr and Mrs A did not complain to the Trust until September 2024 – about one year and eight months after becoming aware they had reason to complain. We received Mr A’s complaint form in late July 2025 – two years and six months after their date of knowledge. Mr A’s complaint is one year and six months outside the statutory time limit.

58. For us to move the time limit to one side we must be satisfied the explanation for the delay is reasonable.

59. Mr and Mrs A do not think there was a delay in complaining to the Trust as they consider their date of knowledge was in August 2024. We disagree. We think they knew they were unhappy with a lack of contact from its MS nurses by late 2022/early 2023.

60. We have taken into account the length of time this complaint was in local resolution. We do not consider there was any undue delay in the Trust responding to this complaint. This is because the Trust responded within six months of receiving the complaint (September to November 2024 – first response - and November 2024 to March 2025 – final response), in line with Regulations 2009. Furthermore, Mr A’s complaint was outside the statutory time limit by the time he made a complaint to the Trust - by eight months.

61. The onus is on the complainant to make enquiries (with the organisation – in this case the Trust) when they are unhappy with the care and treatment they receive or think they should be receiving. Raising this as a complaint brings it to the attention of the organisation and allows it the opportunity to address the issue and if appropriate offer a suitable resolution.

62. We are sorry to learn of Mr and Mrs A’s experience with the Trust and the impact this had on them.

63. We are not persuaded there was any significant barrier during the majority of the time between the date of knowledge and the point Mr A came to us. We have taken into account the length of time the complaint was in local resolution. However, Mr A’s complaint was already outside the statutory time limit by the time he made a complaint to the Trust. Although we acknowledge the experiences he was going through may cause some delay, we are not satisfied the total length of time taken in bringing the complaint to us is reasonable for us to move the statutory time limit to one side. We cannot investigate his complaint any further.

64. We are sorry to learn of Mr A’s complaint about the Trust and the impact this had on him. Our primary investigation decision is not made without recognition of the impact these events have had on him, and we are sorry if our decision causes any further upset. We hope we have explained the thorough consideration we have given to our decision and clearly outlined the reasons for it.

1. We are sorry to learn of Mr A’s experiences with the Trust. We acknowledge the difficult circumstances around this complaint, and the impact this is having. We acknowledge this was and continues to be a difficult time for him.

2. We have carefully considered the complaint about the Trust. Having done so, and for the reasons set out in this statement, we have decided not to investigate this complaint further.

3. Our decision is not made without recognition of the distressing circumstances around the events.