Gloucestershire Hospitals NHS Foundation Trust

5. Mr A complains about the care and treatment provided to his late son, Mr I, by the Practice between 25 March 2019 and 29 March 2019. Mr A complains that despite Mr I’s presentation to the GP during home visits, they failed to recognise his deterioration due to pneumonia.

6. Mr A also complains about the care and treatment provided to his late son, Mr I, by the Worcestershire Health and Care NHS Trust between January and April 2019. Mr A complains that the Trust lost the blood tests taken by the community nurses. Further to this, Mr A complains that the MS (Multiple Sclerosis) Specialist Nurse did not provide Mr I with the necessary care to keep him comfortable.

7. Mr A also complains about the care and treatment provided to his late son, Mr I, by the Gloucestershire Hospitals NHS Trust between January and April 2019. Mr A complains that staff did not discuss taking Mr I off his medication with him or his family. They were also advised that only one specific doctor could restart his medications. Mr A also complains that one of the doctors commented that he was unable to care for Mr I and spoke to him and his wife in an inappropriate manner. He also complains that Mr I was not monitored when he was taken off the medication ‘fingolimod’ in March 2019.

8. Mr A says that because of the care received, Mr I deteriorated and sadly passed away. Mr A tells us that this has been extremely challenging and distressing for himself and the family, and that it has put a strain on their lives.

9. As an outcome of the complaint, Mr A is seeking service improvements and a financial remedy for the distress his family has faced.

10. We will provide three short background sections for the complaint against each organisation. This will outline the role each organisation had in Mr I’s care. We will format our reasons for our decisions in the same way.

· The Practice

11. Between 25 and 28 March, Mr I was seen by three different doctors from the Practice. On 25 March 2019, Mr A contacted the Practice to say that Mr I had some medications reduced and had ‘not been right since’. It was reported that his condition had deteriorated and so a home visit was arranged.

12. The GP, who carried out the visit on 25 March 2019, says they were asked to visit due to concerns that Mr I’s speech had deteriorated, as well as his ability to drink liquid, and a weakness in his right arm. The GP noted these symptoms had been present during Mr I’s admission to hospital in March 2019 during which he had undergone investigations that did not show any acute brain pathology.

13. The GP’s notes from the home visit explain that Mr I’s observations did not indicate any signs of infection, as they were within the normal range. The GP did not note any difficulty in swallowing fluids. It was recorded that Mr I was due to be reviewed by the physiotherapists later that week. The GP also agreed to contact the MS team regarding Mr I’s ongoing care.

14. A second home visit took place on 27 March 2019. The family felt Mr I’s MS had relapsed, and that his condition had deteriorated. They were also concerned that the medication ‘fingolimod’ had been stopped. The GP recorded that there were no specific symptoms at that time to suggest pneumonia, and the issue was the deterioration in function. Because the concern was about a relapse of MS, a prescription was made for methylprednisolone for 5 days.

15. Mrs A called for an ambulance on 28 March 2019. The ambulance medics reviewed Mr I’s vital signs and observations, but this did not show any clinical signs that suggested pneumonia or sepsis. The Practice then arranged for a third home visit on the same day. The GP recorded that Mr I had a slight cough and carried out further observations. The GP said that Mr I had a normal temperature and his chest sounded clear on examination, meaning that there was no sign of acute infection.

16. On 29 March 2019, the family called for an ambulance again. Mr I was less responsive and unable to take oral fluids. His breathing was noisy, and he was coughing up thick sputum. He was taken to hospital due to the signs and symptoms of a lower respiratory tract infection.

· The Gloucestershire Hospitals NHS Trust (the Gloucestershire Trust)

17. The consultant nurse specialist at the Gloucestershire Hospitals NHS Trust had last reviewed Mr I in clinic in December 2017. At this time the prescription for fingolimod continued, however, the consultant nurse specialist had shared a view that Mr I’s condition had progressed to the point where it now met the criteria issued by NHS England (NHSE) for stopping treatment.

18. The Trust arranged continued blood monitoring; however, two outpatient appointments were missed in 2018, and therefore no blood test results were seen throughout 2018. The consultant nurse specialist said they wrote to Mr I in January 2019, inviting him to contact the department to re-establish follow up appointments and blood monitoring. The Trust says staff can view blood results on the patient administration system, which shows any tests processed elsewhere, and so would have been able to access those processed via Mr I’s GP Practice. No results were found prior to the letter being sent.

19. The consultant nurse specialist explained that they had several conversations with Mrs A about the issue, and during these telephone conversations they said they tried to explain the background on how clinical decisions to treat patients with Disease Modifying Therapies (DMT) are made. The consultant nurse specialist says the decisions are governed by NICE (National Institute for Health and Care Excellence) Technology Appraisals (TA254) and NHSE commissioning policy. They also said they tried to explain the clinical reasoning for follow up appointments, and the need for regular blood testing.

20. The Trust further explains that the prescribing of DMT treatments is controlled by NHSE and prescriptions must be checked off against the ‘Blue Tech’ system, which is designed to check if the treatment is still appropriate.

21. The Trust has apologised if the family felt that there was an insufficient discussion around stopping fingolimod. It explains that the consultant nurse specialist wrote to Mr I in January 2019, and a second doctor wrote in February 2019. Both letters invited Mr I to arrange an outpatient appointment to discuss the use of fingolimod.

22. The Trust notes that the consultant nurse specialist had several telephone conversations with Mrs A in March 2019 to try to explain the medical situation. An outpatient clinic appointment had also been arranged for April 2019, but sadly, Mr I passed away before this appointment.

23. The Trust explained that the use of fingolimod is not safe without blood monitoring. If someone’s condition has progressed to the extent that they are unable to get to the hospital clinic, they are likely at the point where their MS is too advanced for fingolimod to work. It was felt that due to Mr I’s late MS (secondary progressive) he did not miss out on any treatment that would have slowed down the progress of his condition in the long term.

24. The Trust has been unable to establish an instance where the family were told that only one specific doctor could restart the medications. The Consultant Neuro-Rehabilitationist is not part of the MS team in neurology for the Trust.

25. The Trust says that Mr I was in contact with his GP during the period when fingolimod was stopped, and that the GP was arranging blood tests. He had been unable to attend the Trust for some time. The Trust says its intention is to monitor patients receiving fingolimod, as well as those who switch DMT, or stop. According to the consultant nurse specialist, if a patient stops DMT, it is routine practice to monitor the recovery of the blood counts as well as their clinical condition. However, it only operates this service through an outpatient clinic system, and therefore the success of this is entirely dependent on a patient’s ability to attend clinic appointments.

· The Worcestershire Health and Care NHS Trust (the Worcestershire Trust)

26. The Trust says that Mr I had a blood sample taken on 23 January 2019 by the community nurses, following a request by the MS specialist nurse on 18 January 2019. It explains that these were non-urgent routine bloods to be used by the MS specialist team based at Cheltenham General Hospital (part of the Gloucestershire Hospitals NHS Trust). The bloods were to monitor the effects of ‘fingolimod’, the medication Mr I had been taking.

27. The Trust says a copy of the blood results were sent on 12 February 2019 to the consultant nurse specialist at the Gloucestershire Hospitals NHS Trust. The consultant nurse specialist was responsible for prescribing and monitoring the fingolimod. Whilst the Trust has an audit trail of the MS specialist nurse requesting the results were emailed to the consultant nurse specialists’ team, the secretary who was tasked with sending them no longer works for the Trust and so it has no email confirmation of this.

28. The Trust has apologised if the family felt Mr I should have received more visits from the MS team. It explains that the MS specialist nurse’s role was to monitor and support the management of Mr I’s MS symptoms. The medical management of Mr I’s condition was managed by the team at the Gloucestershire Hospitals NHS Trust.

29. The Trust says that the MS specialist nurse visited Mr I on 31 January 2019 to review his MS symptoms and planned to review him in a further 3 months (30 April 2019) to monitor symptoms and adjust any disease management plans accordingly. The MS specialist nurse felt this was an appropriate timescale based on how Mr I was presenting at the time. The Trust explained the family could have contacted the MS specialist nurse for advice, or to discuss any concerns between these visits, so she could provide additional support as required.

30. The Trust say the neighbourhood team were involved and regularly visited Mr I to support with specific elements of his condition, such as bladder and bowel monitoring and management. Mr I also had carers at home visiting four times per day to support with day-to-day essential care.

31. General medical issues were the responsibility of Mr I’s GP, and collectively the three services were working together to keep Mr I comfortable at home. Because of the level of support Mr I was receiving, the MS specialist nurse did not identify a need to visit in between the prescheduled visits.

32. On 8 March 2019, Mrs A spoke with the MS specialist nurse about her concerns that Mr I had his fingolimod discontinued. The MS specialist nurse contacted the consultant neurologist to arrange a review of Mr I’s symptoms and disease management during his inpatient stay at hospital A (under the Worcestershire Acute Hospitals NHS Trust). The consultant neurologist recommended that Mr I’s flare up of symptoms was likely due to an infection, and it was recommended that he was followed up by the primary MS team in Gloucestershire. The MS specialist nurse updated the consultant nurse specialist about these events and requested a further review for Mr I, which was arranged for the end of April 2019.

The Practice

36. Mr A is concerned that the GPs failed to identify Mr I’s deteriorating condition, due to infection. He is also concerned that Mr I was misdiagnosed with fatigue, despite presenting with breathing difficulties. Mr A is concerned that this led to delays in the treatment of Mr I, and that this exacerbated his overall deterioration.

37. Before we decide if we should investigate a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and, we have not seen any indications that something has gone wrong. When considering this part of the complaint, we sought advice from the GP adviser.

38. When reviewing Mr I’s GP records, there were no strong signs or symptoms of infection, until his admission to hospital A. He did not have a high temperature, a low blood oxygen level, or a high respiratory rate and high pulse rate. We asked the GP adviser if there were any indications that any signs or symptoms of infection were missed during the home visits.

39. The GP adviser explained that patients who suffer from MS are at a high risk of developing aspiration pneumonia (Patient Information – Aspiration Pneumonia Symptoms, Treatment, and Information) and that it is an illness which can develop rapidly.

40. We looked at the GP records from each home visit. The records show us that the GPs considered the investigations carried out during Mr I’s recent hospital admission and his change in medication. Notably, the MS team’s decision to stop prescribing fingolimod. The adviser confirmed that any decisions made regarding the prescription of fingolimod would be the responsibility of the MS team, and not the GPs. We will address the concerns about fingolimod later when we consider the actions of the MS team.

41. The records tell us that the GPs carried out standard observations such as blood pressure, heart rate, oxygen saturation, temperature, and observed Mr I swallowing fluids. The adviser confirmed that the results of the observations did not highlight a cause for concern.

42. We can also see that the GPs contacted the MS team to arrange a follow up appointment and review, due to the family’s concern that Mr I had suffered from a relapse. The records show that this was actioned, and that a physiotherapy review had been arranged for the same week. There are records of a discussion with the lead MS nurse, from the MS team, and the notes indicate they discussed the ongoing treatment plan, which was fed back to the family.

43. On 28 March 2019 when an ambulance was called, the paramedics recommended that Mr I was reviewed by his GP if the family remained concerned. They noted in their records that there were no signs of infection, but a plan was in place should Mr I deteriorate. From the GP records, we can see that the GP reviewed the observations carried out by the paramedics and noted that there were no specific new symptoms to suggest infection.

44. By carrying out the above actions, the GP’s have acted in line with the GMC’s Good Medical Practice guidance, which is as follows:

“You must provide a good standard of practice and care. If you assess, diagnose, or treat patients, you must: · adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social, and cultural factors), their views and values; where necessary, examine the patient · promptly provide or arrange suitable advice, investigations, or treatment where necessary · refer a patient to another practitioner when this serves the patient’s needs”.

45. It appears that the GPs thoroughly assessed Mr I for signs of infection. The examinations carried out by both the GPs and the paramedics during this time did not show signs that something was wrong. Unfortunately, it appears that Mr I’s condition deteriorated quite quickly. Our GP adviser confirmed that it was appropriate for the GPs to seek information and advice from the MS team about Mr I’s medication and ongoing medical reviews, and they planned for him to be seen later that week. The review was unable to take place as planned due to Mr I’s admission to hospital A on 29 March 2019.

46. In conclusion, we have not seen there was a missed opportunity to diagnose Mr I with an infection prior to him being admitted to hospital A on 29 March 2019. From the evidence we have reviewed, the GPs assessed Mr I and sought advice and further review in line with the GMC’s Good Medical Practice guidelines. As such, we have not seen any indications of service failure relating to this part of the complaint.

The Gloucestershire Hospitals NHS Trust

· Mr and Mrs A complain that Mr I was taken off fingolimod. They say the medication should not have been stopped, and they are concerned that this caused Mr I’s deterioration.

47. When considering this part of the complaint, we sought advice from the MS specialist nurse adviser. We will refer to this person as the ‘the MS nurse adviser’ in this part of our statement.

48. The MS nurse adviser explained that fingolimod is a disease modifying therapy (DMT) which has strict criteria for eligibility and continued use. This criterion is outlined in the NICE Technology Appraisal Guidance (TA254) Fingolimod for the treatment of highly active relapsing-remitting multiple sclerosis. The guidance explains that fingolimod is recommended as an option for the treatment of highly active relapsing-remitting multiple sclerosis in adults, only if they have an unchanged or increased relapse rate, or ongoing severe relapses, compared with the previous year despite treatment with beta interferon.

49. It is also explained in the NHSE guidance Treatment Algorithm for Multiple Sclerosis Disease-Modifying Therapies that the DMT should be stopped if:

· There has been no reduction in frequency or severity of relapses compared with pre-treatment phase following adequate exposure to the DMTS · Intolerable adverse effects of the drug · Development of inability to walk (EDSS 7.0) persistent for more than 6 months due to MS · Confirmed secondary progressive disease with an observable increase in disability for more than a 12-month period, in the absence of relapse activity. Secondary progressive disease would usually only be diagnosed in patients with an EDSS of 6.0 or greater.

50. The EDSS is the Expanded Disability Status Scale. It is a method of quantifying disability in MS, and monitoring changes in the level of disability over time.

51. Based on the information in Mr I’s medical records, it appears that his MS had reached the secondary progressive stage, and his EDSS was greater than 7.5. This level in the scale details those who are unable to take more than a few steps, who are restricted to a wheelchair, and may need aid in transferring. These patients cannot carry on in a standard wheelchair for a full day.

52. The MS specialist nurse has noted that when speaking with Mrs A, she explained that Mr I had no volitional movement within his right or left lower limbs. He required hoist transfers, though he was able to sit in a wheelchair for short periods of time. This description appears to be in line with 7.5 on the EDSS. The EDSS score alone suggests that Mr I met the criteria for stopping the use of fingolimod. The notes from the MS specialist nurse who oversaw Mr I’s care suggest that he thought Mr I may have been reaching this stage in late 2017.

53. The secondary factor to stopping the prescription was Mr I’s non-attendance of monitoring appointments. The British National Formulary (BNF) for fingolimod explains that there are requirements for regular monitoring and reviews for the eyes, skin, and liver function. This includes blood monitoring, which should be done initially at three months, and yearly thereafter.

54. Mr I had last been reviewed by the MS specialist nurse in December 2017, and unfortunately had been unable to attend his appointments arranged during 2018. The Trust’s view is that Mr I had missed his reviews and had not engaged with blood monitoring. It also commented that it had access to Mr I’s GP records but had not had any blood results sent through from the community team. Regular reviews and monitoring are in place to ensure patient safety and to ensure that treatment is continuing to provide benefit to the patient.

55. The MS team did contact Mr I in January 2019 to rectify this issue, however, it did acknowledge that due to the progression of his MS, there would be difficulties in terms of arranging appropriate transport. It had arranged a follow up appointment for April 2019.

56. We have seen this letter which addresses Mr I cancelling a clinic appointment in August 2018. It confirms that the Trust had no recent blood results to allow monitoring whilst on fingolimod. The letter asked Mr I to get in touch and arrange an appointment. This is because it would only be able to continue repeat prescribing for fingolimod once Mr I had been reviewed in clinic, and it had been established that his blood results were in appropriate ranges.

57. Based on the evidence we have received we consider it was clinically appropriate for the Trust to stop the prescription of fingolimod. Mr I had reached the NHSE criteria for stopping DMTs and was unable to engage in regular reviews and monitoring to ensure safe prescribing of fingolimod. We have not seen any indications of service failure relating to this part of the complaint.

· Mr and Mrs A complain that stopping fingolimod was not discussed with them, and they did not understand why this action had been taken.

58. NICE Clinical guideline (CG76) Medicine’s adherence: involving patients in decisions about prescribed medicines and supporting adherence explains that good communication between healthcare professionals and patients is needed for involvement of patients in decisions about medicines and for supporting adherence.

59. We can see that the MS team wrote to Mr I in January 2019 inviting him to contact the department to re-establish follow up appointments and blood monitoring after had had missed his clinic appointments which were scheduled in 2018. This would have afforded the opportunity to discuss the continued use of fingolimod.

60. We have also reviewed the information within the records, and we can see that the consultant nurse specialist spoke with Mrs A in February and March 2019. Mrs A reported that Mr I likely did not have the capacity to discuss his medication at that time. From the notes of some of these discussions we can see that the consultant nurse specialist tried to explain the medical situation in terms of both patient safety and the NHSE criteria for prescribing and stopping prescriptions.

61. We recognise that the family may have preferred a discussion about the continued use of fingolimod before the prescription was stopped and this is a shortcoming on behalf of the MS team. However, the prescription was stopped due to concerns regarding patient safety due to the missed monitoring/review appointments, and in considering the NHSE guidance, which as we have stated above was appropriately done.

62. The Trust has apologised that the family felt there was insufficient discussion around stopping fingolimod, and for any distress this caused. We consider this addresses the shortcoming in the lack of discussion prior to stopping the prescription in January 2019. We can see that the MS team communicated clearly and openly with the family following the January 2019 letter, which is in line with our Principles of Good Administration regarding openness and accountability.

· Mr and Mrs A also complain that Mr I was not monitored when he was taken off the medication fingolimod in March 2019.

63. The NHSE guidance Treatment Algorithm for Multiple Sclerosis Disease-Modifying Therapies explain that stopping DMTs should lead to continued care within the MS team or transfer of care to services which can provide appropriate support. In an ideal situation this would mean that Mr I continued to be reviewed and seen by the MS team.

64. The Trust explains that there is a system in place whereby patients who stop taking DMTs are monitored. However, this service is operated through an outpatient clinic system, and so the success of such monitoring is entirely dependent on the patient’s ability to attend clinic appointments. The Trust recognised the difficulties that the family faced in arranging appropriate transport to attend such appointments.

65. We can see that a follow up appointment for review had been arranged for April 2019, but sadly Mr I had passed away before this date. However, it appears the Trust’s intention was to review Mr I at this appointment, following the discontinuance of fingolimod. We can also see that the family were able to contact the MS team regularly to discuss any concerns they had about Mr I’s condition.

66. In addition to this, the community district nurses were supporting Mr I daily and he also had the support of his GP. The MS nurse adviser confirmed that this would have been sufficient in terms of providing appropriate support, as outlined in the NHSE guidance. As such, it appears that Mr I had a sufficient level of monitoring and support when he was taken off fingolimod. Overall, we have not identified any indications of maladministration in relation to this part of the complaint.

· Further to this, Mr A complains the family were advised that only one specific doctor could restart Mr I’s medications.

67. We have reviewed all the correspondence we have between Mr A and the Gloucestershire Hospitals NHS Foundation Trust. In an email dated 15 October 2019, Mrs A told the Trust that the MS specialist nurse informed her in a phone call (on 28 March 2019) that the only doctor who could put Mr I back on his medication would be a Consultant Neuro-Rehabilitationist.

68. We do not have a recording of this telephone conversation and there are no corresponding notes within the medical records that detail what was discussed.

69. It is our understanding that the Consultant Neuro-Rehabilitationist is not part of the MS team in neurology for the Trust, and so it is unlikely that he would have had the ability put Mr I back onto his medication. The letter sent to Mr I in January 2019 asked him to arrange an appointment with the MS team to discuss the continued use of fingolimod, this confirms that it would be the MS team who would restart the medication, if it was clinically indicated.

70. We can understand why the family came to the conclusion that there was only one specific doctor who could restart the medication. The evidence we have seen does not indicate that this was the case. However, we appreciate that this was a distressing time for the family as they were trying to find a solution for Mr I. Moreover, communication on this matter may have been difficult if Mrs A felt Mr I was not receiving the care and medication they were expecting.

· Lastly, Mr A complains that the MS nurse commented that Mr and Mrs A were unable to care for Mr I and spoke to him and his wife in an inappropriate manner.

71. In an email dated 14 October 2019, Mr and Mrs A say that the MS specialist nurse had stated that he didn’t think the family were capable of looking after Mr I or ensuring he had his blood tests carried out.

72. There is an entry in the records from the MS specialist nurse dated 12 March 2019 which reads:

· “I am not convinced they [the family] would be able to engage appropriately with the requirements of blood monitoring and follow-up appointments.”

73. This is also repeated in the complaints responses where the Trust has commented on the responsibility to attend appointments and the importance of engaging with treatment.

74. In looking at the correspondence, it appears that the MS team were trying to explain the importance of attending appointments in terms of engaging in the monitoring requirements, rather than suggesting that Mr and Mrs A were unable to care for Mr I.

75. The Trust acknowledged that Mr I’s ability to attend appointments was reliant on finding transport to accommodate the extent of his disability, which made travelling difficult. It has also been acknowledged in Trust correspondence that Mr I’s condition had deteriorated so much that he was unable to travel to the hospital, which was indicative of the unfortunate secondary progression of his MS. As a conclusion to this, it would have likely been extremely difficult for the family to organise travel to the Trust.

76. This was evidently a very distressing time for Mr and Mrs A. We can appreciate why they may have felt the Trust were suggesting that they were unable to care for Mr I appropriately. At such an upsetting time for the family, it is understandable that these comments caused confusion. It is clear that the family were doing the best they could for Mr I.

77. We do not have recordings of telephone conversations between Mr and Mrs A and the specialist nurse, and so it is not possible to support the conclusion that this was said or implied through verbal correspondence. Nor can we say whether the MS nurse spoke to Mr and Mrs A in an inappropriate manner because we do not have the evidence to do so. It is worth acknowledging that these were likely highly emotional conversations, and it was a difficult time for the family. Being spoken to in an inappropriate manner would be unacceptable in any situation, but especially one as sensitive as this. We are sorry to hear that Mr and Mrs A felt this way. The Trust commented that the MS specialist nurse was sorry to learn of this perception and maintained that they did not believe this. They apologised if the family felt they had suggested this in any conversation or communication.

78. We have not seen any evidence to support the conclusion that the MS nurse said the family were unable to care for Mr I. Though as outlined above, we recognise the family’s distress and how this conclusion may have been drawn. The Trust has apologised if it has given this impression and has explained the reasons for its comments. We consider this is an appropriate response to such distress, in line with our Principles of Good Complaint Handling. Overall, we do not consider there are indications of service failure relating to this part of the complaint.

The Worcestershire Health and Care NHS Trust

· Mr A complains that the Trust lost the blood tests taken by the community nurses.

79. We have looked at the records made by the district nursing team, which confirm a blood test was carried out on 23 January 2019 for the GP. We have also seen an email to the MS team from the MS specialist nurse (dated 12 February 2019) in which they state they would ask the secretary to send the blood results over. As the Trust has pointed out, there is no official confirmation that this was done, and we have not located such results in the medical records provided by the Gloucestershire Hospitals NHS Trust.

80. We cannot say that the blood tests were lost, however, we do not have the evidence to support the statement that the blood results were sent across to the MS team at the Gloucestershire Hospitals NHS Trust as they should have been. This indicates a failing. The blood results would have allowed the team at the Gloucestershire Hospitals NHS Trust to make a decision about the use of fingolimod.

81. We have considered if there would have been any impact in the Trust not receiving these blood results. The decision had already been made to cease use of the medication, and it is likely these blood results would not have changed this decision as Mr I had reached the NHSE criteria for stopping DMTs (as outlined earlier in this statement).

82. In considering a more general impact of this, the MS team received blood test results from the GP on 1 March 2019 which allowed them to review Mr I’s condition. The MS team has explained in its correspondence that these blood results did not show any reason for concern. As such, we consider it likely that not receiving the blood results in February 2019 had little to no impact on the Trust’s decision to stop fingolimod. As the initial blood tests were taken for the GP, the GP would have been responsible for the initial review and action on any causes for concern. Despite this, we recognise that whilst the delay had little to no impact on the care received, we can understand how this would have led to concern for the family and eroded confidence in the Trust at an already difficult time.

83. We can see that the Trust apologised for any confusion caused and we consider that this is a proportionate remedy for these events. We acknowledge that upon receipt of the Trust response detailing these events, it is likely that the family experienced some distress, however we hope that this information will be reassuring for them that these blood test results would not have made a difference to Mr I’s use of fingolimod at that time.

· Mr A also complains that the MS Specialist Nurse did not visit Mr I with the necessary care to keep him comfortable.

84. When considering this part of the complaint, we sought advice from the MS specialist nurse adviser. We will refer to this person as the ‘MS nurse adviser’ in this part of our statement.

85. The NICE Clinical guideline (CG186) Multiple sclerosis in adults: management. CG186 explains that information, support, and social care needs, should be reviewed regularly and patients with MS should have a management plan which includes who to contact if their symptoms change significantly (1.2.5, 1.2.6). The guidance also says that those with MS should be cared for using a co-ordinated multidisciplinary approach (1.3.1).

86. Further to this, the guidance states that those responsible for the care of patients with MS should determine how often they need to be seen based on their needs, and those of their family and carers, and the frequency of visits needed for different types of treatment (such as reviews of DMTs) (1.5.1).

87. We can see from the timeline of events that the MS specialist nurse saw Mr I at home in January 2019 and decided to see him again in three months’ time. The adviser has confirmed that this period between appointments is not unusual. In the interim, Mr I and his family were offered telephone support from the MS team, and so had the opportunity to seek an earlier review if clinically indicated.

88. Mr I also had the support of the district nurses, his GP, and was able to contact the team at the Gloucestershire Hospitals NHS Trust should he require their assistance. This demonstrates a co-ordinated multidisciplinary approach to his care. The MS nurse adviser explained that this overlap of care would ensure that Mr I had access to regular monitoring and review where needed, as it is likely the district nurses would have cascaded any concerns to the MS specialist nurse and team.

89. Overall, it appears that the Gloucestershire Hospitals NHS Trust provided Mr I with an appropriate level of care to keep him comfortable in line with the NICE clinical guidelines. Mr I had regular reviews, and had appropriate contacts to reach out to if his condition changed significantly. There was a clear multidisciplinary approach in place which was adequate for his presenting needs. As such, we have not identified any indications of service failure relating to this part of the complaint. However, we can understand why Mr A and his family feel that more support should have been available, given how stressful and emotionally draining this situation must have been for them. They clearly wanted the best for Mr I and we can understand why they feel more could have been done.

1. We have carefully considered Mr A’s complaint about a medical practice in the Worcestershire area (the Practice), the Worcestershire Health and Care NHS Trust, and the Gloucestershire Hospitals NHS Trust. We were sorry to hear how Mr A and the late Mr I have been affected. It is clear they had a difficult and upsetting experience, and understandably, Mr A wants to ensure this does not happen again.

2. There are elements of the complaint where we have not seen any indications that things went wrong. This means that from the evidence considered, it appears that the GP and both NHS Trusts have provided appropriate care and treatment for Mr I.

3. However, there is one of Mr A’s concerns where we can see that the Worcestershire Health and Care NHS Trust has not provided Mr I with the standard of service we would expect. We have carefully considered the impact of this, and we have considered whether there is more we would expect the Trust to do to put things right. Our view is that the Trust has taken proportionate action to remedy the concerns Mr A raised, and that this had no notable impact on Mr I’s care and treatment.

4. We will explain our reasons for our decision in this assessment statement. Complaints give us valuable insight into the organisations we investigate, so we would like to thank Mr A for sharing his experience with us.