Meetings being held without Mrs E being present
16. Mrs E complains the Trust has excluded her from meetings about Mr E’s care and treatment since 2018. She explains that, as his representative, she should be in all meetings.
17. Since the Trust provided her copies of minutes of the meetings, she has raised concerns about professionals in them wanting to remove Mr E’s care package.
18. In its complaint responses, the Trust explained that funding meetings held with professionals from other agencies were confidential and it had not intended to make Mrs E feel excluded. It went on to explain its role in provision of treatment for Mr E and the need to make decisions in his best interests, holding multidisciplinary team meetings (MDTs) for this purpose.
19. The Trust explained that the meetings did not consider removing his care.
20. Before we decide if we should conduct a detailed investigation of 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.
21. We looked at the SCIE guidelines which explain who should attend MDTs.
22. This says MDTs are made up of ‘Multidisciplinary teams (MDTs) are the mechanism for organising and coordinating health and care services to meet the needs of individuals with complex care needs...The teams bring together the expertise and skills of different professionals to assess, plan and manage care jointly.’ There is no reference to the need for the patient or their representative to attend the meeting.
23. From the medical records we can see Mrs E was invited to other meetings. For instance, she attended a meeting on 5 May 2020 which was in respect of Mr E’s care programme. Another instance was on 18 October 2021 when Mrs E was invited to a meeting to review Mr E’s support plan.
24. From this, we cannot find anything to indicate the Trust did anything wrong in holding MDTs without inviting Mrs E. She is not a medical or care professional and, whilst she is Mr E’s mother and will have her son’s best interests at heart, she is not able to make medical decisions about his treatment. Where it is appropriate, the Trust has invited her to attend.
25. We acknowledge this situation to be frustrating for Mrs E in her efforts to have the best care and treatment in place for her son. It will be upsetting and stressful for her, as his mother and carer, to rely on others in the decision-making process.
Prescribing medication without seeing Mr E
26. Mrs E complains that Trust neurologists have continued to prescribe medication to manage Mr E’s epilepsy without seeing him. She is concerned the medication is not managing his symptoms and that it may be causing other health problems, as Mr E has developed diabetes.
27. In addition, she complains this had led to other health professionals doubting his diagnosis of epilepsy.
28. The Trust says Mr E’s consultant psychiatrist referred him to the neurologist for epilepsy management. It explained a consultant and a community nurse visited Mr E at home to gain information for the referral. It explained clinicians felt they could not confirm the diagnosis of epilepsy, and asked Mrs E to keep an epilepsy diary for her son.
29. In further communication, the Trust explained Mr E needed an EEG to ensure it could provide the correct treatment. It said there were delays caused by COVID-19.
30. We can see what should have happened by looking at what the relevant standards and guidelines recommend. In this case, we have looked at NICE guidance on Epilepsies: diagnosis and management, BNF 79 information on lamotrigine. This is a first line anti-seizure medication and mood neutraliser (keeping the mood constant).
31. At the time of the referral to neurology, Mr E was taking lamotrigine for his epilepsy. BNF 79 does not list diabetes as a known side effect or risk of this medication.
32. Looking at the medical records from June 2020, the referral letter to neurology explains Mr E is unable to attend hospital for appointments and suggests assessment needs to take place at home.
33. After the referral, letters from the Trust show it offered several appointments for the EEG. We can see the first of these was for an ambulatory (where a patient is able to move about and does not need to an inpatient) EEG on 18 November 2020, with advice that Mr E would need to attend the hospital twice following fitting of the equipment. It explained he would need to attend for replacement batteries during the test and then for removal of the equipment.
34. As Mr E refused to attend hospital, a letter to his consultant psychiatrist explains the Trust was trying to arrange the ambulatory appointments elsewhere. It suggested clinicians may see him at a clinic outside of the hospital environment. The medical records show the Trust updated Mrs E of this by email.
35. A letter the Trust sent to Mrs E in February 2021 confirms details of a video appointment where it provided options to enable Mr E to be tested. We can see it offered an ambulatory EEG, with appointments at a facility off-site for fitting of the equipment. In addition, it offered video telemetry (another method of monitoring brain waves), but this would be in the hospital. The letter asked Mrs E to contact the Trust to arrange either option.
36. Medical records from February 2021 show Mrs E contacted the Trust to ask for a home visit to fit the EEG equipment. We can see the Trust said it was ‘...not currently attending patient’s homes for Home VT/Ambulatory EEG...waiting for this current lockdown phase to end’.
37. The consultant psychiatrist visited Mr E at home in December 2021. A letter after the visit explains Mrs E had kept an epilepsy diary for the week prior to the visit. Following the visit the Truust records say Mr E needed an EEG before clinicians could review his medication.
38. In October 2022, the Trust wrote to Mr E’s GP. It explained that without an EEG, it was not possible to review his medication. It told the GP it had offered several appointments for an ambulatory EEG, including appointments to fit the equipment at home, but Mrs E declined these.
39. We can see on the 8 November 2022, the medical records say ‘reasonable adjustments have been offered to support home EEG appointment, including shorter duration but Mrs E declined and was concerned Mr E would not tolerate the procedure’.
40. Our adviser explained medication is the first step in trying to control seizures. Where the individual has learning difficulties, they explained the medication prescribed should be mood neutral (where the patient is not feeling extreme emotion, thus relatively calm).
41. Where this is ineffective, our adviser explained an EEG is then the next step in deciding treatment. They explained this will usually be carried out over a 24-to-48-hour period as an inpatient or as an ambulatory (where the patient does not have to stay in hospital).
42. They also explained clinicians can prescribe medication whether they see the patient or not, as the first step does not is always the same. In this instance, Mr E was taking lamotrigine which is a mood stabiliser and anti-epileptic. They explained this is suitable for Mr E as it is both in line with NICE guidance and considers his diabetes.
43. As Mr E cannot attend hospital, our adviser explained that generally the equipment will not be fitted outside of the hospital. They explained it is not proportionate to do this for several reasons such as it not being in staff contracts, and the impact on other patients of removing staff from the workplace. They felt the Trust trying to accommodate this is over and above expectations.
44. From this, we cannot see any indications that the Trust failed to meet the requirements of NICE guidance. This is because the first step of managing seizures is medication. There is no need to have a face-to-face appointment to prescribe if the medication prescribed considers a patient’s comorbidities. In this case, lamotrigine is a mood neutralising medication as well as an anti-epileptic and considers Mr E’s diabetes.
45. As there are concerns about the effectiveness of the medication, before being able to agree a new care path, the Trust needs to conduct an EEG, in line with NICE guidance. The medical records and letters show the Trust has tried to arrange this offering hospital, off site and home appointments in attempts to meet Mr E’s needs. As the tests have not taken place, it appears the Trust is unable to review Mr E’s medication.
46. We realise this has been, and continues to be, a difficult time for Mrs E and her son. It will be very distressing to witness the seizures and their impact on Mr E.