By M. Krommyda1, A. Cifelli1, Khalid Khan2
- Consultant Neurologist, Queen’s Hospital, Essex Neurosciences Center, Romford UK
- Lead Clinical Pharmacist Neurosciences, Queen’s Hospital, Essex Neurosciences Center, Romford UK
MS Generalist MasterClass 5, January 2019
Multiple sclerosis (MS) is an acquired chronic immune‑mediated inflammatory condition of the central nervous system (CNS), affecting both the brain and spinal cord. It affects approximately 100,000 people in the UK1. It is the commonest cause of serious physical disability in adults of working age2. Current guidelines recommend regular neurological care in persons diagnosed with MS using a coordinated multidisciplinary approach1. According to the same guidelines, professionals who can best meet the needs of the person with MS and who have expertise in managing MS should be involved in their care, including Consultant neurologists, MS nurses, Physiotherapists, Occupational and Speech and language therapists, psychologists, dietitians, social care and continence specialists, GPs1.
At our hospital a dedicated MS Specialist Service is currently run by 2 Consultant Neurologists who are MS Specialists and 2 MS Specialist Nurses, who also liaise with the MS Specialist Nurses in the Community. Approximately 1035 MS appointments are offered per year corresponding on average to 460 patients being seen and followed up by the MS service on a yearly basis.
The aim of the current audit is to review the pathway and management of the MS patients when seen in the General Neurology clinic setting at our hospital prior to being referred to the MS Specialist service. Compliance and implementation of the above recommendations was investigated along with potential access barriers and delays in the everyday practice.
We chose the last 2 years (2016-2018) as our auditing time period. By using appropriate keywords on our Digital Dictation Epro system, the confirmed number of MS patients seen in the General Neurology clinics run by 2 Consultants within this time period was detected. Their clinic letters, work-up investigations and results were reviewed accordingly. The subsequent follow-up of these patients by the MS Specialist clinic was also reviewed.
Using the above method, 13 patients with confirmed MS were detected. Their ages range from 28 to 65 years old (Mean age 47) at the auditing time period and from 27-62 years old (Mean age 46) at the time of presentation to the auditing Neurologist. There were 6 males and 7 females included corresponding to various stages of MS. The majority of these patients were newly diagnosed MS cases (9 out of 13). The source of referral derived from GPs in the majority of the cases (9), ENT SpR (1), TIA clinic (1), Eye casualty (1) and the medical team (1). The MS diagnosis was missed before in 5 of these patients when reviewed by different Specialists including Neurologists in the past. Provisional diagnosis at that time included encephalitis, epileptiform presentations, RIS, TIA, etc. The type of initial presentation was variable among the cohort of the patients including gait unsteadiness, overactive bladder symptoms, motor or sensory deficits, brainstem symptoms, spinal cord syndromes, simultaneous or consecutive optic neuritis, but also less-specific symptoms such as hearing disturbance or headache which prompted to the Neuro-imaging and further investigations.
The time period between the onset of the symptoms and reaching the diagnosis ranges from 1 week to 15 years (Mean: 39 months). The time period between the onset of the symptoms and performing first neuro-imaging ranges from 1 week to 12 years (Mean: 26 months) and between the onset of the symptoms and having a lumbar puncture from 1 week to 15 years (Mean: 36 months).
All of these patients were subsequently referred to the MS Specialist clinic. The average waiting time between the referral and the appointment with the MS Specialist clinic is 6.7 months, ranging from 1.5 to 15 months. In most cases the delays were caused due to administrative errors or patients missing scheduled appointments. There were few discrepancies noted between the diagnosis offered by the General Neurologists and the MS Specialists involving mainly better classification of the type of MS in the MS Specialist clinic setting. With regards to treatment received, 5 of the patients were offered some type of treatment by the General Neurologist including however non-disease specific agents, such as Vit D and B12 replacement, oral Methylprednisolone, Nortiptyline for concurrent headaches, course of Abx for weakly (+) Lyme serology in the CSF results and dietician support. Changes in treatment were implemented subsequently in 2 patients by the MS Specialist involving initiation of disease modifying treatment (DMT) in one case and increase of the administered Pregabalin dose in another (of note 1 patient is still waiting to be seen, and another case was offered steroids at a different hospital). Contact with the MS Specialist Nurse was made only in 2 of the patients in the General Neurology clinic setting. The majority of the patients (11 out of 13) were already aware of their diagnosis before being seen by the MS Specialist.
We realized that we do not see as many MS patients in the General Neurology clinic setting. This is probably related to the fact that there is increased awareness about this condition at present resulting into many patients presenting directly to A&E or the medical teams with their symptoms and being picked-up early by the MS Specialist team especially in the hospital setting. Some GPs nowadays refer patients directly to the MS clinic and in general our impression was that referrals from GPs to the General Neurology clinic in order to exclude MS which is not subsequently confirmed are probably more common rather than the opposite. The time between the onset of presentations and reaching the diagnosis is shorter in patients who have presented more recently and has improved compared to the past. We feel that the fact that the current diagnostic criteria are more clear and practical at present has played a role in that.
With regards to the management of these patients, we concluded that we do not tend to involve the MS Specialist nurses early in the General Neurology clinic setting, which we probably do more consistently in the cases of the Epilepsy patients by sharing the contacts of the Epilepsy Specialist Nurse with them early on. According to the current NICE guidelines, the person with MS should be offered a face‑to‑face follow‑up appointment with a healthcare professional with expertise in MS to take place within 6 weeks of diagnosis1, which is not currently implemented in our everyday practice.
We do not appear to be comfortable with DMTs and newer treatment options as General Neurologists. The patients were in the majority of cases already aware of their diagnosis before seeing the specialist; we feel that we need to review how this process is followed in order to ensure optimal patient care and patient experience.
Our suggestions for improvement:
Although this is a small cohort of patients, our current suggestions for improvement as first steps involve the effort to be as clear as possible to the patients about the diagnosis of MS as General Neurologists. In the same context, terms which can be occasionally used in a vaguer manner, such as CNS demyelination/inflammation or “mild MS” should be best avoided. We need to familiarize ourselves as General Neurologists with the current treatment options, so that these can be discussed with the patient early on and ideally at the time of diagnosis. We decided to actively seek for feedback from the patients about their experience when first confronted with the MS diagnosis in the General Neurology clinic setting, avoid unnecessary delays in their management and ensure continuity of their care by involving our MS Specialist nurses earlier and pursuing MDT approach.
Special Thanks to our MS Specialist Team: Dr Abhijit Chaudhuri, Consultant Neurologist – MS Specialist, Dr Miriam Mattoscio, Consultant Neurologist – MS Specialist, Ms Sarah Fuller, MS Specialist Nurse and Ms Plaxedes Rabvukkwa, MS Specialist Nurse.
And of course Special Thanks to our MS patients.
- NICE Clinical guideline Published: 8 October 2014 nice.org.uk/guidance/cg186
- Patterns of care for Multiple Sclerosis in a setting of universal care access: A cross-sectional study, Barin et al., Mult Scler Relat Disord. 2018; Dec 2;28:17-25. doi: 10.1016/j.msard.2018.11.033.