UCLH opens second 'long Covid' clinic for patients with neurological complications

UCLH has opened a new clinic for neurology patients with ‘long Covid’ at the National Hospital for Neurology and Neurosurgery (NHNN) with funding from the National Brain Appeal.

The Covid Neurology Clinic will focus on complaints such as headache, ‘brain fog’, muscle weakness and brain inflammation in patients recovering from the Covid-19 virus.

The National Brain Appeal, the charity attached to the NHNN, has provided £65,000 to fund the service for one year, enabling the clinic to establish quickly to meet the growing demand of patients reporting lingering symptoms.

Led by consultant neurologists Dr Patricia McNamara and Dr Mike Zandi, the clinic will see both patients who need help after discharge from hospital as well as patients who have not been hospitalised but who need access to care for the long-term consequences of the virus.

Patients will be seen face to face primarily, although video and telephone consultations are also an option. Clinicians are also offering advice and guidance to colleagues throughout the UK through a virtual multidisciplinary meeting (MDT) which has increased from monthly to weekly to cope with the increasing numbers of patients affected by suspected neurological complications.

Referrals increased after Dr Zandi, neurologist Hadi Manji and colleagues published a study in the journal Brain in July about delirium, rare brain inflammation and stroke linked to Covid-19.

Dr Zandi said: “Our study was widely covered in the press which led to a flood of emails from patients. We immediately realised that we had to listen to patients and provide them with the right pathway to access a diagnosis and treatment.”

Symptoms reported by patients include fatigue, memory problems, muscle pain, dizziness, light-headedness, unsteadiness, numbness, pins and needles, loss of taste and smell, seizures, tremors, nausea, PTSD, anxiety and depression.

Lyth Hishmeh, 26, fell ill with Covid-19 in mid-March, and thought he was on the road to recovery after two weeks when he collapsed while out buying groceries. He could not breathe and his heart was racing but was discharged from A&E after being told it was the tail end of Covid. 

The software engineer was experiencing extreme fatigue, he could barely move, and he developed very bad brain fog. He said: “I couldn’t think, watch a film or read an article. Before Covid, I was someone who would read research papers to relax. My memory was non-existent. I didn’t feel like myself anymore.”

His GP was unaware of ‘long Covid’ at the time and dismissed Lyth’s symptoms as anxiety. Thankfully, when the condition became more widely known, his GP referred him to the Covid Neurology Clinic at the NHNN. The virus has caused dysautonomia, problems with Lyth’s autonomic nervous system, where his heart rate spikes when he sits up or stands up.

He said: “Being referred to the Covid Neurology Clinic is the best thing that has happened to me since my Covid experience began. I felt validated. Dr McNamara listened to me and arranged for a whole host of tests and neurological assessments. She set my mind at ease that there would not be lasting damage.”

The clinic has seen more than 50 patients since it opened.

Dr McNamara said: “Funding has allowed us to provide a streamlined service for neuro-Covid patients. With some patients, we can treat their symptoms and provide reassurance that they will improve. We can request brain-wave tests, nerve tests, memory tests if required. And some patients may need an MRI scan or support with rehabilitation.”

This is the second clinic to open at UCLH. The first was set up by the respiratory team led by Dr Melissa Heightman in May and also sees a wide range of patients, referring to other specialties, such as cardiology, neurology, physiotherapy and psychiatry, as needed. The new clinic at the NHNN will also be able to refer to other specialties.

Dr McNamara said: “While we have gained knowledge about Covid-19 and its neurological complications in recent months, it is still an evolving field. It is important that patients with neurological symptoms do not feel neglected and the clinic will be able to review those patients and help address their symptoms.

“We would not have been able to do this without The National Brain Appeal’s funding. We are incredibly grateful for their quick response to help get this vital clinic up and running.”

Theresa Dauncey, Chief Executive of The National Brain Appeal, said: “The National Brain Appeal is proud to be able to support new initiatives to help people suffering with neurological complications from COVID-19. We work very closely with clinical and research staff at Queen Square to provide help where and when it is most needed. The continuing support of our loyal donors and fundraisers makes these projects possible.”

To access the clinic, patients experiencing post-viral symptoms are encouraged to see their GP and request a referral to UCLH.

Full referral information for GPs

UCLH now has three clinics for patients with long Covid. The main clinic is under respiratory medicine but we also run two specialist clinics for neurological complaints and anosmia.

GPs within North Central London STP can refer through the NHS e-Referral Service and patients will be triaged to the service most suited to help with their symptoms. GPs outside the North Central London STP can use the advice and guidance service on eReferrals. Patients outside North Central London STP can find a clinic closer to home from this list.

To refer a patient to the main clinic on eRS please choose:

·         Specialty – Respiratory Medicine

·         Clinic type – Not otherwise specified

·         Organisation – University College Hospital

·         Service name - Post COVID Multi-specialty Follow Up Service - UCLH RRV

To send an advice and guidance request on eRS please choose

·         Specialty – Respiratory Medicine

·         Clinic type – Not otherwise specified

·         Organisation – University College Hospital

·         Service name - Post COVID Advice and Guidance Service - UCLH RRV

To refer a patient to the Covid Neurology Clinic on eRS please choose:

·         Specialty – Neurology

·         Clinic type – Neuromuscular

·         Organisation – National Hospital for Neurology and Neurosurgery

·         Service name – Neuromuscular – NHNN – UCLH – RRV

To refer a patient to the anosmia clinic on eRS please document anosmia clearly in the referral letter and choose:

·         Specialty – ENT

·         Clinic type – Nose

·         Organisation – Royal National ENT and Eastman Dental Hospital

·         Service name – ENT Nose/Rhinology Service – RNTNE – UCLH – RRV