Words by Smiley Team
The MS Society and MS Trust have surveyed healthcare professionals across the UK to find out how COVID-19 has impacted those living with multiple sclerosis. Shockingly, the study found that seven in ten UK MS healthcare professionals (70%) believed that the service they worked in, or with, were not able to meet patient’s needs currently as a result of the pandemic.
Nearly three quarters of healthcare workers (73%) thought neurological rehabilitation services had been impacted by the pandemic, with appointments having been either limited, delayed or cancelled. 76% of those surveyed said resuming these vital services back to pre-COVID-19 capacity must be a priority.
Data from the UK MS Register also shows around a third of people with MS have been struggling to stay physically active during the pandemic, with many people shielding.
Multiple sclerosis (MS) is a neurological condition affecting the nerves in the body and is caused by issues with the immune system. It is a life-long condition and although there have been some scientific advancements, there is as of yet no cure.
Behnaz, who has relapsing MS and lives in London, said: “Overnight I’d gone from being such an active person to only being able to walk the dog once a morning. I did get a virtual physiotherapy appointment in April, but after just two sessions – in which we didn’t talk about the help I needed for my weak left leg or right hand – I was told I needed to be referred to somebody else, and I haven’t heard anything since.”
“I really don’t want to lose my abilities as keeping mobile means absolutely everything to me...being so inactive has had a huge impact on my mental health – I could really just do with some expert help.
For patients living with MS, rehabilitation services are incredibly significant not only in managing their wellbeing but also in improving their quality of life.
Fredi Cavander-Attwood, Policy Manager at the MS Society notes: “Many people with MS rely on rehabilitation to manage their chronic symptoms, stay active and maintain their independence.
"Such services, especially face-to-face care, have understandably been limited or cancelled to protect people and free up NHS capacity during the pandemic. But the needs of people with MS have not disappeared and we fear the long-term impact on their health and wellbeing.
“The NHS needs to show the same leadership it has with cancer and fertility services, by helping local services and professionals overcome the challenges they face in safely resuming these vital therapies. The Government must also ensure, when planning for a second wave of the pandemic, that it factors in protection for essential rehabilitation services.”
The MS Society is calling upon people to share their stories about lack of access to care and support during the pandemic. You can get in touch at [email protected] to share your experiences.
To donate to the MS Society to ensure people can get access to the support they need head to their website.
By Ellen Jones