HEALTHCARE professionals in England are warning that neurological rehabilitation services must be prioritised to restart, as people living with multiple sclerosis (MS) feel the impact of months without essential therapies.
A survey by the MS Society and MS Trust found seven in ten MS healthcare professionals (70%) believe the MS service they work in, or with, is not currently able to meet patients’ needs to the extent it was pre-pandemic. Nearly three quarters (73%) think neurological rehabilitation services have been impacted by the pandemic, with appointments having been either limited, delayed or cancelled – 76% said resuming these vital services back to pre-COVID-19 capacity must be a priority.
More than 130,000 people live with MS in the UK and data from the UK MS Register shows almost a third have been struggling to stay physically active during the pandemic, with many people shielding. Without rehabilitation therapies such as exercise, physiotherapy and emotional support, the ability of people with MS to maintain or improve their physical functioning and quality of life is significantly limited.
Behnaz Pourafshari, 36, is a software developer from London who has lived with the relapsing form of MS since 2012. She experiences mobility difficulties in her leg and hand, as well as cognition problems. Before the pandemic, Behnaz attended regular Pilates and gym classes, ran 5k every week and loved hiking. Now shielding, she’s struggling to cope with her inactive lifestyle and more than ever needs support from a physiotherapist – something she’d already been waiting months for.
“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. But my leg feels weaker and just last week it gave way when I was walking the dog. Luckily the headphones I was wearing saved my head from the fall, but I had to call my husband as I cut my hands and knees. I won’t let that incident stop me trying as being so inactive has had a huge impact on my mental health – I could really just do with some expert help.”
Alongside workforce redeployment, MS healthcare professionals identified a number of ongoing challenges MS services are facing in getting back to pre-COVID capacity safely. Three in four (75%) said a backlog of patients was a challenge, more than three in five (66%) said a lack of physical space to deliver care safely was problematic, while three in five (60%) said patients being reluctant to attend appointments was having an impact.
Furthermore, a recent survey by the Neurological Alliance found people living with neurological conditions, including MS, are also experiencing delays to their medical appointments. More than seven in ten (72%) said one or more of their NHS appointments had been delayed, while nearly one in four (23%) had experienced difficulty in obtaining their regular medication.
Fredi Cavander-Attwood, Policy Manager at the MS Society, said:
“More than 130,000 people live with MS in the UK, and many 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.
“MS is relentless, painful and disabling, and 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.”
Megan Roberts, Head of Health Professionals Programmes at the MS Trust, said:
“We’re hearing first-hand from people with MS who feel that their health and wellbeing has deteriorated during the pandemic because they have been unable to access the life-changing rehabilitation services they rely on. Healthcare professionals are going above and beyond to support people with MS in these uncertain times, but they are facing huge challenges to meet the needs of the MS community and get services back to pre-COVID capacity. We stand with the MS Society in urging the NHS to address the current gaps in treatment, care and support and ensure nobody is left to face MS alone.”