Thousands waiting over a year for vital neurological support


The number of people waiting over a year for vital neurology appointments continues to rise as a result of COVID related delays and cancellations. Latest figures from NHS England and NHS Improvement and analysed by The Patient Experience Library  show a further 5% increase from March to April 2021 in the number of people waiting for a neurology appointment or treatment on the NHS, with 2500 people having waited a year or more.  The news comes as the waiting list for NHS hospital treatment in England hit a record high of 5 million people in April.


This follows similarly stark figures from March 2021 highlighted by The Neurological Alliance, and is one important indicator of the pressure on services.  


While the pandemic continues to be brought under control in the UK, the longer-term impact on health and care services and people with long term conditions is likely to be felt for years to come.  


Rachael’s story 


Rachael who lives with primary progressive multiple sclerosis (MS) contacted an MS specialist nurse in February 2020 after experiencing increased symptoms. She was told she needed another MRI scan and an appointment with a neurologist to see if she was eligible to go on a disease modifying treatment (DMT) for the first time. Rachael has now been waiting over 16 months for these appointments: 


“Everything about my MS just got a lost worse from Christmas 2019. I started getting pains in my chest which developed into the ‘MS hug’. I had increased spasticity, my fingers and hands started to lock more than normal, and even my blood pressure sky-rocketed. I managed to get a call with my MS nurse in February 2020. She said I needed to have an MRI to see if I had more new lesions and, if I did, I could be eligible for DMT Ocrevus. I was also told I’d be given a new consultant neurologist appointment, but 16 months on and I’ve had neither.  


“I spoke to the MS nurse again in April this year. I don’t want to chase her as I know how much pressure she is under, but I’d lost my dog suddenly and the shock and sadness made my MS worse. The nurse said she’d go back and request it again. Getting an MRI would mean an awful lot as I’ve started to feel so low. I’m shutting myself off from people as I just don’t want to talk about my MS getting worse.” 


Rachael’s story was also featured on BBC news today.


The effects of the pandemic on people with neurological conditions and access to neurological health and care services was the focus of a recent debate in the House of Lords. Peers from across the political spectrum supported calls from the Alliance and the National Neuroscience Advisory Group (NNAG) for Government to set out a clear plan to restore and rebuild neurological services. 


Urgent action and clear plan needed 


Georgina Carr, Chief Executive of the Neurological Alliance, said: 


“Every month we’re seeing more evidence of the enormous impact the pandemic continues to have on people with neurological conditions. While appointments and procedures were delayed or cancelled, some people’s conditions may have changed or even deteriorated.  


People with neurological conditions and healthcare professionals need urgent action and a clear plan to restore services and drive down waiting times. We need urgent collaboration and investment across the sector to restore services to pre-pandemic levels as soon as possible.  


Going forward we need a national plan for neurology led by the NHS focussed on addressing pre-existing issues that have been exacerbated by the pandemic. These include workforce shortages, a lack of integration of mental health and neurology services and persistent health inequalities facing people with neurological conditions.”