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Thousands of disabled people in year-long backlog to access neurology appointments

OVER 10,000 disabled people living with a neurological condition have been waiting over a year for specialist neurology and neurosurgery services, new data reveals.

The NHS England stats, analysed by the Neurological Alliance – a coalition of more than 80 organisations including the MS SocietyParkinson’s UK and MND Association – show the number of people waiting over a year for a neurology and neurosurgery appointment has risen by 7892% in just 13 months.

In February 2020, 38 people had been waiting for a neurology appointment, while 169 had been waiting for a neurosurgery appointment for more than a year. By the end of March 2021, more than 150,000 people were waiting to be assessed by a specialist consultant, and more than 60,000 people were waiting for a neurosurgery appointment. Of these, over 10,000 people have been waiting for over a year.

Around 1 in 6 people live with a neurological condition in the UK, and an estimated 600,000 are diagnosed with a neurological condition each year. Without access to specialist expertise, many have been left unable to get a diagnosis, without life-changing treatment, and in need of crucial day-to-day support.

Cherelle Gardiner, 38, from London, was diagnosed with relapsing MS in 2009. Despite experiencing adverse effects after starting a new disease-modifying treatment (DMT) just before the pandemic hit, she was left unable to speak to her neurology team for months.

She said:

“Starting a new treatment was a huge decision for me as a few years before, I’d had a really bad experience with a DMT, which gave me adverse effects and left me depressed. But just before the pandemic, I was told I had new lesions on my brain, so I nervously decided to try another one. I went for an injectable DMT, but the first experience of taking the treatment was horrendous, and I was so scared to do it again. Every day I’d be in tears trying to get in touch with my MS consultant or someone from my MS team – I lost count of the number of times I tried to call and email. In the end, I took myself off the treatment as I just didn’t know what to do. I still don’t.

“I get that the pandemic caused unpredictable circumstances, but so does MS and other health conditions, and we should never be put on pause when it comes to our health. Being left with absolutely no support, care or communication when I needed it the most has left me with PTSD.”

Delayed diagnosis and referral has concerning implications for access to treatment and support. Specialist MND centres saw a 30-50% reduction in referrals in 2020, while Deep Brain Stimulation (DBS) – the main type of surgery suitable for some people with Parkinson’s – rates were down from an average of 240-260 new procedures per year to 135.

Elsewhere, a recent survey from The Royal College of Speech and Language Therapists looking at people’s experiences of accessing speech and language therapy during the first UK-wide lockdown (March-June 2020) found over a third with neurological conditions (41%) had no treatment at all during the lockdown, resulting in 40% saying their communication and swallowing had got worse.

In April 2021, the Neuro Life Now app, which conducted a snapshot survey of more than 200 people with neurological conditions, found that nearly 1 in 5 had experienced delays to their care in the past 4 weeks. This group were more likely to have required emergency support and report feeling anxious or hopeless.

Last week, Baroness Gale, co-chair of the All-Party Parliamentary Group on Parkinson’s, led a debate in the House of Lords to ask the Government what plans they have to assess the impact of Covid-19 on people living with neurological conditions and their access to health and care services, and what steps they intend to take to restart specialist neurology services.

Joining the debate, Lord Shinkwin referred to his own personal experience of being diagnosed with a life-threatening compression of the brain stem. He said:

“Had I been one of the more than 150,000 who are waiting for a neurology appointment in March this year, 10,000 of who have been waiting for more than a year, it would have been too late.”

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

“The impact of the pandemic on people with neurological conditions has been enormous, and these waiting times are another clear indication of that. Thousands of people are being left in the dark waiting for support, whilst their condition may be changing or even progressing. Many health and care professionals are overstretched and need support themselves. This is just the tip of the iceberg – the long impact of delays and disruptions to care will be felt for years to come.

“It is vital the Government work with NHS England and NHS Improvement, commissioners, healthcare professionals, professional bodies and patient groups to develop and implement a clear strategy to restore services to their pre-pandemic levels as soon as possible.”

Fredi Cavander-Attwood, Policy Manager at the MS Society, said:

“To learn that over 10,000 people are having to wait over a year for neurology or neurosurgery appointments is staggering. MS can be painful, relentless and disabling, and not accessing support can be the difference between managing symptoms and the progression of disability.

“For years, neurology services have been over-stretched and underfunded, but the pandemic has left them in a state of disarray– with more people than ever going without vital care and support. While healthcare professionals have been working hard to resume disrupted neurology services, the Government must urgently take action to stop thousands more being denied care.”

Laura Cockram, Head of Policy and Campaigns at Parkinson’s UK, said:

“Deep Brain Stimulation (DBS) has historically been under-resourced, but the pandemic has added fuel to the fire by exacerbating the waiting times for those currently eligible. DBS is not a cure for Parkinson’s, but it can certainly be life-changing. It has the power to drastically improve physical symptoms, including tremors and rigidity and reduce the amount of medication someone takes every day. But importantly, DBS is only effective if performed in a limited window. So the fact that there were nearly 50% fewer new procedures in 2020 is deeply concerning compared to previous years.

“It’s devastating that the enforced delays have meant that some people will no longer be suitable, having missed their opportunity to benefit from this treatment. We cannot let coronavirus further impact the health of those living with other long-term conditions like Parkinson’s by being slow to restart life-changing, but time-sensitive, procedures like DBS.”

The Neurological Alliance are calling for NHS England and NHS Improvement to work with healthcare professionals, professional bodies, patient groups and people with neurological conditions to develop and implement a clear strategy to restore services to their pre-pandemic levels as soon as possible.

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