People with neurological conditions lose out due to COVID-19 delays

Image of brain scan to show People with neurological conditions lose out due to COVID-19 delays

In a recent survey of more than 1600 people with neurological conditions, over 7 in 10 respondents said they had experienced delays to their medical appointments as a result of COVID-19.

This means people with long-term neurological conditions could be missing out on the vital assessments and treatment they need to help them stay well.

In a new survey by the Neurological Alliance of 1672 people, surveyed between 9 and 20 June, the charity found that:

  • Over 7 in 10 people (72%) who responded said one or more of their NHS appointments had been delayed; in almost half of cases (47%) the cancelled appointment was with a neurologist.
  • Almost 4 in 10 people (39%) due to see a neurologist were not given a future date for their delayed appointment.

The survey also revealed that almost a half of people surveyed (49%) had found the Government’s advice on shielding to be unclear, almost a third (31%) had experienced difficulty in accessing their normal food supplies and around a quarter (23%) had had difficulty obtaining their regular medication.

Many neurologists, specialist nurses and allied health professionals have been redeployed during the COVID-19 pandemic. Because of this and the risk of infection, almost all routine face-to-face neurology appointments have been delayed or cancelled. For many people with neurological conditions this has meant they have not had the same level of support, for example to prevent emergency admission to hospital, or had the therapies they need to manage their symptoms and/or reduce the progression of the condition. Others are struggling to get rehabilitation, which could leave their mobility and motor skills permanently affected.

For some, missing out on the right treatment at the right time can have life-changing consequences. For example, advanced drug therapies for Parkinson’s only have a short window during which they can be effective, so some people could already have lost their opportunity to have a life-changing therapy. Certain Disease Modifying Treatments for multiple sclerosis, which reduce relapses and slow the progression of the condition – in some cases delaying the need for a wheelchair- have also been delayed or cancelled in some NHS clinics.

Around 1 in 6 people now live with a neurological condition in England. By the end of 2020 it is estimated that, even without a second spike in COVID-19, there could be around 225,000 people on the waiting list for neurology appointments and 58,000 on the waiting list for neurosurgery appointments.

The Neurological Alliance has published its report Restarting Services for People with Neurological conditions to address the situation. It sets out key recommendations for the Government, NHS England and NHS Improvement, commissioners, providers and clinicians.

Georgina Carr, Chief Executive Officer of the Neurological Alliance, which represents more than 80 neurological organisations, said: “While health and care professionals have done all they can to retain some contact with people with neurological conditions during this crisis, our survey clearly shows that people with suspected and confirmed neurological conditions are being left in complete limbo whilst frontline services have been diverted to treat COVID-19 patients. This just isn’t acceptable and means thousands of people are not getting the life-changing treatment and support they so desperately need.

“People with neurological conditions must not be left in the dark any longer. We urge NHS England to set out its plans to ensure an immediate restart of services as soon as it is clinically safe to do so”

Dr Ralph Gregory, Consultant neurologist and Trustee of the Neurological Alliance, said: “With many neurology services already in a precarious position, this pandemic has created the perfect storm. The time people with neurological conditions have to wait to see a neurologist was already much too long due to the historically inadequate numbers of neurology consultants in the UK, compounded by the recent difficulty recruiting doctors from overseas.

“To cope with the impact of COVID-19, all non-emergency hospital services were shut down so the back log has increased further. Patient concerns about visiting hospitals and the reduced capacity caused by the requirement for PPE, social distancing and cleaning, have further impacted on the capacity available. Many people with neurological conditions will not be receiving the specialist support they require.”