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People with neurological conditions facing delayed or cancelled treatments

People living with neurological conditions, including MS, are experiencing delays to their medical appointments because of the COVID-19 crisis.

A recent Neurological Alliance survey of more than 1,600 people found:

  • more than 7 in 10 (72%) said one or more of their NHS appointments had been delayed
  • and in almost half of cases (47%) the cancelled appointment was with a neurologist (a specialist)
  • almost 4 in 10 (39%) due to see a neurologist were not given a future date for their delayed appointment
  • nearly 1 in 4 (23%) had experienced difficulty in obtaining their regular medication

Missing out on life-changing treatment

Around 1 in 6 people now live with a neurological condition in England.

By the end of 2020 it's 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.

Georgina Carr, CEO of the Neurological Alliance, which represents more than 80 neurological organisations, said the survey shows people are being “left in complete limbo”.

She added: “People with neurological conditions must not be left in the dark any longer.”

Dr Ralph Gregory, Consultant neurologist and Trustee of the Neurological Alliance, said: “Many people with neurological conditions will not be receiving the specialist support they require."

What we know about MS and appointments

Early data from the UK MS Register survey found 32% of people with MS had had appointments cancelled and delayed in June.

Our medical advisers stress the importance of attending appointments with healthcare professionals, or seeking help if you feel seriously unwell. The consequences of not getting regular or emergency healthcare can be very serious for people with MS.

You should still contact your MS team if you need them, for example:

  • if you have signs of a relapse
  • if you go to hospital for any reason (even if you’re not admitted)
  • or you’re considering any changes to how you take your DMT.

In many cases it might be possible to replace a face-to-face meeting with a telephone appointment.

You're not alone

We're here for you. If you’re worried about your MS and coronavirus and want to chat to someone, call our MS Helpline on 0808 800 8000. We’re here Monday to Friday, 9am to 7pm except bank holidays.

You can also sign up to our new Keep in Touch service, for a weekly catch up with one of our friendly volunteers.