Today the Neurological Alliance launch the results of their recent survey of more than 1,600 people with neurological conditions, with over 7 in 10 respondents reporting delays to their medical appointments as a result of COVID-19. The Down’s Syndrome Research Foundation represent the issues facing those with DS to the Alliance. Many of the issues highlighted in our Covid-19 survey have also affected others with different conditions e.g. the effects of ‘shielding’ on healthcare and mental health.
The delays in appointments mean people with long-term neurological conditions could be missing out on the vital assessments and treatment that help them to stay well and keep mobile.
The results, along with the powerful first-hand testimony from people living with neurological conditions, show clearly the huge impact COVID-19 has had on neurological treatment, care and support.
1,672 peopleⁱ took part in the survey between 9 –20 June 2020. The charity found that:
72% of respondents reported having had their NHS appointments delayed – 4 in 10 people didn’t know when until.
Almost 4 in 10 people (39%) due to see a neurologist were not given a future date for their delayed appointment, leaving them in complete limbo.
19% of respondents felt lonely, 1 in 10 felt hopeless.
The survey also revealed that 49% of people had found the Government’s advice on shielding to be unclear, 31% had had difficulty accessing their normal food supplies and 23% had experienced difficulty in 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 people with neurological conditions this may mean they do not have the same level of support to help prevent their emergency admission to hospital. Others are struggling to get the rehabilitation they need, which could leave their mobility and motor skills permanently affected.
For some people with a neurological condition, missing out on the right treatment at the right time can also 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 (DMTs) for multiple sclerosis (MS), 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 Englandⁱⁱ. 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 appointmentsⁱⁱⁱ. Without finding new and creative ways of working and additional capacity in neurology services, people with neurological conditions are bound to experience further, potentially life-changing, delays.
Georgina Carr, CEO 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. They must apply the same leadership they have shown to restarting cancer and fertility services, to the restart of NHS neurology services.”
Dr Ralph Gregory, Consultant Neurologist and Trustee of the Neurological Alliance, said:
“My colleagues and I have seen the devastating impact this pandemic has had on both patients and NHS staff. Patients concerns about going into hospital, along with reduction in capacity in neurology services, means that many people with neurological conditions may not be getting the specialist support they need.”
Dr Elizabeth Corcoran, Chair of Down’s Syndrome Research Foundation UK and Member of the Alliance, said:
“Families have been shielding and living in a state of fear and uncertainty due to confusing and unclear instructions from the NHS about who should shield. For Down’s syndrome, a lack of research into immune health has meant it was assumed they are not at risk. Siblings may have also struggled as some parents have spent the much of the day caring for their medically fragile child’s needs.
The unforeseen consequences of the lock down on those with neurological conditions, their carers and family members are only beginning to be understood and services must have a robust plan to anticipate and respond to problems in a timely manner.”
You can read the report here.
A technical briefing on the survey is available here.
In light of the reports findings, more than 40 patient organisations have written to Sir Simon Stevens, Chief Executive of NHS England and NHS Improvement, urging him to set out plans to restart neurology services. You can read the letter here.
ⁱ Between 9 and 20 June 2020, the Neurological Alliance conducted a survey of 1672 people, who between them had 62 different neurological conditions, in addition to some people still awaiting a diagnosis.
ⁱⁱ Neurological Alliance (2019) Neuro Numbers
ⁱⁱⁱ Medbelle, NHS Waiting List Estimation Tool