Covid-19: People with Neurological Conditions

Baroness Gale Excerpts

Thursday 27th May 2021 Grand Committee

Asked by

[Baroness Gale]

To ask Her Majesty’s Government what assessment they have made of the effects of the COVID-19 pandemic on people with neurological conditions and their access to health and care services; and what steps they will take to restart specialist neurology services.

[Baroness Gale (Lab) [V]]

My Lords, I am pleased to have the opportunity to debate this matter today in order to hear the Government’s plans to restart specialist neurology services after the devastating pandemic. I thank all Members who are taking part and I look forward to their contributions.

I declare an interest as co-chair of the All-Party Parliamentary Group on Parkinson’s, which is the fastest growing neurological condition in the world. It is a complex and debilitating condition with no cure, so quality health and care services are vital to help people with Parkinson’s manage their condition. By quality neurological services, I mean that people should be able to access consultants, specialist nurses, physiotherapists, speech and language therapists, occupational therapists and mental health professionals. These services are also vital to people with multiple sclerosis, epilepsy, motor neurone disease, migraine and other disorders of the brain, spinal cord and nervous system that affect at least one in six people in England.

The 2019 Neurological Alliance report, Neuro Patience, described the variability of health and care services for people with neurological conditions in England. It also highlighted how overstretched the neurology workforce is and indicated that people with neurological conditions have a poorer overall experience of care than those living with other long-term conditions.

We know the pandemic has affected everyone. However, those living with neurological conditions have seen their symptoms worsen. Since March 2020, people with neurological conditions have been locked in their homes; in many cases, their physical state has deteriorated and they have been without access to the vital therapy services that help them maintain their well-being. Emerging research suggests that some people with, or recovering from, Covid-19 can experience neurological symptoms, which will add extra pressure to the already overstretched services.

Like many health charities, Parkinson’s UK conducted a survey of how the pandemic affected their supporters in 2020. One in four said that the Covid restrictions negatively affected their mental health and a third said that it impacted their physical health. Over a third of people with the condition experienced increased symptoms including slowness of movement, stiffness and fatigue, and over a quarter experienced increased tremor and sleep problems. One in 10 people with Parkinson’s also reported having distressing hallucinations. Family members, friends and carers, particularly spouses or partners of people with Parkinson’s, were also affected by the pandemic. Nearly seven in 10 took on more caring responsibilities, and almost half of the people with Parkinson’s receiving social care support at home received less care during the pandemic.

In fact, recent NHS data shows an increase in waiting times for access to specialist services for people with neurological conditions. The data shows that more people are being referred for specialist care by their GP. However, it also shows there has been a significant increase in the number of people waiting more than a year for treatment.

Neurological services are struggling to cope with the number of patients. Can the Minister say what progress is being made by the NHS England/NHS Improvement neuroscience transformation programme, provide details about how it will improve care for the one in six people living with a neurological condition and tell us when it might conclude? What proportion of the extra funding awarded to the NHS has been allocated for neurological services to restart? How will the Government address the workforce issues?

Will the Minister also commit to introducing a national strategy for neurorehabilitation, with strong leadership in the NHS to drive forward this vital work? We know from NHS data that access to neurosurgery —and, in the case of Parkinson’s, deep brain stimulation, or DBS—was impacted by the pandemic last year. On average, 20 new DBS procedures were completed per month in England in 2019. However, that fell to around 135 new procedures in total for the whole of 2020. DBS can be a life-changing treatment for some people with Parkinson’s. It is not a cure, but it can drastically improve the physical symptoms of the condition and reduce the amount of medication a person takes each day.

Further delays to the restart of DBS and other neurosurgery could be disastrous for people with Parkinson’s and those with other neurological conditions. Even a few months delay can mean that some people are no longer suitable for DBS or other neurosurgical procedures. I understand that the NHS March guidance said that elective procedures should be restarted, and payments were introduced to incentivise integrated care systems to schedule them. Can the Minister explain what this will mean for the restart of neurosurgical procedures, in particular DBS for people with Parkinson’s?

Although I am sure that many will welcome the move to virtual healthcare appointments to maintain the well-being of patients, NHS data shows that there are significant variations in access to these appointments based on where one lives. While many people with neurological conditions welcome these virtual appointments as they reduce travel time to hospital, not everyone benefits from them. Some may be unfamiliar with the technology or find that it does not work. Charities have heard reports of connectivity issues, and people may not have the necessary equipment to take part in these virtual appointments. Others with neurological conditions have also shared their concerns about the security and privacy of virtual appointments.

People with neurological conditions and professionals have said that a phone appointment, for instance, cannot accurately assess people with movement-related symptoms. Many professionals have said that it is harder for them to assess how the individual’s carer is managing, and I know from Carers UK’s insight and research that carers have faced increasing pressure during the pandemic. For treatments such as speech and language, physiotherapy or where a professional manipulates muscles or joints, face-to-face appointments are the most effective. It is therefore crucial that patients have the right to choose how they interact with their health professionals. Can the Minister give a commitment to ensuring that patients are given that right?

I have posed several questions to the Minister, the answers to which people living with neurological conditions are desperate to hear as they look to the future. I hope that the Minister can respond to them today. However, to explore them further, would she be prepared to meet with me and others with an interest in this subject? I look forward to the Minister’s response.