1 May 2020

Neurological Alliance submission to the Women and Equalities Select Committee Inquiry

into the Impact of COVID-19 on Protected Groups

The Neurological Alliance is a coalition of more than 80 organisations working together to transform

outcomes for the millions of people in England with a neurological condition – a disorder of the

brain, spinal cord or nerves. Neurological conditions can have a wide range of causes including

genetic and environmental factors or be caused by traumatic injury or infection. The Neurological

Alliance (hereafter called the Alliance) campaigns for high quality care and support to meet the

individual needs of every person with a neurological condition, at every stage of their life. Our work

is shaped by the experiences of people with neurological conditions and aims to address the causes

of poor care. According to the latest estimates, the total number of neurological cases in England has

now reached 16.5 millioni.

The Alliance represents charities and groups with a very wide spectrum of neurological conditions –

some conditions affecting thousands of people, some with rare neurological diseases just affecting a

few. Neurological conditions can be grouped into four main types:

Sudden onset – including traumatic brain or spinal injury, meningitis, stroke, Guillain-Barre

Syndrome

Intermittent – includes epilepsy, migraine and cavernoma

Progressive – including Parkinson’s disease, motor neurone disease and ataxia

Stable with changing needs – including Tourette Syndrome, narcolepsy and transverse

myelitis

A list of the Alliance’s members is available here.

Many neurological conditions fall within the definition of disability used in the Equality Act 2010 i.e.

people with “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect

1

on [their] ability to do normal daily activities.”. Neurological conditions already have a significant

impact on the quality of life of those who have them. The Alliance’s 2019 Patient Experience ii found

that, of the respondents who rated the impact their neurological condition has on their quality of

life, 46% said it impacted on their quality of life to a great extent, while a further 35% said it

impacted it to a moderate extent. Likewise, of the respondents who rated the extent to which their

condition affects their day to day activities, 42% said it affected them to a great extent while 36%

said it affected them to a moderate extent.

Even without the additional concerns posed by COVID-19, people with neurological conditions

face many day-to-day challenges.

We have consulted our membership in putting together this response.

We would like to provide our submission to the Inquiry in the following broad categories

1. People with serious neurological conditions not being on the extremely vulnerable list,

thereby reducing the support and protection they need

2. Delays or problems in accessing routine primary care appointments and receiving regular

prescription medication

3. Cancellation or delays to NHS secondary or tertiary outpatient appointments

4. Concerns around people with neurological conditions being treated for COVID-19 in hospital

5. Early discharge from rehabilitation, reduced packages of rehabilitation support and a decline

in access to rehabilitation in the community

6. People with some neurological conditions not being able to access the food they need

7. People with neurological conditions not receiving alternative support or the information

they need to help them self-manage

8. The impact of isolation and social distancing on the mental health and wellbeing of people

with neurological conditions

9. Potential implications of the Coronavirus Act for people with neurological conditions and a

serious mental health condition

10. The possible impact of social care easements under the Coronavirus Act 2020

11. Unreasonable expectations being placed on unpaid carers

2

12. Potentially differential and more severe impacts on protected groups, such as BAME groups,

who also have neurological conditions

13. The impact on mental health of being in a high-risk group with Do Not Resuscitate Orders

being routinely discussed with patients and their families

14. The psychological impact of people with a neurological condition in residential care homes

or at home of not being able to see loved ones

15. People being unable to get the financial support they need and facing increased financial

insecurity

16. People feeling fearful about contacting emergency services with other symptoms due to

concerns about contracting COVID-19

17. Concerns about what will happen when the lockdown is eased

1. People with serious neurological conditions not being on the extremely vulnerable list

The Alliance is very concerned, as are many of our members, that people with some progressive and

life-limiting neurological conditions, such as motor neurone disease and multiple system atrophy,

which compromise their ability to live independently, and which have a significant impact on their

health and wellbeing, were not included on the Government’s ‘extremely vulnerable’ list iii. This is

despite the fact that many people with serious neurological conditions should have been able to

benefit from ‘shielding’ and the additional services available to shielding group, such as the home

delivery of food and medicines.

The communications around the ‘extremely vulnerable’ (shielding) group as opposed to people ‘at

high risk’ was unclear at the start. It also appears that people can no longer ask to be added to the

list of those who should be shielding by contacting their GP or specialist clinician iv. Even for those

who did ask to be added to the shielding group earlier on, the Alliance has heard that this process

has had very varied outcomes. We believe that the criteria used to define the shielding group was

too narrow, adversely affecting many people with progressive neurological diseases, serious brain

injury and trauma, and rare neurological conditions.

For example, Dystonia UK have told us that people with dystonia (a neurological disorder causing

uncontrollable and sometimes painful muscle spasms), contacted the charity in the initial lockdown

3

phase as they were unsure on which lockdown instructions to follow with only a relatively few

conditions being mentioned in the shielding list. In fact, there are many forms of dystonia, and it

transpires that some people have particular types of the condition that do place them in the

vulnerable category; they have since received shielding letters. This situation applies to many other

neurological conditions. Spinal Muscular Atrophy UK also told us that many people in the

neuromuscular community were very concerned about the definition of, and practical support for,

vulnerable / extremely vulnerable people. The same applies to those with motor neurone disease.

We have also heard from members that there has been some confusion over the actual shielding

dates for people who have received NHS letters telling them to shield – some say ‘12 weeks from the

date of the letter’, whilst others understand that the 12 weeks started in March so that shielding

applies until the end of June, regardless of the date of the letter. Some are only just receiving their

letters now - maybe because they have only just been added to the list - while others received them

over a month ago.

The Alliance believes that many people with neurological conditions such as motor

neurone disease, multiple systems atrophy and spinal muscular atrophy and other

neuromuscular disorders, in addition to brain injury and rare neurological disorders,

should have been included in the list of those who are ‘extremely vulnerable’ and that

this list was drawn up based on too narrow a set of criteria.

Better data sets are needed to establish the size of the population with neurological

disorders who should be classified as extremely vulnerable, so appropriate services can be

provided to such groups during this COVID-19 crisis - and in the event of another

pandemic.

2. Delays or problems in accessing routine primary care appointments and securing regular

prescription medication.

A significant proportion of GP and nurse appointments in primary care have been delivered through

telemedicine during the COVID-19 crisis, as opposed to being carried out face to face, but the

Alliance is concerned about how this is affecting people with some long-term neurological conditions

who may require repeat prescriptions and/or face to face support. Telemedicine can present access

4

problems for those who do not have a computer or mobile phone, for example older age groups or

those who may require specific communication support as a result of their neurological condition,

leading to inequality of access to even the more limited health and care services available at present.

While people on the extremely vulnerable list are shielding and arrangements are being made for

medicines to be delivered to their homes, Alliance members have informed us that those who are

not on the extremely vulnerable list, but who are still at a high risk, have had problems with home

deliveries of their medication, as some pharmacies are no longer offering this service. Homecare

delivery companies have also struggled to meet increased demand and/or prioritised their services,

meaning many people with neurological conditions have faced delays in receiving their medicines.

For some, this may mean that they cannot manage their relentless and exhausting symptoms such

as chronic pain, or it puts them at risk of their condition getting worse.

The GoodSam NHS Volunteer Responder Scheme is now up and running and offering delivery

services of food and medication, originally based on eligibility criteria v which included people

‘shielding’, people ‘registered disabled’ and people over 70 with underlying health conditions.

Thankfully, it has now been clarified that the GoodSam scheme applies to all people who are

considered to have a disability under the Equality Act, which is a big step forward. The lack of

consistency and clarity regarding the criteria for accessing home deliveries of medication and food

was very confusing in the first few weeks of the pandemic, causing much anxiety for many people

with neurological conditions. The fact that the NHS lists on its website a separate ‘high risk ‘group

that does not need to shield, but who should not go out unless it is essentialvi , including people with

“a condition affecting your brain or nerves (such as Parkinson's disease, motor neurone disease,

multiple sclerosis, or cerebral palsy)” , was/is also potentially confusing.

Separately, the point was made to the Alliance, that volunteers are unlikely to have the authority to

collect Class C medications from pharmacies.

Not all people with neurological conditions can access telemedicine and this can lead to

inequality of access to medical services; measures must be put in place to reflect this to

avoid further disadvantaging protected groups.

5

Better Government communication is needed around who is ‘extremely vulnerable’

and/or ‘disabled’ under the terms of the Equality Act 2010, as both groups now qualify for

Government and/or GoodSAM community support; this will avoid confusion amongst

those people with neurological conditions and their carers about who can access

additional services during the COVID-19 pandemic.

3. Cancellation or delays to NHS secondary or tertiary outpatient appointments, including new

diagnoses of neurological conditions

It is important to acknowledge that notwithstanding the COVID-19 pandemic, significant variations

exist in the care of people with neurological conditions For example, the 2019 National Neurological

Patient Experience Surveyvii showed that people living in the most deprived areas experience the

longest waits for specialist services, compared to those living in less deprived areas. More generally,

the Survey found that people with neurological conditions face long waiting times to access

specialist services and often experience a lack of personalised care. In addition, evidence derived

from the Survey,viii, indicates a possibly significant gender gap in care: women are more likely than

men to report visiting their GP five or more times before being referred to a neurologist (43% of

women compared to 27% of men). In addition, a higher proportion of female respondents compared

to male respondents reported waiting a year or more to see a neurologist after referral (32% of

women compared to 20% of men).

Only skeleton neurological services remain operational in many secondary care settings. Again, many

outpatient services are now being provided via telemedicine, and we have heard of situations where

some nurses are single-handedly running outpatient clinics, which otherwise would have been

staffed by much larger multidisciplinary teams. This is clearly going to have an impact on the health

and wellbeing of people with neurological conditions who may not be able to access their routine

treatment and care. It is important that an impact assessment is made of how these skeleton

services are affecting the health and outcomes of people with neurological conditions and what

measures are being put in place to ensure that these scaled back services remain in operation for

the minimum length of time possible. Specifically, the Alliance is hearing instances of:

6

Pressure to cancel neurosurgery and thrombectomy appointments.

People with multiple sclerosis experiencing significant delays to the initiation of disease

modifying therapies (DMTs) and/or the administration routine infusions, in some parts of

England. This could have a significant impact on the progression of their condition and

potentially lead them to have a relapse - also causing additional stress and anxiety to patients.

However, the MS Society has told us that some delays are clinically justified, where treatment

cannot, for example, be started because it risks compromising the immunity of the patient,

thereby putting them at increased risk of catching COVID-19. The Alliance does not, however,

believe that it is reasonable to cancel or postpone vital infusion services beyond what is clinically

safe and where the long-term health and wellbeing of patients is at risk. The Association of

British Neurologists has produced welcome guidance with partners such as the Royal College of

Physicians (RCP), to provide support to their members and patients on how best to safely

reconfigure services during the pandemicix.

People with motor neurone disease having routine proceedings postponed indefinitely e.g.

gastric feeding and ventilation. There is no reason why non-invasive ventilation (NIV) services

should not be kept running so long as suitable infection control measures are taken in outpatient

departments. People with motor neurone disease are also very concerned that they will not get

ventilation support, in the event that they contract COVID-19 and need to go to hospital.

Epilepsy charities reporting that outpatient services have also now been reduced to a skeleton

service. More specifically Epilepsy Action have told us that:

o Some people with suspected first seizures are experiencing delays to receiving an accurate

diagnosis and subsequent treatment plans (medication) in the light of greatly reduced

epilepsy services in some hospitals and Trusts. While teleclinics are suitable for many

existing epilepsy patients, diagnosis and, in particular, more complex diagnosis can be

challenging to deliver through teleclinics, an issue also of concern to neurologists.

o There is reduced capacity for, and availability of diagnostic testing, including

electroencephalograms (EEGs) which are sometimes needed to assist in accurate epilepsy

diagnoses. This both presents a potentially increased risk to people with suspected first

seizures in the short term, and potentially means there will a backlog of patients requiring

these services in the longer term – meaning further subsequent delays to accurate diagnoses

when services start to return to normal. More generally, there are a number of other

7

interventions that cannot be delivered through teleclincs, or during periods of reduced

service provision, including Vagus Nerve Stimulation (VNS) adjustments and changes to

medications, with associated increased risk.

o Large-scale redeployment of epilepsy specialist nurses to general medicine and COVID-19

wards, combined with staff sickness, is causing challenges for some people with epilepsy.

Epilepsy specialist nurses (ESNs) are often the first point of contact for people with epilepsy

who require advice or support related to their condition. Some hospitals and Trusts currently

have no ESN contacts for people with epilepsy with answerphone messages stating that

services are not available at present, leading to potential increased risk. While some regions

are continuing to provide a reduced ESN telephone services or SOS services, these are

suboptimal options and could present a potential increased risk to people with epilepsy. The

crucial role of epilepsy specialist nurses in caring for and supporting people with epilepsy is

set out in a recent Epilepsy Action reportx.

The Alliance has heard of an instance where a non-mobile person waiting eight months for an

outpatient rheumatology appointment - for suspected auto-immune disease with neurological

deficits - has been told that their neurology appointments have now been cancelled due to the

COVID-19 outbreak, leading to a decline in their condition. This person is also totally dependent

on a carer who is also on the extremely vulnerable list. To date we have been told that no help

has been received concerning the delivery of their repeat medication, although if the carer

cannot shield themselves, both will be at risk.

Dystonia UK tell us that one of the main treatments for dystonia is botulinum toxin injections,

usually administered around every 12 weeks in clinics. While it is understandable that, because

of patient safety and redeployment of staff in the NHS, most of these clinics have been

cancelled, this does raise several concerns:

o Not receiving their botulinum toxin injection, can leave dystonia patients in pain and with

more disabling symptoms. No alternative treatments have been offered while most of the

clinics are closed. While many outpatient appointments are being delivered via phone or

video consultations at this time, because this treatment involves injections, this is,

understandably, not possible.

8

o People with dystonia already often experience long delays in accessing treatment in over-

subscribed clinics, but now, during the pandemic, there is an even wider variation in care

with very few clinics still operating in some locations, while none are operating in others,

leading to significant variations in care.

o Communication of appointments being cancelled has often happened just a day or two

beforehand (possibly due to the speed of the spread of the virus), leaving patients worried

and uncertain about future appointments and left to find ways to cope without their normal

appointments and care.

o There is uncertainty about the resumption of clinics and how this will be managed. As

mentioned, these services are normally over-subscribed and the expectation is that there

will now be an increase of patients as clinics seek to clear the ‘back-log’ built up during the

lockdown.

o All of the above can cause significant mental distress to patients.

As mentioned above concerning epilepsy, the Alliance has heard, more generally, of instances

where people have been given a new diagnosis of a progressive neurological condition over the

phone, which would normally be done face to face. Being given the diagnosis of a potentially

life-limiting or degenerative condition on the phone, when complex, important and life-changing

information is being shared with patients, is far from ideal. In addition, healthcare professionals

who are delivering such diagnoses are unlikely to have received training and support to deliver

such a diagnosis over the phone or via videoconference. Ideally all people with new neurological

symptoms should be able to access primary and secondary care neurological services in a timely

fashion.

Data needs to be collected on NHS neurology service cancellations and of the numbers of

patients affected.

It now appears that a significant percentage of people with COVID-19 in ITU (maybe up to 35% of

cases) have some neurological symptoms, including being at an increased risk of stroke and

functional neurological problemsxi. This must be reflected in service provision post-COVID-19, in

terms of commissioning adequate neurological health and care services, particularly

rehabilitation services.

9

Finally, the Alliance has heard that in some outpatient clinics that are running, there is little or

no PPE for clinicians, thereby putting frontline staff, people with neurological conditions and

those who support them at risk of catching COVID-19.

Data must be collected and published about key changes to neurology services, including

cancellations, and the numbers of patients affected.

It is important that an impact assessment is made of how these skeleton services are

affecting the health and outcomes of people with neurological conditions and what

measures are being put in place to ensure that these scaled back services remain in

operation for the minimum length of time possible.

4. Concerns around people with neurological conditions being treated for COVID-19 in hospital

Where people with neurodevelopmental conditions (NDCs) such as autism require hospital

treatment for COVID-19, they may find the disruption to their usual routine particularly challenging.

They may struggle to communicate with professionals wearing PPE which restricts their ability to

communicate via facial expressions and/or sign language.

Special provision should be made for people with neurodevelopmental conditions who are

being treated in hospital for complex procedures.

5. Early discharge from hospital neurorehabilitation and a decline in access to rehabilitation in

the community.

Rehabilitation is critical for the long-term recovery of people who have, for example, had a stroke or

brain injury, as well as minimising the impact of a progressive neurological condition. We are aware

of instances where people who have been receiving a programme of neurorehabilitation in hospital

or via speciality neurological centres, were sent home early, potentially affecting the long-term

progression of their condition and their best possible chance of recovery. Physiotherapists are,

understandably, rarely able to visit people in their own homes because of the risk to people with

progressive neurological conditions or traumatic brain injury of catching COVID-19, meaning many

rehabilitation services are being put on hold. Some physiotherapy and speech and language therapy

10

sessions are, however, being successfully delivered via telemedicine. Cancelled rehabilitation

services are likely to lead to greater NHS and social care costs being incurred in the longer term.

The Sue Ryder charity have told the Alliance that more people are being referred to them for

neurorehabilitation as CCGs are trying to free up hospital beds.

Pandemic planning should ideally include setting up contingency measures so people

requiring urgent neurorehabilitation are still able to access that, for example at non-

COVID-19 treating NHS sites.

Data must be collected about the provision of rehabilitation over time, in particular, how

provision may have changed or been reduced/cancelled as a result of COVID-19.

6. People with some neurological conditions not being able to access the food they need

The Alliance is aware that a significant proportion of people affected by neurological conditions have

had difficulties in accessing food supplies as they are not on the Government’s extremely vulnerable

list, unless they have another qualifying condition such as cancer. As mentioned above, people with

neurological conditions, who are considered to be disabled within the scope of Equality Act 2020,

can now qualify for voluntary support in the community via the GoodSAm NHS Volunteer Scheme,

but whether this is happening on the ground needs to be closely monitored. This may also not apply

to all people with neurological conditions.

The Alliance and 23 other charities have written to the Secretary of State for the Environment, Food

and Rural Affairs and major supermarket groups to ask that measures are put in place to assist

people with long term health conditions and disability to shop more easily in supermarkets and

some progress is being made in this area.

Epilepsy Action have told us that their helpline received a number of calls from people with epilepsy

who cannot drive due to their condition, who have been unable to access food delivery services due

to a combination of not being classified as ‘extremely vulnerable’ (in the shielding group) and the

lack of general supermarket delivery slots. The new GoodSAM NHS Volunteer Responder scheme is

11

now open to a wider group of vulnerable people, but the problem persisted for a number of weeks

before this potential solution was rolled out.

We have also been told by Tourettes Action, for example, that some people with movement

disorders, such as Tourette Syndrome (TS), have faced difficulties, even discrimination, when doing

their supermarket shopping. People with TS and autism have anecdotally been ‘hassled’ in stores by

shoppers fearful of people with tics or those unable to manage social distancing rules.

More generally, not being able to access adequate food supplies and having to queue outside

supermarkets will be very difficult for most people with neurological conditions unless friends or

family can help. Waiting for long periods of time outside a supermarket may also simply be

impossible for those who provide informal care for someone with a neurological condition.

Eating well is essential for staying well and it is important that health inequalities do not

mean that people with neurological conditions are further disadvantaged because of

COVID-19 when it comes to being able to eat a balanced and healthy diet.

7. People with neurological conditions not receiving alternative support or the information they

need to help them self-manage.

Because of the COVID-19 outbreak some people with neurological conditions are not able to access

the face to face support in the community normally provided by the NHS, mental health services or

the charity sector e.g. local head injury support groups. While charities are facilitating virtual support

groups, not everyone has access to the technology that makes this possible, potentially leaving them

feeling more socially isolated.

As has been well documented, many charities have had to furlough staff at this time, which has led

to some of the services they provide to the people no longer being possible, while at the same time

calls to their helplines have gone up many times. Charities are trying to redeploy staff to meet the

extra demand on their helplines, but this is not always possible for smaller charities, so this vital

support work, indirectly supporting the NHS, is sometimes being badly affected. In addition, many of

our members who provide such services are facing unprecedented falls in their income due to

12

fundraising events being cancelled or postponed, shops closing and the economy experiencing huge

decline more broadly.

The helpline and virtual services being provided by charities and other health

organisations to their beneficiaries during the COVID-19 pandemic - many of whom may

be feeling very isolated at this time, and which directly or indirectly relieve pressure on

NHS frontline health and care services - need to be recognised and supported We urge the

Government to ensure financial support is available for local and national organisations

who provide vital information and support to protected groups with neurological

conditions under the Equality Act.

8. The impact of isolation and social distancing on the mental health and wellbeing of people

with neurological conditions

Neurological conditions relate to the brain and nervous system. So, the interaction between physical

needs and broader emotional, cognitive and mental health needs is complex. Changes in the brain

can directly affect a person’s emotions, cognitive abilities and executive functioning. Conversely,

depression or anxiety can coexist alongside neurological symptoms. People’s mental health

difficulties often have an impact on their neurological condition, triggering or exacerbating it. In

other cases, apparent mental health issues may reflect an undiagnosed neurological condition. For

people with functional or dissociative conditions ‘neurological’ symptoms are not caused by

structural changes in the brain. Providing accurate diagnosis and effective treatment for emotional,

cognitive or mental health needs in this context is challenging, but essential.

Some neurological conditions significantly affect the cognitive function of those affected, for

example autism, making it harder for them to understand the need for social distancing. If people

are living on their own with conditions such as multiple sclerosis and Parkinson’s, anxiety around

securing their regular medication and food supplies, and not having as many, if any, regular visitors

because of the need for social distancing, is almost certain to be having a significant psychological

impact in terms of engendering a sense of isolation and loneliness.

13

It is also known that many people with epilepsy, for example, face an increased risk of poor mental

health, including anxiety and depression. This is likely to be exacerbated by prolonged periods of

social distancing and self-isolation especially when combined with a lack of access to ESN support

(mentioned above). Stress and anxiety can be a seizure trigger for some people with epilepsy,

potentially contributing to worsening seizure control. Consideration should be given to potential

prioritisation in accessing mental health services for all people with neurological conditions at

increased risk of mental health challenges when these services begin to resume. Concerns have also

been raised by people with epilepsy around additional risks associated with leaving the house for

mandated activities, such as essential shopping or to exercise, due to other members of the public

being less likely to be provide practical help and support if a person with epilepsy was to have a

seizure in a public setting. Fear of contracting coronavirus through person-person contact in a

situation such as this could lead to no seizure first aid being provided, leading to an increased

potential risk of harm.

Finally, those in older age groups, who may not have the technology that allows them to have virtual

contact with their health and care professional or family and friends, are likely to be experiencing

this even more acutely. The roll out of services that rely more heavily on telemedicine and support

must take into account the fact that not everyone is comfortable with, can access or even use such

technology. It is important to recognise this in order that health inequalities are not widened

because of a lack of access to technological/digital means of communication.

People with long-term physical health conditions, including neurological conditions

whether progressive or not, are more likely to experience mental health problems, so

developing a programme of mental health support for all people with long-term

conditions who are forced to self-isolate and self-distance going forwards is an urgent

priority.

9. Potential implications of the Coronavirus Act for people with neurological and serious mental

health problems

The Coronavirus Actxii has allowed for a relaxation in the provisions of the Mental Health Act. Before

the Act came into force three people were needed to agree on the detention of a person in a secure

14

setting (an approved mental health professional (AMHP) and two doctors). However, under the new

Act the number of doctors required falls to one and the appeals system is effectively suspended.

People with long term conditions, particularly autism and learning disability, are already

disproportionately represented in inpatient units which are often unsuitable for their needs,

resulting in many being held there in the long-term. The Alliance would be very concerned to see

any rise in the number of people with neurological conditions being held in secure mental health

settings under the new provisions of the Coronavirus Act 2020.

The review of the Coronavirus Act 2020 required after six months must include a review of

the new procedures around detention of individuals under the Mental Health Act

10. The possible impact of social care easements under the Coronavirus Act 2020

Some of the Alliance’s member organisations are particularly concerned about the easements to the

Care Act 2014, published by the Government on 31 March (updated on 1 April). The new guidance

states:

“Local Authorities will not have to carry out detailed assessments of people’s care and support needs

in compliance with pre-amendment Care Act requirements. However, they will still be expected to

respond as soon as possible (within a timeframe that would not jeopardise an individual’s human

rights) to requests for care and support, consider the needs and wishes of people needing care and

their family and carers, and make an assessment of what care needs to be provided.xiii”

Local authorities who become unable to comply with the Care Act (applying to England only) will

now not have to carry out the same level of assessment and planning, meaning that some people

with newly diagnosed neurological conditions, who are seeking social care support for the first time,

may be less likely to have their needs met. Local authorities who cannot meet all needs will be able

to prioritise the “most pressing needs” over others, resulting in some people with neurological

conditions receiving less support at a time when they need it the most. We have heard that seven

local Authorities have now implemented easements (Sunderland City Council, Warwickshire County

Council, Staffordshire County Council, Birmingham City Council, Solihull Council, Derbyshire County

Council and Coventry City Council), but the Care Quality Commission will be monitoring the level of

care these local authorities are providingxiv.

15

It is essential that the impact of the above easements to the Care Act 2014 as set out in

the Coronavirus Act 2020, and how they are affecting the provision of social care to people

with neurological conditions, is monitored. Data should be collected on how these

easements are affecting the social care services being delivered by local authorities and (ii)

the number of people affected with (ii) which specific long-term conditions or other needs.

11. Unreasonable expectations being placed on unpaid carers

Some carers of those with neurological conditions may themselves have health problems, but they

are having to take on more responsibilities during the COVID-19 pandemic, for example queuing for

long periods at the supermarket and pharmacy for medicines, in addition to their normal caring

roles, potentially exposing them to a greater risk of catching COVID-19. In the UK, 58% of carers are

women and 42% are menxv. Whilst the GoodSAM NHS Volunteer Responders Scheme provides for

the delivery of shopping, medication or other essential supplies to someone who fulfils the eligibility

criteria, it is not clear that a household can benefit from this service where the primary carer is not

eligible even though they may themselves be at higher risk for health reasons. Unless GPs are

triaging their practice lists, such carers are not always receiving the help they so urgently need. They

may remain ‘hidden’ and isolated in their community and become increasingly exhausted as

community support groups (such as for people with head injuries or learning disabilities) have been

stopped for the time being.

The impact on carers of those with neurological and other-long term conditions, more of

whom are women, must be monitored and additional support provided where necessary,

including Personal Protective Equipment where needed.

12. Potentially differential and more severe impacts on protected groups, such as BAME groups,

who also have neurological conditions

During the coronavirus epidemic, it appears that people from black, Asian and minority ethnic

(BAME) backgrounds have been particularly badly affected. A report on the first reported 5578

patients critically ill with COVID-19 19 in England, Wales and Northern Ireland by the UK’s Intensive

Care National Audit and Research Centrexvi for those whose ethnicity was known, suggests that 34

16

per cent were from BAME backgrounds, despite the fact that BAME groups make up only 14 per

centxvii of the population of England and Wales, for example. This is an example of a significant

health inequality for a protected group under the Equality Act due to factors that must be

determined through rigorous research (socio-economic, clinical etc). The Alliance welcomes the fact

that the Government has agreed to carry out a review into why ethnic minorities are at greater risk

of Covid-19.

Men are also disproportionately affected by COVID-19 compared to womenxviii, including in terms of

mortality rates, especially in older age groups, thought to be related to a number of factors such as

the differential functioning of the immune system, smoking rates and hormonal influences.

The relationship between the incidences of COVID-19 and gender needs to be further

explored in those with neurological conditions to ensure that any precautions that can be

taken if the UK, should face a similar future pandemic with similar characteristics, are put

in place to safeguard protected groups.

13. The impact on mental health of being in a high-risk group with Do Not Resuscitate Orders

being routinely discussed with patients and their families

There has been extensive media coverage on the shortage of ventilators needed to treat seriously ill

COVID-19 patients in intensive care, in addition to early guidance provided to clinicians on decision-

making when there is an inadequate supply of ventilators for potentially competing patientsxix. There

have also been anecdotal stories around Do Not Resuscitate Orders being inappropriately discussed

with families when people with COVID-19 enter hospital, and one instance reportedly concerning

adults in the community with autismxx.

More specifically, one member of the Alliance, Autistica, has reported that many of their members

have expressed concerns about the reported use of Do Not Attempt Cardiopulmonary Resuscitation

(DNACPR) decisions on people with Neuro Developmental Conditions (NDCs), as well as NICE critical

care guidelines which advocated using the Clinical Frailty Scale (CFS)xxi to assess patients with COVID-

19 as qualifying for critical care. As the CFS criteria refer to the ability of people to carry out certain

tasks without support, this may unintentionally have led to the inclusion of otherwise healthy people

with NDCs in DNACPR assessments; information about a person’s normal abilities when it comes to

17

speech and mobility should go with them into hospital so that incorrect assessments are not made.

NICE has since updated its guidance saying that clinicians should be aware of the limitations of using

this tool as the sole assessment of frailty, that it has not been validated as a tool for people under

the age of 65xxii, and that the CFS should not be used with people with stable long-term disabilities,

learning disabilities, autism or cerebral palsy xxiii. NHS England’s mental health and learning disability

leads have written to primary care trusts, but this situation must be closely monitored.

The discussion around DNACPRs may have adversely affected the psychological wellbeing of people

with progressive neurological conditions and even led them not to seek help with COVID-19

symptoms for fear of the consequences, only adding to the psychological impact of living with a

long-term neurological condition. The effects of this needs to be rigorously studied where evidence

can be collected as groups with protected characteristics should not be made to feel second class

citizens in the health and care system.

We are therefore pleased to see that in the DHSE’s latest guidance on adult social carexxiv they

acknowledge that “It is unacceptable for advance care plans, including Do Not Attempt Resuscitation

orders, to be applied in a blanket fashion to any group of people, and the CQC have been urgently

contacting providers where this practice has been brought to their attention.” This guidance must

continue to be circulated in health and social care settings. Nonetheless the Alliance is hearing from

members of 'forced' and 'cajoled' DNARs still being used in both care homes and the community,

despite the guidance.

In any event, people with some neurodevelopmental conditions (NDC) are at greater risk of

developing mental health difficulties. Many people with NDCs, for example, struggle with anxiety,

managing uncertainty and social isolation, and the current situation is exacerbating those significant

challenges for them and their families/carers.

14. The psychological impact of people with a neurological disability in residential care homes or

at home not being able to see loved ones.

Given the highly infectious nature of COVID-19, the family members of loved ones in hospitals and

residential care with COVID-19, and more generally, have not been able to visit them, including

18

those with progressive neurological conditions such as motor neurone disease. That must be an

incredibly lonely experience for the person in the home and deeply upsetting for family members. If

sufficient PPE had been available this might not have been the situation and, going forwards,

sufficient stocks of PPE should be built up by care homes, working with the Department for Health

and Social Care, to ensure that some visits are permitted.

Some people with epilepsy and/or learning difficulties and other additional needs, living in

residential settings, find social distancing difficult or not possible. Some families with these and other

complex neurological conditions, have taken their loved ones home to keep them safe from the

additional risks of coronavirus infection. While this means they are not separated from them for long

periods, decisions to remove people from supported accommodation does risk reducing

independence and skills development in some groups; carers may also become overwhelmed

without any additional support available at home.

Separately, we are pleased that the DHSE has now clarified that visits at the end of life are

important, both for the individual and their loved ones and they should continue, and they have set

out guidance for care homes on the steps they should take to ensure appropriate infection control

during such visitsxxv.

It is essential that visits by family members to residential care homes to see loved ones

with neurological conditions at the end of their life can continue during the COVID-19

pandemic – with provision made for other visits where at all possible, subject to strict

infection control measures.

15. People being unable to get the financial or employment support they need or facing increased

financial insecurity.

In the long-term, the existing high rate of unemployment amongst people with neurological

conditions is likely to rise, causing financial insecurity and a potentially knock-on effect on their

physical and mental health. For people with some neurological conditions, adapting to the changes

in employment patterns and social interaction that may arise, even once the COVID-19 crisis has

passed, may, especially for those with NDCs, be just as challenging as adapting to the current

19

lockdown itself. We also still know little about the potential lasting neurological effects of COVID-19.

On the other hand, for some people with neurological conditions, the now recognised opportunities

and potential for homeworking may open up new employment opportunities.

On a very practical matter, Epilepsy UK tell us that their helpline is taking calls from people with

epilepsy who are unable to reapply for their driving licenses as the DVLA are currently not processing

the necessary paper forms.

The Alliance recommends that homeworking should be recognised as a preference/the

norm for those with a disability that limits their ability to travel to work.

16. People feeling fearful about contacting emergency services with other symptoms due to concerns about contracting the virus

We are aware that some people with a neurological condition, or experiencing new neurological

symptoms, are not attending hospital, including during emergencies. This seems to be due to a fear

of contracting COVID-19 once admitted, or due to concerns about the unnecessary utilisation of

services during the pandemic.

For example, some neurologists have reported concerns around people with epilepsy who have

been advised to attend emergency clinics, who are not doing so in the light of concerns about the

virus and strong government messaging around staying at home and protecting the NHS. Feedback

from patients has been that they would rather wait until normal epilepsy services are resumed to

attend these clinics. There are also anecdotal concerns about reduced numbers of people contacting

GP surgeries or presenting at A&E with suspected first seizures; this poses a significant risk,

particularly in those who are seemingly not entering a care pathway.

The latter is perhaps understandable, given delays to treatment and care, cancellation of routine

appointments and significant challenges in accessing GP services (as outlined previously). However,

we are also aware of delays to seeking support resulting in increased co-morbidities when people

are eventually admitted. This can mean increased complexity and severity of a condition, such as

stroke, thereby decreasing the chance of survival and increasing the likelihood of longer-term

complications.

20

We urge the Government to support health and care professionals to maintain non-

COVID-19 related services as the best possible levels through appropriate provision of PPE

and testing in order to avoid long-term harm to patients seeking help for neurological

disorders. We are pleased to see that the NHS is now looking to prioritise and reintroduce

some non-COVID-19 services (Letter from Simon Stevens 30 April 2020); this should

include neurology services which must not be left behind.

17. Concerns about what will happen when the lockdown is eased

There is concern for many people with neuromuscular conditions, such as spinal muscular atrophy

(SMA) and muscular dystrophy, as well as other neurological conditions, about what will happen

when restrictions are eased, furlough schemes finish and people are encouraged to go back to work.

Whether or not they have been officially classified as vulnerable, many feel that the continued risk

for them will be higher than for the average person and they will not feel safe to go ‘back to normal.’

There is concern about the lack of understanding of this risk for people with neuromuscular

conditions and fear about the impact and potential consequences of this, logistically, financially and

emotionally (work, school etc), both for children and adults with SMA and their families and carers.

The Neurological Alliance should like to thank Autistica, Dystonia UK, Epilepsy Action, the

Greater Manchester Neuro Alliance, the MS Society, Spinal Muscular Atrophy UK , Tees

Valley, Durham and North Yorkshire Neurological Alliance and Tourettes Action for the

additional information they contributed to this submission.

21

iReferences

Neurological Alliance website, accessed here https://www.neural.org.uk/about-neurological-conditions/ 24 April 2020ii Neurological Alliance, National Neurological Patient Experience Survey 2019, Accessed here https://www.neural.org.uk/patient-experience-survey/, 24 April 2020iii Public Health England, COVID-19: guidance on shielding and protecting people defined on medical grounds as extremely vulnerable, Accessed here https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19, 17 April 2020 (updated)iv Gov.UK website Get coronavirus support as a clinically extremely vulnerable person:https://coronavirus-vulnerable-people.service.gov.uk/not-eligible-medical, Accessed 1 May 2020

v NHS Volunteer Responders/Royal Voluntary Service website, Accessed here https://volunteering.royalvoluntaryservice.org.uk/nhs-volunteer-responders-portal/isolating, 24 April 2020vi NHS Who's at higher risk from coronavirus, Accessed here https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk-from-coronavirus/whos-at-higher-risk-from-coronavirus/, 1 May 2020.viiNeurological Alliance, National Neurological Patient Experience Survey 2019, Accessed here https://www.neural.org.uk/patient-experience-survey/, 24 April 2020 viii Neurological Alliance, Is there a gender gap in access to and experience of neurological services? 20 March 2020, Accessed here https://www.neural.org.uk/news-is-there-a-gender-gap-in-access-to-and-experience-of-neurological-services/, 24 April 2020ix Catherine J Mummery and Christopher M Kipps on behalf of the Association of British Neurologists, UK neurology response to the COVID-19 crisis, Clinical Medicine 2020 Vol 20, No 3 May 2020, Accessed here file:///C:/Users/judya/AppData/Local/Microsoft/Windows/INetCache/Content.Outlook/IF3M59U4/abn%20covid%20(002).pdf, 1 May 2020.x Epilepsy Action and University of Sheffield, Epilepsy Specialist Nurses The Evidence (ESPENTE): a Systematic Mapping Review, July 2019. Accessed here, https://www.epilepsy.org.uk/sites/epilepsy/files/research/The%20ESPENTE%20Study%208.7.19%20Version%201.pdf, 1 May 2020. xi Ling Mao; Huijuan Jin; Mengdie Wang et al, Neurologic Manifestations of Hospitalized Patients With Coronavirus Disease 2019 in Wuhan, China, JAMA Neurol. Published online April 10, 2020. doi:10.1001/jamaneurol.2020.1127. Accessed here https://jamanetwork.com/journals/jamaneurology/fullarticle/2764549, 1 May 2020.xii The Coronavirus Act 2020, Accessed here http://www.legislation.gov.uk/ukpga/2020/7/contents/enacted, 24 April 2020.xiii DHSC Guidance Care Act easements: guidance for local authorities, 1 April 2020. Accessed here https://www.gov.uk/government/publications/coronavirus-covid-19-changes-to-the-care-act-2014/care-act-easements-guidance-for-local-authorities, 24 April 2020.xiv Care Quality Commission, The Care Act and the ‘easements’ to it, 30 April 2020. Accessed here https://www.cqc.org.uk/guidance-providers/adult-social-care/care-act-easements-it, 1 May 2020.xv Carers UK, Facts and Figures, Accessed here https://www.carersuk.org/news-and-campaigns/press-releases/facts-and-figures, 24 April 2020xvi Intensive Care National Audit and Research Centre, Report on COVID-19 in critical care 17 April 2020, Accessed here https://www.icnarc.org/Our-Audit/Audits/Cmp/Reports, 24 April 2020xvii Gov. UK Population of England and Wales, Published 1 August 2018, Last updated 14 May 2019, Accessed here https://www.ethnicity-facts-figures.service.gov.uk/uk-population-by-ethnicity/national-and-regional-populations/population-of-england-and-wales/latest#by-ethnicity, 24 April 2020xviii Intensive Care National Audit and Research Centre, Report on COVID-19 in critical care 17 April 2020, Accessed here https://www.icnarc.org/Our-Audit/Audits/Cmp/Reports, , 24 April 2020xix NICE, COVID-19 rapid guideline: critical care in adults, 20 March 2020, updated 9 April 2020. Accessed here https://www.nice.org.uk/guidance/ng159, 24 April 2020.xx BBC website, Coronavirus: Autistic support group ‘told it needed DNR orders’ 9 April 2020, Accessed here https://www.bbc.co.uk/news/uk-england-somerset-52217868, 24 April 2020xxi NICE, Clinical Frailty Scale, Accessed here https://www.nice.org.uk/guidance/ng159/resources/clinical-frailty-scale-pdf-8712262765, 24 April 2020

xxii NHS Specialised Community Frailty Network website. Clinical Frailty Scale. Accessed here https://www.scfn.org.uk/clinical-frailty-scale , 24 April 2020xxiii NICE updates rapid COVID-19 guideline on critical care, 25 March 2020, Accessed here https://www.nice.org.uk/news/article/nice-updates-rapid-covid-19-guideline-on-critical-care, 24 April 2020xxiv DHSC and CARE COVID-19: Our Action Plan for Adult Social Care, 15 April 2020, Accessed here https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/879639/covid-19-adult-social-care-action-plan.pdf 24 April 2020xxv DHSC and CARE COVID-19: Our Action Plan for Adult Social Care, 15 April 2020, Accessed here https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/879639/covid-19-adult-social-care-action-plan.pdf 24 April 2020