SVL0013

Written Evidence submitted by MS Society

About the MS Society

The MS Society is the UK’s largest charity for people living with multiple sclerosis (MS). We’re here for everyone living with MS – to provide practical help today, and the hope of a cure tomorrow. We play a leading role in research. We fight for better treatment and care.

We let people with MS know they’re not alone, and offer advice and support to help them manage their symptoms.

There are 130,000 in the UK living with MS. Everyone with MS is considered clinically vulnerable to COVID-19 according by UK Governments, and some are clinically extremely vulnerable (CEV).

Summary

The past ten months have shown us that people most vulnerable to Covid-19 need additional employment protection and financial support, safe access to essential products, including groceries and medical supplies, and clear advice communicated well. Under no circumstances should individuals be forced to take potentially enormous risks, or bear prejudicial costs, due to the health conditions and disabilities that make them more vulnerable to Covid-19.

The shielding programme was incredibly important and offered vital support to those at risk from COVID-19, including many living with MS. However, we believe many vulnerable people suffered as a result of the Government’s often poor and confusing communications regarding shielding and risk.

Long delays to guidance, last-minute announcements and often a failure by politicians to mention shielding people at all, left many feeling forgotten and fearful. Others who were told they were at increased risk felt they had no alternative but to unofficially shield, without access to the support being on the formal shielding list provided. Later, when the Government warned the risk of Covid-19 had increased without resuming the shielding programme, people felt completely unprotected. This submission argues that lessons must be learnt, with the needs of vulnerable people front and centre of communications and policy decisions moving forward.

Furthermore, Government has failed to provide millions of those on legacy benefits with the same £20 a week uplift given to Universal Credit (UC) recipients at the start of the pandemic. This means that many disabled people – many of whom are clinically vulnerable to Covid-19 – did not have the financial support needed to handle the additional costs of the pandemic. As a result, a recent survey has found that two-thirds of disabled claimants have had to go without essential items, such as food, heating, or medication, during the pandemic[1].

Throughout the pandemic, the MS Society has been meeting regularly with a group of charities representing clinically vulnerable and CEV groups. In coalition we have been highlighting common issues and themes coming from our communities with Government departments and Ministers.

1. Identification of vulnerable people

As has been well-documented by the National Audit Office’s (NAO) recent report, ‘Protecting and supporting the CEV during lockdown’, there were challenges identifying and contacting CEV people at the start of the pandemic because of the limitations of national datasets.

We heard from CEV people with MS who were not initially advised to shield. We also heard of people being advised to shield when they did not fit the criteria. This caused distress and confusion. With the shielded patients list, it was essential that doctors were asked to supplement the national data sets and identify patients that should be added to the list based on their clinical expertise. Without MS neurologists having done so, many more people with MS could have been missed from the shielding list, potentially putting them in danger.

Recommendation: Government must ensure there is adequate data being collected across health and care, to quickly and accurately identify and communicate with specific cohorts of people in a future pandemic in moments or civil emergency.

Recommendation: Government must learn from this experience to ensure everyone with MSs, and their unpaid carers, are identified and receive a vaccination invitation in group 6.

2. Communication with the clinically vulnerable

Our community has found the distinction between the two categories of risk, confusing and unclear. At many points, the Government has failed to provide clear information and advice to the clinically vulnerable about their relative risk and how they can protect themselves against Covid-19, beyond telling them to be particularly careful.

This left many people with MS feeling like they had no choice but to follow shielding advice to protect themselves. This may not have been necessary and could have been detrimental to their general health and wellbeing. One survey of 3,131 people with MS showed, that as of the end of May 2020, 34% of total respondents with MS (3,131) said they didn’t leave the house at all. 23% of respondents had received a letter or message from the NHS advising them to shield. However, of the 77% of total respondents didn’t receive a shielding letter or message, 30% of them told us they do not leave the house at all[2]. This indicates that many people with MS were shielding regardless of official advice to do so. Based on insights from our community throughout the last year we believe many continued to do so, without access to the support being on the formal shielding list provided.

There are significant physical, mental and emotional implications of shielding for our community. We know from our research that staying active makes a huge difference for people managing their MS. There is also strong and growing evidence that highlights the negative mental health impacts of shielding, with 35% of CEV people reporting a worsening in their mental health since receiving shielding guidance over the course of the first lockdown[3].

Government can learn lessons from people shielding when they needn’t have. It has had unquantifiable effects on mental health and on society. Information on relative risk for the clinically vulnerable and how they should protect themselves remains lacking, and this has contributed to increased anxiety among many in our community.

Recommendation: Government should anticipate the unintended consequences of information vacuums on individual behaviour, and target public health messaging at specific groups of people to enable them to understand their risk and take proportional steps to protect themselves.

3. Communication of changes to shielding guidelines

Communication regarding vulnerable groups often felt lacking or belated. The Government failed to directly address CEV and clinically vulnerable groups at key points throughout the year, leaving many people with MS feeling forgotten or uninformed. On numerous occasions, the Prime Minister and other Government ministers made significant announcements to the public that had life-changing implications for CEV people, but without mentioning them at all.

This made vulnerable people feel forgotten and anxious and meant some were unaware of the changes in guidance designed to protect them until shielding letters later arrived informing them. There were also occasions where updated guidance for the CEV was published less than 24 hours before changes in the rules came into effect, or even published after the rules had changed. This eroded trust in Government messaging among some people in our community and among other vulnerable groups.

Recommendation: The Department of Health and Social Care (DHSC) should establish a robust plan on how to communicate clearly, quickly and consistently with CEV people to ensure that people are clear if they need to shield, why they need to shield, how to shield and the support available to them.

4. Engagement with patient support organisations and charities

Patient support charities are uniquely placed and trusted to deliver health information to our communities. We have been receiving large volumes of inquiries related to shielding and Covid-19 more broadly over the last year. Throughout this period, together with other charities, we have been calling on the UK Government to more actively engage with us to help answer our communities’ questions and address their concerns. This has included a number of joint letters that have been issued to various Government ministers, which have largely gone unanswered. For example, CEO’s from charities representing vulnerable groups, including the MS Society, have twice written to the Chancellor of the Exchequer (30th July and 14th October), for assurances for financial support for vulnerable people. No response has been received for either letter.

Engagement with patient organisations has improved somewhat in recent months, with consistent meetings having taken place between our organisations, DHSC and the Deputy Chief Medical Officer. These conversations are mutually beneficial and we want to see regular communication with all relevant government bodies and departments regarding the pandemic’s impact on vulnerable people continue. By providing us answers to the questions our vulnerable communities need, we can reduce the demand for information on clinicians who are under incredible pressure and continue to protect those vulnerable to Covid-19.

This is especially clear with regards the vaccination programme. While we are pleased with the progress of the programme, we are concerned that gaps in information and communication with the vaccine-priority groups we represent, regarding eligibility, efficacy and delivery, could undermine success of the vaccination programme in these groups.

Recommendation: Government ministers and departments must work more closely with charities who represent vulnerable groups and meet regularly with them to address issues impacting on their communities.

Recommendation: Learn lessons about the need for comprehensive and clear communications with clinically vulnerable and CEV people, and the patient support organisations that represent them, in order to maximise their engagement in the vaccination programme and confidence in the Covid-19 vaccine.

Recommendation: All Government policy and guidance should be developed with consideration for the needs of people vulnerable to Covid-19, and into the future, other pandemics/civil emergencies. Expertise in the needs of people with long term health conditions, disabilities and those in older age needs to be represented at senior level in Government informing these decisions.

5. Practical protection and support

Protecting households of the vulnerable

Throughout the pandemic, when CEV people have been advised to shield, their household members have not been advised or enabled to do so. Shielding guidance told people they should try and socially distance from household members in order to reduce the risk of catching the virus from them. Clearly, this is completely impractical for families to follow, let alone family members providing personal care or parents of shielding children. 

More could have been done at an earlier stage to better enable household members of CEV to protect their family member/s. Not doing so has put some CEV at an increased risk of infection throughout the pandemic. The Government should have encouraged employers to allow employees living with a shielding person to work from home where possible, and made household members of shielding people eligible for furlough leave where it was not possible. To further protect shielding people, personal protective equipment (PPE) to unpaid carers should have been provided at the start of the pandemic, rather than belatedly, and Carer’s Allowance must be increased across all of the UK.

6. Access to food and essential items

In the first lockdown we received many calls to our helpline from shielding people who were struggling to access home deliveries of food, medicines and essential items, at a time when they were advised not to go into shops. In April 2020, charities representing vulnerable groups, led by the MS Society, wrote to the Secretary of State for Food, Environment and Rural Affairs (DEFRA). This led to regular and constructive engagement between DEFRA officials and charities representing vulnerable groups to address the barriers to accessing food safely.

As the pandemic went on, we saw inquiries to our helpline regarding trouble accessing food reduce, and DEFRA and national supermarkets took positive action to reduce some of the barriers to people accessing food safely. However responsibility for supporting shielding people became more devolved to local authorities, so it is difficult to measure how well vulnerable groups are now supported. Increased costs vulnerable people are facing as a result of the pandemic in order to receive food and essential items remains an outstanding issue. People are paying up to £7 for supermarket deliveries of food and there are minimum spends in order to secure a delivery in the first place. Supermarkets must remove these barriers to vulnerable people accessing food.

The Government has learned lessons about how to ensure vulnerable people can safely access food and essentials in an emergency and how to communicate the support available to make sure as many people are able to access support if they need it. We agree with the NAO on the need to review how well local authorities have supported shielding people.

7. Access to health services

A survey by the UK MS Register survey found almost a third (32%) of people with MS (out of a total 1,137 respondents) had healthcare appointments cancelled or delayed in June, and a further 7% cancelled or delayed appointments themselves due to concerns about infection. People who were shielding were significantly more likely to say they had healthcare appointments delayed or cancelled than those who were not shielding.

Disruption to health and care services has been unavoidable during peaks of the pandemic and the cancellation of face to face appointments were often to protect people from Covid-19. However, more could have been done to communicate with patients that at higher-risk to Covid-19 about exactly what was being done to reduce risks of infection when they come into a clinical setting, to reassure them not to delay seeking help when they needed it.

It also would have helped to have communicated more directly and honestly with people whose appointments or treatment were delayed or cancelled, about what they could expect and sources of support in the meantime. Some parts of the country did communicate well with patients and we were pleased to see NHS England recently publish guidance, ‘Good communication with patients’ in January 2021, based on consultation with patients and patient organisations[4].

8. Financial support for vulnerable people - furlough

Under the tiered system, even in areas of very high risk, the Government did not advise the CEV on the shielding list to stay at home, as was advised in previous national lockdowns. Instead, the advice was to remain home where possible, and that employers should do everything they can to support those people to work from home.

Where people on the shielding list could not work from home, they were told they could still go to their place of work, and that employers must ‘do the right thing’ in ensuring the workplace was Covid-secure. No financial support was offered which left those people with no choice but to return to the workplace, whether they felt safe or not.

People on the shielding list should continue to be eligible for furlough during this time so they have the choice to remain at home. At the very least they should continue to be eligible for Statutory Sick Pay (SSP) purely on the grounds they are on the shielding list.

9. Financial support for vulnerable people – welfare

The DWP has implemented a number of temporary changes in response to the Covid-19 pandemic, including an increase of £20 a week for both UC and Working Tax Credit, due to end in April 2021. The £20 a week increase in UC acknowledged the inadequacies of the current welfare provision. This increase has not been applied to legacy benefits, such as Employment and Support Allowance.

The majority of people on legacy benefits are disabled people. A recent survey by the Disability Benefits Consortium found that 82% of disabled claimants have had to spend more money than they normally would during the pandemic. This is most commonly due to greater food shopping and utility bills, and as a result of these increased costs, two thirds (67%) of disabled claimants have had to go without essential items, such as food, heating, or medication, during the pandemic. Almost half (44%) of disabled claimants have been unable to meet financial commitments such as rent and household bills. 

Since the uplift to UC was introduced, we have been calling for the £20 uplift to be extended to those on legacy benefits. This has cross-party support, and has been recommended by national bodies and groups, as well as a petition signed by over 120,000 people. Despite that, the Government has not changed its position or acknowledged the discrimination the lack of uplift causes those on legacy benefits.

Recommendation: The Government must extend the £20 a week uplift to Universal Credit past the April 2021 cut-off date and extend to legacy benefit recipients.

February 2021