Written evidence from MS Society (DEG0150)

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.

About the response to this inquiry

The response to this inquiry is based on existing MS-specific data collected by the MS Society, as well as recent interviews with people with MS. All quotes and case studies in the text have been told to us by people with MS. Names and identifying features have been removed to protect privacy. We welcome the opportunity to respond to this inquiry, at a time when many disabled people will need support to find and retain employment more than ever.

Summary

Multiple sclerosis (MS) is the most common disabling neurological condition affecting young adults. More than 130,000 people in the UK have MS[i], the equivalent of one in every 500 people in the UK.

MS can be relentless, painful and exhausting. It’s a condition which damages nerves in your body, making it harder to do everyday things like walk, talk, eat and think. Symptoms can fluctuate, making life unpredictable. They can include loss of balance, stiffness, spasms, speech problems, fatigue, pain, bladder and bowel, and vision problems. Living with MS is expensive. It costs, on average, an extra £200 a week to live with a neurological condition like MS.[ii] We estimate that 130 people are newly diagnosed each week with the condition – totalling 6,700 people each year.[iii] Some people with MS will need social care and welfare support to continue to live well independently.

Many people with MS experience their first symptoms during the peak of their working lives, in their 20s and 30s. However, 8 in 10 people with MS retire within 15 years of being diagnosed, which means leaving work earlier than the state pension age and becoming economically inactive. While people with MS often say they leave work due to the severity of their symptoms, it is the attitude of unsupportive employers, and a lack of understanding of a fluctuating condition such as MS which means they leave work earlier than they should. This has a significant effect on the financial and mental wellbeing of people with MS, especially if they rely on benefits for their main income.

According to an MS Society survey in 2019, the rate of employment for people with MS is 41%, which is lower than the disability employment rate. But for people with progressive forms of MS, the rate is even lower, at 17%. We therefore urge the Committee and the Government to listening closely to the experiences of people living with MS when making interventions aimed at addressing the Disability Employment Gap.

Our research shows that leaving employment and applying for benefits has a negative economic impact on people with MS. Fewer than 1 in 10 people with MS who are not receiving any benefits say they are struggling on their current household income, whereas that proportion doubles for people with MS receiving non-PIP benefits (likely including out of work benefits). As a very small number of disabled people who claim Employment and Support Allowance leave the benefit each year and return to employment, this negative economic impact is unlikely to improve for most disabled people who become economically inactive.

This submission argues that the new Disability Unit (DU) in the Cabinet Office should oversee a more holistic approach to reducing the Disability Employment Gap (DEG) and ensure that a cross government approach is made to ensure positive outcomes for disabled people. The unit must ensure that disability is considered in every government policy, and in order to reduce the DEG, disabled people require support in a number of areas, and the co-operation of a number of departments. For example, the Department for Business Energy and Industrial Strategy (BEIS) and the Department for Work and Pensions (DWP) can work on improvements to Access to Work (ATW), and on providing better information for employers; the Department for Transport (DfT) and DWP can collaborate on improving the mobility of disabled people; BEIS and the Treasury can take charge of changing the jobs market to improve the number of good quality part-time and flexible jobs; and the Ministry of Housing, Communities and Local Government (MHCLG) will need to address the unmet need for accessible housing. The Government’s upcoming Disability Strategy provides an opportunity for progress to be made against these issues, and we encourage the Work and Pensions Select Committee to work alongside other committees to scrutinize this work.

There are many reasons for the disability employment gap, including why disabled people struggle to move from being on benefits to full or part time employment. The current one size fits all approach linked to benefits precludes a holistic approach to tackling complex barriers to employment faced by people with MS and other disabilities. Instead, a local approach, designed by and for local people, and delivered through a network of local agents such as a local authorities, charities and disabled people’s organizations, will be better equipped to support disabled people to find and retain employment.

More government support is needed in order to support disabled people to remain in work and help reduce the DEG. As Scope found, for every 100 disabled people getting into work, 114 leave work[1], while surveys of our community indicate that of those who receive support to stay in work, the majority receive it from their employer. Less than a third of people who say they need support to remain in work receive it from government sources.

Conversely, 59% of people who received support to find work received it from the Job Centre[2]. Clearly, not enough people are getting support from the Government to remain in work.

There are steps that can be taken easily to rectify this, and this submission argues that DWP can do much more to help employers better understand what support schemes are available for their employers with MS to remain in work, such as raising awareness of the ATW scheme. The DWP should also consider how ATW can better support disabled people during the recruitment process, in order to remove employers’ worries over financing adjustments. Furthermore, DWP should work to change the perception that the Job Centre is only there to support people receiving benefits.

The Covid-19 pandemic has also shown that working more flexibly and working from home is possible for many places for work. While it is likely that the pandemic will see many disabled people lose their jobs (which for some people with MS, could mean never returning to employment), the Government can mitigate this by bringing in long-lasting changes to the UK jobs market, including the creation of better, quality flexible and part-time jobs, and creating the right to home working for all disabled people in jobs where this is possible.

However, considering the lack of knowledge some employers have in how to support their employees with MS to remain in work, and lack of awareness of ATW, combined with the availability in Job Centres of Disability Employment Advisers (DEAs), surely there is scope for the DWP to refocus its efforts and offer support to stay in work for disabled people who may be struggling. To help employer support disabled people to stay in work, the government should provide its response to the Health is Everyone’s Business consultation, and make the appropriate changes to Statutory Sick Pay so that it works better for disabled people and those with long-term conditions.

A National Strategy for Disabled People

The MS Society welcomes the Government’s effort to create a National Strategy for Disabled People.

Some of the issues the national strategy should include and address are:

• Enforcement of legislation to ensure barriers to employment and independent living are removed
• Better financial support for disabled people, both in an out of work
• Inclusive transport
• A social care system that supports the needs of working age disabled people
• Better provision of accessible housing in both rural and urban areas
• Improvements to social attitudes to disability

Key Recommendations:

Recommendation: The DU in the Cabinet Office should ensure that employment support for disabled people is holistic, coordinating across Government to tackle barriers to employment such as housing, transport, social care and adequate financial support. It should also study the benefits of a more localised and holistic employment support from local actors.

Recommendation: The Work and Pensions Committee should work alongside other select committees to scrutinize the Government’s progress on these issues.

Recommendation: the Government should create a one-stop-shop source of information for employers to help them recruit and retain disabled employees. The information provided should be condition-specific, and the service should sign post employers to other sources of support relating to employment, welfare and beyond.

Recommendation: DWP should consider changes to Access to Work that will allow disabled job seekers and prospective employers to explore what support could be available, before an employee starts work.

Recommendation: The Government should consider giving all disabled people in applicable jobs the right to work from home.

Recommendation: To ensure the scheme is meaningful in promoting the employment and progression of disabled people, the DWP should consider whether monitoring of employment practices of employers at all levels is required, and provide more support for employers to progress within the Disability Confident scheme. The scheme can also become the site of a one-stop-shop for employers, which provides condition-specific advice on recruiting and retaining disabled employees.

Recommendation: Government must ensure that employers have better access to information on their legal duty to provide reasonable adjustments, on how to communicate this to their workforce to avoid ill feelings towards disabled employees by colleagues, and on sources of support such as ATW for adjustments that are deemed beyond reasonable. A one stop shop, provided for example through the Disability Confident scheme to any employer who needs it, can help in disseminating this information and supporting employers with reasonable adjustments.

Recommendation: Stronger laws are required to ensure that employers are obligated to provide reasonable adjustments within a specific timeframe. Employers should have to provide reasons in writing if they are not providing reasonable adjustments.

Appendix:

1. What progress has been made, especially since 2015, on closing the disability employment gap? How has this progress been made?

While there has been some progress on reducing the DEG, disabled people continue to be twice as likely to be unemployed compared to the general population, and nearly three times as likely to be economically inactive[3]. The DEG is therefore just one way of measuring how disabled people fare in terms of employment, and does not take into account the continuous high numbers of disabled people who leave the employment market entirely.

It is important to understand where the progress on the DEG is made. For people with MS, the employment picture is complicated. According to an MS Society survey in 2019, the rate of employment for people with MS is 41%, which is lower than the disability employment rate. But for people with progressive forms of MS, the rate is even lower, at 17%[4]. So while progress may be made in supporting more disabled people with milder disabilities to remain in work, those with more severe forms of MS still find their employment rate more than 4 times lower than that of the general population. It is important that the Government listens closely to the experiences of people living with MS to understand what specific interventions are needed in order to address the Disability Employment Gap.

2. What is the economic impact of low employment and high economic inactivity rates for disabled people? Are some disabled people (for example, young disabled people or people with different health conditions) more at risk of unemployment or economic activity than others?

MS is a debilitating condition in which symptoms get progressively worse over time, to the point that many people living with MS experience such severe symptoms that working becomes difficult or even impossible. Once people with MS leave employment, and start claiming benefits, the possibility of them returning to work is almost non-existent. Over 90% of people with MS who claim Employment and Support Allowance (ESA) are placed in the Support Group, and have no working requirement conditionality attached to their benefit. Under 1% of people in the Support Group leave the benefit to return to work[5].

The rate of employment for people with MS is much lower than many other long term conditions. This is because the severity of symptoms such as pain and fatigue, and the fluctuating nature of the condition make it more difficult for people with MS to continue working without appropriate statutory and employer support.

80% of people with MS retire within 15 years of diagnosis, but many people with MS want to continue to work, but are unable to because of lack of support and negative employer attitudes[6]. This means many people with MS retire well before the state pension age, and therefore miss out on years of earnings from employment, with the opportunities to accumulate assets or savings. The economic impact of high economic inactivity rates is therefore substantial both to the state, in terms of lost tax revenue and increased payment of benefits to people with MS who leave work, and to the person with MS themselves, and their family. It is a well-established and undisputed fact that disabled people have fewer savings and are more likely to live in poverty[7].

Economic inactivity can lead to negative economic impact on people with MS, because of the inadequate level of support provided by the UK welfare state. Lost or reduced earnings as a result of changes in employment is compounded by the extra costs of disability and the increased costs of care. People with a neurological condition such as MS can spend an extra £200 per week on costs related to their condition[8]. And while Personal Independence Payment (PIP) is there to help pay for some of these costs, the highest payment level in 2020 is £151.40. According to the DWP only 60% of people with MS who get PIP get the enhanced rate of the daily component and only 73% get the enhanced mobility component[9].

Out of work benefits such as ESA are a lifeline for people with MS who leave employment. The majority (92%) of people with MS who receive ESA are placed in the support group, with around 6% in the work related activity group. There is no condition-specific data from Universal Credit (UC) about the outcomes of Work Capability Assessments, so it is impossible to say how people with MS fare under UC and the equivalent work requirement groups. Out of work benefits in the UK provide a very low level of income replacement compared with other European countries[10], due to the flat rate payments. The low level of benefits available to disabled people in the UK means that the economic impact on those who are economically inactive can be deeply negative, due to the steep drop in income on leaving employment.

For those of our community who are unable to work, there should be adequate financial support, which recognises the difficulties of living for many years on benefits, particularly for disabled people with high extra costs of disability. But there should also be more support for disabled people to remain in good quality work, to avoid the financial and economic risks of economic inactivity, both for the state and for the person themselves.

3. What has been the impact of coronavirus pandemic on disabled peoples’ employment rates?

According to the ONS, the rate of disabled people in employment has been increasing over the last few years, but has fallen by 1.3% since the first quarter of the year. And while the rate of the economically inactive in the general population has remained stable during the pandemic for the general population, it has increased by 0.8% since the start of the pandemic for disabled people[11]. This shows that while the pandemic has created unemployment generally, people continue to remain economically active, working some hours or continuing to look for work, whereas some disabled people are leaving the employment market altogether. This is worrying, because it indicates that disabled peoples’ chances of finding work again once they lose it to coronavirus are less certain than those of their non-disabled peers.

In August, we asked people with MS, via the MS Register, whether and how their employment situation has changed since the pandemic started. Of those who were in employment before the pandemic, 20% had their working hours reduced (including furlough) and 5% lost their jobs. This was while the furlough scheme was still in place and employer contributions were minimal. It is likely that the rate of job losses has increased as employers were required to pay more towards their furloughed employees, and as the economic crisis deepened. The increasing rate of economic inactivity among disabled people since the pandemic started means that some of those who lost their jobs will never return to employment even if they are still capable of working.

The impact on employment rates clearly has an impact on disabled people’s financial wellbeing, as more people with MS will claim benefits, and more people with MS invariably will be struggling as their household incomes see a significant and sustained reduction.

‘I was made redundant because of the pandemic in August. Financially obviously this had a devastating impact. I’m lucky that I had earned quite a lot of money in my professional career and paid my mortgage off. But I still have to pay bills and heating and that kind of stuff. So basically I am currently living on savings which is not sustainable long term… We’ve had to sell certain bits and pieces in order to support ourselves because my salary was important. So we had to really curtail expenses and house maintenance. I am starting to make decision around where I shop and what food I buy, and in terms of heating we don’t leave the heating on, so it’s making sure that during the day just one room has heating. I never had to do that before.’

4. Where should lead responsibility for improving disabled peoples’ employment rates sit (for example, DWP, Business, Energy and Industrial Strategy; Health and Social Care)?

Currently, the responsibility for improving disabled people’s employment rates sits primarily with DWP. However, this means that employment support, for example by Jobcentre Plus, is too often aimed at people who are not working, with the aim of getting them off benefits and into work. While some support from DWP for people already in work comes from ATW, too many people in work are not aware of the support the scheme can provide, and some employers refuse to put the recommended adjustments into place even when those are part or fully covered by ATW.

Improving employment rates for disabled people must move the focus from getting people into work, and more holistically support disabled people to stay in work. It is therefore important to consider improving disabled peoples’ employment rates as a shared goal of multiple government departments, rather than one individual department.

In recognition of this, the Cabinet Office has established a new Disability Unit (DU) to oversee a more holistic approach to reducing the DEG.

Below sets out the different factors that can contribute to improvements in the DEG, and how government departments should work together to address the required changes:

• Improvements to ATW – managing the scheme should remain the remit of DWP. However, as the scheme is still not sufficiently well known, BEIS can play an important role to promote it to businesses, as well as highlight the economic case for employing disabled people.
• Better information for employers - employers need a better understanding of disability and how to support disabled employees. Some adjustments cost nothing to implement, but employers may not know to offer them if they are not familiar with the conditions that their employees are living with. Responsibility for this could rest with BEIS and DWP.
• Social care – in order to be able to work, some disabled adults require assistance in getting ready in the morning and returning home in the evening. The Department for Health and Social Care (DHSC) must ensure that working-age disabled adults’ care needs are provided for as part of any planned reform of social care so that they can continue to work and live independently.
• Housing – People with unmet need for accessible housing are estimated to be four times more likely to be unemployed or economically inactive due to disability than disabled people without accessibility needs or whose accessibility needs are met[12]. The Ministry of Housing, Communities and Local Government (MHCLG) must consider how it can improve provision of accessible housing around the country.
• Financial and employment support – UC is meant to provide support in a way that incentivises people to get back into work and to remain in employment. However, the Government’s own impact assessment has shown that UC claimants are only 3 percentage points more likely to be in work 6 months after their claim has started. DWP must assess why UC is not delivering better work outcomes for disabled people. We have also heard from disabled people that fear of losing benefits such as ESA if they take on some work or show willingness to work, is a barrier for seeking support.
• Transport – DfT must work to ensure that disabled people have access to accessible public transport to get to and from work, while DWP must ensuring that more disabled people take advantage of the Motability scheme by removing some of the barriers to participation, including costs and lack of trust[13].
• Type of available jobs – lack of good quality part-time and flexible jobs in the UK jobs market is a barrier to finding work for disabled people. Learning the lessons from the coronavirus pandemic, and in order to improve the economic recovery and disabled people’s chances of finding work, BEIS and the Treasury should take charge of reshaping the UK’s job market, encouraging more employers to advertise flexible and part-time jobs, and allow more employees to work from home.
• A local approach – Low level of movements from benefits to work experience by disabled people indicate that a centralised, one-size fits all approach, which is linked to benefits, is not working. A local approach, designed by and for local people, which looks holistically at tackling the complex barriers to employment, would be better equipped to support disabled people to find and retain employment. A network of local agents, such as local authorities, charities and disabled people’s organisations, would be better able to source personalised local support, understand the local area, and forge relationships with local employers. The involvement of disabled people in the design and delivery will create higher levels of trust, of which the DWP is lacking.

Currently, low level of movement from benefits to work experienced by disabled people may indicate that a centralised one size fits all approach, and which is linked to benefits, is not working in the way it should and precludes a holistic approach to tackling complex barriers to employment faced by people with MS, relating to the issues mentioned above. A local approach, designed by and for local people, and delivered through a network of local agents such as a local authorities, charities and disabled people’s organisations, will may be better equipped to support disabled people to find and retain employment. Local agents are better able to source personalised local support which understands the local area and can forge connections with local employers. The involvement of disabled people in designing the support, and the connection they have to local structures, rather than a centralised government department, can create higher levels of trust, of which the DWP is currently lacking. Rather than continue with the current system, albeit with minor tweaks, the MS Society recommends that the Government looks at how local holistic support could better work for disabled people[14].

Recommendation: The DU in the Cabinet Office should ensure that employment support for disabled people is holistic, coordinating across Government to tackle barriers to employment such as housing, transport, social care and adequate financial support. It should also study the benefits of a more localised and holistic employment support from local actors.

Recommendation: The Work and Pensions Committee should work alongside other select committees to scrutinize the Government’s progress on these issues.

5. How can DWP better support employers to take on and retain disabled employees, and to help them progress in work?

While the primary source of support for people with MS who are in employment is employers themselves, too many people with MS report unsupportive employers and a lack of understanding of MS and how it affects people individually.

‘My previous employers had no understanding of MS. They said I wasn’t meeting targets, and am being late for work. I didn’t ask for specific things to support me, but I did tell them how my MS affects me. I told them about the fatigue and cognitive issues. But they didn’t have a conversation with me about how they can help, not head office and not my manager.’

Lack of understanding about reasonable adjustments among employers can create difficulties for people with MS in having adjustments put in place. 87% of people with MS disclosed their MS to their employer, but only 57% have discussed support in the workplace, such as adjustments, with their employer. Those working for smaller organisations are less likely to have reasonable adjustments made for them than those working for medium or larger sized organisations[15].

While many employers accommodate people with MS to the best of their ability, and are proactive in putting in place supportive policies and procedures, some employers fail to follow best practice or even to fulfil their legal obligations. For example, some employers have absence policies that allow time off for MS-related medical appointment and treatment, but this is not universal, although this is something that many employees with MS have raised as an adjustment they would like to see happen[16].

The majority of employers have a reasonable understanding of their legal obligations, but a much lower level of confidence on where to find advice and information relating to workplace adjustments and to MS as a condition[17]. There are many reasons why employers may struggle to provide reasonable adjustments, with a central one being cost, and there is a general lack of awareness among employers of the support that is available through the ATW scheme to fund adjustments. This is largely due to a lack of publicity of the scheme by the Government[18]. Some employers may also be unaware that many reasonable adjustments do not attract a cost, for example providing rest breaks or staggered start and end time to allow for easier commuting.

‘I would say an open and approachable manager is very important. An employer doesn’t necessarily need to know where to go, but they need to have an overview of disability law and know what is out there like ATW that they could pull in to help people to stay on at work.’

Recommendation: the Government should create a one-stop-shop source of information for employers to help them recruit and retain disabled employees. The information provided should be condition-specific, and the service should sign post employers to other sources of support relating to employment, welfare and beyond.

The ATW service is a valuable source of support for disabled people, but it is only once an employee starts work that they are assessed and provided with support. Employers may therefore still be reluctant to hire a disabled employee because they are wary of the costs that would attract.

Recommendation: The DWP should consider changes to Access to Work that will allow disabled job seekers and prospective employers to explore what support could be available, before an employee starts work. This could include a preliminary three way conversation between the employer, the prospective employee and the scheme, during the recruitment process, to explore what support could be provided once the employee starts work and how soon this could be put in place.

A joined up approach between different departments, led by the DU, should aim to change the working culture in the UK. If the pandemic has taught us anything, it is that presenteeism – the expectation that all employees are present at the place of work – is outdated and often unnecessary. Since March, the Government has expected businesses to allow their employees to work from home where possible, and the experience has shown that with available technology this is possible. Many employees, especially those living with MS, have welcomed the reduced commuting time.

Recommendation: The Government should consider giving all disabled people in applicable jobs the right to work from home, and provide the necessary support through ATW.

Other ways that DWP can support employers to retain disabled employees is through providing better financial support for disabled employees who need to take time off due to their condition. Statutory Sick Pay (SSP) is currently inflexible and can only be claimed for up to 26 weeks. However, for people with fluctuating conditions such as MS, taking SSP in blocks of hours rather than days can help cope with issues such as fatigue management, and support them to stay in work for longer.

Recommendations: The Government should extending the length of SSP from 26 to 52 weeks can also support people with disabilities who need to take long periods off from work to recover and rehabilitate from relapses that can last for weeks.

6. How effective is the Disability Confident scheme?

The Disability Confident scheme is voluntary, and does not have any legal powers of enforcement. As the Committee heard through evidence gathering for its disability employment gap report in 2016, it is entirely possible for an employer to be accredited Disability Confident ‘without actually employing a disabled person’[19]. This seems to still be the case for level 1 committed employers, and according to DWP’s own data, the vast majority of signed up employers are at level 1, meaning that most do not progress to levels 2 or 3 where they have to show evidence of supporting disabled employees or changes to recruitment practices.

Recommendation: To ensure the scheme is meaningful in promoting the employment and progression of disabled people, the DWP should consider whether monitoring of employment practices of employers at all levels is required, and provide more support for employers to progress within the Disability Confident scheme. The scheme can also become the site of a one-stop-shop for employers, which provides condition-specific advice on recruiting and retaining disabled employees.

7. What improvements should DWP make to the support it offers to unemployed disabled people via Jobcetre Plus?

Jobcentre Plus (JCP) should provide support for all disabled people who need it, whether at work or looking for work.

We have heard from people with MS that they found the support from Jobcentre Plus to be less understanding of their health condition and circumstances than would be expected. Some have been told to apply for jobs that are entirely unsuitable for them, because they are too physically demanding, and others have said that they prefer not to even contact JCP because they do not believe they can help finding a job that is suitable for professional, experienced job seekers. This means that some disabled job seekers are avoiding applying for benefits in order to avoid having to deal with JCP.

It’s imperative that JCP is seen as a service that can support disabled people at all levels of employment, from entry level jobs and manual work to highly specialised and professional jobs. Otherwise, this excludes disabled people who are looking for highly qualified positions. Disability Employment Advisers must also provide more support for work coaches so that they can better support disabled job seekers to find appropriate employment. Particularly, more condition-specific information is required, so that people with MS can be confident their work coach understand the limitations imposed by their condition on the kind of work they can do.

‘There is support but it needs to be more flexible and more individual. The people that are in front of you at the JCP are trying to do their best, by following a process, but unfortunately some people don’t fit. I think it’s both the way that the process is made inflexible, which doesn’t fit the individual but also the work coaches, who don’t understand MS.’

8. Are “reasonable adjustments” for disabled people consistently applied? How might enforcement be improved?

Reasonable adjustments are not consistently applied by employers. There may be a number of reasons for this.

Some employers see reasonable adjustments as costly and difficult to implement, even though many adjustments such as changing work sites or providing rest breaks do not attract a cost. Other employers believe that giving a disabled employee reasonable adjustments means giving preferable treatment to a disabled employee over other employees.

Recommendation: Government must ensure that employers have better access to information on their legal duty to provide reasonable adjustments, on how to communicate this to their workforce to avoid ill feelings towards disabled employees by colleagues, and on sources of support such as ATW for adjustments that are deemed beyond reasonable. A one stop shop, provided for example through the Disability Confident scheme to any employer who needs it, can help in disseminating this information and supporting employers with reasonable adjustments

Recommendation: Stronger laws are required to ensure that employers are obligated to provide reasonable adjustments within a specific timeframe. Employers should have to provide reasons in writing if they are not providing reasonable adjustments.

‘I think it’s so important to have an understanding employer, because without that, there’s no way I would have stayed at work as long as I did. They need to accept Access to Work recommendations.’

87% of people with MS disclosed their MS to their employer, but only 57% have discussed support in the workplace, such as adjustments, with their employer. Those working for smaller organisations are less likely to have reasonable adjustments made for them than those working for medium or larger sized organisations[20]. People with MS are automatically covered by the Equality Act, but not all of them are aware of this, and their right to reasonable adjustments. Better information for disabled people, perhaps from their healthcare professionals at diagnosis, and better legal support, is required so that disabled people are able to assert their rights when employers are reluctant to provide this type of support.

‘I think medical services and employers, if you’re working, are the first places to start… if you’re under the care of the hospital/neurologist, they will identify what kind of help and support you need, and that should go hand in hand with your job if the healthcare professional says you need some equipment or to work fewer hours. And with MS you’re covered by the Equality Act. Healthcare professionals should be first line, and then you can involve charities or Citizens Advice if you’re not getting the help.’

It’s important to acknowledge that many employers display best practice in supporting people with MS to remain in work, and these cases can be used by DWP to show other employers how this can be done, and how this benefits both employer – who retains the knowledge, skills and commitment of an established employee – and the employee who can remain at work for as long as this is right for them.

9. What would you hope to see in the Government’s National Strategy for Disabled People?

Alongside our recommendations for the Department of Work and Pensions, there are specific recommendation for other Government remits that we feel the National Strategy should include and address:

• Enforcement

Without proper enforcement of legislation, policy and strategy, the barriers disabled people face will persist, regardless of any good intentions. It should not be the responsibility of disabled individuals, and disability support groups or organisations to fight for inclusion in the way they currently have to.  A government agency like the Health and Safety Executive which exists for the enforcement and encouragement of workforce wellbeing could be a model to consider.

• Financial support

The Government must consider how to significantly reduce poverty rates for disabled households, without relying solely on employment as a route out of poverty, as work is not always possible for people with MS, and neither does it always pay enough to escape poverty.

• Transport

Inclusive transport is a key contributory factor to reducing the disability employment gap, as well as supporting disabled people to engage with society in a way they’d like to. The Government must considering how to better support the mobility needs of disabled people who are not eligible for, or do not receive, the higher rate of Personal Independence Payment.

• Social Care

The current social care sector is chronically underfunded and lacks a well over due long term strategy. Working collaboratively with DHSC and MHCLG, the Strategy could be a unifying focus in driving drastic improvements forward. The social care system must support the needs of working age adults just as it does those of older people. Too many working age people with MS are not receiving all the care they need, and this prevents them from working and from taking an active part in society.

• Housing

The UK has a severe shortage in accessible housing, both for sale and for rent.[21]. Without a proactive approach, disabled people will continue to live in inadequate accommodation, impacting on their mental and physical health as well as their employment prospects. The Government must do more to ensure disabled people have access to accessible and affordable homes in each of the three housing sectors in the UK – private ownership, private rental and social rent.

• Social attitude to disability

Alongside Government policy, society also needs to make changes to the way it views disability. Disability hate crime is still an issue to too many disabled people, and there is still a lack of awareness of conditions with hidden or fluctuating symptoms such as MS. Improving social attitudes to disability can only improve on policy areas such as housing, transport and employment, and will do much to ensure that disabled people are not discriminated against in the workplace or in society more widely.

10. How should DWP look to engage disabled people and the organizations that represent them in formulating the Strategy?

The Strategy must be underpinned by the experiences of disabled people including people living with MS. However, engaging with disabled people should only be undertaken if the opportunities to engage are meaningful and sincere. It is important that time and capacity is built into the DU to maintain communications and relationships with those people it has involved in consultation and co-design.

The Covid-19 pandemic has shown us that we are able to meet virtually, removing the travel, accessibility and cost factors which can present barriers to engagement for disabled people. 

The huge wealth of existing networks should be built upon to engage with the development and implementation of the Strategy. Disability charities, like the MS Society, have daily interactions with people living with the condition and work hard to ensure they are as representative as possible in shaping their support, policies and campaigns. Maintaining communications as the Strategy progresses will provide ongoing insight from people living with specific conditions about their priorities.

December 2020