Written evidence from Mind (DEG0084)

About Mind

We're Mind, the mental health charity for England and Wales. We provide advice and support to empower anyone experiencing a mental health problem. We campaign to improve services, raise awareness and promote understanding.

Summary of response

1. We are calling for the UK Government to take further action to support people with mental health problems who are disabled to find, stay in and thrive in work.
2. We urge the UK Government to make the following changes:

• Reform the benefits system so it better meets the needs of disabled people.
• Invest in IPS (Individual Placement and Support) to support people with severe mental health problems into employment.
• Introduce fundamental reforms to Statutory Sick Pay to ensure everyone is able to take the time off they need when unwell.
• Improve the Equality Act so that more people with mental health problems have access to their rights at work.

Progress so far and impact

Question

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?

3. A 2019 analysis of national mental health survey data in England[1] identified that people whose lives were most impacted by mental health problems were amongst the most likely to be economically inactive. Being economically inactive was particularly common in people experiencing severe low mood (45%) and those who had multiple, severe needs (51%).
4. People in the multiple severe needs group were the most likely (37%) to be in receipt of out of work benefits, followed by those with severe low mood (16%). Levels amongst people classed as mentally well were 4%.

Question

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

5. Mind surveyed over 14,000 adults aged 25+ from April-May 2020, most of whom had experience of mental health problems. Over half (59%) were in full or part-time employment and 16% were unemployed. 17% have seen their employment status change as a result of coronavirus.
6. Two thirds (65%) of those who had changed employment status said their mental health had deteriorated during the pandemic. Nearly three quarters (73%) of people whose employment status changed as a result of coronavirus had a lower than average wellbeing score in comparison to two thirds (66%) of those who experienced no employment change.

Providing support

Question

What is the right balance between in and out of work support, and is DWP getting the balance right? What more should the Department look to provide?

7. The DWP should invest in IPS (Individual Placement and Support) to support people with severe mental health problems into employment. IPS involves intensive, individual support, a rapid job search followed by placement in paid employment, and time-unlimited in-work support for both the employee and the employer.
8. There is now international evidence that 'place then train' models – and IPS in particular – are much more effective than traditional approaches (such as vocational training and sheltered work) in successfully getting people into work.
9. The EQOLISE project[2] compared IPS with other vocational / rehabilitation services in six European countries, and concluded that:

• IPS clients were twice as likely to gain employment (55% v. 28%) and worked for significantly longer;
• The total costs for IPS were generally lower than standard services over first 6 months;
• Individuals who gained employment had reduced hospitalisation

10. IPS has been shown to be more effective the more closely it follows the principles below. For the DWP to use IPS to provide effective support to people it is crucial that it adheres to these principles and does not force people into job roles which do not meet the person’s needs.
11. The principles[3] are:

• It aims to get people into competitive employment
• It is open to all those who want to work
• It tries to find jobs consistent with people's preferences
• It works quickly
• It brings employment specialists into clinical teams
• Employment specialists develop relationships with employers based upon a person's work preferences
• It provides time unlimited, individualised support for the person and their employer
• Benefits counselling is included.

Improving Statutory Sick Pay

12. Improving Statutory Sick Pay (SSP) is a vital first step ensuring that disabled people can afford to take time off work when they’re unwell. This is also in the interest of employers. There is a large annual cost to employers of between £33 billion and £42 billion[4] as a result of poor mental health at work (with over half of the cost coming from presenteeism – when individuals are less productive due to poor mental health in work).
13. At Mind, we carried out a survey in 2019 of people with mental health problems to understand their experiences of sick pay. We asked respondents who were paid the SSP rate how they found their reduction in income and whether they felt it impacted on them or their recovery. This was an open text question, and analysis of the 124 answers revealed some clear themes:

14. Two in three respondents told us that receiving SSP caused them financial problems, some going into debt, and more than one in four specifically mentioned that it had affected their ability to pay their bills or buy food.
15. Mind is calling for the UK Government to implement the following changes to Statutory Sick Pay to ensure people with mental health problems who are disabled can take the time off they need when unwell.

• The UK Government must urgently increase the SSP rate to match the National Living Wage and Minimum Wage to make sure people can meet their living costs at this time. The current rate of SSP - £95.85 - is far too low and our research has shown that too often, it leaves those of us with mental health problems struggling to pay bills or buy food while off sick.
• Remove waiting days so that people must be paid Statutory Sick Pay from day one of sickness. Currently, a person is not entitled to sick pay on their first three days of absence. These waiting days are having an unnecessary negative effect on employees. Mind’s research included an open survey question asking about experiences of waiting days, in which 69% of people reported that getting paid would have made a positive difference to them. Many detailed that it would have reduced stress, meant less difficulties with finances, and some mentioned experience of scenarios in which they were not able to take time off when they need to, as they would not be paid.

• The UK Government must expand the eligibility to claim SSP to cover those who earn under £120 a week. Without this, people will be left feeling that they must work, even when unwell.
• Everyone should receive a rate of sick pay which meets their living costs, without also having to apply for benefits. In such a stressful situation, people should not be left having to apply for benefits on top of or instead of sick pay, when the sick pay system should be meeting their needs.

Improving mental health support for employees

16. The DWP should require all the employers it works with to sign up to the Mental Health At Work Commitment . This is made up of six standards, which draw on best practice from the Thriving at Work review[5], as well as other pledges and charters available.

The six standards are:

• Prioritise mental health in the workplace by developing and delivering a systematic programme of activity
• Proactively ensure work design and organisational culture drive positive mental health outcomes
• Promote an open culture around mental health
• Increase organisational confidence and capability
• Provide mental health tools and support
• Increase transparency and accountability through internal and external reporting

Question

The coronavirus pandemic continues to make it difficult to offer in-person support. What evidence is there of “best practice” in supporting disabled people remotely—either in or out of work?

Case study: Roisin

17. Roisin was in a difficult situation even before the coronavirus pandemic hit the UK. After being in stable work for most of her life, she had reached a point where her anxiety and depression were making it impossible to continue. After spending time in hospital recovering from a mental health crisis, she was still experiencing regular periods of disassociation which disrupted her daily life. She had known for some time that things needed to change but she also felt ashamed about the prospect of claiming benefits.
18. In March, Roisin took the plunge, stepping down from running a successful business and putting in an application for Universal Credit. Her experiences could not have been more different from one another. Roisin’s application to Universal Credit went smoothly. Her Work Coach saw that she had a note from her GP and told her over the phone that she should take returning to work at her own pace – she wouldn’t be forced to do anything before she was ready. Her Work Coach also said that Roisin could be entitled to a higher award because of her health conditions and helped get that process going. Roisin had access to a lot of medical evidence about her mental health problems, and after sending off the forms was told that she had been successful.
19. When Roisin applied for PIP things went differently. Because of the coronavirus pandemic she was required to take part in an assessment over the phone. Before the assessment Roisin had asked if her psychiatrist could speak to the DWP instead, or if they would let him write to provide any extra evidence they needed. Her assessment provider told her neither would be possible.
20. During the assessment itself Roisin struggled to cope, especially when her assessor asked her detailed questions about suicidal thoughts. She felt that her assessor might have been more understanding if they could see how distressed she was becoming either face-to-face or through a video call. Roisin scored zero points on her assessment and is dreading the process of going through a lengthy appeal.
21. The coronavirus pandemic has changed the experiences of applying for benefits for many people like Roisin. Some people have found things easier. We have heard from people who struggle to use public transport or be out in public and who have found assessments over the phone a real improvement. Others like Roisin have struggled to cope with assessments over the phone, and have found the system too inflexible about how the DWP gets the information it needs.

Recommendation: Disabled people should be able to choose the format of their assessment

22. Mental health problems affect people differently. You are being set up to fail if attending a face-to-face assessment means risking a panic attack on a crowded bus or train. But the same is true of being required to talk over the phone if your anxiety makes that impossible. Or needing to take part in a video call when you can’t access the internet at home. Or being given an appointment time which means you can’t get the support you need from friends and family.
23. When we spoke to people about their experiences of claiming benefits during the pandemic, overwhelmingly people told us they wanted choice and flexibility. People wanted the option of speaking by phone, by video call, and when safe to do so face-to-face. People also wanted the system to make it easier to put across their case in other ways, for example by giving them option to send in additional information by text or email. Or for the DWP to speak directly to an adviser or health professional on their behalf. For the people we spoke with, the prospect of having these options was not just a question of making their experience better. For some it was about having the basic opportunity to participate in the assessment process, to put their case across, and to have a fair hearing.

“You establish it when you first talk to the client, what's the best way of getting hold of you? Should I just pop round on this day? Do you want to come into the centre and see me on my patch, or should I come to yours? Since during Covid, as well, we've learned how to use WhatsApp. It's a really great way of sending photos of decision letters, authorisation. I send them a form in the post, they sign it and take a picture, send it back to me. I offer Zoom calls as well if they want. There's always different ways that we can do things and you just learn over time what works. Sometimes it changes as well. Sometimes people want to call you for a bit, and then they just want to text for a bit because their mental health fluctuates. It has to be fluid and you have to respond to their needs.”

Local Mind benefits adviser

Enforcement and next steps

Question

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

Improving the Equality Act: background

24. There is a need to improve both awareness of and enforcement of the Equality Act. There is also for the UK Government to amend the definition of the Equality Act so it better meets the needs of people with mental health problems.
25. Mind’s research has found that large proportions of us are unaware of the Act and unclear about how it applies to us. Ultimately, this can leave us unable to fight for our rights in the workplace, and in some cases our access to the workplace is taken away.
26. In the context of changes to the UK’s labour market it is crucial that the UK Government takes action to amend the Equality Act and clarify its protections.
27. Mind’s (2019) survey of almost 2,000 people with mental health problems revealed issues with both the requirement for a mental health problem to be long-term and the language in the definition describing the impact of disability. Both leave many people with a lack of clarity about whether they are protected by the law when at work.
28. We found that there was a lack of clarity about the language used in the definition of disability and how it related to them. The key themes were that: it was difficult to know if the effect of a mental health problem was ‘substantial’ enough; language around ability to do an activity doesn’t apply well to mental health; effects of mental health problems can fluctuate or be episodic.
29. Only half of people we surveyed knew that people with mental health problems could be classed as disabled under the Equality Act. We provided some context of the Act and found that only 65% of people then felt that the definition applied to their mental health problem, with 11% of these reporting that their employer didn’t agree
30. Of the almost 90% who reported that their mental health problem did not have a substantial negative effect on their ability to do normal daily activities, 54% had reported that their mental health affected them at work. Under the Equality Act, substantial is defined as ‘more than minor or trivial’, and if it is affecting a person at work then this suggests it would fulfil this criterion.
31. The discrepancy in respondents’ answers and the confusion expressed suggests that many people think that the bar for support is higher than it is, and that the language of the definition is not reflective of many people’s experiences of mental health problems. For many, it is not clear that this can relate to thought processes or decision-making ability. This highlights that awareness of and the ability to understand this important piece of legal protection is low. These findings clearly identify the need to urgently clarify the definition of disability in the Equality Act 2010.

Improving the Equality Act: Mind’s recommendations

32. It is clear that the Equality Act must be improved so that more people with mental health problems have access to their rights at work, to get the support they need and ultimately be able to thrive in work.
33. Further, if individuals using this right are not protected by the Equality Act, or may be unsure if they are, asking for an adjustment without the right to not be discriminated against has the risk of resulting in unfair treatment from employers. Mind is calling on the Government to:

• Amend the Equality Act 2010 to clarify the definition of disability and better reflect the experiences and understanding of people with mental health problems.
• Remove the requirement in the definition of disability for a condition to be long-term.
• Improve statutory guidance to establish what reasonable adjustments can look like and what makes an adjustment reasonable.
• Improve the Equality Act’s Employment Code of Practice and statutory guidance to be clear that moderate, episodic and fluctuating mental health conditions meet the definition of disability.
• Review how to improve the law so that more onus is on employers to be proactive.
• Undertake an awareness exercise with employers and people with mental health problems to clarify how the law applies to them.

Question

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

The benefits system: background

Each year there are nearly 700,000 claims for disability benefits like Employment and Support

Allowance (ESA) and Personal Independence Payments (PIP) made by people with mental health problems. Too often the process of trying to get that help is making people more unwell.

• In 2019, The Money and Mental Health Policy Institute’s research into PIP and ESA, found that nine in ten (93%) of survey participants saw their mental health deteriorate in anticipation of an assessment and 85% saw their mental health deteriorate afterwards.
• A 2015 study published in the Journal of Epidemiology and Community Health looked at the association between the frequency of Work Capability Assessment (WCA) reassessments and mental health outcomes in local authority areas across England. It found that each additional 10,000 people reassessed was associated with an additional six suicides, 2700 cases of reported mental health problems, and the prescribing of an additional 7020 antidepressants.

The fear of losing benefits also has a real impact on disabled people’s ability to live independently. In The Activity Alliance’s 2020 survey of more than a thousand disabled people, two in five (41%) said a fear of their benefits or financial assistance being taken away prevented them from trying to be more active. That rises to half (50%) of people with mental health problems.

The benefits system: recommendations

In our report ‘People, Not Tick Boxes’[6] we set out four recommendations to reform the benefits system. These are:

• The Government should establish an independent regulator to provide more accountability within the benefits system
• The DWP should end sanctions for disabled people and people with health conditions
• The DWP should reduce the frequency of face-to-face assessments by giving disabled people the right to apply for long-term awards
• The DWP should establish a commission led by disabled people to review the criteria and format of disability benefits assessments

Since the coronavirus pandemic, the Department for Work and Pensions has made provisions for disabled people to have remote assessments for PIP and Universal Credit. For many people the option of having an assessment by paper or over the phone can make the process more accessible and reduce the stress of assessments. However it is important that people are given meaningful choices so that their method of assessment works for them:

• The DWP should give people a range of options of their assessment method, including by paper, phone, video, and when safe to do so, face-to-face.

The education system

Schools play an important role in supporting the mental health and wellbeing of their pupils, from raising awareness and tackling stigma to prevention, early identification and intervention.

Young people with a mental health problem should be supported to thrive in our education system. Despite the growing focu​son wellbeing in schools, the education system is not working for too many young people with a mental health problem. This has significant implications for future opportunities, including qualifications, employment and income. However, missing out on education is not just about academic success - it's about life chances, equality of opportunity, and social inclusion. 

We welcome the inclusion of children and young people into the strategy - an all age approach is vital. However, the scope has to be broader than the SEND system/entry into work. There needs to be a focus on other aspects of disabled children's lives and on tackling inequalities. 

Recommendations

• Set out how the Department for Education will support schools to take an effective whole school approach to mental health (beyond offering training to senior mental health leads).
• Recognise a whole school approach to mental health as being “essential to the success of schools in tackling mental health”.

• Rebalance our education system, so it values and seeks to support the mental health and wellbeing of pupils, in addition to their academic success.

• Ensure that children and young people with a mental health problem are able to enjoy their right to an education, and do not face discrimination and stigma at school. Including by: 
• addressing the disproportionate number of children and young people with a mental health problem excluded from school
• making sure no child or young person (with a mental health problem) is illegally excluded or off-rolled from school
• ensuring that schools' approach to behaviour and attendance works for children and young people with mental health problems, ie identification of unmet needs, offering support and preventing discrimination
• review the system for managing and recording absences, and stop putting families of children unable to attend school for mental health related reasons at risk of prosecution and financial sanctions
• ensuring that children and young people with a mental health problem are able to get the support they need when they need it - both for their mental health and their educational engagement and attainment (eg from the special educational needs system)
• providing the proper legal protection around restrictive practices, including seclusion, in schools, so that restrictive practices are prevented, and only used as a very last resort and pupils are protected from harm 

Reforming social care

The Government must use the Strategy as an opportunity to bring forward a plan to create a fair, effective and sustainable care system with the following features:

• Care should be free at the point of use.
• There must be an independent, standardised national eligibility threshold and assessment process for social care.
• Eligibility should be set at a ‘moderate’ level to enable those in need of community and preventative support to access it; any proposed solution must not tighten eligibility criteria or otherwise reduce access to social care.
• Any proposed solution must address the care and support needs of working age sick and disabled adults as well as those of older people

Question

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

The DWP and Disability Unit should undertake extensive quantitative and qualitative research with people with mental health problems who are disabled and ensure their views are central to informing the Strategy and its recommendations.

December 2020