Welfare Reform and Work Bill

Written evidence submitted by Action for M.E. (WRW 16)

1. This submission is on behalf of Action for M.E.

1.2 Action for M.E. is responding to this call for evidence as the UK’s leading charity for people affected by Myalgic Encephalomyelitis (M.E.), which affects an estimated 250,000 men, women and children in the UK. Symptoms include post-exertional malaise (a period of intense exhaustion brought on by any mental or physical activity) and chronic pain.

1. 3 M.E. affects different people in different ways and symptoms can fluctuate and change over time. 25% of people with M.E. are severely affected. They may be confined to bed or unable to leave the house without the use of a wheelchair.

1.4 Working with Action for M.E., as well as Forward M.E. and the APPG on M.E., the Department for Work and Pensions updated its evidence-based protocol on M.E. for healthcare professionals carrying our Work Capability Assessments (WCAs). The new guidance, released in June, highlights the significance of post-exertional malaise, and the serious impact of the symptoms of M.E.

1. 5 I nformation on M.E./CFS is also included in the DWP’s A-Z of medical conditions.

2. Summary : To inform our response to this call for evidence , we used a short questionnaire to consult with 27 4 people affected by M.E. on key proposals included in the Bill .

2.1 We have chosen to focus on four areas of the Bill :

1. Reducing the benefit cap .

2. Freezing some welfare benefits .

3. Changes to the Work-Related Activity Group of ESA

4. Changes to Support for Mortgage Interest Payments.

2.2 Several key points have emerged from this consultation. They include:

· Many people with M.E. who are on benefits will not be affected by reducing the benefit cap because they currently receive significantly less than £20,000 in benefits.

· Removing part of the payment for people in the Work-Related Activity Group of ESA is likely to cause financial hardship and stress for many people with M.E., potentially leading to a worsening of symptoms.

· Many people with M.E. told us they don’t own a property, so changes to support for mortgage interest payments are unlikely to affect them.

2.3 The responses received from the consultation highlight recurring key issues and concerns. Through Action for M.E.’s information, support and specialist services, we regularly hear similar feedback from service users. This is further evidenced through our engagement and work with statutory and voluntary sector organisations.

2.4 Furthermore, in M.E. Time to deliver, our large-scale consultation with more than 2,000 people with M.E. in 2014, 80% of respondents told us they were worried about the impact of welfare benefit reforms. Financial security was a key concern for many.

3 . Reducing the benefit cap to £20,000 (except for £23,000 in Greater London)

3.1 We asked people with M.E. whether reducing the benefit cap is likely to affect them .

· 71% said no

· 25% said don’t know

· 4% said yes.

3.2 One person with M.E. told us: "This cap will make my life personally harder if it happens."

3.3 Another person with M.E. told us: "The talk of benefit capping has ruined things for me already. I have been waiting to move to a three bed house for 12 years as I am overcrowded. I was very fortunate to actually been offered a place at all in the area I wanted, but was told that because of the benefit cap that may be bought in, that I wouldn't be able to afford the new property if the government go ahead with the capping on housing benefits. I have only just very recently had to obtain housing benefits in the first place as I worked full time before I lost my job due to ill health (CFS/M.E.). I feel so let down."

3.4 On the other hand, other people with M.E. told us they won’t be affected because:

· "My benefits are already below £20,000."

· "I get about half of that."

· "I don't receive anywhere near that much money so unless I am suddenly entitled to loads more it is unlikely to affect me."

4. Freezing certain social security benefits and certain tax credit amounts for four tax years

4.1 In the survey we explained that this includes Employment and Support Allowance (ESA) for those in the Work-Related Activity Group (WRAG) but not the Support Group.

4.2 We then asked people with M.E. whether freezing some welfare benefits is likely to affect them.

4.3 40% said yes or they weren’t sure. Uncertainty around the future of welfare benefits is a source of considerable stress for people with M.E., many of whom rely solely on these as a source of income.

4.4 One person with M.E. told us: "ESA WRAG is already so low that it is difficult to believe anyone with a health problem could survive on it without outside support."

4.5 Another person with M.E. agreed: "I think this is a poor proposal, since the ESA payment is not enough to live on, and freezing it will effectively mean a cut in payments over the next four years."

4.6 Another person with M.E. told us: "I think it is really unfair that you should get less for being in the WRAG. I am unable to work and have the same living costs as people in the Support Group."

5. Removing the work-related activity component in employment and support allowance

5.1 In the survey w e explained that what this means in practice is that people in the Work-Related Activity Group will have part of their payment removed, making the amount of benefit they receive the same as people on Jobseekers Allowance (JSA; currently £73.10 per week).

5.2 We then asked people with M.E. whether this change to the Work-Related Activity Group of ESA is likely to affect them.

5.3 Roughly one in three said yes or they weren’t sure.

5.4 One person with M.E. told us: "I have been in the work-related activity group and don't think this is fair. If someone is ill and trying their best to get prepared to return to work, reducing their ESA is obviously not going to help that and the stress of it could cause people to become more ill. JSA is a low amount so it encourages people to find work quickly, this shouldn't be the case for ESA, where a person can't predict how quickly they will be well enough to work."

5.5 Another person with M.E. told us: "I am already severely compromised – being unable to hold down a regular job consequent to the variable nature of the disabling symptoms. Further cuts not only cause exacerbation of symptoms as a result of excessive anxiety, creating a vicious downward spiral, but also will further compromise the quality of life."

5.6 Another person with M.E. told us: "Again, it is unfair to penalise people in the WRAG. If you are not fit for work then you are not fit for work and cutting benefit payments won't change that, it will just make an already difficult life even harder."

5.7 Again, uncertainty around the future of welfare benefits is a source of considerable stress for people with M.E. Many people with M.E. who are in the ESA Support Group told us they are worried any changes to the ESA WRAG might affect them in the future [1] :

· "This doesn't affect me at the moment, but I live in fear of any benefit re-assessment. It all seems so unpredictable no matter how ill you actually are."

· "I am currently in the Support Group but if descriptors change and I'm then moved to WRAG it would affect me."

· "I don't know if my circumstance will change and I will be re-assessed but a drop in income would certainly make my life very much harder."

5.8 Linked to this, our M.E. Time to deliver survey in 2014 asked more than 2,000 people with M.E. about the impact of their symptoms. 87% told us they had stopped or reduced paid work because of the illness.

5.9 M.E. Time to deliver also explored people with M.E.’s experiences of dealing with the Department for Work and Pensions (and/or agencies contracted by them) during the welfare benefits claim process. People with M.E. told us they find claiming the welfare benefits they are entitled to very stressful, with frequent stories of lost or delayed applications, and assessors making uninformed assumptions about claimants’ capabilities. The process itself appears unsuitable for people with fluctuating conditions such as M.E.

5.10 One respondent told us: "They always send generic letters and I end up having to phone when the information I need isn’t on it. It can be frightening when you read something you’re not expecting before you realise it doesn’t apply to you. Getting through on the phone has got more difficult. It always feels like they assume you are lying until you can prove otherwise."

6. Replacing current support for mortgage interest payments for benefit claimants with the offer of a recoverable interest-bearing loan secured as a second charge on claimants’ properties

6.1 In the survey we explained this means that people on income-related ESA will have to wait longer to get help with their mortgage interest payments, and it will become a loan that needs to be paid back.

6.2 We then asked people with M.E. whether changes to support for mortgage interest payments are likely to affect them.

· 80% said no

· 11% said yes

· 9% said don’t know.

6.3 One person with M.E. told us: "I have to pay for my housing because I own my home. I was about to apply for mortgage interest benefit. But there is no point in it being a loan as I would never have the means to pay it back."

6.4 Another person with M.E. told us: "I get some money towards mortgage interest so I suppose this will affect me. I already struggle to pay my mortgage because most of the monthly payment is repayment of capital so the proportion I receive in benefit is only approx. 20-25%. I don't know how a loan would work and I don't know how I would pay it back. It is a worrying prospect."

6.5 However, one in four people with M.E. told us that owning a home isn’t an option for them because of their circumstances:

· "Even though I work part time and receive some benefits, I would never be able to afford my own home or get a mortgage."

· "Don't have a mortgage and now never will! Totally dependent on Housing Benefit to have somewhere to live."

· "I don't own my house. I lost it when I became ill."

· "I do not have a mortgage. I live in private rented accommodation."

· "Can't afford my own home in the first place. Still living with my mum at 38 years of age."

7. Conclusion

7.1 Having consulted with 274 people affected by M.E. and analysed their comments, the biggest concerns for this group are the proposed changes to Employment and Support Allowance for those in the Work-Related Activity Group.

7.2 Action for M.E. feels strongly that the proposal to remove the work-related activity component in ESA is wrong. We know that people with M.E. who claim ESA are not unable to work because they lack motivation; they are unable to work because they are two unwell, with disabling, fluctuating symptoms that leave a significant minority house or bed-bound.

7.3 Therefore the proposed change to the Work-Related Activity Group of ESA will cut off an essential source of financial support for people with M.E.

7.4 Through our survey we also found that changes to welfare benefits in general are a worry for people with M.E. One person told us: "I have learnt from experience that changes to the welfare system lead to more cuts, distress, poverty, humiliation and hopelessness. Every cut affects the sick and disabled in some form and makes public attitudes towards us worse."

7.5 Linked to this, in another recent survey we asked people about experiencing discrimination because of having M.E. and/or another disability or health condition.

· 97% said they felt discriminated against when receiving or accessing goods, facilities and services.

· 13% said they felt discriminated against when renting or buying property.

7.6 One person with M.E. told us: "I rent my property privately. More and more landlords are stating ‘No Housing Benefit’ and only taking tenants who are in full time work. This to me is discriminatory as people who are unable to work through sickness or disability, and who have a previously unblemished record as a tenant, are being excluded from many properties just because they are in receipt of Housing Benefit."

7.7 Also, of the people who provided more information, roughly one in four told us that M.E. is an invisible and/or misunderstood condition in relation to disability discrimination.

7.8 One person with M.E. explained: "Generally the perception is that I don't look disabled. I'm not in a wheelchair. Therefore I must be well. If anything I think the general public are more hostile towards disabled people and people on benefits."

7.9 Another person with M.E. told us: "Government decisions on benefits mean I have to fight for my right to a reasonable standard of living just because I don't have a disability that conforms to the questions on the assessment forms."

September 2015


[1] Action for M.E. understands that the intention is that regulations will include provision for claimants who are already in receipt of the work-related activity component to continue to receive that component. However, it is clear that people with M.E. are unsure as to whether being re-assessed and moving from the Support Group to the WRAG will result in them being classed as a new claimant.

Prepared 11th September 2015