Money matters and M.E.

Money matters and M.E. This factsheet looks at the financial impact M.E. may have on you, your friends and your family. Thank you to everyone with M.E. who has shared their experiences. Updated November 2013 Contents How will M.E. affect my income? 2 What about my job? 3 Occupational health 3 Statutory Sick Pay (SSP) 4 Contractual sick pay 4 Voluntary work 5 Permitted work 5 If your employer is unsupportive 5 Welfare benefits 6 Applying for benefits 6 Sources of advice 7 Ill-health insurance 8 Permanent health or income protection insurance 8 Ill-health retirement 8 Useful contacts 9 1

How will M.E. affect my income? Having a long term illness like M.E. often affects your work and, potentially, your income. It can be tough. You will need to make compromises and your priorities are likely to change. It is important to consider your limits and be realistic about your health and/or abilities. Some people with M.E. will not be able to work at all and will have to rely on savings, welfare benefits, insurance or private income. Some people with mild to moderate M.E. are able to work part-time or even full time as they move into recovery. If you are too unwell to continue working, you can apply to be assessed for welfare benefits (see p 6). Citizens Advice Bureau can help with financial advice, while the Money Advice Trust runs the National Debtline, offering free, confidential advice to anyone worried about money problems. The Step Change Debt Charity is a registered charity that assists people who are in financial difficulty by providing free, independent, impartial and realistic advice. See useful contacts (p 9) to get in touch with any of these agencies. It may be useful to ask other people with M.E., perhaps through your local support group for their experiences of dealing with the financial impact of M.E. You can find your local M.E. support group in the services directory in our Online M.E. Centre at www.actionforme.org.uk or call our general enquiries line. I try to sort things out before the problem gets too big so stress levels are kept down. Jenny Ann Packham I was diagnosed with underactive thyroid long before the M.E. diagnosis. I joined underactive thyroid support groups but they didn't mention the financial aspects of living with disability presumably because they all were able to return to work. The M.E. groups are more long-term support groups and many people will be able to offer advice or simply understanding about financial issues. Jan Johnson 2

What about my job? Having M.E. may mean that you have to cut back on working hours, change your terms and conditions of employment, or even give up your job. It is important to discuss any changes with your manager and make sure you understand exactly what you will be paid. You should also find out about: statutory and/or contractual sick pay (p 4) welfare benefits (p 6) ill-health insurance and ill-health retirement (p 8). Giving up work or reducing your hours can be especially difficult if you are the main breadwinner in the family, if you live by yourself or if you are a lone parent. It is important that you get advice on your employment and welfare rights. It may be difficult and awkward to discuss your health with your line manager or human resources/personnel department at work. Your health is your concern, but they may need to know what impact a health problem is having and what changes may need to be made in working hours or conditions. Your employer has legal responsibilities to you as an employee. These include the standard obligations under your contract of employment plus the additional responsibilities they may have towards you as a person with a long term fluctuating condition if you qualify as disabled under the Equality Act 2010. The Act puts a duty on employers to make reasonable adjustments to help staff overcome disadvantage resulting from an impairment. Action for M.E. produces two booklets which go into more detail: M.E. and work (for employees) An employer s guide to M.E. Call us to order paper copies or download them free from our Online M.E. Centre at www.actionforme.org.uk where you can also find details about your rights and what could be done to help you stay in work. Occupational health Larger organisations may have an occupational health department or a contract with a doctor or occupational health company. You can work with them and your manager to agree a plan about what changes may need to be made. If your work does not have such an arrangement, or you are not comfortable with this, discuss with your GP or specialist what and how to tell your work. 3

A carefully graded return to work often makes you feel much better and a sympathetic, supportive and flexible employer is a major asset in recovery. "When I got ill I was lucky enough to be working for a multi-national oil company. Being a valued member of the team meant that they invested time and money into helping me obtain a diagnosis and sent me to see two experts in the field. "The company doctor was extremely supportive and did a good job of explaining my condition to my immediate supervisors. As a result, they tried to help me return to full time employment by reducing my working hours and giving my low stress items to work on." Michelle I have been lucky that the occupational health doctor I saw has a good understanding of M.E. and was very supportive. He arranged a very generous phased return programme for me and my boss has been accepting and supportive of that, so I'm lucky. But I am only working two half days at the moment, and the rest of the time I am having to rest. Sometimes I sleep. Sometimes I am on the lap-top but I'm in my bed. Other times I might be able to do some light activity, but I suffer for it later. I am glad to be back at work, but there is a price to pay for it. Jane Statutory Sick Pay (SSP) You may be entitled to Statutory Sick Pay (SSP), as long as you have been earning at least the lower earnings limit. Your employer has a duty to keep sickness records for this purpose. SSP is paid by the employer for up to 28 weeks in any period of sickness lasting for four or more days. It is primarily the employer s responsibility and the scheme is operated by HM Revenue & Customs. You may be entitled to certain welfare benefits whilst on SSP. If you are still sick at the start of the 23rd week of entitlement to SSP your employer will need to complete and send form SSP1 to you. If your employer stops paying your SSP for any other reason they will also need to complete and send you this form. This will allow you to claim state benefits eg. Employment and Support Allowance. Contractual sick pay Depending on the terms of the employment contract your employer operates, you may be entitled to Contractual Sick Pay in addition to SSP, or when SSP is not payable, eg. after 28 weeks of sickness. 4

You may also be entitled to welfare benefits or payments under any permanent health insurance schemes that you have either privately or through an employer. Voluntary work If you are not going back to an existing job, it is a good idea to consider doing some voluntary work when your health and functional level starts to improve and then to build up gradually to part-time work. This means that you can have a dry run for work-like activity, without the pressure. You can then try switching to the work setting at the same level, before later increasing it. Permitted Work The Permitted Work rules allow people on incapacity related benefits such as Incapacity Benefit and Employment and Support Allowance to try out some paid work whilst retaining entitlement to their benefit. There are rules about the amount of hours that you can work and the amount that you can earn while doing Permitted Work. Any changes to your circumstances could affect entitlement to your benefits so it is important to seek independent advice before undertaking any paid work whilst on benefits. Action for M.E publishes a factsheet on Permitted Work. After two and a half years off work including a year virtually housebound I was able to go back part-time. A year later I was back full-time, firing on perhaps three out of four cylinders but able to do what I had to do. Since then I ve had two major relapses as a result of pushing myself much too hard but recovered within nine months each time, essentially because I now know that stopping everything and a lot of rest does the trick. Boring, but for me it works. I still get bad patches but fortunately there s no significant downturn in energy. Some of the 14 symptoms I had at my worst point recur from time to time in a milder form, but nothing that prevents me doing anything I want to do. So these days I remain effectively recovered. Tony Golding, Action for M.E. Trustee If your employer e is unsupportive If you have concerns about your employer s attitude towards your illness, you may find it helpful to talk to an adviser at your local Citizens Advice Bureau or the government s Advisory, Conciliation and Arbitration Service (ACAS) see useful contacts on p 9. 5

Welfare benefits The welfare benefits system is very complex and undergoing extensive reform. We strongly recommend that you seek advice before making a claim. You may be eligible for Disability Living Allowance (DLA), which is being replaced with a new benefit, the Personal Independence Payment, in 2013. DLA is not means tested and could be payable while you are in or out of work. It is designed to help with the extra costs that arise from being disabled. You may continue to qualify for Working Tax Credit whilst off work sick for up to a period of 28 weeks. HM Revenue & Customs have a tax credit helpline (see useful contacts). Working-age benefits will be replaced by Universal Credit from 2013. If you are absent from work through sickness you may be entitled to Employment and Support Allowance (ESA). ESA is paid to people who are unable to work due to sickness or because they are disabled. There are two types of ESA: contribution based, which is not means tested income-based, which is means-tested. It is possible to get both at the same time. If you claim ESA you will have to go through a process called the Work Capability Assessment which determines whether you are eligible for ESA. As you recover, a return to work may affect your benefits. It is important that you know and understand any changes to your income, both from an employer and from the state. Applying for benefits People with M.E. have offered the following advice about applying for benefits and filling in the application forms. Try to put down what you cannot do rather what you can do. I had my request declined the first time. You have to think as they think and use their language! Claire Collins The benefits system is so hard and difficult for us to confront with our limited ability, let alone be able to write it all down on the complicated forms you have to fill in order to claim benefit. Learning to cope with the illness is hard enough without having your finances to worry you. Louise Dodds Cox It helps motivate me when I know others either have or are going through it. Joanna Vanderhoof 6

I have to pace myself and fill it in over about four days! They leave you feeling exhausted and drained but YOU are entitled to those benefits. Elaine French Wherever possible, get someone like the Citizens Advice Bureau to help you. Don't try and do it all yourself. They are trained to listen to you and also to know the correct wording to use. I did my first Disability Living Allowance form myself total nightmare. I ve gone to my local the Citizens Advice Bureau ever since with forms and they have been brilliant. Christine McClenaghan Sources of advice To find out what benefits may be available to you, and how to apply, you can contact check www.gov.uk/benefits-adviser Action for M.E. produces a range of factsheets about benefits that may be available to you, including information on applying and, if necessary, appealing if your claim is unsuccessful. Action for M.E. has a number of welfare benefits factsheets on filling in forms, attending assessments and appealing against benefits decisions. You can download them from our Online M.E. Centre at www.actionforme.org.uk or request paper copies from our general enquiries line. We also have a Welfare Rights Line see p 9 for details. The Citizens Advice Bureau offers comprehensive benefits advice on its website. For individual enquiries, contact your local Citizens Advice office. Turn2us is a charitable service which helps people access the money available to them through welfare benefits, grants and other help. Benefits & Work has a useful website. Subscribing to receive their guides costs around 20 per year but some information on the site is free. See the useful contacts (p 9) to get in touch with any of the above agencies. 7

Ill-health insurance Some people with M.E. have insurance or a pension scheme which pays an income if they are unable to work because of long-term illness. Check your policies, personal and company-run, to find out your options. Permanent health or o r income protection insurance Permanent health insurance (PHI) or income protection insurance pays a fixed income if you are unable to work long-term because of accident or ill health. If you make a successful claim, you remain off sick but in employment, receiving an income from the insurance for a set period or until you return to work or retire (depending on your policy). You may not be able to make a claim for an illness you already have or have had before and some illnesses may be exempt from some policies. Citizens Advice and the Money Advice Service (see useful contacts) warn that you will not receive your full income from PHI, if your claim is successful, and you will have to wait some time before payments start. Ill-health retirement Alternatively or in addition to PHI, your employer may have a pension scheme that allows you to retire early due to ill health and claim your pension early. If you want to retire, qualify under the criteria in your policy and your claim is successful, the amount you receive will usually be less than the full pension you would have got at retirement age and you may not necessarily receive a lump sum. Claiming permanent health insurance or an ill-health retirement pension is not always easy, as people have told us. Citizen s Advice (see useful contacts) has a section on how to resolve insurance problems on its website. The Pensions Advisory Service (see useful contacts) provides free information, advice and guidance on pension schemes If you receive state benefits an occupational pension or permanent health insurance payments can affect any benefits you receive, such as contribution based Employment and Support Allowance. 8

Useful contacts Action for M.E. General enquiries: 0845 123 2380 or 0117 927 9551 (Mon-Fri 9am-5pm) Enquiries email: admin@actionforme.org.uk Welfare Rights Line: 0845 122 8648 (times vary) Online M.E. Centre: www.actionforme.org.uk Advisory, Conciliation and Arbitration Service (ACAS) Tel: 08457 474747 (Mon-Fri 8am-8pm, Sat 9am-1pm) www.acas.org.uk Benefits & Work PO Box 4352, Warminster BA12 2AF Email: office@benefitsandwork.co.uk www.benefitsandwork.co.uk Citizens Advice Bureaux England tel: 0844 411 1444 (opening times vary depending on location) Wales tel: 0844 477 2020 (opening times vary depending on location) www.adviceguide.org.uk Step Change Debt Charity Tel. 0800 138 1111 (Mon-Fri 8am-8pm) www.stepchange.org HM Revenue & Customs Tax Credits helpline: 0345 300 3900 (Mon-Fri 8am-8pm, Sat 8am-4pm) www.hmrc.gov.uk Money Advice Service Tel: 0300 500 5000 (Mon-Fri 8am-8pm) www.moneyadviceservice.org.uk National Debtline Tel: 0808 808 4000 (Mon-Fri 9am-9pm, Sat 9.30am-1pm) www.nationaldebtline.co.uk Pensions Advisory Service Tel: 0845 601 2923 (Mon-Fri 9am-5pm) www.pensionsadvisoryservice.org.uk Turn2us Tel: 0808 802 2000 (Mon-Fri 8am-8pm) www.turn2us.org.uk 9

If you have found the information in this factsheet helpful, please consider making a donation to Action for M.E. at www.actionforme.org.uk or by calling 0845 123 2380 or 0117 927 9551. Thank you. Copyright Action for M.E. November 2013. Registered address: Third Floor Canningford House, 38 Victoria Street, Bristol, BS1 6BY. Registered charity in England and Wales no. 1036419 Registered in Scotland no. SC040452. Company limited by guarantee, registered in England no. 2906840. Disclaimer The information reproduced in this leaflet has been checked where possible and is provided in good faith. Action for M.E. does not accept responsibility or liability for the contents in terms of accuracy or efficacy and makes no recommendations with regards to the quality of any products or services mentioned. 10

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