AL amyoidosis Infosheet Myeloma UK Broughton House 31 Dunedin Street Edinburgh EH7 4JG Tel: 0131 557 3332 Fax: 0131 557 9785 Myeloma UK Infoline 0800 980 3332 www.myeloma.org.uk/ amyloidosis Charity no. SC 026116 Finances A diagnosis of AL amyloidosis can affect many areas of your life; as well as concerns about your physical health you may also find yourself experiencing unexpected financial worries. If you are working it is likely that you may need to take some time off during treatment and / or periods of ill health. Occasionally a change of job may be necessary, particularly if your work is strenuous and involves heavy manual labour, and some people decide that early retirement is necessary. If you are a carer then you may also have financial worries if you are unable to work and have to manage on a lower income. This Infosheet aims to provide information on some of the more general financial problems that you may encounter, the benefits you may be entitled to claim, and provides resources for further help and advice. Assessing your situation A useful starting point might be to assess your current financial situation. This can help clarify things in your mind and will also be helpful if you go on to discuss your finances with a bank manager or financial advisor. To begin with, make a list of any regular income and assets that you may have e.g. savings accounts, investments, pension schemes, endowments and existing insurance policies. Then make a list of your regular outgoings including debts and all other financial commitments that you may have. The next step is to look for any way to increase your income or reduce your outgoings. Possible ways of doing this include: altering your mortgage payments, getting advice on debt management, checking eligibility for benefits, making any relevant insurance claims (e.g. if you have income protection, critical illness or private medical insurance) and, in some cases, considering early retirement. You may also want to update your will, or make a will if you do not already have one, to take into account any changes in your circumstances. It is often advisable to discuss your situation with an independent financial advisor. You can find an authorised financial adviser through Independent Financial Advice Promotion see details at the end of this Infosheet. Mortgages If you do not have mortgage payment protection insurance and are experiencing financial difficulties then you should inform your mortgage lender as soon as possible. Sometimes it is possible to suspend payments for a short time, pay only the interest part of the mortgage or extend the term of your mortgage. If the value of your house is much more than your outstanding mortgage then you may be able to remortgage your property and release some money. If you are receiving Income Support then you may be entitled to help with the interest part of your mortgage repayments. If you are applying for a mortgage it is not always necessary to give your medical details. However, if life insurance or payment protection insurance are required then it is likely that you will have to give your full medical history. National Myeloma Week 21 28 June 1
Pensions If you have an occupational pension it may be worthwhile checking what your entitlements under the scheme are, and if payments will be affected if your circumstances change e.g. if you are unable to work for a while or take early retirement. If you have a private pension it may help to discuss your financial position, needs and concerns with an authorised financial adviser. If you are considering early retirement on the grounds of ill health then you should discuss this with your doctor, your pension provider and / or human resources department. Viatical settlement (also known as living benefit) A viatical settlement is the name given to the transaction when an independent financial company buys an existing life insurance or endowment policy from a person who is not expected to live for longer than three years. This enables the person to have access to part of their policy value before they die. If you are considering a viatical settlement then is very important to discuss this with an independent financial adviser who will be able to advise you whether or not this is the best course of action. Debt If financial problems mean that you are getting into increasing debt or you cannot pay off the debts you already have, it is important to seek help as soon as you can. Make sure that you are receiving all the benefits and help you are entitled to by speaking to a social worker at your hospital or going to your local Benefits Agency. Some specialised cancer centres or organisations have experienced benefits advisers who may be able to help you. If possible try to deal first with any essential debts e.g. mortgage or rent arrears and gas / electricity bills. If you are unable to pay your bills then it is important to explain to your creditors the reasons why you cannot keep up any payments they may be prepared to accept reduced payments if they are aware of your circumstances. Further help regarding debt can be obtained from the National Debtline and from your local Citizens' Advice Bureau. Benefits A social worker can advise you of about any benefits you may be entitled to and any extra help that might be available they can also put you in touch with a local welfare rights officer who will be able to help you fill out any necessary forms. You can ask to be referred to a social worker through your hospital or local social services department. Statutory Sick Pay (SSP) If you are employed and are unable to work because of ill health or disability then your employer should pay you SSP. There is a standard rate of SSP and it is paid for a maximum of 28 weeks. If, however, you have contractual sick pay in the terms of your employment then you may be entitled to occupational sick pay as well as SSP. Incapacity Benefit Incapacity Benefit is paid to people of working age who are unable to work due to ill health or disability. In order to be eligible for Incapacity Benefit then you must have paid enough National Insurance contributions in the relevant tax years. There are three rates of Incapacity Benefit: a short-term lower rate, a short-term higher rate, and a long-term rate. If you are employed then you can claim Incapacity Benefit when your SSP runs out. If, however you are self-employed or unemployed then you can claim Incapacity Benefit from the beginning of your period of sickness. In order to qualify for Incapacity Benefit it may be necessary for you to complete a 'personal capability assessment' questionnaire and / or undergo a medical examination. Incapacity Benefit is a non-means tested benefit which means that your claim will not be affected by any income or savings that you have. Income Support If you are under 60 years of age and your income is low then you may be entitled to Income Support. This is a means tested benefit the amount awarded will depend on certain criteria such as whether or not you have a spouse / partner, dependent children, a disability or any other income or savings. You do not have to have paid any national insurance contributions in order to qualify for Income Support. 2
Income Support is made up of three different parts: Personal allowances: the amount of money that you need for normal living expenses Premiums: an extra amount that is paid because of special circumstances e.g. if you have a disability or you are a carer Payments to cover certain housing costs: if you have a mortgage or loan taken out to buy your home, Income Support may help you with the interest payments. The Income Support scheme will not help with repayments of capital or with the premiums or any endowment or pension policy that is associated with the mortgage or loan. Income support can also act as a 'passport' to other benefits such as free prescriptions, housing and council tax benefits Housing and Council Tax Benefits If you are on a low income then you may be entitled to Housing Benefit and Council Tax Benefit. Housing Benefit is only available if you live in rented accommodation. Pension Credit If you, or your spouse / partner are over 60 years of age and on a low income then you may be entitled to Pension Credit. Pension Credit is a means tested benefit which can help by topping up your income in order for it to reach a minimum level. Extra amounts may be paid to people who care for others, are severely disabled or have certain housing costs. If you or your spouse / partner are 65 years of age or over then you may be entitled to Pension Credit even if you have savings. Disability Living Allowance and Attendance Allowance Disability Living Allowance (DLA) may be claimed if you are under 65 years of age and have difficulty looking after yourself and / or have mobility problems. The allowance is made up of two parts care and mobility, both of which have different rates depending on your individual circumstances. Attendance Allowance (AA) may be claimed if you are over 65 years of age and have difficulty looking after yourself. AA has a care component only and has 2 different rates depending on your individual circumstances. Both DLA and AA are non-means tested, and therefore any savings and income that you may have will not affect your claim. Sometimes a medical examination is necessary. Carer's Allowance If you are a carer and are caring for somebody for more than 35 hours per week, who is in receipt of DLA (at the middle or highest rate for personal care) or AA, then you may be entitled to carer's allowance. Claiming Carer's Allowance may affect other benefits, allowances, pensions and entitlements you, or the person you care for, are receiving. Working Tax Credit and Child Tax Credit If you are working or have children, and are on a low income, then you may be entitled to Working Tax Credit and / or Child Tax Credit. These are means-tested allowances and payments are based upon your level of income and other individual circumstances. Any housing and council tax benefits being claimed may be reduced by a claim for working tax credit and child tax credit. The Social Fund If you are receiving Income Support then you may be able to obtain financial help towards large, one-off costs through the Social Fund. Grants or repayable loans may be awarded, depending on your individual situation. Winter Fuel Payments If you are 60 years of age or over, you might also be able to get a Winter Fuel Payment to help pay your gas and electricity bills in the winter. 3
Prescriptions and help with health costs If you not eligible for Income Support, you may still be entitled to some help towards health costs, such as prescriptions, dental costs, eye tests and travelling costs to hospital. The situation for prescription charges is different depending on which country you live in. Check with your nurse or pharmacist to see if you are entitled to free prescriptions. If you are not entitled to free prescriptions and you need a lot of medication, you can cut the cost by buying a pre-payment certificate for four months or a year. This is likely to save you money if you need more than one prescription item per month. More information can be obtained from the Prescription Pricing Authority (contact details below). Note: Claiming Incapacity Benefit does not automatically entitle you to free prescriptions. Charitable grants There are some charities that may be able to provide discretional financial help depending on your individual circumstances, ask your social worker about these. Further information and useful organisations Benefit Enquiry Line 0800 88 22 00 (Monday Friday, 8.30am 6.30pm; Saturday, 9am 1pm) The Benefit Enquiry Line is a confidential advice and information service for people with disabilities, and their carers and representatives. The enquiry line provides information about social security benefits and how to claim them, and can provide assistance, over the phone, with filling out benefit application forms. Blue Badge Scheme 0207 944 2914 (Monday Friday, 9am 5pm) www.dft.gov.uk/transportforyou/access/bluebadge The Blue Badge Scheme provides a national arrangement of on-street parking concessions, enabling people with severe walking difficulties who travel, either as drivers or passengers, to park close to their destinations. To apply for a badge, contact the social services department of your local authority or council. Carer's Allowance Unit 01253 85 61 23 (Switchboard, ask for the Carer's Allowance Unit; Monday Thursday, 9am 5pm; Friday, 9am 4:30pm) General information about the carer's allowance, and assistance with filling in the application form. Citizens Advice Bureau (CAB) 020 7833 2181 (Monday Friday, 8am 6pm) www.nacab.org.uk Citizens Advice Bureau offers advice about debt and consumer issues, benefits, housing, legal matters and employment. They provide assistance with claiming welfare benefits, including practical help with filling out benefit application forms. Contact the number listed above, visit the website, or check your local telephone directory for details of your nearest branch. Directgov www.direct.gov.uk A government website providing information about a wide range of public services, including benefits such as Attendance Allowance, Disability Living Allowance and Carer's Allowance. 4
Disability Benefits Unit 0845 712 3456 (Monday Friday, 7.30am 6.30pm) Provides advice and information about the Attendance Allowance and the Disability Living Allowance. Call to request a claim pack. Financial Services Authority (FSA) 0845 606 1234 (Financial Services Authority Consumer Helpline; Monday Friday, 8am 6pm) www.moneymadeclear.fsa.gov.uk The Financial Services Authority is the watchdog set up by government to regulate financial services. Money Made Clear is an online service from the FSA to provide clear, impartial information about financial products and services, helping you to make an informed decision. Help with Health Costs 0845 850 1166 (Monday Friday, 8am 6pm; Saturday, 9am 3pm) www.nhs.uk/healthcosts Help with Health Costs gives information about prescription charges and getting help with health costs. They also issue exemption from health costs certificates, and prescription pre-payment certificates. Job Centre Plus 0800 055 6688 (Monday Friday, 8am 6pm) www.jobcentreplus.gov.uk Information and claims service for Income Support, Incapacity Benefit, Job Seekers Allowance and Employment and Support Allowance. Independent Financial Advice Promotion (IFAP) www.ifap.org.uk Independent Financial Advice Promotion is the industry body responsible for promoting independent financial advice in the UK. They provide a UK-wide list of authorised financial advisers on their website. IFAP also produces a wide range of publications covering various aspects of financial management, including mortgages, savings, investments and pensions. IFAP does not operate a helpline service. National Debtline 0808 808 4000 (Monday Friday, 9am 9pm; Saturday 9:30am 1pm) www.nationaldebtline.co.uk Offers free, confidential and independent advice on how to deal with debt problems. The Pensions Advisory Service 0845 601 2923 (Monday Friday, 9am 5pm) www.pensionsadvisoryservice.org.uk The Pensions Advisory Service is an independent non-profit organisation that provides free information, advice and guidance on the whole spectrum of pensions, covering state, company, personal and stakeholder schemes. The Pension Service 0845 6060 265 (Pension helpline; Monday Friday, 8am 8pm) 0800 99 1234 (Pension credit information; Monday Friday, 8am 8pm) 08459 15 15 15 (Winter fuel payments helpline; Monday Friday, 8am 5pm) www.thepensionservice.gov.uk Part of the Department for Work and Pensions, the Pension Service provides information about pensions and benefits, for current and future pensioners. 5
About this Infosheet The information in this Infosheet is not meant to replace the advice of your GP or medical team. They are the best people to ask if you have questions about your individual situation. All Myeloma UK publications are extensively reviewed by patients and healthcare professionals before publication. Other AL amyloidosis information available from Myeloma UK Myeloma UK has a range of AL amyloidosis Essential Guides, Infoguides and Infosheets covering many aspects of AL amyloidosis, its treatment and management, and other topics relevant to patients and carers. To order your free copies, contact the Myeloma UK Infoline on 0800 980 3332. This information is also available to download at www.myeloma.org.uk/amyloidosis Myeloma UK also provides information on myeloma, plasmacytoma and MGUS (Monoclonal Gammopathy of Undetermined Significance). To talk to someone about any aspect of AL amyloidosis, call the Myeloma UK Infoline on 0800 980 3332. The Infoline is open from Monday to Friday, 9am to 5pm, and is free to phone from anywhere in the UK. From outside the UK, call +44 131 557 3332 (charged at normal rate). Author: Eve Hallam, MNursSci RN, Myeloma UK Issue date: May 2009 6