REAL LIFE STORIES
Meet the mums we support and read their stories
WHO WE ARE
Meet the mums we support and read their stories
The news of a pregnancy or a recent birth is an exciting time for all prospective and existing parents. It can, however, be cruelly interrupted by the news of a cancer diagnosis and the worry that this brings to both you and your wider family.
Mummy’s Star has been set up specifically to offer support if you find yourself in this situation and we hope that by providing comprehensive information and links in this section, it will help you to get the support you need, access services that are available to you but most importantly know that you are not alone when you are going through this.
The information contained here is reviewed on an ongoing basis and will also be added to as new information becomes known about cancer in pregnancy. Likewise, as we receive more enquiries, we will add to the FAQs section in order to be able to try and answer as many of your questions in one place as possible.
Please contact us here and we can discuss more specifically how we can support you and your family.
REAL LIFE STORIES
Meet the mums we support and read their stories
WHO WE ARE
Meet the mums we support and read their stories
PREGNANCY | BIRTH | LOSS | BEYOND
CANCER SUPPORT IN & AROUND
KNOWLEDGE AROUND CANCER & PREGNANCY
Answers to your cancer and pregnancy questions
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What financial help is there?There is specialist advice available to help you to manage your finances, including Local Government agencies and advisors at cancer support centres, but if you have an immediate need you can consider: Mummy’s Star Grants Mummy’s Star operates a small grants programme to help support families in this specific situation. Full details of this can be found on the GRANTS section including guidelines, application form and what we require to process an application. Our grants are non means tested. Macmillan Grants These applications are normally completed by a Macmillan professional and will include supporting information showing how your needs are connected to the impact of the cancer. Please check eligibility and criteria by visiting www.macmillan.org.uk/cancer-information-and-support/get-help/financial-help/macmillan-grants Welfare Advice It is also worth speaking to a MacMillan Welfare Advisor, they may be able to get money off your heating costs and other help you may not know about. You can find out more by calling them on 0800 808 00 00 or going online to www.macmillan.org.uk Treats and Gifts There are a number of organisations that we work with that can provide additional treats and gifts for cancer patients including days out, short breaks, pamper sessions and more. Get in touch or speak to your Mummy’s Star Information and Support Worker for more information.
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I am worried about money, who can I talk to?"Get professional advice Local Cancer centres often have a free service available for you to speak to someone about your finances, be that managing a budget better, benefits advice or debt management. Sometimes discussing your situation with a professional can really help to gain some perspective and make it all seem a little bit more manageable. It is also worth finding out if your local government offers a Welfare Rights Service or Citizens Advice Bureau. Your Mummy’s Star Information and Support Worker can help you find your local service if you need help. Set a Budget Sometimes having a proper look at your spending and budget can prove really useful, this online form is a good starting point. finance.macmillan.org.uk/budget-calculator You might find there are places you can cut costs that you haven’t considered or assess the real impact of your situation. A budget will also help if you need to speak to an advisor about benefits or debt management. MacMillan Information and Support Centres Macmillan Cancer Support has lots of guidance and information about benefits and financial matters. You can find out more by calling them on 0800 808 00 00 or going online to www.macmillan.org.uk. If you would prefer to speak to someone in person, you can find your nearest Macmillan benefits advisor at www.macmillan.org.uk/in-your-area/choose-location.html
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Which benefits can I claim?Claiming different benefits can be a minefield, especially when you add in maternity pay and leave. However, there are a few different benefits you could claim. Here are the key benefits and an outline of how/when to claim. It’s always best to speak to a specialist benefits advisor, they can help you navigate all the different possiblities. Your local cancer care centre may have someone you can talk to and you can contact us if you’re still unsure. Benefits / Tax Credits / Universal Credit You can only claim one of the following benefits at any one time. Statutory Sick Pay (SSP) SSP is paid by your employer for up to 28 weeks at a rate of £94.25 per week. You may also get more money as part of occupational sick pay, check with your employer if you’re not sure. You must have done some work for your employer and earn at least £118 (before tax) per week to qualify. For more information please visit www.gov.uk/statutory-sick-pay Employment Support Allowance (ESA) You can apply for ESA if you are not eligible for SSP or if your SSP has come to an end. You can also apply for ESA if you are unemployed. You will be required to complete a Work Capability Assessment. ESA is a more complex system and payments depend on a number of different factors, payments range from £73.10 to £111.65 per week. You can apply for ESA up to 3 months before your SSP ends so you can begin claiming ESA straight away. For more information please visit www.gov.uk/employment-support-allowance Budgeting Loan You can apply for a Budgeting Loan if you’ve been on income-related ESA for at least 6 months. However, this is a loan and must be paid back. You only have to pay back the amount you borrow, and repayments are taken automatically from your benefits. They can only be used for certain items. www.gov.uk/budgeting-help-benefits/eligibility Statutory Maternity Pay (SMP) If you are employed, your employer must pay you 90% of your weekly earnings for the first 6 weeks. Then £148.68 or 90% of your average weekly earnings (whichever is lower) for the next 33 weeks. It is paid in the same way as your normal wages and National insurance and tax will be deducted. You may get more money if you receive Occupational Maternity Pay, check with your employer if you’re unsure. For more information please visit www.gov.uk/maternity-pay-leave/pay Maternity Allowance (MA) If you don’t qualify for SMP you might be able to claim MA. This is a more complex system and can affect other benefits you receive. It is usually paid to people who are self-employed. You can claim Maternity Allowance once you’ve been pregnant for 26 weeks. Payments can start 11 weeks before your baby is due. For more information please visit www.gov.uk/maternity-allowance/overview Shared Parental Leave (SPL) and Statutory Shared Parental Pay (ShPP) Each parent qualifies separately. If you’re eligible you can start SPL and take leave in separate blocks, instead of taking it all in one go like maternity or adoption leave. You can also share the leave between you if you’re both eligible. If you decide to end your Maternity Leave and your partner claims ShPP you can then claim SSP or ESA. You can also claim ShPP and SPL at the same time if you have a binding agreement from your employer to end your maternity leave. For more information please visit www.gov.uk/shared-parental-leave-and-pay/overview In addition to one of these benefits you may be able to apply for the following: Personal Independence Payment (PIP) formerly Disability Living Allowance (DLA) You can claim PIP whether you are working or not. PIP is not classed as income in the same way other benefits are and will not reduce other payments. To qualify for PIP, you must have had difficulties moving around or caring for yourself for three months and you must expect these difficulties to last for more than nine months. This doesn’t mean you necessarily need to be having treatment for this amount of time. You may have difficulty leading up to diagnosis and depending on your type of treatment you can reasonably expect some side effects to last anything from 3- 12 months after it finishes. If you claim PIP, your mobility will be assessed by a health professional, this may be done in person or sometimes over the phone. It is based on how the disability affects you, not on the condition you have. There are two components to Personal Independence Payment. One, is a daily living component, which includes help with preparing food, bathing and dressing and two, is a mobility component, if you need help getting around. Payments can vary between £23.20 and £148.85 depending on your needs. If you already get Disability Living Allowance, you will eventually be invited to claim Personal Independence Payment. You can make a claim by calling the DWP on 0800 917 2222. In Northern Ireland the introduction of PIP is still under consideration. For more information please visit www.gov.uk/pip. Claiming PIP can also have an impact on other claims and benefits: Carers allowance If your partner, family member or friend cares for you more than 35 hours per week they can claim carers allowance. Many people, partners especially, may not see themselves as carers. But being a carer can include sitting with you at appointments, making meals for you and even just being in the house while you are sleeping in case they need your support (including overnight). There are special rules to consider though especially regarding the carers income. For more information please visit www.gov.uk/carers-allowance Disabled Worker Element If you have decided to return to work you may be able to claim the disabled worker element of tax credits. To qualify, as a result of an illness you are undergoing a period of habilitation or rehabilitation. For more information please visit www.gov.uk/working-tax-credit/overview Severe Disability Element If you claim PIP and you are not working you may also be able to make an additional claim for the ‘severe disability element’. This element is different to the disabled worker element. You can get this even if you don’t qualify for the disabled worker element. If you are one of a couple, there is no requirement that the disabled person must work to get this element, so if the worker has a partner who doesn’t work but meets the conditions, the couple will get the severe disability element. This is particularly important if you are claiming the childcare element of Working Tax Credits. Claiming this element means you are not expected to look after your children because you are at home and the childcare element can still be paid. For more information please visit www.gov.uk/working-tax-credit/overview Also there is the possibility of claiming for housing benefit and council tax reductions. Housing Benefit and Council Tax Reduction/Support If you are on a low income and pay rent, you may be able to apply for housing benefit. This can pay all or part of your rent. Please follow the link for more information or get in touch with your local council www.gov.uk/housing-benefit/overview. As with housing benefit, you may be able to claim a reduction in your council tax. www.gov.uk/apply-council-tax-reduction Please note: You cannot claim these benefits if you have savings over £16,000. Please contact us if you need any help.
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What if I don’t feel disabled and I don’t like the idea of being on benefits?Many people feel this way. It’s sometimes difficult to accept support and many of us feel a sense of pride about not claiming benefits. However, you automatically meet the disability definition under the Equality Act 2010 the day you are diagnosed with cancer. This is to help and protect you. Having a cancer diagnosis and accepting this in purely definitive terms can give you access to benefits, support and legal rights that technically class cancer as a disability.
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Can I get help with prescriptions, other medical costs and benefits?"The help you can get to pay for prescriptions is different across the UK. In England, prescriptions are free for people with cancer. If you need prescriptions for anything related to cancer or its effects, you can apply for an exemption certificate. Your CNS or GP will be able to help you with this. This covers you for all prescriptions, not just those relating to your cancer treatment. In Scotland, Wales and Northern Ireland, prescriptions are free for everyone.
The following links are to NHS guidelines on eligibility for health costs: • nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts • nhs.uk/NHSEngland/Healthcosts/Pages/nhs-low-income-scheme • nhs.uk/NHSEngland/Healthcosts/Pages/Wigsandfabricsupports You are also entitled to free prescriptions if you or your partner (including civil partners) are named on, or are entitled to, an NHS tax credit exemption certificate or a valid HC2 certificate (full help with health costs), or you receive either: • Income Support.
 • Income-based Jobseeker’s Allowance.
 • Income-related Employment and Support Allowance or Pension Credit Guarantee Credit.
 • Universal Credit.
 Find out more about the NHS Low Income Scheme (LIS): link nhs.uk/using-the-nhs/help-with-health-costs/nhs-low-income-scheme-lis or Universal Credit at:www.nhs.uk/using-the-nhs/help-with-health-costs/help-with-health-costs-for-people-getting-universal-credit
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Do you want to know more about end of life finances?Benefits Most people who need care towards the end of their lives qualify for disability benefits. These include: Personal Independence Payment (PIP) This benefit is not means-tested. This means the amount of money you have does not affect whether you can get the benefit. You can apply for these benefits using a fast-track process if: you are terminally ill your doctor thinks you may reasonably be expected to live for less than 6 months. This is called ‘special rules’. Your claim will be dealt with quickly and you will automatically be paid the higher rate. Special rules claims for PIP applies for up to 3 years. Under special rules, you can also apply for: Employment and Support Allowance If you are unable to work because you are ill. Universal Credit If you are out of work or on a low income. You will need to explain that you are claiming under special rules when you claim the benefit. Your cancer doctor or specialist nurse will also need to fill out a form called a DS1500 and send it to: the Department of Work and Pensions in England, Scotland or Wales the Disability and Carers Service in Northern Ireland. They aim to get your payments to you within 2 weeks of sending the DS1500. You can also speak to your Mummy’s Star Information and Support Worker. They can give you some support around claiming benefits and help you fill in claim forms. You can also get more information and apply for certain benefits by visiting: gov.uk if you live in England, Scotland or Wales nidirect.gov.uk if you live in Northern Ireland. Grants There are lots of organisations that offer grants to people in need. You may be able to apply for a Mummy’s Star Grant by speaking to your Information and Support Worker, even if you have already had one from us. Other places to ask for help are: Government and Local Councils. Different areas have local welfare schemes that provide grants and loans. Contact your local council to find out what help you can get in your area. They may have a specialist advisor who can help you with a number of financial issues and sit down to discuss this with you. Visit gov.uk if you live in England, cosla.gov.uk if you live in Scotland, or wlga.wales if you live in Wales. Utility Companies (gas, electricity and water companies) There are different types of support available if you are struggling with utility bills. Your energy supplier may be able to give you a grant, a discount or a better payment arrangement. There are also energy-saving schemes and government grants to reduce your costs. Charities and other Organisations Macmillan Grants are small payments to help people with the extra costs that cancer can cause. They are usually a one-off payment. They are for people who have a low level of income and savings. You apply through a health or social care professional. The Macmillan Grants team processes your application on the day they get it. If your application is approved, payments are usually sent out within 3 working days. Turn2us help people find specific charities that may be able to offer financial help. Other financial things to think about There may be other things to sort out, such as bank accounts and pensions. Bank Accounts Your bank accounts will be frozen when you die. This means money can only be taken out if the person carrying out the instructions in your will transfers it. It is their job to tell the bank that you have died. In England and Wales, if you have a joint bank account with another person such as a partner, any money left in the account belongs to them. But in Scotland, any money you put into a joint account still belongs to you when you die. It then becomes part of your estate. Pension Schemes You can nominate someone as your beneficiary using a legal nomination form provided by your pension scheme. This means that whatever is left in your pension when you die may pass directly to them, but this depends on the terms and conditions of your pension scheme. Make sure your pension provider has up-to-date details of your beneficiary. If you have more than one pension remember to tell all your providers. Writing or Amending your Will We appreciate that the thought of writing your will may be daunting, but they are usually very simple to do and give you peace of mind that your wishes will be carried out when the time comes. We recommend you speak to a solicitor or professional will writer when making your will. This will help to ensure that your wishes can easily be followed when you die. To find a local solicitor please visit solicitors.lawsociety.org.uk If you are planning for end of life or are recently bereaved please visit our dedicated section on end of life support.
Knowledge around cancer and pregnancy (inc. Signs and Symptoms)
News of a cancer diagnosis during pregnancy or shortly after birth is often met with shock. Many people tell us that they did not know it was possible. However, cancer can be diagnosed at any time in any person and therefore the diagnosis during pregnancy is a coincidence rather than a cause.
Due to the many-body changes during the course of pregnancy and in the weeks after delivery, some of the early signs of cancers can be mistaken for being pregnancy-related. We refer to this as ‘symptom shielding’. It is correct to not wish to alarm women into thinking that everything they feel could be the sign of something far more sinister but body awareness is key.
Approximately 2 women a day receive a diagnosis of cancer in pregnancy/postnatally. This equates to 1 in every 1000 pregnant women (Public Health England 2018).
While there has not been a huge amount of research carried out into this area, general guidance is to follow treatment plans for non-pregnant women as closely and safely as possible. This means working to maintain birth preferences and choices for your partner.
You can find good information about cancer and pregnancy by visiting INCIP (International Network on Cancer, Infertility and Pregnancy cancerinpregnancy.org.
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We work closely with members of INCIP to raise awareness of the choices families have in this situation.
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Treatment & options
We realise having a cancer diagnosis can be overwhelming and worrying. Being pregnant or a new mum with a baby to consider can bring additional fears and practical issues. These are some of the questions that our mums ask:
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