What now?A guide for parents and carers

www.clicsargent.org.uk

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One minute life is carrying on as usual. The next your child is diagnosed with cancer and your world has turned upside down. Parents often say it’s as though their old life stops and a ‘new life’ begins.

You may still be struggling to take in the news. Some parents talk about everything being a ‘blur’ to begin with. They talk about feeling swamped with information and yet unable to take any of it in. Others describe the shock of seeing a children’s cancer ward for the first time.

On a practical level, life is likely to feel like an endless round of medical tests and procedures. If your child is an inpatient, you are probably still getting to grips with ward life. And, if your child has been referred to a specialist cancer hospital, you may be miles from home and family.

Each family’s experience of childhood cancer is unique – from how the illness affects your child to the way family life is changed. But, whatever your experience over the coming weeks and months, you’ll find there is plenty of help and support available when you need it.

CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families. We provide clinical, practical and emotional support to help them cope with cancer and get the most out of life.

Families have helped us put together this booklet for parents of children under 16, using their own experiences after diagnosis. There are no perfect answers and everyone deals with things differently. But at least we can tell you some of the ways your child’s cancer diagnosis is likely to affect you and your family, and who you can go to for help. You’ll find more information about how CLIC Sargent can help you and your family on page 29 of this booklet.

My child has cancer. What now?

“When you meet with the consultant for the first time you can’t retain anything but the fact that your child has cancer.”

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ContentsFirst thoughtsWho is helping my child? 5

How can I find out more? 7

Coming to hospital 9

Help for you and your familyAdjusting to ward life 12

Talking to your child 14

Telling other people 15

How brothers and sisters may feel 16

Pros and cons of online support groups 17

What about money? 18

Moving forwardWhat about school? 22

What about work? 24

Emotional and practical support 26

Looking to the future 28

How CLIC Sargent can help 29

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Who is helping my child?Over the next few weeks, and throughout their treatment, your child will be cared for by a large team of people. This is known as a multi-disciplinary team (MDT). Depending on your child’s age, and the type of cancer they have, the team could include:

c Paediatric haematologists – doctors who specialise in blood disorders, including leukaemia (cancer affecting the blood), in children

c Paediatric oncologists – doctors who treat children with cancer c Outreach nurses – provide treatment and support out in the community

c Radiographers – take X-rays, perform specialised scans and give radiotherapy treatment

c Specialist nurse key workers – deliver and coordinate children’s care in the hospital and the community

c Surgeons – doctors who carry out operations c Ward nurses – some may be specialist nurses who work with children who have cancer (paediatric oncology nurses)

c Ward doctors – most of the tests and treatments will be done by these doctors, under the supervision of the paediatric oncologist or haematologist

c Anaesthetists and intensivists – specialist doctors who manage your child’s breathing and specialist medical care if they need an anaesthetic or intensive care.

Another important member of the team is your CLIC Sargent Social Worker. They will help coordinate the non-clinical care of your child and can support you with practical, emotional and financial issues you may face.

“At first it was all just a blur of doctors and nurses and operations.”

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More professionals you might meet as your child’s treatment continues include:

c Dentists – make sure your child’s teeth stay healthy during treatment (this helps to reduce the risk of infections)

c Dietitians – help to support you with feeding your child and managing their weight during treatment

c Hospital teachers – provide education for children while they are in hospital

c Occupational therapists – often involved when your child needs help returning to normal activities, perhaps following surgery

c Pharmacists – prepare and dispense medicines for your child. Oncology pharmacists have specialist knowledge about children’s cancer medicines, the best formulas to use at home and how to manage side effects

c Phlebotomists – carry out skin-prick testing and take blood samples

c Physiotherapists – help children who have problems with movement or breathing due to cancer or treatment

c Play specialists – use play and activities to teach children more about their treatment and what to expect, so that they are better able to cope with treatment

c Psychologists – help children with specific difficulties and also support you as a family

c Radiologists – doctors who interpret X-rays and scans

c Young people’s support workers – offer age-appropriate help and support to young people with cancer from around the age of 13.

In this booklet we usually direct you to your CLIC Sargent Social Worker as your first port of call. Your nurse is also there to help with any questions or concerns you might have and can also help you access support. In time you will get to know other members of your child’s care team; all of them will want to support you and to find the right person in the team to help you.

You can also contact us on 0300 330 0803 and we’ll put you in touch with someone who can help.

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How can I find out more?Many families have told us that information is key after their child is diagnosed with cancer. Wanting to understand as much as you can is natural. However, it’s not always easy to take in the information your child’s doctor or other professionals give you.

Parents also tell us that they need to know what to expect so that they can prepare – for the best or the worst. The most difficult thing, they tell us, is dealing with the uncertainty. That’s why so many parents turn to the internet.

If you type the name of your child’s cancer into a search engine you will get a long list of results and many that are only relevant to adult cancers. This can be daunting. Where do you start? Which websites can you trust? What do treatment and recovery rates mean for your child? It’s important to remember that different cancers affect different people in different ways. It’s almost impossible to predict what course your child’s cancer will take, no matter how much internet research you do.

If you are feeling confused, try going back to your child’s consultant or nurse and asking them to explain things again. They’ll be happy to help you.

“I’m afraid the internet is a double-edged sword. It’s great for information, but you know the

saying – a little knowledge is a dangerous thing.”

“It’s the big words – leukaemia, cancer or whatever it is. They’re the ones that stick in the

brain. The rest of it just goes over your head.”

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Before you start googling… c Think first about how you’ll feel if you read something you don’t like

c Ask your child’s doctor, nurse or CLIC Sargent Social Worker for advice about websites with the most reliable information

c Consider giving the task of internet research to a trusted family member or friend who

isn’t as closely involved. They may be able to filter and balance the information better

c Be conscious that you are more likely to remember the negative things than the positive ones

c You may find reading difficult material with someone you trust easier than reading it alone.

Top tipsIf you do research on the internet, try to:

c Limit the time you spend online c Only visit official websites, such as those run by registered UK cancer charities like CLIC Sargent, Children’s Cancer and Leukaemia Group (CCLG), Cancer Research UK and Macmillan Cancer Support, or by the NHS

c Check that any research has been published in an authoritative medical journal

c Remember that claims of miracle cures or treatments may not be backed up by proper research

c Check the date of any research to make sure it’s up-to-date c Remember that all numbers and statistics are open to interpretation.

Some reputable cancer organisations produce useful information and advice about the internet – see page 26 for more details.

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Coming to hospitalYou may still be feeling shocked and numb about what has happened. But there are a few practicalities that you’ll need to think about in the days and weeks ahead.

AccommodationMost children’s and young people’s wards have space for one parent or carer to stay while their child is having treatment. Some have rooms where other family members can stay too. Most hospitals have laundry facilities where you can wash clothes. The hospital may have other self-catering accommodation, though you may have to pay for this and it may not always be available.

Some of the children’s cancer centres have a CLIC Sargent Home from Home nearby. These offer free self-catering accommodation where families can stay while their child is having treatment, and siblings are welcome too. Ask your CLIC Sargent Social Worker for more information.

TravelTravel to and from your child’s hospital, whether by car or public transport, can be expensive. If you are on a low income and receiving benefits, the hospital may reimburse part or all of your travel costs so remember to keep your receipts. Free hospital transport may be available too, if your child has clinical needs that make using public transport impossible.

Check with your child’s consultant or nurse to confirm whether it’s okay for your child to travel by public transport.

MoneyTo help you meet the sudden extra costs that a cancer diagnosis can bring, CLIC Sargent provides a one-off grant that you can use to cover food, travel or other day-to-day costs. Talk to your CLIC Sargent Social Worker about this.

You may also be able to access other grants and certain benefits to help with extra costs. See page 18 for more information.

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Useful travel websites c For local public transport information in England, Scotland and Wales visit www.traveline.info

c For public transport information in Northern Ireland go to www.translink.co.uk

c For train times and information in England, Scotland and Wales go to www.nationalrail.co.uk

c To plan a journey and view area maps, visit www.maps.google.co.uk

ParkingThe cost and availability of parking varies from hospital to hospital. Check the hospital’s website for details. You may be able to buy a weekly, monthly or even annual parking permit that works out cheaper. Ask your CLIC Sargent Social Worker if this is available at your child’s hospital.

A Blue Badge can also help with parking costs. Your local authority may issue one if your child has mobility problems.

What you’ll need in hospitalHere are some of the items you’ll need to bring from home:

c Phone charger c Toiletries c Books and magazines c Clothes for you and your child c Pyjamas, slippers and dressing gown c Brush or comb c Diary or organiser c Pens c Your child’s favourite toys and games c Washing powder or liquid.

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Electrical items will need to be tested before you can use them on the ward. Healthcare assistants on the ward can usually organise this for you quite quickly.

Many parents have told us they found it useful to have a packed bag by the door, or in the boot of the car, for unexpected trips to hospital.

ChildcareIf you have other children who will need looking after while you are at the hospital, and finding consistent childcare is a problem, talk to your CLIC Sargent Social Worker who may be able to help. If you or your partner is an employee, you/they may be entitled to time off for dependants in order to organise emergency childcare (see page 24).

In the longer term, it’s a good idea to find someone who is willing to look after your other children at short notice if you need to take your child to hospital unexpectedly, or they are admitted from the outpatient clinic.

You’ll find links to the websites of many of the UK hospitals that treat children with cancer at www.clicsargent.org.uk/in-my-area. Most hospitals also provide their own information about the wards, hospital facilities and local area.

“It’s hard to think about practical things when you’re so

preoccupied with your child.”

“We arrived in an ambulance in the middle of the night. I didn’t brush my teeth or have a

change of clothes for three or four days.”

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Adjusting to ward lifeIf your child has been admitted to hospital, they are probably staying on a children’s cancer ward. These are generally friendly, positive places and staff will offer both you and your child plenty of help and support.

Even so, many parents tell us they found seeing the ward for the first time challenging. They say it’s hard to see other children who have no hair, who have tubes and drips or who look unwell.

It may be helpful to know that children usually only stay on the ward when they need inpatient treatment or if they are very unwell. Many children are eventually able to get on with their lives while continuing cancer treatment at home, at an outpatient clinic or during short stays in hospital.

You may find the lack of privacy on the ward difficult at first. Feel free to draw the curtain round and spend some quiet time with your child when you need to. Occasionally, but not often, you may be asked not to do this if staff want to closely observe your child, or the child in the next bed and the curtain blocks the view. Just ask if you aren’t sure. Most children’s wards have staff and facilities to help keep your child occupied – ask a member of staff what’s available.

Only your child is eligible for hospital meals, but there will usually be a kitchen where you can make a cup of tea and possibly prepare snacks. There are usually showers available for parents and a place to wash your clothes.

Many hospitals now have special wards or areas for teenagers who have cancer, where the facilities are better suited to older children.

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Tips for coping with ward life c Aim to get off the ward for a short break each day, even if it’s just for a quick coffee or a walk around the block. Ward staff will support you with this. When you leave the ward, let a member of staff know how long you’ll be gone, and how to contact you if necessary

c Try to keep things as normal as possible for you and your child, and that includes the usual boundaries you set for their behaviour

c If you have any worries or questions, talk to a member of your child’s care team – they will have the answers you need. It may be helpful to write down questions as they occur, so you remember them

c Most children’s wards have a TV and video games available, and these can be a useful way for you and your child to build relationships with other families

c Try taking an active role in your child’s care by helping them with meals, wheeling their drip, taking them to the toilet and so on

c If your child is struggling to cope with aspects of treatment, most children’s wards have play specialists who can help. They use play and activities to help children understand what’s happening with their treatment.

If you are unhappy with your child’s care or questioning the reasoning behind a decision, ask to speak to the nurse in charge. Many things can be resolved quickly. If not, ask for an appointment with the ward manager.

If you still feel the problem hasn’t been resolved, you can go to the hospital’s Patient Advice and Liaison Service (PALS) office for confidential advice and support. Visit www.nhs.uk and search for ‘PALS’ to find out more.

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Talking to your childParents tell us that one of their biggest concerns after diagnosis is what to say to their child about their cancer and its treatment. Children all have different levels of understanding, and it can be hard to know what information they need and which words to use.

If you aren’t sure what to say, or how to say it, perhaps start by taking a look at a children’s storybook about cancer (see page 27). You may not want to use the stories directly with your child. But they will give you an idea of the words to use and how things can be explained simply and clearly.

While it’s not possible to talk to babies and toddlers about what’s happening, your calming, reassuring presence is vital, particularly during medical procedures. Play specialists are also very skilled at using play to help young children understand what is happening.

Top tips c Keep it simple and do it gradually – you may need to repeat all or part of what you say several times

c Be as honest as you can c A good starting point can be to ask your child what they think is happening

c Ask if there is anything they are worried about

c Ask if there is anything they have not been able to ask but would like to

c Don’t feel you have to have all the answers

c Do remember that it’s fine if they don’t want to talk about it – just reassure them that you are happy to talk about it and answer any questions when they are ready

c Remember to revisit the conversations as your child gets older. They may forget some things they were told when they were younger.

Remember, support is always available. You can speak to your CLIC Sargent Social Worker if you need more help and guidance.

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Telling other peopleLots of parents say how difficult they find telling friends and relatives that their child has cancer. And yet it’s important that you don’t put it off.

The people closest to you can be a huge source of strength and support to your family at this difficult time and throughout your child’s cancer treatment.

Many people find that support from other friends and acquaintances can be really helpful too. People you are not quite so close to can offer practical help when things are difficult.

Everyone is different, but you may find it helps to be open and honest about your child’s illness and treatment. Although it can be daunting, telling others may help you to make sense of the situation yourself and feel more in control.

When telling others about your child’s diagnosis: c Start by thinking about who needs to know and then who you need to speak to personally

c Don’t feel you need to tell everyone everything at once

c Is there someone you can ask to let others know on your behalf?

c You may find it easier to break the news over the phone

c Start by saying something like: “I’m afraid I’ve got some worrying news…”

c Tell your friend or relative what’s happening a few sentences at a time – like you, they won’t be able to take in too much in one go

c Try not to be upset if they don’t seem to know what to say – this is very normal to begin with.

If necessary your CLIC Sargent Social Worker can help with telling other people. They can also offer support to any family members who are finding it particularly difficult to cope with the news.

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How brothers and sisters may feelYour child’s siblings may be feeling worried about their brother or sister. If you are at hospital a lot they may be missing you and, of course, your regular family routines may have been disrupted. They might worry that they have somehow caused the cancer, perhaps because of arguments, and younger children may also worry about ‘catching’ cancer.

It can be tough when your other children look to you for reassurance when you have your own worries. The tips below may help.

Tips for talking to siblings c It can be hard, but try to make time for your other children and give them opportunities to talk

c Asking questions like: “Do you think your sister is getting better?” can help children to start talking

c Children’s storybooks about cancer are another useful way to start a conversation (see page 27)

c It’s fine if children don’t want to talk – just let them know that you are happy to do so when they feel able to

c Let them know that sharing worries with other people often makes things easier

c Think about including siblings’ friends in conversations so that they can help support them

c Tell siblings you will keep them informed about what’s happening every step of the way

c Talk to their schools too, so that they can offer them support c Asking questions that aren’t about your child’s illness, like: “What’s going on with you at the moment?” will let siblings know you’re thinking of their feelings too.

Some hospitals have support groups for siblings. Your child’s care team or CLIC Sargent Social Worker will have more information.

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Parents have told us that they feel their old lives stop when they receive their child’s diagnosis. Some feel they benefit from talking to people with similar experiences.

Online forums and self-help groups can provide this kind of support. At their best they can provide comfort, making you feel less alone or isolated. However, parents have also told us that some groups may not be so helpful. Parents have helped us create these pros and cons of online support groups, blogs and forums.

They work well when: c They provide moral support and understanding in a safe, responsible environment

c They reduce anxiety about the diagnosis or symptoms.

They don’t work so well when: c Individuals within the group encourage others to use alternative therapies rather than prescribed medication

c Moderators are not suitably monitoring the group c Posts are highly negative without being balanced by positive feedback

c Posts claiming to be factual prove to have no scientific basis c You feel pressure to donate money or buy a product.

If you don’t feel comfortable with a group, forum or blog you can always leave. If in doubt, talk to your CLIC Sargent Social Worker.

CLIC Sargent has a supportive online community, called The Forum, where you can create your own profile, share your story and meet other parents on our message board. To get started go to www.clicsargent.org.uk/forum

Pros and cons of online support groups

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You will almost certainly have extra costs while your child is being treated for cancer. We know parents find this a worry, especially if you also have to reduce your working hours to care for your child. It may be a comfort to know that financial help is available in the form of benefits, allowances and grants, some of which are listed below.

Claiming benefits and allowances involves filling in lots of forms. Parents often say they simply can’t cope with this in the early weeks after their child is diagnosed. At the same time, it’s important to claim as soon as possible because some payments can’t be backdated.

Your CLIC Sargent Social Worker can help you fill in forms and put you in touch with specialist advice and support.

For a detailed review of what you’re entitled to, contact the CLIC Sargent welfare advice service on 0800 915 4439 or welfareadvice@clicsargent.org.uk

Disability Living Allowance (DLA)This is a benefit for children under 16 who have a serious illness or disability. In most cases a child has to have increased care needs because of their illness or disability to be eligible. The amount you can receive depends on the level of care your child needs.

Personal Independence Payment (PIP)PIP has replaced DLA for young people aged 16 or over, whether they are in or out of work. It’s designed to help them live as independently as possible and deal with extra costs caused by illness or disability.

What about money?

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Carer’s AllowanceYou may be able to claim this allowance if your child gets the middle or high rate of the care component of DLA, or the PIP daily living component, and you earn less than a set amount per week. Receiving Carer’s Allowance can affect how much you get from some other benefits.

Universal Credit This means-tested benefit is being gradually introduced across England, Scotland and Wales between 2013 and 2017, and is expected to be introduced in Northern Ireland as well.

Universal Credit is for people of working age, and will replace income-based Jobseeker’s Allowance, income-related Employment and Support Allowance, Income Support, Working and Child Tax Credits and Housing Benefit. Money will be available for people who have childcare or housing costs, caring responsibilities, or a limited capability for work due to a disability or health problem.

For many people, the benefits due to be replaced by Universal Credit will still apply for some time yet. If you aren’t sure when the changes will affect you, contact CLIC Sargent’s welfare advice service on 0800 915 4439 or welfareadvice@clicsargent.org.uk

Child Tax CreditIf your child gets DLA or PIP you may be entitled to an additional element of Child Tax Credit.

Working Tax CreditIf you already receive Working Tax Credit and you or your partner have to reduce your working hours, the amount you are entitled to could go up or down or stop altogether, depending on your circumstances.

For all of the above, it’s important to contact the HMRC Tax Credits office about any changes to your circumstances as soon as possible, to make sure you’re getting the right amount.

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Housing Benefit and Local Housing AllowanceIf you are struggling to pay your rent, you may be entitled to Housing Benefit. This is means-tested, so the amount you get is based on your earnings, savings and whether any other adults who live with you.

The amount you get can also be limited by Local Housing Allowance rates depending on where you live, for people living in private rental properties.

Housing Benefit will eventually be claimed as part of Universal Credit – so if you get Universal Credit, it will be up to you to pay your landlord directly.

Council Tax Reduction (CTR)This is also known as Council Tax Support. If you pay council tax, you may be entitled to CTR. How much you can get depends on your circumstances and where you live.

Travel expensesIf you are on a low income and claim benefits, your child’s hospital may help with certain travel costs when you travel with your child. Check with the hospital if you can make travel cost claims, and how to do so.

Utility bills Most energy providers offer income-based grants to clear gas or electricity arrears or help with other household costs. Certain water company customers may also be entitled to help with water charges. Check with your providers.

Benefit capIn England, Scotland and Wales a cap has been introduced which limits the total amount of benefit most people aged 16 to 64 can receive. You may be exempt if your child receives DLA or PIP, if you claim certain benefits, or are working. The cap may be introduced in Northern Ireland too, depending on the Welfare Reform Bill.

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For more details and the most up-to-date information about government benefits and support, visit www.gov.uk or www.nidirect.gov.uk (Northern Ireland).

You can find further information to help you manage your finances and understand benefits at www.clicsargent.org.uk/financialsupport

GrantsCLIC Sargent offers a grant to all families who have a child with cancer, to help with the immediate costs after diagnosis. You may also be able to receive an additional grant from CLIC Sargent or from another charity – ask your CLIC Sargent Social Worker for more information.

MortgageCheck whether you have payment protection on your mortgage. Ask your mortgage provider if you qualify now that your child is ill. It may also be possible to get help with your mortgage costs if you claim certain benefits.

Life insuranceCheck if your life insurance policy includes serious illness cover and, if so, whether this covers your children. You may be able to make a claim.

Motability SchemeDepending on your circumstances, this scheme could help you with the cost of buying, leasing or adapting a car. You can apply if you are the parent or carer of a child over three who gets one of the qualifying benefits. Visit www.motability.co.uk for more information.

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What about school?Getting your child well again is bound to be your main priority at the moment. Yet your child may be having treatment for months, if not years, and it’s important that their education continues. This isn’t just so that your child can keep up with their curriculum. Lots of parents find that schoolwork helps to give their child some much-needed structure and consistency while they go through treatment.

Initially you, or a trusted friend or relative, will need to phone your child’s headteacher to let them know about their diagnosis. Your CLIC Sargent Social Worker, a nurse or your child’s hospital teacher may be able to do this if you prefer. In the coming weeks and months they can also help you liaise with the school and keep them up-to-date with what’s happening.

Hospital schoolMost children’s cancer hospitals have education departments, or schools, that can support your child while they are in hospital. The hospital teachers can contact your child’s school to make a plan for your child’s education. The school can set work that allows your child to carry on learning whenever they are well enough. Your child can even take exams in hospital or at home if necessary.

Home tutorsIf your child is under 16 and in full-time education, they will be entitled to home tuition if they are out of hospital, but not well enough to return to school full-time. Your CLIC Sargent Social Worker can liaise with your local education department about this if you wish.

Staying in touch with friendsThe friends your child has at school are very important to them. While they are in hospital, encourage your child to stay in touch with friends via cards, letters, texts, emails, phone calls, Skype and FaceTime. Your child’s hospital teachers can support you with this. Encourage visits from school friends too, if your child is well enough.

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Going back to schoolIf your child’s health and treatment allow, they may be able to go back to school. This could be part-time to begin with. Some children welcome the chance to get back to school and to see their friends. Others, particularly teenagers, may dread going back. This could be because of changes in their appearance or worries about relationships with their peers.

Some cancer treatments affect your child’s ability to learn, and this can affect their confidence too.

“We have a very good relationship with our son’s school. They sent work for him to do while he was in

hospital and his classmates all sent emails and cards.”

“18 months into treatment our son is spending more time at school than at home and has settled back in nicely.”

Top tips c Ask your child what, if any, information they would like to share with their classmates and teachers

c Provided they feel able, encourage them to do as much schoolwork as they can each day

c Once they are well enough, encourage your child to attend school as much as they can, even if it’s just for a short time each day

c If you and your child wish, your CLIC Sargent

Social Worker or a nurse may be able to speak to their class before they return. They can also help your child to settle back into school

c Make sure a trusted member of staff is always available for your child to talk to if any issues come up, and that your child knows who to go to

c Ask your child’s school friends to help support your child when they return.

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What about work?If you work, you may have already phoned your employer to tell them about your child’s diagnosis. You can also ask your CLIC Sargent Social Worker to do this for you if you prefer. If you are able to, let your employer know roughly how long you will be away.

You may also be wondering how on earth you are going to manage work in the long term. The truth is, it probably won’t be easy. While work can give valuable structure to your life as you support your child through treatment, there may be times when it’s simply not possible. In this case, if you are an employee, you have certain rights. You may be entitled to take some unpaid leave and also to work flexibly.

Time off for dependantsIf you are an employee, you have the right to unpaid time off work to deal with emergencies involving a dependant, such as an unexpected or sudden crisis. This time off can be used to deal with the immediate problem or plan how to handle it, but it can’t be used for long-term care. How much time off you can take will depend on your situation.

Parental leaveYou may be entitled to 18 weeks of parental leave if your child gets DLA, or if your child is not eligible for DLA but is under five. You can take a maximum of four weeks in any one year, unless your employer agrees otherwise. You will need to have been working for the company for at least one year.

Flexible workingAnyone can ask their employer to work flexibly, but if you have worked for your employer continuously for 26 weeks you have a statutory right to ask for flexible working. You could ask to work from home, for example, or to work flexi hours or part-time.

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Speaking to your GPIf dealing with your child’s illness becomes too stressful and you are struggling at work, you could speak to your GP. They may suggest the option of a ‘fit note’.

For the most up-to-date information about employment rights, visit www.gov.uk or www.nidirect.gov.uk (Northern Ireland).

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Emotional and practical supportSupporting a child through cancer treatment can test families emotionally, socially and financially. But you don’t have to make the journey alone.

Your child’s doctors and nurses are there to support you and your child from the moment they are diagnosed. Other professionals, including psychologists, counsellors and your CLIC Sargent Social Worker, are there to help and support you too – don’t be afraid to ask for support for yourself whenever you need it. Parents often say that other families they meet at the hospital are an invaluable source of support and encouragement. Others find online communities helpful (see page 17).

Useful organisationsThere are a variety of organisations that can offer you and your family support and information. They include:

Action for Sick ChildrenAdvice and information for parents who have children in hospital. www.actionforsickchildren.org Freephone: 0800 0744 519

CLIC SargentSupport for children and young people with cancer and their families. www.clicsargent.org.uk Tel: 0300 330 0803 (calls cost the same as calls to an 01 or 02 number)

Macmillan Cancer SupportInformation and support for anyone affected by cancer. www.macmillan.org.uk Freephone: 0808 8080 000

Teenage Cancer TrustSupport for teenagers and young people with cancer. www.teenagecancertrust.org Tel: 020 7612 0370

You may also find these websites usefulwww.cancerhelp.org.uk Reliable cancer information from Cancer Research UK.

www.cclg.org.uk Latest information about children and young people’s cancers from the Children’s Cancer and Leukaemia Group (CCLG).

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Books for childrenCLIC Sargent produces a range of storybooks that can help you talk to your child about cancer and its treatment. These can be downloaded or ordered at www.clicsargent.org.uk and include:

Joe has leukaemia Storybook about a little boy called Joe who has leukaemia.

Mary has a brain tumour Storybook about a little girl called Mary who has a brain tumour.

Lucy has a tumour Storybook about a little girl called Lucy who has a tumour in her tummy.

Tom has lymphoma Storybook about a little boy called Tom who has lymphoma.

Chemotherapy, cakes and cancer An A to Z guide to living with childhood cancer, written by 14-year-old Megan Blunt.

CLIC Sargent also produces a range of information sheets for children and young people which can be downloaded from our website at www.clicsargent.org.uk

Guides for youYour child’s doctors and nurses will give you information to help you understand your child’s cancer and its treatment. You may also find these resources from the Children’s Cancer and Leukaemia Group (CCLG) useful:

Children and young people with cancer: a parent’s guide

How can the internet help us?

Family life and cancer

Sport and exercise for children and young people with cancer

Grandparents

You can also order a range of publications by going to www.clicsargent.org.uk and searching for ‘publications’.

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“We’ve made good friends with other parents whose children were diagnosed around the same

time as our son. You jolly each other along.”

Looking to the futureSupporting your child through cancer treatment can be a lengthy and draining process. You may find these suggestions helpful:

c Make sure you tackle any financial, employment or housing difficulties as they come up – if you delay they may only get worse

c Make good use of any offers of help, but take care not to let other people start ‘organising’ you

c Seek out support, whether it’s from staff at the hospital, other parents, friends, relatives or through online groups

c Try to give all of your children clear boundaries and a normal level of discipline, including your child who is ill

c Don’t neglect your own needs – try to eat well, get plenty of sleep and take some exercise. Even a walk outside of the hospital could help you feel better

c Try not to bottle up your feelings – talk to your partner, friends and relatives as openly and honestly as you can. If you feel you need it, ask your child’s care team whether professional counselling is available

c Caring for a child with cancer is hard on friendships, and you may find that some friendships do not last the course. However, many families also make new friendships and are offered kindness, help and support, sometimes from unexpected places. Keeping up at least some of your usual social activities can give you a welcome distraction during this difficult time

c Remember – if you need help, support or information, speak to your CLIC Sargent Social Worker. You can also visit our website at www.clicsargent.org.uk, or call us on 0300 330 0803.

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Today, 10 children and young people in the UK will hear the shocking news that they have cancer. We provide clinical, practical and emotional support to help them cope with cancer and get the most out of life.

Here’s an idea of the different ways we can help you: c Emotional support to help the whole family cope with a cancer diagnosis and its impact on everyday life

c A wide range of information on childhood cancer and its impact on all aspects of life

c Financial support, including grants, to help you deal with the financial difficulties a cancer diagnosis can bring

c A specialist welfare advice service which provides information about the benefits you may be entitled to, employment advice and support with debt problems

c Support with employment issues, including help with speaking to employers about reducing working hours, working flexibly or taking unpaid leave

c Free accommodation at our nine Homes from Home which are close to specialist hospitals, so that you can stay near your child during treatment

c Free holidays and specialist short breaks away from the everyday challenges of childhood cancer, with the support of our care professionals and medical help close by

c Support to keep up with education, including delivering treatments in schools, liaising with schools to help children with schoolwork, and providing parents and staff with information and advice about how best to support a child with cancer

c Clinical care from our nurses, as close to home as possible c Support from our play specialists who help children cope with treatment through play and activities.

How CLIC Sargent can help

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We also campaign and influence others to raise awareness of the needs of children and young people with cancer and to improve the support they and their families receive.

For more information, talk to your CLIC Sargent Social Worker, visit www.clicsargent.org.uk or phone us on 0300 330 0803.

“CLIC Sargent is there to support you even if it’s only someone to talk to

or help you fill a form out. However big or small it’s all been a help.”

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CLIC Sargent would like to thank everyone who helped develop this booklet.

Winner of the 2012 BMA Patient Information Award for Information that aids decision-making.

REF: SER078_14190 Version 4, December 2014 Next planned review: 2015

For information about the sources used to put this publication together, or if you have any comments or questions about it, please contact CLIC Sargent on 0300 330 0803 and ask to speak to the Information Manager.

Registered charity number 1107328 and registered in Scotland (SC039857)

“Karen, our CLIC Sargent Social Worker, was great. She was quiet when she needed to be

and said things when they needed to be said.”

“Cancer doesn’t just affect your child, it affects the whole family.”

32www.clicsargent.org.uk

The quotes in this publication are from parents and carers. These are personal views and should not necessarily be taken as the view of CLIC Sargent. Please note that everyone’s experience is different and may not follow the order outlined in this publication, and that services will differ across the UK. CLIC Sargent does not accept any responsibility for information and services provided by third parties, including those referred to or signposted to in this publication.

We endeavour to ensure that the information provided is accurate and up-to-date at time of printing. CLIC Sargent cannot accept liability for any loss or damage resulting from any inaccuracy or omission in this publication. Information in this publication should not be relied on in place of appropriate professional or other advice specific to your circumstances.