Making sense of it all

This booklet was reviewed in November 2014.

Significant changes to the information in Making sense of it all (version 2, November 2013) are listed below.

Page 19 - My place of treatment 

Where you will be treated is likely to be influenced by where you live, recommendations from your consultant and your age. 

If you’re aged between 16 and 18, NHS guidance says your treatment should be at a Principal Treatment Centre (PTC) for young people. These are hospitals that have been recognised as specialist experts in teenage and young adult cancer.

If you’re 19 or older, NHS guidance says you should have the option of having your treatment at a PTC, or at a teenage and young adult cancer designated unit working in partnership with the PTC. 

Speak with your consultant or nurse specialist about what options may be available to you. Your individual circumstances and the best clinical care will be important factors. There is a checklist you can use at www.nhs.uk/young-cancer-care which helps you think through what is important for you, and gives you the chance to print a list of things to discuss with your consultant or nurse specialist.

Page 50 - Disabled Students’ Allowances

If you are in higher education, you may also be able to apply for Disabled Students’ Allowances (DSAs) to pay towards extra cancer-related study costs. These could include computer equipment, specialist software, note-taking support, or help with travel costs if you need to use taxis rather than public transport. 

The rules can be different depending on the year you began your course. How much you get depends on your needs assessment, rather than your or your family’s income. 

If you have a CLIC Sargent care professional, speak to them about how to apply for DSAs. Or contact our welfare advice service on 0800 915 4439 or welfareadvice@clicsargent.org.uk

Page 54 - Getting an assessment of your needs

Some young people can benefit from an assessment of their needs when they return to education. In England, local authorities are responsible for assessing young people with learning difficulties or disabilities who want to continue their education after leaving school. This is called an Education, Health and Care (EHC) assessment, and is used for students who are likely to need extra support. It should bring together information from medical, social care and education professionals and make clear what course or training you’d prefer to do. 

The assessment can then help colleges and training providers to provide the support you need to continue with your education. Speak to your local authority to see if they can provide you with this type of assessment. 

In Scotland, Wales and Northern Ireland you should be able to get help from your local careers service. They’ll help you make a plan for returning to education following your treatment. Wherever you live, if you’re already at college or university, your education provider should carry out its own needs assessment when you return to study.

Page 55 - What are my rights regarding support in education?

Under the Equality Act 2010, schools, colleges and universities have to make ‘reasonable adjustments’ so that you are not disadvantaged. You are entitled to get the support you need to continue with your education and fulfil your potential. These adjustments could include flexibility with attendance during treatment, help with taking notes if tiredness is an issue, or being given extra time to complete an exam.

In Northern Ireland you have similar rights under the Special Educational Needs and Disability Order (SENDO).

The Special Educational Needs Coordinator (SENCO) at your school, or the learning support adviser or disability adviser at your college or university can help to identify adjustments. This is something your care team can also help you with by contacting your place of education or talking to you about what potential adjustments may be helpful.

Page 59 - How will I get paid while I’m off work?

The first step is to speak to your manager or HR department about the support your employer has in place, such as a sick pay scheme. If they do have a scheme, find out what entitlements you can receive and for how long.

Even if your employer doesn’t have its own sick pay scheme, you may still be eligible to receive Statutory Sick Pay (SSP) if you earn over a set amount each week. If you can claim SSP, this will normally be for up to 28 weeks at a time. Although, if your health varies during your illness and sometimes you can work and sometimes you can’t, you may be entitled to SSP for longer periods.

If your SSP is due to end and you still cannot work, you should check if you’re entitled to Employment and Support Allowance (ESA). To find out about this, you need to speak to your local Jobcentre. Visit www.gov.uk or www.nidirect.gov.uk (Northern Ireland) for more information.

Page 64 - 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. It could affect how much you get from other benefits, and which benefits you can receive.

Universal Credit is for people of working age, and will replace the following six existing benefits for people who are out of work or on a low income. Extra money will be available for people who have a disability or health problem, caring responsibilities, childcare or housing costs.

  • Income-based Jobseeker’s Allowance
  • Income-related Employment and Support Allowance
  • Income Support
  • Working Tax Credit
  • Child Tax Credit
  • Housing Benefit.

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 the CLIC Sargent welfare advice service to find out.

Page 66 - Housing Benefit (HB)

If you are paying rent or service charges, you may be entitled to claim HB. The amount you can claim depends on your income and savings, and can also be limited by local housing allowance rates depending on where you live, for people living in private rental properties. This benefit will eventually be claimed as part of Universal Credit – so if you receive Universal Credit, you won’t need to make a separate claim for HB. You will need to pay your landlord directly, using money from your monthly Universal Credit payment.

Page 68 - Mortgage

Speak to your mortgage provider and check whether you have payment protection on your mortgage if you’re diagnosed with cancer. Your local Citizens Advice Bureau will also be able to advise you about mortgage payments and help you write letters to your mortgage company.
You may also be able to get some help with your mortgage costs if you are claiming certain types of benefit. Contact CLIC Sargent’s welfare advice service for details. If you are living with your parents, you may be included on their mortgage payment protection insurance. Get them to check with their mortgage provider.

Page 68 - Concessionary fares and parking

You may also be entitled to concessionary fares when travelling on buses and national rail services. The Blue Badge scheme provides help with parking spaces for certain people receiving the mobility component of PIP or DLA.

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