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Being a carer can be a difficult and isolating experience but it can be a little easier if you’re aware of the support that may be available.
Caring for someone with a brain tumour can be both physically and emotionally demanding. Many carers say that they’re given little information at diagnosis about their loved one’s condition and how they can support them. As a result, they feel confused or uncertain, and have to find information themselves.
All carers have certain basic rights that can help make life a little bit easier. Depending on your situation, you may have the right to receive:
The best starting point is a carer’s assessment.
You’re entitled to a carer’s assessment by your local authority to assess your own needs and what support, if any, you are eligible for. At this assessment you can discuss any help that would maintain your own health and also balance caring with other aspects of your life.
This could include help with caring, financial support or equipment that makes it easier to look after your loved one. You may agree with your local authority that you need a break as part of your care plan and the local authority may agree to fund it – this is known as respite care.
You can arrange a carer’s assessment by calling your local council’s social services department and requesting one. You should be able to find the number in your phone book or on your local authority’s website.
The person you care for is also entitled to a separate needs assessment, which will take into account your role as a carer.
If money is a concern for you, it may help to learn out about the financial assistance available to you. This is an important part of looking after yourself and relieving your stress.
In the eyes of the law, people with a brain tumour (low or high grade) are likely to be considered to have a disability, even though you, and they, may not see themselves in that way. Not only might the person you care for be entitled for benefits, but you may also be eligible for financial assistance, including:
It’s important to be aware that some benefits can affect other benefits that both you and the person you care for may receive. Your local authority or local Citizens Advice Bureau can advise you on the support you can receive. They can also tell you about ways of helping your financial situation and dealing with the extra costs that caring for someone can bring.
Our expert benefits adviser can explain various benefits to you, and advise you on filling in forms. The clinic runs every Tuesday with appointments from 9.30am to 4.00pm.
Caring for somebody can make it harder to perform at work and many people have to reduce their hours, hand over some of their responsibilities, change job or even give up work entirely.
It may not feel like it but most employers will want to support you through this difficult time and discussing your options with your manager can yield unexpected results.
At the very least, all employers have a legal obligation to listen to requests for flexible working and respond in a “reasonable manner”. This should include:
You can always talk to your GP about how being a carer is affecting your health and wellbeing. If there’s anything you’re unsure of about brain tumours or caring for someone, they might be able to give you information or signpost useful services.
They can help you with emotional support if you need it, either directly or by referring you to a psychologist or psychiatrist.
Your GP can also help with approaching your local social services for a carer’s assessment and preparing you for it. Some areas even have a GP Carers’ Prescription Service, so GPs can prescribe carers a break, if it would be beneficial.
The appropriate department of your local authority, normally Adult Services or Children’s Services, will be able to give you a carer’s assessment to find out the practical and financial support available to you.
They may be able to offer respite care or what is called a sitting service. This is where a trained volunteer will keep your loved one company for a few hours, while you have a break. Your local authority should also be able to signpost other organisations that may be able to support you.
Charities and benevolent funds are other sources of support. Many organisations in the UK offer financial help to pay for respite care and provide support services for carers.
You may discover an opportunity to join a support group for carers. You’ll be able to connect with other carers, discuss your worries and share ideas. Or, if you’re not ready to speak to others directly, it can be helpful just knowing other people understand what you’re going through.
If the person you’re caring for is well enough, they may be able to attend a day centre. These provide an opportunity for them to meet new people and also time for you to have a short break.
Charities can also be a vital source of information for carers, particularly for those who have only recently been affected by a brain tumour.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
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Teresa's husband, Rob, has a brain tumour and in this video she discusses the practical and emotional sides of caring and the importance of retaining your own identity.