After the diagnosis
Whether a diagnosis comes out of the blue, or it’s something you have been seeking for your child for a while, it’s normal for it to trigger a wide range of emotions. You may feel you need space to process and come to terms with all the new information before thinking about, or you may feel the need to start making plans, either way there are a few easy next steps you can make to start with that can make things easier for you and your family, both now and in the long term.
- Ask the medical professionals involved in your child’s care for a written statement of your child’s diagnosis and for a summary of all appointments going forward. When you are faced with lots of information it’s easy to become confused, or forget details, but this way you can keep a handy file to refer back to when you need it for applications forms such as applying for services, benefits, equipment or support, or just to help you plan questions for your next medical appointment.
- Having support you can turn to is crucial, but friends and family aren’t always equipped to provide it in these circumstances. Charities such as Newlife can be a great source of support, providing practical information about your child’s condition, equipment needed, and benefits you may be entitled to, as well as the emotional support of speaking to someone who understands your situation and listens without judgement. Call the free Newlife Nurse Helpline on 0800 902 0095 or visit newlifecharity.co.uk for more details.
- It’s a good idea to look into what benefits you can apply for sooner rather than later, including Disability Living Allowance. If the forms seem overwhelming there are places to turn to for support in filling them in, including the Citizens Advice Bureau here.
- Be sure to use reliable sources of information if you are doing your own research, such as the NHS website at nhs.uk/conditions or www.nhs.uk/conditions/social-care-and-support-guide/caring-for-children-and-young-people/how-to-care-for-a-disabled-child.
- You can also join national support groups relevant to your child’s diagnosis. For more support in your local area click here.