Support and services for parents

The impact on you

If your child has been recently diagnosed you may have many different feelings. Some people feel shocked or scared, especially if they are not aware of a history of cardiomyopathy in the family. Some
are worried; they may not have heard of the condition before and don’t know what the diagnosis means. Others feel relieved, knowing what the condition is and that it can be treated. People respond to a diagnosis in different ways: there is no ‘right’ or ‘wrong’ way.

“We have continuous questions, this will never change as they are driven by everyday life.”

You may have a lot of questions. You may not want to ask because you are worried about the answers. Or you may feel overwhelmed or not know what questions to ask. It can feel scary and very lonely.

“I still struggle daily with my son’s diagnosis, I worry about him constantly.”

If your child has had the condition for a while, you may still find it challenging. And you might have good days and bad days.

“Someone to wave a wand and take it away.”

Looking after yourself

Naturally, when a child is diagnosed with cardiomyopathy, everyone’s focus is on them: understanding their condition, their symptoms, their treatment and supporting them. But a diagnosis can affect
everyone in the family: siblings, parents and the wider family. 

It may sound ridiculous to say ‘look after yourself’ when it is your child who has the condition. Looking after your child, managing the practical aspects of a condition, and dealing with symptoms, all become part of your new life, adjusting to the condition. Alongside that, you may be dealing with the reaction and emotions of others around you.

But this doesn’t take anything away from how you are feeling, and the impact it is having on you. It can be easy to focus all of your attention on your child, but it is also important to focus on your needs
too. This isn’t always easy to do.

It can be hard asking for help, or to share your emotions. You may feel  that you have to ‘be brave’, or that you should be coping better. We can be hard on ourselves, but taking some time out to look after your needs can also make you feel ‘refuelled’ and able to take on life again.

Coming to terms with a diagnosis can also affect family relationships. You may find yourself spending less time with your partner or with close family. You may feel that other people don’t understand, or are not able to care for your child in the way that you do. Or you may find that your family are incredibly supportive and helpful, and can make sure that you get time to look after yourself, and your other relationships.

“Knowledge is power! The more you understand the better equipped you will be to deal with the ups and downs to come. And be patient – it can be an overwhelming diagnosis for a family but take each day as it comes and be kind to yourself.”

Giving yourself permission to take time out without feeling guilty, to spend time alone or with friends, to focus on your needs, is important to help you feel ‘normal’ again, and to recover from any pressures you are feeling.

“Just be there for us.”

Services and support

Not everyone with cardiomyopathy needs extra help and support, depending on how their condition affects them. However, there is various support available, as and when you need it. 

Find out about the ways we can support you.

Health and social care assessments

If your child has health and support needs, you can ask your local authority for a health and social care assessment (sometimes called a ‘needs assessment’). This involves someone such as a social worker
discussing with you, either at home, by phone or online, your child’s medical and physical needs and what might be helpful for them. Help might include special equipment, access to day care, and help with daily tasks. It will identify whether this help can be provided by your local authority.
For more information about health and social care assessments visit GOV website (opens new window) or Citizens advice  (opens new window).

Welfare benefits

Not everyone with cardiomyopathy is entitled to welfare benefits, as it depends on how the condition affects individuals. However, some benefits are given to help with any additional costs due to having a
disability or medical condition. This includes Disability Living Allowance (or ‘DLA’) for children and Personal Independence Payment (‘PIP’). 

Contact us for more information on welfare benefits, or visit Gov website (opens new window) or Citizens advice (opens new window).

Help with hospital travel costs

If your child receives benefits, or you are on a low income, you may be able to get help with the cost of travelling to and from hospital appointments.
For more information visit NHS Choices (opens new window).

Support for families

The Family Fund is a charity that provides financial support to families with disabled or seriously ill children. This includes grants for equipment, as well as signposting to other sources of support.
Find out more from the Family Fund (opens new window).

Support for carers

A carer is “anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support” (Carers Trust). Although some parents meet this definition of ‘carer’, not every parent feels that they are a ‘carer’. Many feel that the care and support they give their child is just an extension of their normal parental responsibility. But for some people, the term of ‘carer’ can open up avenues of support that they were not aware of.

Find out more about what help is available to carers.

©Cardiomyopathy UK. May 2017.