This information is about how you can support a family member or friend who has been affected or suspected of having Necrotising Enterocolitis.
When a family member or friend is affected by Necrotising Enterocolitis it’s usually a shock for everyone. You all may experience different emotions. You might worry that you don’t know what to do to help, or what to say to them. This page includes things you can do that can help.
Listening to the person who’s is affected by NEC.
Listening to your family member or friend giving them your full attention is important. You may not know what to say or how to comfort or reassure them. But often just being there will help. They may want to talk about their Child's diagnoses or loss of life, they may not. If you’re not sure, you could let them lead the conversation.
Or ask a question such as: “Is there anything you would like to talk about today?” Or “Is there anything worrying you at the moment?”
Listening to their needs
It’s helpful to understand what they might be going through. It’s likely to be an emotionally and physically demanding time for them. They may be very worried and upset. And they may also be dealing with practical things such as applying for benefits, sorting things out at home, arranging child care, talking leave from work or accessing health services.
Your friend/family member may need someone to listen to them. You could sit down for a cup of tea if they want to chat. They may appreciate the chance to talk about their feelings. Or they may prefer to talk about something completely different, such as activities they enjoy. It can be helpful to know that you’re there to support them.
People sometimes worry that they are boring others when they talk, or they’re a burden. It can be helpful to make it clear that’s not the case. You could say things like: “It doesn’t matter if you’ve told me things before. If it helps you to talk, I’m here to listen.” Sometimes you might be in a rush. If you don’t have time to listen, you could say: “I only have a few minutes to talk today, but could we make some time later in the week?” Often people feel more comfortable and ready to talk if they know they’re not keeping you from something.
It can be helpful to do small practical tasks to support your family/friend, having a child in hospital your number one priority os to be by their side. You might be able to help support them with:
Taking meals to them
driving them to and from hospital or support them with medical appointments
helping look after their children and pets
help with laundry
doing their shopping
watering the plants
mowing the lawn
looking things up online
cleaning and vacuuming
posting forms and applications
help with collecting & returning library books and audio books from hospital Library
help with any small task that saves them time and energy.
If you are good at something, see if it could be of use. For example, if you are good with figures you could help with paying bills or helping them apply for benefits. If you can bake, you could make a cake or some biscuits for your visit.
The internet is a good resource for discovering ways to be supportive. For example, a website called Pinterest, Mind, Samaritans all have information about how to be supportive.
Offering your support
It’s important to offer before you do these things to help. Your family member or friend, may feel a lack of control if you do things for them without asking first. And don’t insist on helping if they don’t seem keen. Accepting help takes time!
It can help to identify specific tasks you could do, rather than asking a general question.
For example, you could try asking: “Can I walk the dog?” or “Can I do the shopping?”, rather than: “Is there anything I can do?”
You could also think of different ways you can support them. Someone might not feel comfortable having you do their washing up, but wouldn’t mind you mowing the lawn or returning library books. Sometimes people prefer not to accept help. Keeping busy may be an important coping strategy for them. Or it may feel important to them to be as independent as possible. If your family member or friend refuse your help, respect their wishes. But don’t be afraid to offer support again in future. Sometimes knowing that someone is concerned and is offering to help is as valuable as the help itself. They may be more able to accept support from you at a later stage.
Sometimes your family member or friend will feel tired or just want some peace and time to themselves. Remember that although they may enjoy having company, they may not want to talk all the time.
A good approach could be to sit with your friend or family member, reading or doing another quiet activity. You’ll be there if they need you or would like to have a conversation.
Give your family member or friend the opportunity to enjoy activities they like doing by themselves, like listening to music, watching TV, reading, doing the crossword, playing Sudoku or being online.
As well as visiting your friend or family member, you can also send a text or a card to let them know you’re thinking of them.
Support for you
When a family member or friend is going through such circumstances, I can also be a difficult experience for you too.
You may also find that other friends and family have different ways of supporting those affected by NEC. Some may visit frequently and others less so. People react in different ways to the situation and this is normal.
You might find it helpful to join an online forum or local support group to share experiences with other people in a similar situation.
Visit Page How We Can Help for further support and information.
Necrotising Enterocolitis UK (Support Group)
Necrotising Enterocolitis-Preemie Inflammatory Bowel Disease (Support Group)