CHF is a member of this group which meets four times a year to identify current issues causing concern in the media or within Parliament. Information is shared and initiatives are taken forward to aid lobbying for positive improvements for children and young people’s health and welfare.

The National Council for Child Health and Well-being (NCCHW) comprises more than 50 professional groups focused on improving the health and welfare of children and young people across the U.K.

This meeting included presentations from

Little Amber a new model of support for families with young, visually impaired children to engage them in musical activities.

Disabled Living and Bladder and Bowel UK the speaker from Disabled Living Deborah Evans informed the group about the Kidz to Adultz Exhibitions which are five free events for children and young people with disabilities, their families or carers and the professionals who support them.

There are often similarities in experiences and difficulties for children with other conditions other than heart conditions, so it is helpful to hear how other organisations are working to help families.

The group was informed of the impact incontinence can have on the child and family. Speaker Davina Richardson discussed the psychological impact on a child and gave the example of a stoma bag being difficult for a child to accept, CHF have found a similar unwillingness of children accepting their scars which is how the Molly’s Dollies service began.

Davina also outlined how incontinence in children can affect their education. A child with a heart condition’s education can also be affected by the amount of time they need off school. Children on Warfarin need frequent hospital visits for their coagulation levels to be checked unless they can home test with an INR machine.

CLIC Sargent’s #Cancercosts campaign speakers Caroline Weston and Anna Christina Carnegie talked about the costs (often hidden) to families with a child with cancer of around £600 a month. The group was informed of the recommendations from the #Cancercosts report including benefit support from day one of diagnosis (currently it takes up to three months from diagnosis), more training for DWP to provide after cancer support to families and support with energy bills. CHF is aware that having a child with a heart condition can have cost implications to families also and is looking into what can be done to give families further support.

 

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