Bleeding disorder services need to think about parents too
By Josh Taylor-Rose, Youth Ambassador for The Haemophilia Society UK
What changes would have a positive impact on life for those living with or caring for a person living with a bleeding disorder? Earlier this month, as part of Project Phoenix, Haemnet hosted a group discussion that focused on the experiences of parents of children with bleeding disorders.
The group included mothers of children with severe and mild forms of bleeding disorders from across areas of the UK. Throughout the discussion it became clear that there are significant differences between centres around the UK.
Following introductions, participants were invited to offer comments on the nature of the relationship they have with their child’s care team. It soon became clear that a common issue for most was the limited psychology service available. Everyone agreed on the need to introduce psychological support in more centres, not just for the children but also for parents.
Another improvement requested by some parents was the need for support groups to be formed outside of the centres; life is about storytelling and being part of a support group can help provide a safety net, helping parents around the country to feel they are not alone when their child has a bad bleed or experience.
The group also expressed a need for greater support for dads who have children with a bleeding disorder. While many in the group agreed that they felt supported, they did not feel their partners felt truly supported by their centres.
Moreover, several participants described how they began to feel redundant as their children transitioned from paediatrics to adult care. Some parents described the difficulty they had in reaching consultants and nurses by phone – something that had become more apparent during the COVID pandemic. One parent felt that sometimes they were passed around the team when they just wanted to speak to someone about their child with a bleeding episode.
By the end of the meeting, it was clear there are gaps that need to be addressed. One key change that would help to improve the service would be to have consultations where parents and their children see the whole centre team – the consultant, nurse, physio, and psychologist – in one day. This would prevent the experience that many described of being “drip fed” a service, one day seeing the consultant and then next week seeing the physio.