Burn Experience Parent Conference: Supporting Parents of Burn Injured Children

When:
19th October 2019 all-day
2019-10-19T00:00:00+01:00
2019-10-20T00:00:00+01:00
Where:
Queen Mary University London
WhitechapelCampus
Contact:
Dr Katherine Nutt
01245515988

We are contacting you regarding an upcoming event hosted by members of the LSEBN, Children’s Burns Club based at Broomfield Hospital and The Children’s Burns Trust Charity supported by the MSc in Burns Care at QMUL.

On Saturday the 19th October 2019 (to link in with Burns Awareness Day)  we are planning to facilitate a conference style event for parent/carers of children who have experienced a burn injury. The conference will be at Queen Mary University London – Whitechapel Campus.

Why:

The Children’s Burns Trust have supported the set up and running of residential family weekends in the London and South East Burns Network area and the Northern network for a number of years. These weekends are supported by the Fire Fighters Charity and incorporate workshops for parents from psychological therapists and Physiotherapists/Occupational Therapist’s (facilitated by staff from the hospitals within the network) as well as opportunities for parents to share experiences with other parents and of course lots of fun activities for the children.

Feedback from the weekends has been extremely positive and parents, children and siblings have stated how this has helped them coping with the burn injury and the ongoing impact of this. From a staff/volunteer perspective these have been fantastic events but unfortunately there is a limit of only two families per hospital per year to access this opportunity. Consequently discussions had begun about how to widen access to both the formal and informal support that arises from professionals and families sharing their different expertise.

In 2018 the Children’s Burns Club based at Broomfield Hospital trialled their own conference including similar sessions to those outlined above but also a programme for children which included a party bus, children’s entertainer and CSI workshop. In addition there was a therapeutic workshop for children with a burn injury, one for siblings and an art therapy session for younger children. Thirteen families attended and whilst the feedback for the day was generally excellent, when the day was reviewed it was felt that for some children, especially the younger ones, the day was too long with some becoming quite tired by the end. It was also felt that parents could have benefitted more from talking to each other at the end of the day but children were keen to see them or head home.

What:

We feel there is an opportunity to run a conference solely for parents at a more central location (initially trialling this in London) and offer it on a national basis to any parents who feel they would benefit from attending.

The plan is for this to include a mixture of formal presentations as well as opportunities for participants to ask questions and network.

The current plan is for each presentation to last approximately 45 minutes followed by 15 minutes for questions.

We are hoping to have presentations from a surgeon, a physiotherapist/OT, a psychological therapist and a burns survivor.

For the surgeon slot we are looking for someone to focus on the current surgical interventions  (in addition to considerations of other options including laser, microneedling, steroid injections etc) available to children and young people with significant burn injuries. Within this it might be important to think about both aesthetic and functional aims, timings of interventions and supporting young people within decision making)

For the OT/physiotherapy slot we are looking for someone to focus on scar management techniques and how this may change over time and in relation to any surgical interventions.

The psychological slot will focus on the psychological impact of the burn injury and strategies to manage this thinking about both parent/carer wellbeing and how to support children/YP recognising these things will shift and change over time. This session may also think about transitions and support with school/work etc

The burn survivor slot will be an opportunity for parents to hear the experiences of older burns survivors and/or parents of older burns survivors reflecting on their lived experiences and linking in with some of the other topics and talks from the day.

Audience

This is hard to estimate as this would be the first time we think it has been done but we would hope for 50-100 parents. There may additionally be interest from other professionals, researchers and charities to attend. We would also hope that some professionals from other hospitals may wish to attend with the hope that if this is successful that similar events may be hosted in other networks in future.

We are hoping this will be a unique opportunity for parents of children and young people to come together and receive information about all aspects of their child’s care that will help them to support their child’s recovery.

How you can help

There are 3 areas where we are seeking support:

1) At this stage we are looking to identify presenters for each of the areas so if this is something you would be interested in and able to support then please do get in contact.

2) If you would be interested in joining our steering/planning committee then we are hoping to arrange our next meeting in London in the next few weeks (likely to be on a Thursday) and would welcome any expressions of interest. If you are not able to attend but have any ideas about how we might evaluate an event of this nature we would be very interested in any ideas or support in this area!

3) If you are interested in attending and/or able to support us with the promotion of this event within your hospital/network then do let us know

If you feel that you may be able to help us in anyway please do contact us either by replying to this e-mail or calling us on 01245 515988.

Many thanks in advance,

Children’s Burns Club Team