Burns support groups
Burns Family Group
The Burns Family Group offers support and information for families with a child who has experienced a burn or scald injury. We provide an environment where families with similar experiences can meet and support each other to help promote positive thinking.
Residential family weekend
This usually takes place in September at Littlehampton's Fire Service Rehabilitation Centre and is funded by the Children's Burns Trust. Several families from this and other burns units in the south east of England attend a weekend of therapeutic workshops, activities for the children, support from professionals and shared experiences from parent to parents.
Summer camp
In August, a group of 8–13 year olds attend the residential summer camp at Grafham Water, enjoying a range of physical activities and making shared memories.
Each year there is usually a National Burns Camp for children and young people between the ages of 8–18. The camp provides a place for children to meet who have experienced a burn injury and to help to develop their sense of independence and confidence along with often making lifelong friends.
Fundraising
The Burns Family Group needs to raise money to give children the opportunity to attend camp each year. If you are willing to raise funds or have any fundraising ideas, please contact Annette Maynard (Health Play Specialist) on 020 3315 3707 or annette.maynard1@nhs.net. Your support would be very much appreciated.
Support website for families of children who have had a burn injury
Supportingchildrenwithburns.co.uk contains information to help support parents or carers of children and young people who have experienced a burn injury of any kind or size. When a burn injury happens to someone you care about it can be as distressing for you as it is for them. This website is not just for parents whose child has had a major burn, as we know that it can be a difficult experience regardless of how big the burn was, or whether or not a hospital stay or surgery was required. Other adults, such as grandparents, might also find this resource helpful.
Previous events
We are now able to have in-person events and to plan activities for the year ahead. Recent examples include:
- Activity days
- National Burns camp in August
- Trips to Alton Towers for teenagers
- Annual Family weekend at Littlehampton Fire Service Rehabilitation Centre in September
- National Jamboree at Grafham Water in October
For more details please call Annette on Mars Ward on 020 3315 3706 or email caw-tr.burnsfamilygroup@nhs.net.
London Area Burns Adult Group
The group continues to meet roughly four times a year and is open to adults (16+) who have experienced a burn of any sort, at any age, and have been treated at any hospital. Although based in London, we have members from all over the country. We alternate between meeting to listen to speakers, have group discussions, and take part in social events. We are happy for people to bring family and friends with them.
We maintain a steady list of about 100 people. More than half have never actually been to one of the events. We occasionally remind people they can unsubscribe if they don't want to receive the notifications but we only have a few of those each year. How do we make sense of this? People want to stay connected but at the level they can manage. There is no expectation of participation at all. Having said that there are some absolutely lovely, kind, warm hearted people who do come whenever they can and we hear and see them be very supportive to others, especially first timers.
This is not a traditional support group and people do not usually come and talk in detail about their burn experiences. People do not directly ask "what happened to you?", "how big is your burn?", "how bad was it?" etc. People have sometimes confided in us before coming that they worry that their burn will be the smallest one or the biggest one - nobody wants to be too different.
People who feel comfortable sharing their experiences do, it feels quite natural. This group offers a unique opportunity to not only get support from but also to give support to other burns survivors. People tell us that it can be really valuable to meet others with experiences of burns.
Looking back on 2023
The pattern of our meetings is to alternate in person (summer and winter) and virtual (spring and autumn) gatherings. This continues to work well, especially for those who find it difficult to travel into London. Our March event featured Christia Huntington introducing the Burns HealthTalk website - more details below. In July we enjoyed a private guided tour of Isambard Kingdom Brunell's London, which included an eventful ride on a Thames Clipper boat and then a picnic in a small park in Rotherhithe. Then in September we had a Q&A session with Mercy, a member of the group, who had recently attended the Dan's Fund for Burns Survivor Weekend in Surrey. Finally our December event was to see some of the art displays in the Royal Festival Hall, the lights of the Southbank and finally a warm (or cold) drink in a cafe which had a big enough table for all eleven of us to chat and laugh.
Back in March we were delighted to reschedule our invited speaker, PhD student Christia Huntington, to talk about her work on the burns module of the HealthTalk website which went live in June 2023. Christia is very keen to hear feedback from about the site, especially from those with lived experience of burn injuries. If you are able to help with this please complete a survey, I know Christia will be very grateful for your opinion on the module she has created.
We are fortunate that Christia recorded her presentation in advance and you can watch it here:
Recent events
On Wednesday 13 March 2024 we had our first MS Teams meeting of the year. After a general catch up on how everyone was doing we were really grateful to use the time to get feedback on some new training we have been developing for burns staffing on managing increasing levels of violence and aggression within the burns service. It was so helpful to have ex/patient perspective on the training and we made a note of a number of positive and helpful suggestions. Thank you once again to all of those who participated. We also had a chat about ideas for our summer in person event and the most popular was for a bring and share picnic, in a London park, with the possibility to play some games and have a relaxed social space for everyone. Details to follow.
Upcoming events
More details to follow as speakers, locations and activities are finalised and booked in.
Sat 15 Jun 2024 12pm–3pm: Summer picnic—Battersea Park
Following discussion at our March group we have arranged a summer picnic. Applying the necessary criteria of accessibility, free toilets, benches, green space and shade we have selected Battersea Park as the venue. Please join us in the park at the bandstand from 12 PM for a bring and share picnic and some optional fun and games.
Things you need to know: 12 PM Meet at the bandstand, which is virtually in the middle of the park. The bandstand will provide shelter from the sun and rain, should it show up on the day. From there we can choose our piece of green space to claim as our own for the afternoon. If you use the what three words location system it is spray.put.tapes.
Getting there: Nearest train stations are Queenstown Road Train Station or Battersea Park Train Station. Nearest tube stations are Sloane Square, Victoria or Pimlico and the new Battersea Power Station on the Northern line. Various buses also serve Battersea Park. Please plan your travel in advance at https://tfl.gov.uk/plan-a-journey/ There are some planned closures on the transport network including complete closure of the Hammersmith & City line and partial closures on the District, Metropolitan and Northern lines.
RSVP: Please either reply by email to lmwilliams@nhs.net, or phone 020 3315 2504. We need your name, how many people in your party in total, plus what kind of picnic items you are bringing, or you can ask us if you want suggestions. In addition, if you have any games or sports equipment you would be willing to bring, e.g. football, rounders, cricket, bowls, let us know. It is important to let us know your plans, even if you are unsure, as there will be a temporary contact number for the day in case of emergency that we need to share with participants.
Rainy day: Let's hope for a nice day, but our weather is so unpredictable at the moment. We will make a call on Friday night if the weather is appalling and we need to cancel. If we do not have your email and you have not registered we will not be able to communicate with you. Really hope to see lots of you there. In any case have a great summer!\
Other events
- Tue 10 Sep 2024 6:30–7:30pm: MS Teams—speaker TBC
- Thu 12 Dec 2024, 6:30–8pm: Christmas/end of year gathering—details TBC
For more information, to RSVP or to join our database please contact:
Lisa Williams
T: 020 3315 2504
E: lmwilliams@nhs.net
Dan’s Fund for Burns website and weekly live chat forum for burn-injured adults
Adultburnsupportuk.org brings together all of the most helpful resources and information on the aftercare help/support available to burn-injured adults in the UK and putting it on one site for easy access. A weekly moderated Live Online Chat occurs every Wednesday from 7:30–9pm (UK time) and has grown from strength to strength. The ABSUK Live Chat has been developed to provide the opportunity for those affected by a burn injury to share their story and give and receive mutual support in a real-time, safe and private forum. Chat is now fully moderated by people with lived experience of burns.
To participate in the live chat, users must be registered and logged in. If you would like to share your experiences or discuss any issues you may be having in relation to burns, please register ahead of time and then login on the night.
Coping with the stress of a traumatic incident
We give this leaflet to our patients and families who have experienced a traumatic event. It contains information about how people might be affected, common reactions, helpful hints including grounding, self care and potential sources of help.