Sylvia, a member of the London Adult Burns Support Group http://www.chelwest.nhs.uk/services/surgery/burns-service/burns-support-groups has been working hard to create opportunities for people with appearance differences to go swimming in a relaxed and welcoming environment without fear of being judged by others. Sylvia’s hard work is paying off and she has now set a location for the first session on Saturday 4th March 2-4pm.
Depending on the level of interest and success it may be possible to expand to other locations and frequency. You can contact firstname.lastname@example.org directly for more information, updates, any questions and just to register your interest. Even if you are not a confident swimmer Sylvia is a trained instructor and may well be able to support you in building your confidence in water. (Please note that this is not a Katie Piper Foundation service).
Having spent many years as a family seeking support for one of my sisters it was my daughter who mentioned the Katie Piper foundation following a documentary she had recently watched. I subsequently researched the charity as I was unaware of the kind of support it offered.
One of my younger sisters had suffered severe burns as a child and although now in her forties, we as a family had been unable to find support for her to cope both emotionally and physically. The only part of her body which remains unscarred is a small patch on her cheek and another on her abdomen. She wears a wig and spent most of her early childhood in hospital.
Understandably her confidence has always been a challenge for her and ensuring she felt as comfortable as possible with her hair and makeup was a constant concern for us. We spent years applying for grants for wigs only to be frequently rejected. My parents paid for as much as they could but this became very difficult in later years and more so once my Dad passed away.
I rang the Foundation in the hope that we may get some direction to help my sister as she had been going through a particularly tough time. At the very first conversation I was made to feel very comfortable and that finally someone was listening. Within weeks they had provided my sister with a new wig which looked fabulous and had discussed a whole variety of ongoing support for her. I remember her saying to me “it’s like a dream come true, I’d stopped believing there were people out there who would help me.”
Over the forthcoming months she spent time having her eyebrows tattooed back and even went away for a weekend with the Foundation, to meet others who have endured similar challenges. In the forty years of coping daily with her challenges, this was the first time she had spent time talking to others in a similar situation. The affect on her was amazing. She has gone from despair to looking forward to things in life. She has started attending family gatherings again and has even been away on holiday. Activities she has not done for several years.
The kindness and care shown to her by the Foundation and everyone involved with it has been a life changing experience not just for my sister but for us as a family. She will always have to live with her emotional and physical scars but the help received from the foundation has meant that instead of just coping through life, she is living it. We have our sister back!
Thank you all so much
Our friends at the Centre for Appearance Research – UWE Bristol – are investigating the support needs of parents whose son or daughter has previously sustained a burn injury. Please help if you can. See below for more information:
We are investigating the support needs of parents whose son or daughter has previously sustained a burn injury. We are writing to ask if you would be interested in taking part, regardless of your son or daughter’s age now or at the time of the injury.
You might or might not have felt that you needed any support of any kind, either now or at any other time since their injury. We are interested to find out whether parents’ support needs are met, not just at the time of injury but also during their child’s recovery and longer-term.
Please help us to investigate this important topic by answering some questions about your experiences and the services you have received, or would have liked to receive. There are no right or wrong answers to any of these questions – we are interested in your honest opinions, whether they are positive or negative, and whether your son or daughter was a child or an adult themselves at the time of injury. If you are interested in knowing more about what taking part would involve, please read the study information sheet which can be found here: http://tinyurl.com/parents-support-1 and complete the consent form if you would like to take part. Alternatively you can contact the researcher, Jennifer Heath, using the contact details below.
Centre for Appearance Research
Faculty of Health and Applied Sciences
University of the West of England
Tel.: 0117 3287109
Our friends at The London Area Adult Burns Support Group are working on a swimming project. First of all they need to get an idea about what the demand is for it and some logistical information.
They have created a very simple survey. Whether you would like to swim or not, but you have had a burn injury in the past, they would be grateful if you could take three minutes to complete the survey: https://www.surveymonkey.co.uk/r/WHXP8M2
Don’t forget to add your contact details at the end of the survey if you would like them to contact you with information about swimming once the survey closes.
Many thanks from Lisa Williams (group co-ordinator)
For more information about the group you can visit: http://www.chelwest.nhs.uk/services/surgery/burns-service/burns-support-groups
The next meeting of the McIndoe Burns Support Group at Queen Victoria Hospital – East Grinstead – is very soon on Friday 11th March!
It will be pizza making at Pizza Express. Please contact Tania Gibson 01342414176 email@example.com for information.
Back in November 2015 we were delighted to visit the group and provide activities (chocolate-making and craft classes).
Huge thanks to http://www.thecocoabox.co.uk/lisa-marley/ and KPF Friend Beth for leading the classes!
“Living with visible scars is hard every day, and it makes going out and meeting new people even harder”, these were the words of burn survivor and KPF beneficiary Catrin, when she sent out a message in November 2015 to encourage donations to our crowd funder for the launch of our online forum. Catrin went on to say “Having a safe place to talk to other survivors online would have been fantastic for me. I could have had those very first conversations from the comfort of my own home, which would have been invaluable”
Well, thanks to your incredible and generous support, we are thrilled to tell you that our online forum pilot is under way!
We are always striving to reach more burn survivors and the launch of our online forum was a vital step forward in achieving this goal. Whilst in just 5 years The Katie Piper Foundation has enabled over 150 people living with burns and trauma scars to attend one or more workshop or social activity so that they could meet other people with similar experiences, give and receive peer support, get professional advice and gain access to other KPF services, our new online forum will ensure that in future people won’t be restricted by geography, health or confidence to benefit from our services.
Our beneficiaries have shaped how our forum has been developed and here burn survivor Beth gives her thoughts “I’m so excited that the eagerly anticipated KPF forum is ready to launch. The forum looks great and has been professionally designed to make it user-friendly and intuitive to use. It is clear that a lot of thought has been put into providing a dedicated online community which survivors have been requesting for some time. I am looking forward to sharing my experience and learning from others. I’m sure it will fast become an essential resource for people with burns and scars. It will certainly become my go-to-place for any questions that I have”
So far our Software Developer has finished making the final adaptations to the forum in order to make it user-friendly for our beneficiaries. We’ve trained an additional 8 Peer Support Volunteers to help us to get the forum off the ground and we’ve also recruited and trained a team of 7 Volunteer Forum Moderators who will be responsible for making sure the forum is a safe place for individuals with burns and scars when using the forum in the evening and at weekends. We’ve also been checking the security of the forum and undertaking DBS checks for our volunteers. As you can see, we’ve been very busy with preparations and are now planning to launch in the first week of February.
We will be in touch again soon to keep you updated on the progress, but once again THANK YOU for making a positive difference to the work of The Katie Piper Foundation and for helping us to make it easier to live with burns and scars.
Recently, we had the chance to speak to one of our beneficiaries, burn survivor Hayley, and asked her about the impact of meeting others with similar experiences through The Katie Piper Foundation, and how this could be enhanced further through an on-line forum.
Hayley sustained third degree burns on her face and body in 2000 after being caught in a stable fire at the age of 14. She first came into contact with The Katie Piper Foundation in 2013 after reading one of Katie’s books and has since received skin camouflage sessions, medical tattooing and laser treatment and has had many opportunities to meet others with similar experiences through the Foundation.
Did you meet any other burn survivors before contacting The Katie Piper Foundation?
Before being introduced to the KPF I had never had the opportunity to speak to someone who had been through similar experiences as me. Of course I had seen people with burns in waiting rooms at outpatient clinics but never had the opportunity to sit down and have a 1-to-1 with someone who made me understand exactly what I’d been feeling and experiencing over the years on my own was so normal.
How did meeting others help?
Meeting other people who have been through similar experiences truly was the most uplifting feeling I’d ever felt. Almost like a huge weight had been lifted off my shoulders. There were so many instances of me thinking and saying out loud “oh my gosh that’s me”, “that’s exactly what I felt”, it was amazing!
I finally discovered that all the pins and needles, itching, fear of danger etc. was all so normal in a person that has experienced a burn injury! Also, the biggest turning point for me on being introduced to people who have experienced a burn injury was the realisation of how far I’ve come in my own rehabilitation and how much I was able to help someone, just by sharing my experiences. To me, realising that was like striking gold!
What difference would it have made if there was an online forum for you to access when you first needed help?
A massive difference, sometimes people do find it easier putting thoughts in to writing as opposed to speaking in person, almost like a sense of security. By having a forum, I genuinely believe it will help more people than anyone would ever imagine. I think that the forum has potential for families of burns survivors to gain advice from, because my family had no-one to talk to or understand that what I was going through was all normal and they need help too! Families’ can suffer just as much as us but from a different angle.
The Katie Piper Foundation is crowd funding to ensure the launch of the first online forum for people living with burns and trauma scarring. We need every one to help by giving whatever they can afford – every pound really does count! Please follow this link to help us move closer toward our vision of a world where scars do not limit a person’s function, social inclusion or sense of well-being.