Online Survey to identify support needs of parents supporting a child with a burn injury
- Are you a parent who is supporting a child who has had a burn injury?
- Want to be entered into a prize draw to win one of two £50 Amazon vouchers?
- Complete a survey which aims to identify parents support needs and well-being when supporting a child with a burn.
This survey is being developed by the Centre for Appearance Research, UWE and they are inviting parents to complete the survey to test the questions in order to refine and shorten it. Once developed the survey will be used by the NHS and charities that provide support for burn patients and their families in order to ensure they get the best possible support.
To complete the survey click on this link: https://tinyurl.com/parentquest
Friday 21 July 2017 11am-4pm
Queen Victoria Hospital East Grinstead
Activities will include:
• afternoon tea
• and possibly hand massage
The McIndoe Burns Support Group are holding a free wellbeing day for people aged 16 and over who have sustained a burn. It is an opportunity to take part in activities and meet other people with similar experiences.
The event is open to anyone over the age of 16 who has experienced a burn, or is a relative of someone who has experienced a burn of any type and size at any age and have been treated at any hospital.
You are welcome to bring a friend or family member with you.
For more information or to book your place please email Tania.Gibson@qvh.nhs.uk or call 01342 41440
KPF Pop Up Event:
The day began with an introduction from Raiche, who developed the KPF Pop Up Event
We then heard a motivational talk from Katie Piper, (focussing on confidence, personal development, wellbeing and overcoming barriers) followed by a group discussion.
After lunch we had a short motivational talk from a martial arts expert who had a burn injury as a child.
In the afternoon, attendees chose to take part in two out of these three 40 minute workshops:
- Wellbeing (led by a psychotherapist)
- Vocational (led by a careers advisor)
- Goal setting (led by a coach)
“Motivational talks were extremely helpful for my mindset and new ideas on outlook in life.”
“I liked meeting other people with burns, it’s strange to be in a room full of people and you’re not the only one with burns”.
Commenting on what they found helpful, one attendee said: “The opportunity to listen to Katie and the guest speaker talk about their experiences, as well as meeting other burn survivors. The workshops enhanced my knowledge and attitude towards career management/potential and self-confidence/esteem.”
Another attendee shared: “I found the workshops particularly useful, the professionals were very informative but sensitive. In particular the careers advice has helped me to go on and find a job role in which I am happy, which is something I was really apprehensive about after leaving university. The workshops were filled with practical take-home advice that I can use moving forward.”
We look forward to supporting more adults with burns and trauma scars at our KPF Weekend Event in September 2017!
Researchers at the Centre for Appearance Research are hoping to recruit participants to an on-line survey focussing on the intimate lives of those living with a visible difference or an altered appearance. Taking part involves answering a series of survey style questions about yourself, your appearance, your thoughts and feelings and your intimate life. This is being done so that we can learn more about looking different and intimate relationships and to help develop a measurement scale that researchers and clinicians may be able to use to identify those that find their intimate lives challenging because of how they look or how they feel about how they look. If you have a visible difference, are at least 18 years old, are based in the UK and would like to find out more and/or take part then please find more information at https://tinyurl.com/intimacyCAR On behalf of the Centre For Appearance Research, thank you.
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