Laura met Sarah Neill right at the beginning when the ASK SNIFF programme of research was just an idea, pitched to a group of mums in a sure start centre. Since then Laura has been part of the ASK SNIFF Parent Panel, and in the last 18 months has become a Parent Lead within the Parent Panel. She has 3 boys and was instantly interested in being a part of the ASK SNIFF programme of research due to her personal experience with children’s healthcare services.
In 2009 Laura’s son was born with a congenital heart condition TGA (transposition of the great arteries) which required him to have open heart surgery at 5 days old. Consequently Laura has many encounters with healthcare professionals and experienced many challenges along the way, and uses this experience when working within the ASK SNIFF programme.
Through the research programme, Laura has attended some research training provided by the University of Northampton on patient and public involvement in research, which she found very interesting and useful. Laura has many key responsibilities as a Parent Lead, including championing the research and recruiting other parents to join the Parent Panel, and attending team meetings with the ASK SNIFF research team where she is able to contribute through her knowledge and experience about childhood illness from a parent perspective.
My name is Tracy Turner and I am a mum of 2 children. My daughter aged 6 and son aged 4. I have been involved with the Parent Panel since my first child was a few months old. I joined the Parent Panel because it has been a concern of mine that parents often feel isolated in making decisions about their child’s health and feeling like that we as parents lack support in making these decisions. I believe in this project and would like to see it progress to completion. My passion has always been that mothers never feel alone. Myself and a group of parent friends set up a Facebook group (Mum Chums) so we could communicate easily with each other and share problems, concerns and organise a social get together. From then we expanded the group to include other local mums. It started with a handful of mums and currently has 230 members from the Kettering area. Before having children of my own I had 11 years experience working with children in various childcare settings and I have a BTEC certificate in Nursery Nursing. I have also asked to set up and run a Sunday school group for 2 -5 year olds in Open Door church, which is running smoothly with a fantastic team of volunteers.
James’ professional background is in the Royal Navy where he served as an officer (lieutenant) and commanding officer of his engineering unit, undertaking extensive training and qualifications related to engineering. James has also served with the Sea Cadets for over 20 years in a number of different units. He also worked for the St John’s Ambulance as a coach ambulance driver, as a Badger Leader and a first aid trainer for children aged 5-10 in Badgers, 10-16 in Cadets, and 16-adulthood in first aid and key life skills.
James has been part of the ASK SNIFF Parent Panel since the group first developed, taking on a role of one of the Parent Leads early in 2014. He has four children, and became interested in being a part of the ASK SNIFF programme of research due to his personal experiences with childhood illness. James’ son was born in 2007 with a condition called Hemimelia (lack of, or missing, bones), which has required his son to go through a number of operations, including amputation. Consequently James has had many encounters with healthcare professionals and experienced the challenges of caring for a child with complex needs. He uses these experiences when working within the Parent Panel. James enjoys attending meetings with the ASK SNIFF research team, where he is able to put forward his knowledge, experience and perspective as a parent and carer about issues related to childhood illness.
How did I build up?
Initially was attending my weekly God-Sent new parents group at my local sure start, where I had been a permanent fixture after attending the breast feeding support group when my son was less than 2 weeks old. By now I had my daughter of about 3 months and was drinking my first cup of hot tea since the week before new parents, when an extremely well read, yet warm and friendly lady (I thought they were mutually exclusive!) asked us if we would be willing to join a group to discuss what would help parents when their children became ill. The more mouthy members of the group (myself obviously included) said we were interested and passed over our details.
Months passed, and then we had a couple of meetings at sure start with a lovely lunch and créche (my idea of heaven at the time, thanks to 2 children who didn’t like sleep then!) Meetings involved discussions and apologies about the seemingly never ending quest for funding and proposal drafting. To be honest it was difficult to stay motivated when it seemed destined not to get off the ground, although the chance to return to university speak was welcome and reminded me I had a brain albeit, prior to preg head and baby brain!!
Next a research team meeting arose and I was asked to attend and represent the parent panel. My mum had the children and I travelled to Leicester, I was made really welcome in the meeting despite constantly interrupting for explanations of acronyms such as ELNECS and MCRM. Despite feeling as though I was using language fit for a 3 year old amongst a group of academics my input was treated with respect and taken into consideration – wow useful to adults as well as children, that made a change!! At the first meeting I agreed to write a piece about a recent illness event in my house, to this day I still can’t remember what it was, so maybe I got a bit too much respect!
Then I attended the next research panel meeting, during which I was made aware that funding had been found, and hence it was full steam ahead planning the next parents meeting in which we are due to discuss what info is available, what we use and why, what we don’t and why. SN was keen to ask parents to bring anything they found useful with them, I felt this was a little much to ask, and our main priority was ensuring people attended, and we didn’t want to dissuade anyone. So we agreed that we would bring some material if conversation struggled, but I was pretty sure ladies would happily discuss what they found useful and why. I put forward some concerns about the current parents panel who’s children are no longer really babies and most of the parents will be more confident in dealing with illness. Also I had concerns over the demographics of the parents panel and wanted to ensure we included all ethnic backgrounds and social groups .
Once the venue was confirmed I set about accosting people in playgroups and via facebook.
Also Sarah asked me to review a proposal for which she hoped to attend a conference in
Australia, despite it involving interrupting watching football with my husband (you can imagine my disappointment!!) I had a quick read and returned my thoughts.
After getting my brain into research mode (it was painful as the last time was 12 years ago!) I also put a few thoughts forward about how to run the parents panel meeting knowing a few of the personalities I’d invited.
Also I intend to go to the doctors to collate some pamphlets about illness and take any written material I have at home for the panel to review and discuss. Prior to meeting where we review internet information I hope to look at the info beforehand.