What matters to me? – By Helen Nurse
What matters to me is that my daughter lives a full, healthy and happy life and is not limited by her Diabetes.
What matters to me is that within the confines of this unpredictable disease I have an element of control. That I am able to educate myself and my family to make the best decisions for Daisy.
What matters to me is to be able to say to her when she is older that I did everything I could to best look after her and to ensure she got the medical support she needed.
And what matters to me is to be able to say to others that I not only care and speak for my child but for each and every one of the 26,000 children in the UK with type 1. Including those children with parents who cannot stand up, speak out, ask for better, or question their care. They should get the same quality of care that my daughter gets, not just because I can ask questions and challenge practises, but because they are offered this.
You see as parents and families of children with type 1 we are unified. And I think we each have an equal right to the same high quality care and treatment regardless of where we live.
So that’s what matters to me and many, many other parents in our position. So what would help? Let’s start with the medical support…..
I want to be able to go to see our healthcare team and feel like they know us, they know Daisy, not just by name and HPA1C results, but as a person, so they can help us to respond to her needs. Respond to her challenges. Respond to her requirements. Not just physically but emotionally and physiologically too.
I want to feel supported by our GP, to have acknowledgement of this chronic, life long disease that our daughter faces minute by minute, day by day, month by month, year by year. So that the GP can be there to help and support us through this as a family. For example, I don’t want to argue about how many test strips she should be using.
You know, when Daisy gets sick or we have a problem that we don’t know how to deal with, we need to know who we can contact straightaway, for the specialist help and support needed 247. Because as we all know, Diabetes doesn’t sleep.
Of course, it’s not just the medicine and clinical support. Diabetes affects Daisy in all aspects of her life. Let’s take her learning for example…..
I want to be able to send her to school knowing she is safe, protected and looked after and that I am not going to have to collect her from the hospital because her diabetes has not been understood or has been neglected.
We all know that our children spend a third of their lives at school, if she does not get good blood levels then that is going to affect her and result in long-term complications. She was diagnosed aged 1. As we know, nerve damage can potentially start within 10 years of diagnosis, if stable control has not been sought. This could potentially mean when she is 11 she is unnecessarily suffering. It is my job as a parent to not allow that to happen and it is a schools job to support me in that.
Of course I’m like any other parent in that I want Daisy to have the same opportunities to learn and develop as the other children. BUT if she has too many highs or lows she won’t have this opportunity. Her ability for learning will be compromised and that is not fair.
And of course this is all part of a much bigger picture about the quality of our children’s lives. I think we need to remember how important everyone is in the life of our type 1 child– parents, healthcare team, school, family, friends. Everyone needs to help, to understand and to support. It is not about their diabetes in one box and everything else in their life in another box. Equally, as parents, we don’t want diabetes to define our child. We want it to be as seamless part of their life as possible – something that is never forgotten, overlooked or underestimated but also something that is challenged – we won’t let it beat us or our children.
So what would I like to see? I wish that every family in the UK living with a child with type 1 can say they truly have the best care they can imagine, the most supportive medical team and a school and community, within which their child’s condition is understand, supported and managed as best as is possible.
‘Big thinking preceeds big achievement’ and as much as this is a big goal, I believe it can be achieved.
I want to take you back to 2101, when Daisy was 16 months old, and she was a very poorly little girl. We experienced what we now reflect on as horrendous initial care and support. Daisy was 16 months old and in the first 6 months after diagnosis, we had 3 severe hypoglycemic episodes which resulted in seizures, paramedic call outs and hospital admissions. We faced regular daily and nightly hypo’s and hypers. We were not aware that this was not normal. We were in a bubble of trying to look after her day to day. Guidance and support was minimal and frankly inadequate. I remember thinking then “this can’t be right and this can’t be fair. There has got to be a better way.”
Fast forward to 2014, daisy is now 4 years old. She started in the reception class at primary school last September and she is doing really well and is very happy. Her diabetes is far more stable now. Yes we still have our challenges of course. And I am sure we will have plenty more to come! But critically we far more supported, involved and in control.
You may have come across the statistic that to become an expert in something takes around 10,000 hours of work and practical experience. I remember seeing Professor Hindmarsh present this at a conference a couple of years back and it always stuck with me. Since Daisy’s diagnosis her dad and I have clocked up a whopping just over 30,000 hours. I think we have therefore earned the right to call ourselves experts in Daisy and her diabetes.
And its interesting to think that every parent who comes through your door will have quickly clocked up 10, 20, 30, 50, 100,000 hours themselves…..
As much as we have clocked this up, we need your experience too – we need your professional expertise, your guidance, your training and your help, so that together we can be experts in our children’s condition and do everything we can for them.
So how can we as different types of experts, better work together? When I said back in 2010, “there has got to be a better way”, I got involved. I got involved with parents, with local networks, with peer review and am now the co-vice chair of the Families with Diabetes national network.
So what do we do as the Families with Diabetes network? We are working alongside all the organisations who provide our children’s care and all those who support our children and families. This means from the healthcare teams themselves. I have personally been involved in peer review, which I think is one of the most important improvement projects to come into paediatric diabetes.
We work with parent support groups and peer advocacy groups like Children with Diabetes. We also work alongside important organisations like DUK who lobby and campaign on our behalf, amongst other things and JDRF who of course provide hope for us in a cure.
So how do we work? As a network we have representatives from all the regions and we are able to share practice, communications amongst the networks and be a bridge between families and clinicians across the UK.
We are also a part of the new Children’s and Young Peoples Diabetes Partnership, which is going to a great way of enabling all organisations to work together to create consistency and high quality care.
We are working alongside all of these to make sure that wherever a child comes from, whatever background they live in and whatever their situation, they can receive the best quality care and attention to live as long and limit free life as possible in spite of their diabetes.
So what matters to me?
What matters to me is that when I wake up in the morning my daughter is breathing. I want her to have a good blood glucose level and can bounce out of bed happy to see the world. I know that second part won’t always be realistic, but hope is an important part of managing a child with type 1.
Daisy said something to me the other day, when we were sitting building a lego castle together. She said “with your help mummy I can do anything”
And as you can imagine I don’t want to let her down….
What matters to me is that we all work together. Let’s all work together, so that Daisy can do anything…”