It's me, Laura Marie: DKA

Tuesday, 23 May 2017

A letter to my parents...

Please click on this link to access my latest piece for The Diabetes Times; A letter to my parents 14 years after my diagnosis with Type 1 Diabetes.

Laura

I don’t know if you’ll remember me, we met 13 years ago in your GP surgery. You were the first Health Care Professional that I had spoken to in the UK following my diagnosis in Paris. You had a kind face and you were friendly and welcoming... (cont)

The Diabetes UK Professional Conference and Social Media

The Diabetes UK Professional Conference is over and now it’s time to reflect. In my column for The Diabetes Times I wrote about the topic I would be presenting at the conference and how it needed to grow from previous years. It needed to make more of an impact. I think it’s very important that after each talk the audience goes away with something to think about, something they can try to implement in their departments, and I believe that many of them did.

One topic, language, came up during the presentation. That day, language had been discussed via twitter by patients who were discussing the use of the word ‘non-compliant’. It hit a nerve with many people at the conference, patients and Health Care Professionals (HCP's) alike, and luckily the group I was presenting with had a stage to address that problem. In my presentation I made a point of telling the audience that I was labelled as ‘non-compliant’ due to being in DKA so many times - I make a point of mentioning this in all of the talks I do. I was not able (for so many reasons) to manage my diabetes in the way that I needed to, but in no way did that mean I was purposely not complying with rules that had been set for me. A patient who is struggling to manage their diabetes is not a rule breaker, they do not need the added pressure of feeling that they are purposely causing problems for others, they need support and guidance and they need (and very much deserve) respect in the way they are talked to and about. I hope that the use of language continues to improve.

During my session I talked about my journey with diabetes, trying to condense it into a 10 minute presentation, and tried to convey the seriousness of the first 10 years after my diagnosis. However, I didn’t need to tell them how dangerous my habits of not testing my glucose levels or taking my insulin correctly was. The audience was made up of health care professionals, they knew the seriousness of my actions. The way that I used to manage my diabetes shocks many people, myself included, but time and time again I hear about patients who are just like I used to be... HCP's ask me about how I turned things around and my honest answer is by using social media, however I still feel that I chose to gain control far too late. I wish I had done it sooner, I wish it had been suggested to me sooner, and that’s what I hope to get across to HCP's when I talk to them, that a turning point for their patients could be just around the corner.

During my presentation I talked about how my recovery began. For me it was a combined recovery, using face-to-face clinic appointments alongside social media. I think for many HCP's this may sound like a strange combination, or certainly a few years ago it may have, but now I know many people who, like I did, use social media as a part of the diabetes treatment. For so many, thousands in fact, social media plays an important role in not only peer support but also diabetes education, building confidence around living with diabetes, learning to trust and communicate with our health care teams, developing our own knowledge and understanding about the condition and many more aspects. Social media isn’t just about sharing pictures of cats, it’s so much more than just being social, it’s about learning, directing, engaging and developing. The face-to-face appointment aspect has really helped me too – It made me realise what a wonderful, dedicated and passionate health care team we have in Portsmouth. In a funny way it wasn’t until I started to really trust them that I realised how passionate I could be about the condition that had tormented me for such a long time.

The ‘and finally’ part of my talk came with a take home message - although there are thousands of patients who use social media as a part of their diabetes treatment, there are still thousands who don’t. There will be many reasons for this and, as I said during my talk, social media isn’t for everyone, but there will be many patients who can and will benefit from it. Perhaps it would just take that small suggestion, like I had three years ago, to take a look and see what comes of it.

Three years ago, when Partha suggested I set up an account for local patients to connect with one another, I didn’t think it would help my diabetes in the slightest. I really felt that I was a lost cause, however I’ve achieved a lot in the last three years – A reduced HbA1c, dormant retinopathy, confidence in living with diabetes, knowledge of how to avoid complications, feeling able to take control and improve my self-management and perhaps the most important to me is being involved in making changes in how diabetes care is delivered for others. If I had known all of this after my diagnosis, before I took so many wrong turns and ended up in trouble with my health, I would have done things very differently. I would have taken responsibility and had better outcomes and that’s what I hope others can achieve. Like I said, it’s not for everyone, but for some, social media can be one of the best tools they have against diabetes.

I gained 88 new twitter followers during the Diabetes UK Professional Conference. Over half of these are Health Care Professionals… Now I’m excited to see how we can work together on social media for the benefit of patients. Let’s see just how much of an impact we had and which changes have been made at next year’s conference…

Ninjabetic x

7 Day Diabetes Service

Diabetes patients in Portsmouth had good news this week as the diabetes department has finally been given the green light to have a 7 day service. What will this look like on paper? How exactly will this be done? At the moment I don’t know, but what I do know is that patient safely will be improved, therefore improving the overall quality of the patient experience.

Reflecting back over past experiences of inpatient care I would say that they have been… variable. I have, unfortunately, suffered from DKA (Diabetic Ketoacidosis – A dangerous and potentially life threatening complication) in the past, despite my best efforts to fend it off, resulting in hospital admissions. Some experiences of inpatient care have been smooth and some less so. Of late, as more and more people are using insulin pumps to manage their diabetes, I’ve heard people talking about fear and uncertainty over hospital admissions, not only from patient's but also hospital staff.

In the media recently, the case of Gillian Astbury has come to light and has highlighted the unacceptable standards of basic care in Stafford Hospital that resulted in Gillian’s unnecessary death. For those who don’t know, Gillian died at the age of 66 in 2007 due to nursing staff failing to administer her insulin. Gillian went into a coma as a result of prolonged high blood glucose levels and sadly passed away.

How Gillian must have felt being so poorly with such high blood sugars makes me feel incredibly sad. As someone who’s suffered from DKA I can relate in some way to the terribly uncomfortable, sometimes painful, feeling that it brings, the unquenchable thirst that is sustained by not being able to keep fluids down, and the utter exhaustion the patient feels as their body is drained from energy, leaving them wanting to do nothing but sleep.

What makes me feel even sadder when I think about Gillian is how quickly a patient can feel better when they are given the correct care for their diabetes. Insulin – that is what’s needed when a person’s blood glucose level is high – and it astounds me that, for whatever reason (though there is NO acceptable reason), insulin wasn't given to Gillian. When I’ve been in hospital with high blood glucose levels before it’s almost as if I can feel minute by minute the affect that insulin is having, and at that time there is no better feeling in the world as relief washes through you.

As I mentioned above, my care has been variable. Two examples that stand out to me are; being admitted to hospital and being attached to a sliding scale that was delivering a large amount of insulin, whilst still being connected to my insulin pump, resulting in my blood glucose levels dropping dangerously low. It wasn’t until my diabetes team arrived on Monday morning that anything was done. The second example was being refused a sliding scale on admission, resulting in me being in DKA for 12 hours until, again, my diabetes consultant arrived the next morning. Note that my diabetes team played an integral part in my care improving.

These experiences started my involvement in advocating for 24/7 care and 7 day services.

Firstly I addressed the issues, face-to-face, when I was asked at the Portsmouth Type 1 Diabetes Conference (The Sweet Meet) what I wanted from my diabetes team.

“Patient safety for all diabetes inpatient's and a 7 day service.”

I couldn’t even articulate what this service would look like because at the time I was still incredibly frustrated at what I’d experienced.

The next step was to make some more contacts. NHS IQ (NHS Improving Quality) were my first port of call and I was invited to a 7 day service conference in which I was given the opportunity to talk about my experiences to a room full of Health Care Professionals, Commissioners, patients and also Sir Robert Francis’ team. It didn’t stop there – I gathered information from other Trusts about how they were delivering a 7 day service in some departments and passed it to providers at my hospital.

Next up was to address the issue with those who would play an essential part in improving patient safety. I wrote to the CEO of my hospital, the chief of medicine, the heads of the departments where I was admitted and my diabetes team. They each had copies of my experience and soon enough I received a long and positive reply from the CEO. Perhaps I should have gone through the system and gone to PALS, but Diabetic Ketoacidosis can kill in a matter of hours – Do we always have time to go through the system?

And finally… This week, over twitter, I heard the news that Portsmouth Hospital Diabetes team have been given the thumbs up to have a 7 day service. I know that a lot of hard work must have gone into this service becoming a reality and I know the hard work won’t end there as the DSN’s deliver it. As awful as my experiences were, I was lucky enough to get through them and maybe help in some way towards this service. However, it’s a sad fact that it came to patient safety being compromised to make this happen, and that patient’s need to go through so many different channels just to feel safe and to be cared for in an appropriate way. It’s also an incredibly sad fact that, in the case of Gillian, it took someone losing their life for diabetes to be respected.

RIP Gillian x

A Mothers Story

One summers day in 2002 when my daughter was 16 her life changed dramatically as she was diagnosed with Type 1 Diabetes. For both her and me life would never be the same again. I was to begin a journey with a roller coaster of emotions, one for me that will never end.

We were on holiday in Disney Land Paris and in those final days, before being diagnosed, I watched my precious child fade away, emaciated with an unquenchable thirst, and at the end unable to breathe before finally collapsing and being airlifted to intensive care in Paris (a doctor had misdiagnosed gastroenteritis). As she was taken from me for the first time in my life I felt numb, in shock and completely bereft, wanting to wake up from the nightmare. Then, as reality sunk in, my grief overwhelmed me as I sobbed every night for hours, knowing what such a condition would mean for Laura.

I cried tears of sadness so strong it felt like a physical pain, that lead to tears of anger and frustration. They are tears that still fall when the sadness I carry inside me surfaces, usually when Laura is unwell. Over the years I have tried to rise above my feelings in order to be strong for Laura, who was struggling with her diabetes. I have become an expert at hiding my feelings of sadness and often desperation, tears pricking at my eyes, only to let them fall when she leaves the room.

At the time of her diagnosis I questioned everything. "Why my beautiful baby girl? What did she do to deserve this?" She has always been intelligent, articulate, beautiful and perfect in every way. A gentle child, sensitive and almost ethereal as she seemed to float through life on her own little cloud. It was so unfair that life had dealt her the cruellest of blows. I felt so alone in my sadness and didn't feel anyone could identify with it or help me. No help was offered to me as a mother, maybe because Laura was diagnosed at 16 and was sent straight to an adult diabetes clinic, I'm not sure but inside I was crying out for help.

I recall the trauma of being told in French that my daughter has diabetes, simply that and no further clarification or explanation, and being presented with a bill for her hospital care. I remember the hours we spent with tears pouring down our faces as my precious daughter was poised with a syringe over her leg, attempting to inject herself for the very first time. It broke my heart and honestly, it will never mend.

Over the following years there were multiple hospital admissions with DKA (diabetic ketoacidosis) as Laura struggled to come to terms with her condition. To me, the smell of ketones had become normal. Laura would sob buckets in hospital as painful blood gasses and endless cannula insertions were carried out whilst feeling so unwell at the same time. I would be inwardly sobbing but putting on a brave face for my precious Laura. I always wanted to say to nursing staff on discharge - Please don't send us away without help, I can't cope, it's going to happen again. I never said it because I knew deep down that Laura needed to come to terms with her diabetes and asking for help, I couldn't do that for her.

I felt helpless frightened and full of pessimism for Laura's future. I had to endure hearing my daughter saying things that a mother would never imagine she would hear from her cherished child. Laura would say - My life expectancy has been reduced by 20 years and I may die before you, I won't need a pension. Last year whilst in A&E resus she asked me "Mum am I going to die?"

On a more positive note, Laura has made me the proudest mother in the world. She has turned her own personal health around and is on a mission to promote a positive attitude towards diabetes in her own quirky and unique way in order to help others. She has come through this painful journey and has grown into an articulate intelligent and beautiful young woman who is phased by nothing. My tears are now tears of joy, knowing as only a mother knows that she will undoubtedly continue on her journey leaving her own very precious footprint, blazing a trail wherever she goes, touching the lives of many as she now seeks out her own destiny.