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Address to the Australasian Paediatric Endocrine Group, Parliament House, Canberra, 17 November 2008 The patient perspective on care of Type 1 Diabetes Kate
Gilbert, Founder & President, Introduction
(Dr Michelle Jack, Session Chair): Kate currently works in the primary health sector, most recently on secondment to the Victorian government’s Department of Human Service and is studying for a Masters in Public Health. This year Kate has celebrated her 30th birthday, first wedding anniversary and her 25th anniversary of being diagnosed with Type 1 Diabetes. Thank you for the opportunity to be here today. I have been asked to speak about living with Type 1 Diabetes. From my introduction, with some quick mental arithmetic, y0u will have worked out that I was diagnosed with Type 1 Diabetes at 5 years of age.
I
am going to speak today about what it’s like to live with diabetes
as a child and as an adult, drawing on my own experiences as well as
some research which we have done. Together with my 'colleagues' from Reality Check, which is a popular online community of people with Type 1 diabetes, here in Australia, we have developed a Job Description for Type 1 diabetes. It would begin something like this:
We felt that there would be some essential skills and experiences required for this role:
In addition,
we felt that there would be some further 'desirable attricutes' for
anyone wishing to apply for this role. • Graduate degrees in medicine, biochemistry, physiology, chemistry, nutrition AND psychology. • Exceptional mental arithmetic skills would also be helpful; and • Obsessive-compulsiveness to constantly monitor, record and maintain detailed records of life events and pathology results would be highly desirable. The ability to work within a team is ESSENTIAL for this position, in fact you will be required to form, maintain and strengthen your team which will include people from all walks of life, who speak many different languages: endocrinologists, GPs, diabetes educator, podiatrist, dietician, ophthalmologist, private health insurer, government, non-government organisations, pharmaceutical companies and others.
• Daily monitoring of results must be completed consistently and within target • Annual cycle of complication screening must completed with clear reports for 80 years • You will be required to deal with a group of drugs classified by the TGA as high risk - and you will be required to find ways to safely administer these drugs without serious adverse events several times every day regardless of whether you are exhausted, busy, intoxicated or unwell. • Public scrutiny from external individuals of factors deemed to be important in the public conscience will be required, such as your choosing to eat a piece of your own birthday cake, and must be accepted with humility Employees
who meet and exceed these targets will be rewarded with: Finally, Career progression in this role is unlimited, as the demands of this role will call into play every organ and tissue in your body.
A
sense of humour is essential. I have been wondering lately about the impact that living with Type 1 Diabetes might have had on my life. Would I have been disinterested and ignorant about health, like some of my friends? Or would I have followed my family pedigree to the AIS and the green lawns of Wimbledon, as several cousins who followed have done? I'm not sure. I was a pretty serious, cautious kid. Totally missed the drugs thing. Some pretty major social embarassments thanks to diabetes malfunctions in my early teens were enough to put me off making it any more difficult to keep my cool in front of my friends and potential boyfriends. But we also know that many young people with diabetes go the opposite way. Emerging research is showing increased alcohol and drug use amongst young people with Type 1 Diabetes and is concerning that this might be a coping mechanism for the stress and anxieties of living with this demanding condition. There's a certain grit and determination, an odd sense of humour, an invaluable capacity to problem solve myself out of just about anything and anywhere. Are these helpful traits given to me by diabetes, or were they there already and maybe saved my life given that diabetes joined me too. Who knows?
The objective has been to create opportunities for people with type 1 diabetes to share real-life expeeriences to make living with diabetes a better experience. A lot of the work we do has been online, though we also attempt to connect people in person which is very important.
The things discussed are very wide-ranging, but people do speak a lot about their experiences of healthcare on the website, what goes wrong and what they would like from their healthcare providers. I thought I would share with you just a few things which I have learnt from all the discussions on the website over 10 years now, which might help you in your work.
The following is a statement which a young woman said to me quite a few years ago and which upset me then. I was even more distressed to hear it a second time from another young woman more recently.
This takes us to young adults and the specific challenges they experience, an area where The Type 1 Diabetes Network has done a lot of work.
Finally, we can't speak about young adults without talking about falling through the cracks. And on this point, what I can share with you from having heard many stories from young people with Type 1 Diabetes, is that they often simply feel there is nothing to be gained by turning up to their appointments. So they don't turn up. Then they drop out of the system. If there's nothing to be gained, why turn up? We have some work to do here. This is not easy but I am going to quickly share with you two tricks.
The other trick is to remember to laugh.
This is something which a young guy sent me quite a few years ago and has had a lot of mileage but never fails to make people laugh.
Humour connects and sustains us.
Another point I'd like to raise today is about the independence with which most people with type 1 diabetes manage their condition. We understand that it is only the few hours each year that patients spend with you in your rooms, and the rest that they spend at home with their families managing it themselves. And as they get older this becomes more and more the case. As paediatric specialists you need to be arming kids with the skills and knowledge to manage their condition independently, as they will have to do for many, many years to come.
In the same study, we also showed that complication screening rates amongst adults with Type 1 Diabetes were too low, with only 60% having completed the screening for retinopathy, nephropathy or neuropathy which we know is essential for preventing the development of these devastating complications of diabetes.
In the paediatric setting, you have an important opportunity to improve this - ensure that your young patients understand why they need to maintain complication screening - and, importantly, how to get it done.
Having started today with a job description (for living with Type 1 Diabetea) which noone would ever want, and few of us would probably make it past the 3 month review, I have another job description for you. You may not want this one either, but I would urge you to please consider it seriously.
We held
a number of teleconferences and then used online communication tools
over five months to communicate and work together and develop the statement. The Statement was launch at the national diabetes conferences, ADS-ADEA, on 29 August 2008 in Melbourne. And this is the serious job description that offer you.
The issues identified were:
No
Cure? The Type 1 Diabetes Opinion Leaders Group who did this work were charged simply with defining the problem, identifying the issues. However, they were extremely constructive and quite unstoppable in proposing solutions as well. So, alongside each of the issues, the Statement proposes a range of solutions. This is a work plan to go alongside the position description I am putting to you. The solutions
that have been proposed include: I think living with Type 1 Diabetes is like walking on a tight rope in many ways. Firstly with blood sugar levels - they go up, they go down, they go down further, we can fall off the tightrope one way or the other. We manage this balance every minute of every day. And many do so with great success. We certainly aren't ask foranyone to come up and be there with us, on the tight rope, every minute of every day. But we do need a safety net underneath the tightrope - and a safety net that we can find and see. Earlier this year, I had a very severe overnight hypo, a low blood sugar event. I was having seizures, fitting, and my poor husband, very distressed, called an ambulance. They were brilliant and I regained consciousness. I obviously wanted to work out what had caused this as it was quite unexpected and terrifying. I phoned my endocrinologist the next day - I see her privately a few times a year, she is absolutely brilliant, I have her mobile phone number and can contact her any time, and we briefly discussed what might have happened. She sent me for some blood tests to exclude the usual suspects but all came back clear. My endo was then rushing to head overseas for a conference and we never got to the bottom of what might have caused the seizures. Two weeks after the first one, I had another overnight hypo with seizures. This time my husband was all too familiar and managed to bring me round himself without calling the ambulance (which somehow makes it better). This was the first time in almost 10 years, perhaps since I was first diagnosed with diabetic eye disease at 21, that I needed some help. Someone to help me workout what was going wrong. In the end, it was support from other people I know who have diabetes, where I could troubleshoot (and de-brief!) and share notes and try to work out what had happened. What people with Type 1 Diabetes have at the moment isn’t a system, it is just very dedicated individuals, who work incredibly hard to try to help us – if you can find them, if they’re available, if you can work out how to get an appointment before 2020. We really need something that is more like a system. Things like guidelines for the care of adults type 1 diabetes, which I spoke of earlier, would open up the opportunities for clinicians less experienced in Type 1 Diabetes to be better placed to assist us if required, and would better arm people livign with Type 1 Diabetes about how best to manage our own condition. A hotline to contact experienced clinicians and peer leaders living with condition might also get us closer to a system that helps. We can sometimes forget the role of other people in the same shoes. But, as I am sure you are very well aware, it is one of the most common requests from people , families newly-diagnosed to be connected with other people who have been down the same path before. I owe my sanity to other people with Type 1 Diabetes who I have met over the years, who helped me normalise all the experiences and worries that I had. And the many, many failures. And who could spend the time working things through. Clinicians working with kids with diabetes have a terrific opportunity to arm these young people with the skills they will need when they grow up and have to manage their condition for the rest of their lives. As researchers, please do hurry up with that cure, but in the meantime, the transfer of any of the existing knowledge from the bench to the bedside, from evidence into practice would be wonderful, and not just in the very best tertiary centres and for people who can find their way to the very best tertiary centres, but to improve the care of people living with Type 1 Diabetes all over the country. And finally, health services and diabetes organisations, with the support of governments, need to step up and truly understand the complexity of living with Type 1 Diabetes and find ways to provide the proper basic safety nets that will help us all keep balanced up on that tightrope, until we find a cure. Thank you. Published 18 November 2008
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The arrival of our baby beagle (pictured) was another important event
for my family in 1983. 
• A demonstrated ability to analyse and interpret complex data
from multiple sources whilst taking into account varying degrees of
accuracy
The role draws on public monies, so we will of course have some performance
objectives and indicators which must be strictled adhered to.
Opportunities include:
Reality Check is a website which began focused on young adults with
type 1 diabetes, and it now has a broader focus (as we young adults
who founded it have got a little older!). 
Amongst
the website is an online discussion forum (pictured) where people can
post questions and others can post answers and share their own experiences.
The
first is a very simple one. It is to think about the subtle messages
that we give out. We talk a lot about good blood test results, bad results,
good control and bad control. This is necessary sometimes, but if we
think about how people with Type 1 Diabetes might do this many times
every day to refer to the home blood glucose tests we do, often 6 times
a day, sometimes more, referring to the result as good or bad very quickly
deflates your confidence. I encourage people with diabetes to see the
result as high or low and a call to action, nothing more, nothing less.
It takes away your confidence to think of it every time as good or bad,
putting a value judgement on a number. It also decreases any motivation
to do all those tests in the first place. Referring to the results as
high or low and a call to action is a very small change which can have
a big impact. 
"I'd
rather be blind than fat" sounds as ridiculous to me as it does
no doubt to everyone else in this room. But this is a reminder of where
many young women are at. Weight is a massive issue as we all understand,
and for many young adults, diabetes complications are abstract concepts
way in the future. It's horrible, but it's real and we need to remember
this experience. This i also an example of the many things that young
people often won't tell their doctors, but may share with other people
their age in the same boat.
We
know that 17 and 18 year olds have the worst glycaemic control of any
age group. We also know that psychological problems are intensified
by developmental stressors especially during any transition, but especially
the transition between childhood and adulthood. Some terrific work by
psychologist Paula Trief in the US has also shown us that those people
with diabetes who have fewer complications actually experience more
psychological impact and more worry. Fear of the unknown? Better the
devil you know?
Firstly, I advise all people with type 1 diabetes
to carry a sign like this with them, almost everywhere they go. The
GP especially, at least in my experience, a consultation can go completely
off the rails and referral forms magically appear out of thin air, as
soon as Type 1 Diabetes is mentioned. But in any case, it is always
a good idea to not address the diabetes first - you will connect better
by addressing the person.
A 
Interestingly, the purple bars in this chart
show the subset of our sample who had been consulting the basic multidisciplinary
team which I spoke of earlier, and their complication screening rates
were not much higher, remaining too low. 
This
chart shows self-reported HbA1c frequency in the same group, up above
90% in the last year, and 60% in the preceding 3 months. This is excellent
and shows that the group aren't lazy or completely disengaged. Perhaps
they have been spoken to more about HbA1c,
understand what it is and why it needs to be done - and it is certainly
much easier to get done for most people.
During
the first half of 2008, I have been working with all of the organsiations
and people shown on this slide towards developing '
Ten
key issues affecting Australians with Type 1 Diabetes were identified,
with contributions from many diabetes organisations and health professionals
alongside 
