Following a question posed by Dr Partha Kar at the Diabetes Professional Care conference in November 2015, I asked the diabetes.co.uk Type 1 population, as there are a lot of them concentrated in one place, the question:
“What would be your ideal care model for the NHS with your Type 1 Diabetes?”
There were quite a lot of responses, but it’s important to bear in mind that what I’ve summarised below comes from some of the more engaged type 1s in the community. These are the people who actively seek to manage their diabetes pro-actively and will attend clinic appointments looking to find out more and to challenge preconceptions. It does not necessarily reflect the view of those who have never accepted their condition or who don’t really have the capacity to do so. I suspect, therefore, that the engaged are not the majority of the population.
This is what they had to say…
Hospital Clinics and Healthcare Professionals
Recognise the patient type
Please recognise that a one size fits all approach absolutely doesn’t work. We, as an engaged community, have a lot of knowledge in our conditions and especially in ourselves. We are the experts in our own science experiments. You can identify us in the clinic when we turn up with reams of print-outs, documentary evidence of what we’ve been doing, explanations of managing various aspects of diabetes and loads of questions.
Don’t just think of us as patients. You need to remember that we are intelligent humans and we know we need to earn your respect. Many of us are professionals in our own disciplines and have undertaken significant education and examination to get there. Likewise, just because you are a medical professional, don’t expect us to give you any respect. You have a duty to earn ours, just as we have a duty to earn yours.
Ease of access to professionals
Some DSNs and Consultants are on Twitter, Facebook and email. Quite a few in fact. So use these media. If one can use it, all can use it. There should be no excuse for needing a phone call or a face to face meeting when an email or even an online chat session might be able to accomplish the same thing. Use these mechanisms in the same way as you would treat a patient you see for ten minutes every six months. This might even make it easier and you get to know them better.
Come and join in on the major on-line platforms. There are thousands of T1s participating and watching on diabetes.co.uk. You don’t need to say who you are, you can be an anonymous DSN or Consultant. If we don’t know who you are we aren’t going to judge you on that. Be a contributor. Show us the benefit of your experience. I realise this takes time, but it doesn’t have to take all your time. Stick to your clinical rules in this media and yo’ll still be professional. More importantly you’ll get an excellent feel for the rumblings in the community.
Online access to patient data
A lot of the interactive diagnosis needs the data from a pump, meter, etc. A lot of T1 patients have access to PCs to upload data. Find this out as early as you can in the relationship and give them an easy to follow outline as to how they can get the data to you. If patients are relying on HCP assistance rather than going it alone, you need this as quickly as possible, and this is the way to do it.
Use of anecdotal patient data
This is a more esoteric point. It would be great for clinics/HCPs to have a joined up framework that would allow HCPs to collect and organise patient experiences and use this as the basis for some form of analysis of indicators. I reference Lantus as an example where there are rather a lot of similar patient experiences. Just because it is experienced by multiple patients outside of an RCT doesn’t mean that the evidence is invalid, it just needs a more critical eye casting over it. You, as an HCP, are trained to be able to do that!
The Diabetic Community
There are many of us out there, both on-line and in life. We give back. We work with others to try and give them assistance through the medium of the internet. Many of us have a lot of knowledge and a lot of experience. Use us. Clinics could build up a network of Patient Mentors that have completed some type of formal training they are happy with and that has been validated. These could help with new T1’s that really are still feeling their way. Mentors wouldn’t replace the HCP’s but augment them in the community. Having someone that knows where you are coming from would be very beneficial to many folks. Obviously there would need to be some kind of agreed communications channels so that the mentor could quickly and easily engage the HCPs and keep them in the loop when necessary. Likewise, the idea of expert patients has been mooted from a DAFNE perspective as well.
Improve the prescription process
Prescriptions are a postcode lottery dependent on your surgery and CCG. The thing is, T1s need supplies. Being able to either obtain them in bulk (10 packs of testing strips at a time) for example, or self certifying need would go a long way to making it easier. Sure, keep an eye on excessive usage, but being challenged because I’m using 10 test strips a day is not helpful. Yes I test ten times a day. I have a pump and I drive. What else should I do?
If you don’t have a record of me testing this frequently (see the previous point about data from meters) yet going through the supplies, then you have a right to challenge.
The online patient access systems make a big difference to reordering, as do the Pharmacy re-ordering processes, but there still seems to be an inbuilt resistance to trust the patient. We are supposed to be innocent until proven guilty…
All wards should have suitably knowledgeable nurses on their day and over night wards that know about insulin, diabetic medicine and testing. Experiences amongst engaged T1s is that in-patient care is not well managed. There are many anecdotal cases where T1Ds have been allowed to become incredibly low going in to theatre and generally seem to be not listened to when trying to discuss how they need to use insulin. DAFNE doesn’t seem to be a familiar term amongst non-Endocrinology medics, nurses and anaethetists in hospital. With the qantities of type 2’s going on to insulin etc and increasing numbers of diabetics it is not acceptable that NHS Staff are not more aware of diabetes no matter what type you are. This can be extended to the “Diabetic” options on the menu, which are mostly far from Diabetic friendly and often don’t contain details of Macronutritional factors. How does someone on a pump or MDI manage that? The final comment on this section comes from a friend: “The prescribing Doctor that came round the ward after my op had absolutely no idea at all of MDI. No idea that I could not tell he an exact amount of insulin that I take each injection… Had no appreciation that it would depend upon how much food I could eat or what my levels are.”
Access to new technology and treatments
There are many technologies that are either not yet evaluated by NICE or unaffordable to the NHS. While these are not always ideal, some tools, such as pumps and CGMs seem to cost a fortune. These tools can make a huge difference to diabetic care (for engaged patients). Yet we all go out and individually buy them. The NHS has huge buying power and doesn’t seem to use it effectively. We know what the price of these products is. We’d like to see the NHS engage in a model where we can buy through the NHS. Your volumes are large enough that you can command a huge discount. There are plenty of people out there who will forego other luxuries for two weeks of Dexcom a month. It’s that worthwhile. People are willing to pay for more than you think! We’d like your help to lower the price of these technologies which really do help for engaged patients.
What about the unengaged majority?
Firstly, engage them, using media that they are familiar with. Hint. That’s not the surgery or clinic. Often this group needs people to talk to them in language they are familiar with. This is a common theme at the WDC2015 this year. This is where the Expert Patient Networks come in. We’re probably in a better position to meet people at a level that you guys aren’t as we’re able to offer a view on living with it and how it feels when your control is so much better. Of course, the T1 Diabetologists can as well…
Secondly, keep a benign eye on them. This is where you guys need to work with the iBGStars and Darios of the world. Give the users smartphone apps that automatically upload the glucose results they’ve recorded on the phone to you. Then you can see how they are getting on. Integrate some form of alerting so when there is a consecutive period of no testing, or very high results, the DSNs don’t go out and ask, they simply see. There’s no remembering to bring a meter to clinic for a six monthly telling off. Use “Big Data” tools to analyse. You won’t get all the carb data. Many people just don’t do that, but a pervasive smartphone gives you the ability to at least see glucose and if you can convince the pen makers to allow pen dosing to be transferred via bluetooth, then you could get that as well.
And when you get the alerts? Nudge. A friendly call to check how they’re doing, offer advice or maybe put them in touch with the engaged patients who have volunteered to help.
These are the more difficult ones to work with, and much of the intense work you already do will have to continue as I don’t think we have an answer for helping these guys any better than you do now. All we can do is take advantage of the technology advances to enable better overall collaboration with them.
While I realise that this is not a full model for care from a Diabetes standpoint, and there needs to be inclusion of the expectations around access to Insulin Delivery mechanisms, dosing, MDI/Pumping/Twice Daily and Education, I hope this starts to identify some of the areas that we’d like to engage with the NHS on to improve patient care. There is a reason that #wearenotwaiting exists. It’s because we aren’t…