I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). The last post shares the outstanding experience I've had moving to an insulin pump.
On a slightly brighter note I thought I would share my absolutely excellent experience of moving from MDI (multiple daily injections) to Insulin Pump therapy. The clinic I attend is quite pro-pump and the idea was first mentioned to me some years ago as a possible solution to my concerns over hypoglycaemia. I have never had a problem with severe episodes, but the low-level dips have always been a little too frequent and in more recent years I had become slightly concerned that my warning signs might be weakening.
When an insulin pump was first suggested, many years ago, I was intrigued as to how (if a person was still going to be making similar errors in carb counting, for example) the transformation in control came about. Unfortunately, the consultant who was advocating a pump could not clearly articulate ‘how’ it improved things – just that it did. Sadly, this was not really enough for me. Like almost everyone considering a pump I had an instinctive and fairly profound unease about being attached to something 24 hours a day, 365 days a year and I remained firmly ‘pump averse’ for several years.
It was only after perhaps two years of renewed effort in gaining real control over my diabetes, while at the same time coming into contact with a number of pump users online that I began to understand how and why pump therapy worked. At the same time though, I became aware of the ‘postcode lottery’ that seems to be part and parcel of getting pump therapy funding in the UK. I wondered if I had perhaps missed my chance, or if it would take the three or four years of struggle that others experience.
Having pushed my MDI to the limits, learning an awful lot about how my diabetes works, improving my HbA1c and losing a lot of low-level hypos into the bargain I realised that however good it got it still wasn’t going to be good enough. I decided to investigate the option of a pump at my annual review in September. I had a good two-way conversation with a Registrar who agreed that many of the challenges I continued to face would be better tackled with an insulin pump.
She booked me an appointment with the Pump Specialist Diabetes Nurse the following week. Although I hadn’t officially done a course on carb counting and dose adjustment it was agreed that I knew enough for this not to present a problem. The DSN put my case to the pump clinic Consultant, who agreed funding with the PCT and I started on an insulin pump a few weeks later.
I cannot imagine a better experience. I was treated as an individual throughout and my particular needs and circumstances were taken into account at every stage. Not only that, but the transition was handled excellently – with lots of care and attention, frequent phone calls and follow-up during those tricky early days.
When things go well it is hard to imagine a better healthcare system than the NHS.
Because no two days with type 1 diabetes are the same. Except when they are.
Showing posts with label QiC Awards. Show all posts
Showing posts with label QiC Awards. Show all posts
Posted by Mike on Friday, 16 March 2012
Posted by Mike on Thursday, 15 March 2012
All too familiar? : QiC Awards 2012 Guest post
I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). This second post does a bit of moaning about decentralised care.
Familiarity breeds contempt they say, and I suppose that is true of those with chronic conditions. We have attended so many appointments, check-ups and dealt with so many prescription requests over the years that we can become quickly frustrated by any perceived administrative inefficiency.
We are already devoting quite a considerable amount of time and effort to this ‘playing at being a pancreas’ project and have little enthusiasm for repeat appointments and any apparent lack of communication between different parts of our care team. For example, I needed to make some changes to my repeat prescription recently as suggested by the DSN at the hospital. It took at least four attempts to get it right at my surgery. This is about average. I’m not sure how I could have made the requests any clearer. In the end it took two handwritten notes, one typewritten, one from the DSN herself and three visits to the GP’s reception.
At no point was I called or emailed with a query or to request any clarification, I just had to keep going back and asking for the same thing over and over until the repeat prescription form eventually came out right. And this is a surgery that I know handles their aspects of my care brilliantly. Compared to other people’s experiences that I read on various forums, I know I am very lucky.
There seems to be another push for the decentralisation of care at the moment. I can remember when what I used to refer to as my 30,000-Jab Service (annual diabetic review) took place with two visits. I would get some bloods taken a week or two before my appointment, then go along to clinic and spend the inevitable hour waiting to be seen before being variously poked and prodded until everyone was satisfied that I was OK to be released for another 12 months. All in all, including the blood tests, it probably took about two or three hours.
Change 1: The arrival of eye screening units. The traditional scary-pupil-enlargement-and-bright-light-combo was taken out of the review and began to involve snazzy photography by a mobile unit at the GP surgery rather than being peered at by someone clutching an ophthalmoscope and holding their breath. Not a bad change – but it did involve an extra appointment and thus a bit more waiting room drudgery.
Change 2: The next thing that happened was that a practice nurse and GP at my surgery went on a short course, and they began to run a diabetes clinic. Since I’m on their books I was not-very-gently encouraged to attend (I always assumed there was a financial incentive). Up to that point my care had always been at the hospital, and for a year or two I endured double appointment ‘fun’. Twice the appointments, twice the blood tests, twice the reviews, more hours spent in waiting rooms, more time away from work – no actual benefit.
Since the surgery was not taking no for an answer I ended up signing myself off at the hospital and kept going to my GPs for a few years. This was all well and good for some things, but after drifting for a while with a not-disastrous-but-not-great HbA1c I had a peculiar hypo one night that shook me up a bit and ended up with a precautionary, though looking back largely unnecessary, trip to A&E.
Some of the long-standing frustrations and/or peculiarities in the micro-management of T1 became more pressing. But when I went for an appointment first with the practice nurse, then with the practice GP ‘with interest’ both looked a little rabbit-in-the-headlights when I started asking pointy questions about changing insulins. I think the GP said ‘It’s a bit out of my league really’. So I was referred back to the hospital again. Approximately 18 months later I am going through that same loop again – ‘review overdue’ is appearing on my repeat prescription request form. I’m booked in to the GP clinic again. Even though I had an ‘annual’ review six months ago.
Now that doesn’t sound too troublesome as a story – but coming from a point of feeling ‘well cared for’ for about 10 or 15 years with one or two appointments a year the number of appointments has risen exponentially. And often the appointments can be 2 minute affairs just to say that someone doesn’t know and I’d have to go and see someone else.
I am extremely lucky in that my working hours are quite flexible, but in previous jobs this would have been extremely difficult to manage. I can understand the logic in trying to free up time in hospitals by getting some of the checks and tests (weight, blood pressure, eye squinting, toe tickling and so on) done in a local GP surgery, but the problem seems to be that the various parts of the now widespread team are not sharing their bits of information effectively.
Additionally if you break down one appointment into four or five different slices it becomes a lot more troublesome and time consuming for the patient. From the surgery point of view I can see the QoF* incentive to get good results from all the people with diabetes on your books – after all we are expensive to keep – but surely a result is a result? A test and/or notes taken at hospital clinic should not need to be repeated a month or two later at the surgery unless there is a compelling clinical reason for doing so.
*The Quality and Outcomes Framework allocates 'points' for GP surgeries where patients with long-term conditions are meeting certain criteria and/or have all the relevant records up to date. The points then equate to additional budget for the surgery.
Familiarity breeds contempt they say, and I suppose that is true of those with chronic conditions. We have attended so many appointments, check-ups and dealt with so many prescription requests over the years that we can become quickly frustrated by any perceived administrative inefficiency.
We are already devoting quite a considerable amount of time and effort to this ‘playing at being a pancreas’ project and have little enthusiasm for repeat appointments and any apparent lack of communication between different parts of our care team. For example, I needed to make some changes to my repeat prescription recently as suggested by the DSN at the hospital. It took at least four attempts to get it right at my surgery. This is about average. I’m not sure how I could have made the requests any clearer. In the end it took two handwritten notes, one typewritten, one from the DSN herself and three visits to the GP’s reception.
At no point was I called or emailed with a query or to request any clarification, I just had to keep going back and asking for the same thing over and over until the repeat prescription form eventually came out right. And this is a surgery that I know handles their aspects of my care brilliantly. Compared to other people’s experiences that I read on various forums, I know I am very lucky.
There seems to be another push for the decentralisation of care at the moment. I can remember when what I used to refer to as my 30,000-Jab Service (annual diabetic review) took place with two visits. I would get some bloods taken a week or two before my appointment, then go along to clinic and spend the inevitable hour waiting to be seen before being variously poked and prodded until everyone was satisfied that I was OK to be released for another 12 months. All in all, including the blood tests, it probably took about two or three hours.
Change 1: The arrival of eye screening units. The traditional scary-pupil-enlargement-and-bright-light-combo was taken out of the review and began to involve snazzy photography by a mobile unit at the GP surgery rather than being peered at by someone clutching an ophthalmoscope and holding their breath. Not a bad change – but it did involve an extra appointment and thus a bit more waiting room drudgery.
Change 2: The next thing that happened was that a practice nurse and GP at my surgery went on a short course, and they began to run a diabetes clinic. Since I’m on their books I was not-very-gently encouraged to attend (I always assumed there was a financial incentive). Up to that point my care had always been at the hospital, and for a year or two I endured double appointment ‘fun’. Twice the appointments, twice the blood tests, twice the reviews, more hours spent in waiting rooms, more time away from work – no actual benefit.
Since the surgery was not taking no for an answer I ended up signing myself off at the hospital and kept going to my GPs for a few years. This was all well and good for some things, but after drifting for a while with a not-disastrous-but-not-great HbA1c I had a peculiar hypo one night that shook me up a bit and ended up with a precautionary, though looking back largely unnecessary, trip to A&E.
Some of the long-standing frustrations and/or peculiarities in the micro-management of T1 became more pressing. But when I went for an appointment first with the practice nurse, then with the practice GP ‘with interest’ both looked a little rabbit-in-the-headlights when I started asking pointy questions about changing insulins. I think the GP said ‘It’s a bit out of my league really’. So I was referred back to the hospital again. Approximately 18 months later I am going through that same loop again – ‘review overdue’ is appearing on my repeat prescription request form. I’m booked in to the GP clinic again. Even though I had an ‘annual’ review six months ago.
Now that doesn’t sound too troublesome as a story – but coming from a point of feeling ‘well cared for’ for about 10 or 15 years with one or two appointments a year the number of appointments has risen exponentially. And often the appointments can be 2 minute affairs just to say that someone doesn’t know and I’d have to go and see someone else.
I am extremely lucky in that my working hours are quite flexible, but in previous jobs this would have been extremely difficult to manage. I can understand the logic in trying to free up time in hospitals by getting some of the checks and tests (weight, blood pressure, eye squinting, toe tickling and so on) done in a local GP surgery, but the problem seems to be that the various parts of the now widespread team are not sharing their bits of information effectively.
Additionally if you break down one appointment into four or five different slices it becomes a lot more troublesome and time consuming for the patient. From the surgery point of view I can see the QoF* incentive to get good results from all the people with diabetes on your books – after all we are expensive to keep – but surely a result is a result? A test and/or notes taken at hospital clinic should not need to be repeated a month or two later at the surgery unless there is a compelling clinical reason for doing so.
*The Quality and Outcomes Framework allocates 'points' for GP surgeries where patients with long-term conditions are meeting certain criteria and/or have all the relevant records up to date. The points then equate to additional budget for the surgery.
Tags:
guest post,
NHS,
QiC Awards
Posted by Mike on Wednesday, 14 March 2012
My other full-time job : QiC Awards 2012 Guest post
I was invited to write a blog post or two for the Quality in Care (QiC) awards 2012. QiC highlights and recognises outstanding practice and initiatives of healthcare professionals, NHS trusts and other organisations in the care of long-term conditions including diabetes that meet the values of QIPP (Quality, Innovation, Productivity and Prevention). This first post considers some issues that can arise for HCPs when dealing with people who live with a condition day-in day-out.
I should perhaps begin by saying that during the 20 odd years that I have had Type 1 diabetes I have had what I consider to be excellent care from pretty much every DSN, registrar, consultant, dietician, phlebotomist and GP I have come across. I am also aware, from reading accounts from people with diabetes elsewhere in the world, that the UK is a pretty darned good place to live if you happen to have a wonky pancreas. Now anyone who has spent any time treating people with diabetes will surely know them to be the most even-tempered, uncomplaining and obedient of patients(!) and I’ve been invited to reflect on my experiences from ‘the other side of the desk’.
Diabetes is a complex and contradictory condition to be diagnosed with. Long after the initial shock has worn off, patients are regularly assailed by conflicting emotional responses: Having diabetes doesn’t have to stop me from doing anything I want to... Diabetes stops me doing anything I want to... I can eat anything I want as long as I dose for it correctly... There is absolutely nothing that I can eat without causing complete chaos in my levels... I can do this! I just can’t do this any more! With diabetes it’s possible to experience any of these feelings in quick succession – or quite possibly several all at the same time.
What is worse for healthcare professionals, of course, is that diabetes is insanely personal. In the Diabetic Online Community (all those diabetes blogs and forums that you probably don’t read) there is a well-worn phrase that stubbornly refuses to die out from over-use – Your Diabetes May Vary.
One-size-fits-all this isn’t. Advice you might give to one patient that would work perfectly, might be a complete disaster to the next. Not only that but we diabetics, especially those of us with Type 1 tend to hang around for quite a while these days. If diabetes was my job, I’d be edging toward a carriage clock and time off for good behaviour by now.
This poses two main problems for HCPs I think. First is the assumption that we’ve been told things before. Second is the assumption that we don’t have a clue what we are doing. The first assumption could leave a patient floundering for years without a basic understanding various diabetes management approaches, dose adjustment or carb counting for example, simply because they were not in vogue when they were diagnosed. These patients then don’t get updated later as it is assumed by fresh faced perky young medics that they must know all this already. The second assumption could see a steel shutter slam down during a conversation if a suggestion is made that ‘If you are high you need to take a bit more insulin’ to a person who has been carefully tweaking their own doses for years.
In order to control my diabetes to my satisfaction I have to think about it more or less continually. It’s the first thing I think about when I wake up, and the last thing I attend to before sleep. There’s not a morsel of food that I’ve eaten in over 20 years that was not first considered in relation to its likely effect on my blood glucose levels. Any appreciable change in level of activity even just popping round the shops needs a bit of thought and a little forward planning. Even changes in the weather have to be watched. When I’m managing my diabetes well, it’s pretty much a full time occupation – the team I see get to think about it for about twenty minutes once or twice a year.
I should perhaps begin by saying that during the 20 odd years that I have had Type 1 diabetes I have had what I consider to be excellent care from pretty much every DSN, registrar, consultant, dietician, phlebotomist and GP I have come across. I am also aware, from reading accounts from people with diabetes elsewhere in the world, that the UK is a pretty darned good place to live if you happen to have a wonky pancreas. Now anyone who has spent any time treating people with diabetes will surely know them to be the most even-tempered, uncomplaining and obedient of patients(!) and I’ve been invited to reflect on my experiences from ‘the other side of the desk’.
Diabetes is a complex and contradictory condition to be diagnosed with. Long after the initial shock has worn off, patients are regularly assailed by conflicting emotional responses: Having diabetes doesn’t have to stop me from doing anything I want to... Diabetes stops me doing anything I want to... I can eat anything I want as long as I dose for it correctly... There is absolutely nothing that I can eat without causing complete chaos in my levels... I can do this! I just can’t do this any more! With diabetes it’s possible to experience any of these feelings in quick succession – or quite possibly several all at the same time.
What is worse for healthcare professionals, of course, is that diabetes is insanely personal. In the Diabetic Online Community (all those diabetes blogs and forums that you probably don’t read) there is a well-worn phrase that stubbornly refuses to die out from over-use – Your Diabetes May Vary.
One-size-fits-all this isn’t. Advice you might give to one patient that would work perfectly, might be a complete disaster to the next. Not only that but we diabetics, especially those of us with Type 1 tend to hang around for quite a while these days. If diabetes was my job, I’d be edging toward a carriage clock and time off for good behaviour by now.
This poses two main problems for HCPs I think. First is the assumption that we’ve been told things before. Second is the assumption that we don’t have a clue what we are doing. The first assumption could leave a patient floundering for years without a basic understanding various diabetes management approaches, dose adjustment or carb counting for example, simply because they were not in vogue when they were diagnosed. These patients then don’t get updated later as it is assumed by fresh faced perky young medics that they must know all this already. The second assumption could see a steel shutter slam down during a conversation if a suggestion is made that ‘If you are high you need to take a bit more insulin’ to a person who has been carefully tweaking their own doses for years.
In order to control my diabetes to my satisfaction I have to think about it more or less continually. It’s the first thing I think about when I wake up, and the last thing I attend to before sleep. There’s not a morsel of food that I’ve eaten in over 20 years that was not first considered in relation to its likely effect on my blood glucose levels. Any appreciable change in level of activity even just popping round the shops needs a bit of thought and a little forward planning. Even changes in the weather have to be watched. When I’m managing my diabetes well, it’s pretty much a full time occupation – the team I see get to think about it for about twenty minutes once or twice a year.
Tags:
guest post,
NHS,
QiC Awards
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