Gastroparesis (part 2)

Groombridge Place, June 2013

In part 1, I described the symptoms of gastroparesis, what might be causing it in someone with diabetes, and the problems that arise - gastrointestinal symptoms, poor glycaemic control, malnutrition and weight loss, and depression. Now I'm going to write about possible treatments.

Nerve damage, if that's what is causing the problem, is irreversible. We can't (yet) mend nerves: once they're gone, they're gone. There doesn't seem to be an option to fix the faulty pacemaker cells either. But it is always useful to run through a list of things that will definitely not be helping. For example, opiate drugs are known for their constipating effects, and should be replaced with alternative painkillers if pain relief is necessary. Cigarette smoking has been shown to delay the gastric emptying of solids. Unfortunately, high blood sugar has also been shown to significantly delay gastric emptying, which is of no comfort to the person with diabetes who has been trying unsuccessfully to manage wild swings in blood sugar in the face of unyielding opposition from the gastroparesis itself. So I wouldn't bother opening that particular can of worms.

There are three methods used to help improve gastric emptying: pharmacotherapy (i.e. drugs), diet and surgical approaches. Two types of drugs can help with symptoms: prokinetics, which help to speed the intestinal contents on their way, and anti-emetics, which are used to prevent nausea and vomiting. These are routinely used, but changes to diet can be more effective than the medicines.

The Glycaemic Index (GI) is often used to assist with blood glucose control and weight management, and describes the speed at which carbohydrates are digested. High GI foods e.g. foods containing large proportions of monosaccharides and disaccharides (sugars) are digested quickly, and their glucose payload can reach the bloodstream before subcutaneous insulin has had time to get there, causing blood glucose to rise beyond the desired range. Low GI foods (complex starchy carbohydrates) such as oats and pulses are digested more slowly, and therefore deliver glucose to the blood slowly and more controllably, and keep you feeling fuller for longer. Unlike the majority of people with diabetes, high GI foods may help someone with diagnosed gastroparesis. These foods tend to contain simple sugars or processed carbohydrate and little fat and fibre - sweets, white bread, mashed potato.

Another good reason to avoid fibre, apart from its role in slowing gastric emptying, is that as it hangs around in the stomach it can contribute to the formation of unwanted fibrous masses called bezoars. The disadvantage of avoiding fat, however, is that someone with chronic gastroparesis is at risk of malnutrition, and could do with the calories supplied by energy-dense fatty food.

The diabetologist who referred the patient with gastroparesis to me suggested that a low carbohydrate diet might help reduce the volatility in blood glucose levels. The problem with this approach is that taking out the carbs leaves an energy deficit that can either be filled by protein or fat. Protein increases feelings of satiety, which is certainly not what we want, and fat slows gastric emptying. Blood glucose levels may be better managed with a greater proportion of high GI carbohydrate, which might actually be released from the stomach in a more predictable manner.

Research suggests other dietary recommendations, both to relieve symptoms and to maintain nutritional status. Small frequent meals are digested better than three large meals a day, and 'particle size' makes a difference - food should be chewed well, and liquids seem to leave the stomach more easily than solids. A patient might be prescribed three liquid supplements a day, adding a much needed 900 calories. Positioning during a meal, and sitting up and/or walking post-meal can promote gastric emptying; alcohol and carbonated drinks tend to exacerbate symptoms of bloating.

Placing a feeding tube below the stomach and pylorus in the jejunum (upper small intestine) allows nutrition to bypass the problem area, but brings with it the risk of infections and the inconvenience of having to be hooked up to a feed pump for hours at a time - jejunal feeding has to be much slower than feeding into the stomach. If nutritional status continues to decline, intravenous (parenteral) feeding is a possibility, but brings a whole new range of potential complications.

As well as addressing symptoms and nutrition, there are those pesky blood sugars to consider as well. Eating a meal containing carbohydrate requires a matching dose of insulin in order to maintain blood glucose within the desirable range, but we have seen that giving the insulin at the usual time (before, during or immediately after the meal) doesn't work if the glucose hits the bloodstream over a period greater than the lifetime of the insulin. So we could try splitting the insulin dose, perhaps giving 30% of the total dose just after eating, and the remaining 70% after an hour, or two, or whenever we think blood glucose is rising.

If you don't want to end up as a pincushion, this type of insulin regimen can be managed much more comfortably and conveniently with an insulin pump, which can be programmed to deliver insulin at whatever rate you desire. Delivering 6 units of insulin at one-tenth of a unit every five minutes over five hours can't be done with conventional insulin injection devices, but is a piece of cake with a pump.

Unfortunately the NHS doesn't fund Continuous Glucose Monitoring (CGM) systems, which have a subcutaneous sensor that samples interstitial fluid every five minutes linked to a device that translates the reading into an estimated blood glucose level. We lend these systems to patients to wear for just seven days at a time when we can't work out what their blood glucose is doing. Otherwise, users have to buy the kit and consumables themselves, which works out rather expensive. Although not mentioned in the research papers I have read about this condition, I think that CGM in combination with an insulin pump would be a valuable and effective approach to managing blood glucose with gastroparesis.

Finally, there are more technical and innovative options to try.

• Gastric electrical stimulation (GES) was approved in 2000 in the USA. Similar to a heart pacemaker, the GES device is implanted next to the stomach and mimics the role of the gastric pacemaker cells, stimulating and enhancing vagal function and muscle tone. 
• Botox (Clostridium botulinum toxin) is a muscle relaxant used cosmetically to reduce facial wrinkles, but will relax muscles elsewhere to therapeutic effect. Injecting Botox into the pyloric sphincter may cause it to relax sufficiently to allow better gastric emptying, but trials have shown this effect to be short-lived. 
• In future, that universally-cited panacea 'stem cell therapy' may be relevant, providing a way to replace or rejuvenate those faulty pacemaker cells of Cajal.

Gastroparesis (part 1)

Berlin, March 2013 - no idea about the Star Wars characters...

I saw a patient recently who is suffering with gastroparesis, and I say 'suffering' for a good reason. Gastroparesis is 'a chronic disorder of gastric motility that is characterized by delayed emptying of either solids or liquids from the stomach in the absence of any mechanical obstruction.'

Food is normally chewed and mixed with saliva to form the bolus that you swallow. The bolus passes down the oesophagus into the stomach, where it is mechanically, chemically and enzymatically digested to form chyme: an acidic slurry of food, fluid and enzymes. The pyloric sphincter at the bottom of the stomach is prompted to release chyme from the stomach into the small intestine in small bursts, where the acid is neutralized and further digestion takes place by enzymes released from the intestinal wall and the pancreas. [The release of digestive enzymes into the intestine is the exocrine function of the pancreas, and is usually unaffected by diabetes, which is a disorder of the endocrine system.]

Food normally starts to leave the stomach within minutes of ingestion. After one hour 10% or more will have passed through to the small bowel, after two hours at least 40% should have gone, and four hours post-meal more than 90% of the meal should have left the stomach heading for the intestines. The final products of digestion are nutrients - fatty acids, amino acids, sugars, vitamins and minerals - that are absorbed through the wall of the gut into the body, and the indigestible fraction passes on through to be excreted as faeces.

The symptoms of gastroparesis include nausea, reflux, bloating, early satiety and post-prandial fullness, abdominal discomfort and pain. Putting a camera down into and beyond the stomach, which is usually the first line of investigation in most disorders of the gastrointestinal tract, is done to see if there's mechanical obstruction (from a tumour, for example), and in the patient that I saw, showed the remains of a meal that had been eaten the day before.

So the symptoms of gastroparesis simply arise because the stomach is not emptying - the pyloric sphincter is not being prompted appropriately to allow the chyme through to the small bowel. The next diagnostic test might be to follow a radioactive meal through the GI tract. Using this technique, delayed gastric emptying has been found in 25-55% of people with Type 1 diabetes, and in 30% of people with Type 2 diabetes.

Hyperglycaemia, or high blood glucose, is pretty toxic to the smallest blood vessels in the body, found in the retina and the kidneys, and also damages nerves. Often the nerves that are damaged are the smallest ones furthest from the brain, which is why foot care is so important. For some very unlucky people, the nerve that is affected is the vagus nerve, which transmits the signals that manage the extremely complex processes going on in the intestinal tract. But it turns out that hyperglycaemia affecting the vagus nerve is not usually the culprit in diabetes, but more often it is due to destruction of the pacemaker cells ('cells of Cajal') that link the vagus nerve with the smooth muscle of the stomach, and the result is the absence of peristalsis and atrophy of gastric smooth muscle.

Let's look next at what happens to the food once it has been digested, and glucose from carbohydrate in food has been transferred from the gut to the bloodstream. Insulin is secreted from the pancreas in order to allow the glucose to enter cells of the body where it is used for energy. In someone without diabetes, the pancreas simply responds to the level of glucose in the blood: lots of glucose leads to lots of insulin, little glucose means little insulin. It's automatic, and maintains tight control of blood glucose levels very effectively, to prevent those toxic effects of hyperglycaemia (or the unpleasant and potentially dangerous effects of hypoglycaemia, low blood sugar).

Now, we'll throw Type 1 Diabetes into the mix. Insulin secretion by the pancreas is non-existent, so the diabetic patient has to supply the insulin by injection. Usually it takes about the same time for glucose to reach the bloodstream from digested food as it takes for rapid-acting insulin to reach the bloodstream from the injection site. This type of insulin is effective over about 4 to 6 hours, which is about the time it usually takes for the whole meal to leave the stomach, be digested, and all the glucose to be delivered to the bloodstream.

With gastroparesis, there is a delay. Some glucose may turn up in the bloodstream straight away, but there is no way of knowing how much, or how long it will take for the whole lot to come through, and at what rate. So you can calculate the insulin that is needed to match the carbohydrate in the meal, but if you inject it all at once, it will arrive in the bloodstream before the glucose, and your blood glucose level will drop. The way to deal with low blood glucose from too much insulin is to consume some sugary carbohydrate that should be quickly digested, but - will it reach the bloodstream in time, given that the pyloric sphincter is mostly stuck shut? Later, when the rest of the carbohydrate from the meal finally gets through to the bloodstream, the insulin will no longer be there to deal with it, and your blood glucose level will rise. And there is no reliable way to predict how long this will take. The insulin and blood glucose graphs look like roller coasters.

Meanwhile, you feel uncomfortably full all the time and find it difficult to eat even a small amount of food. Eating is no longer pleasurable, you're losing weight, your family are initially sympathetic but you keep vomiting after a trivial amount of food, your breath smells terrible and with the constipation alternating with diarrhoea, the bathroom is never free. The diabetes team give the impression that your terrible glycaemic control is because of something you're doing wrong with the carb counting or insulin dosage, but you're doing everything you can think of to try and avoid high or low blood sugar, it's just that nothing's working. The high and low blood sugars make you feel awful too. Depression is a well-documented side effect of diabetes, and if you have gastroparesis too, well, there aren't many happy days.

Although part 1 ends on a low note, part 2 should provide some reassurance that treatments are available and can help.

Presents and a prize

Rented bicycle in Berlin, March 2013

It's been present-tastic at Lola Towers, partly due to my birthday and Mr A's birthday being less than a week apart, and partly because I've won another blog prize - this time, a box full of gluten-free snacks from Veronica's Snacks via The Happy Coeliac blog, and a tote bag to carry my snacks in. All I had to do was to suggest a new flavour for their crisps.

It's been a while since I gave you a social update, so in brief:

• Mr A and I have done a lot of 'gardening', which consists of pruning, hacking, bagging and dumping vast amounts of shrubbery, and in Mr A's case, sawing down and then digging out the roots of our sadly deceased ceanothus.
• We have had another posh dinner at Queans to celebrate our birthdays.
• I have had ongoing car trouble involving the brakes, ever since the service in March. The car has done over 180,000 miles and (apart from the brakes) is still in perfect working order, but will unfortunately need further attention from the garage. They are being very reasonable about it, acknowledging the fault and trying to remedy it without charge, but so far without success.
• I have a new Nexus 7 tablet, which I am still getting used to. Unfortunately, it is not quite as good as a laptop for Facebook and blogging (which is mostly what I do), and complains that it isn't compatible with BBC iPlayer or the Carbs & Cals app. It does run Skype, which my laptop has stopped doing, so that's one benefit I suppose, but I'm hoping to mend my laptop as soon as I find the MS Office CD.
• I have been out for pizza twice with work colleagues - once with the new lot and once with the ones from my previous job. I like the old lot better, and there may be a Diabetes job advertised there soon, but it is likely to be part time and temporary, and therefore not as good as the job I have now.
• I tried to do some homework on my case study, but my housemates came home and turned on the TV. My room is too small to work effectively, and at work they won't allow wireless access for personal laptops. I have put in a request for an update to the browser on the office PC, because at the moment the technology they're using is so rubbish that I can't use it properly for academic research.
• I have been cycling to work a bit, which has been a great deal easier since Dr Bike adjusted my saddle. The Trust is very supportive of cycling, and will fund half an hour for free basic servicing with Dr Bike up to once a month for staff. I also have a locker in a changing room with showers and free use of towels.

There will probably be more cycling news soon, because I have taken some photos of my route to work on a sunny day this week. I can also announce that, for the first time, I managed to cycle all the way up the steep hill to my weekday lodging. My legs subsequently turned to jelly and I felt sick, but I'm hoping it will get easier!

Prizes!

What I've been reading

Regency Buck
by Georgette Heyer

narrated by June Barrie

"It is in regrettable circumstances that beautiful Judith Taverner and her brother Peregrine first meet Julian St John Audley. The man, they both agree, is an insufferably arrogant dandy. But unfortunately for them, he's also the Fifth Earl of Worth, a friend of the Regent, and their legal guardian."

I thought (until I looked it up) that the narrator was the actress who plays Peggy Woolley in The Archers, but it turns out she isn't. She was very good, anyway, and the story was fine, but somehow it didn't meet my expectations. Of course there was the obligatory happy ending, but it didn't have the usual spark; I didn't find the characters completely believable, except for the gormless Peregrine, who was nicely done.

The Lady Most Likely
by Julia Quinn, Eloisa James and Connie Brockway

"Hugh Dunne, the Earl of Briarly, needs a wife, so his sister hands him a list of delectable damsels and promises to invite them — and a few other gentlemen — to her country house for what is sure to be the event of the season."

Number nine of my twelve books of Christmas. It looks as though it will take me nearly the whole year to read them all, because after each one I need a few books of quality in order recover my composure. This one is among the better ones, and interesting when read in such close proximity to Georgette Heyer; they have a lot in common, set in the Regency period and including a modicum of laugh-out-loud humour. But in this one the characters are two-dimensional, the story is predictable, and the innovation of having three interconnected stories is not enough to counteract the overall inevitability of the plot. [And there's too much sex in it.]

Through the Looking Glass (and What Alice Found There)
by Lewis Carroll

narrated by B. J. Harrison

"In this sequel to Alice's Adventures in Wonderland, Alice once again finds herself in a bizarre and nonsensical place when she passes through a mirror and enters a looking-glass world where nothing is quite as it seems."

A long time since I last read this, and I can still remember some of the poems. When I was young I never saw the point of learning poems by heart, but it is a comfortable feeling to recite well-remembered rhythms, a bit like being able to remember the words of a song. It is a short book, and makes for quite a different experience when read with an adult's perspective. When I read it as a child it seemed longer and more confusing.

Incognito
by David Eagleman

"Why is a person whose name begins with J more likely to marry another person whose name begins with J? Why is it so difficult to keep a secret? And how is it possible to get angry at yourself: who, exactly, is mad at whom? A thrilling subsurface exploration of the mind and all its contradictions."

I like books about the brain, and this one is pretty good. It particularly highlights the issue of free will - do we really choose our own path? If someone who has suffered a brain injury experiences a personality change and commits a crime that is incompatible with their former personality, what should be taken into account when sentencing? It really is a grey area, and chimes with a lot of the work I do in weight management. Is an obese person responsible for their condition any more than someone suffering from depression? The physiological state of the brain seems to dictate behaviour a great deal more than our puny efforts to control it.

Behaviour change

National Botanic Garden of Wales, May 2013

I was definitely going to do some homework this evening. I brought home the folder of notes which I had been accumulating during the taught sessions of my Masters module, and brought the computer down to the dining table to make it easier to type (my bedroom doesn't have space for a chair as well as a bed, table and chest of drawers). I did the washing up, some laundry, had supper, spoke to Mr A, and then prepared to do some work.

The only thing missing was the actual case study - up to now I've been working on it at the hospital, and hadn't emailed myself a copy. Taking it back and forth on a memory stick is complicated due to NHS file security policies - they make it very difficult to take data out, so that we can't easily compromise patient confidentiality. So, no homework, and I'm blogging instead.

I didn't have a clinic today, so I went back to those carbohydrate reference tables again. It feels as though I have been working on this project forever, and in fact it has been an enormous amount of work. My colleagues came up with some suggestions and comments after I presented the first draft, and true to the adage, the last 20% has taken as much time and effort as the first 80%. It's nearly done now, and the time will soon come to compromise on perfection and go ahead with some flaws still present. For example, I would have to hold back for a few more months to get any decent carbohydrate figures for Christmas pudding.

I continue to have too few patients. I am starting to worry that unless I can fill my clinics, any extension to my contract will be at risk. Part of the problem seems to be that I keep discharging patients rather than offering them follow-up appointments. Having discussed a patient's lack of motivation to lose weight, for example, it serves no purpose to keep making them come to the hospital to have another discussion about how they haven't lost weight again. I may be repeating myself by saying that losing weight is one of the most difficult things in the world for most people to achieve, and you've got to want to do it to have any hope of succeeding.

There are a number of techniques that can be used in the complex world of behaviour change. Obviously active listening and open questioning are important to establish the topic to focus on - never assume that what's in the notes or the referrer's letter or even what you talked about last time will be what needs to be discussed this time. Circumstances change, things happen, and people move on. Last time the patient was 100% in favour of increasing the amount of exercise they wanted to do, this time they are worried about gallstones. Also important at this stage are empathy and taking care to withhold judgement.

Having established the topic, what does the patient want to do? What is the actual aim we are working towards? If it's a change towards 'healthy eating', how will we know when we have succeeded? What amount of weight loss in what period of time will bring about significant health benefit? It helps to describe the objective as fully as possible.

Then it's always worth exploring how realistic the aim is, often by questioning the importance it has to the patient, and their confidence in achieving it. At the most basic, you can use the Lickert scale, which is just a scale of 1 to 10. Anything less than 7 suggests ambivalence and is worth exploring further, and the whole thing can come apart when you really examine some of the practicalities of changing diet or lifestyle. Eating is really fundamental to who we are and how we fit into our families and wider society, and change isn't usually easy.

When it comes down to it, behaviour change is about breaking habits that aren't helpful, and developing and embedding more useful habits. Giving up smoking provides some obvious parallels - if someone always smokes with their afternoon cup of tea, then it will be important to discuss how to manage the feelings that will inevitably arise when having a cup of tea but denying oneself the cigarette. Replace 'cigarette' with 'biscuit' and there really is no difference. Setting a goal of cutting out biscuits while ignoring a lifetime of food-based habits is a recipe for failure.

We can ask questions about how a patient would feel if they achieved their objective, and what the first step will be towards that goal. What are the barriers that will interfere with success? How can they be anticipated, and overcome? Some of the barriers can be brought to light using an 'ambivalence grid', on which we record the positive and negative aspects of making a change, but also the positive and negative aspects of not making the change. It can be illuminating to examine how life would be worse if the patient lost weight (those of us who dislike shopping for clothes are well aware of one of the pitfalls). If the patient thinks that cutting out biscuits will lead to them taking up smoking again, then perhaps they should set a different goal.

These skills and techniques are among those used in Motivational Interviewing, Cognitive Behavioural Therapy, and addressing the Cycle of Change. The trouble is that I can't remember the theory or evidence base for any of these high-falutin' psychological theories, and I feel that for best practice I should know why I'm doing something as well as how best to do it. But for the moment I'm doing my best, and reflecting afterwards on whether I could have done things better, or differently, and that's how I hope to improve my practice. As well as doing my homework. Tomorrow.

Ante-natal clinics

Dorset, July 2013

Time passes and there is always something blogworthy going on. This week it has mostly been pregnant women - my team leader is on holiday, and my colleague RSB is facilitating a week's worth of patient empowerment (calling it 'structured education' doesn't do justice to the cult that is DAFNE - Dosing Adjustment For Normal Eating. More about that another time perhaps). So it fell to me this week to support the multi-disciplinary ante-natal clinics in both hospitals within the NHS Trust where I work. I have had my fill of pregnant women this week, what with the Royal obsession to add to the mix.

In each hospital, the ante-natal diabetes multi-disciplinary team (MDT) is allocated a room that is much too small, and the poor patients are channelled through various procedures - scans, samples, tests - before they start the proper waiting. When a clinic room is free, a patient occupies it, and various members of the team visit them until everyone who needs to see them has done so and the patients moves on to wherever else they may have to go, freeing up the room for the next victim. The team office, waiting rooms and clinic rooms are all much too hot - the radiator in one of the team offices was actually pumping out heat, with no means of switching it off on the hottest day in 30 years.

In the hospital where I normally work, the ante-natal department has just been remodelled, and the team office has been created from a room that used to be a cupboard, without any ventilation at all and with a very unpleasant lingering smell. The room is long and thin, with space for about six people all standing in a line (there is no room for a chair except at the far end where there is a computer). The MDT consists of obstetrics and gynaecology doctors, diabetes doctors, Diabetes Specialist Midwives, Nurses and Dietitians, a Healthcare Assistant and various students within all these specialities. In other words, more than six people. The other hospital has a team office that is a more convenient shape, but with little more space - except it does have a window, which even opens.

I am very new to the ante-natal clinic, having observed a couple of times and taken part just once or twice. I don't know much about what goes on during a pregnancy, what tests or scans are required and when, and I don't really understand how the patient journey is conducted, either in general throughout a pregnancy, or on a specific clinic visit. The patients' files are filled with impenetrable graphs and printouts filed in seemingly random order, and there may be several pregnancies-worth of notes in a file. I noticed that there were a couple of heavy duty electric torches in the team office, the sort that you take out of the boot of the car on a snowy night to find out what the noise in the back garden is. I was going to enquire what they were for, but then thought about what sort of clinic this was, and decided against it.

I'm not sure how the different teams operating in the ante-natal clinic fit together - reception staff, then nurses and midwives managing the routine tests, then the fetal scanning team, and then our team at the end of the line. What I do know is that in the two days of ante-natal clinics I saw more patients than in my last two weeks of clinics put together - something like 22 of them - and most of them had to wait longer than in any other of my clinics, more than an hour in some cases. The majority have Gestational Diabetes, but there were a few with Type 1 and Type 2 Diabetes. It was tiring but satisfying to be occupied so intensely, rather than sitting in a general clinic room wondering how long to wait before assuming that the scheduled patient is definitely not coming.

There are some who need interpreters - Turkish and Arabic on this occasion - and I find this quite interesting, especially Arabic. Combining my knowledge of Hebrew with my recent study session on Ramadan, I was entertaining myself by trying to anticipate some of the words used. It turns out that words for 'onion' and 'carrot' are very similar in Hebrew and Arabic, but the Arabic for 'meat' sounds like the Hebrew for 'bread'. I had met the Arabic interpreter before. She told me that she teaches Arabic at evening classes at a nearby school, and I am tempted to sign up (if my employment contract is extended).

Four more Gestational Diabetes patients are booked in for Friday afternoon, my least favourite time of the week by a long way. Two patients are booked at 1.30 p.m., who are seen by myself and a Diabetes Specialist Midwife (we swap after half an hour), and two more arrive at 2.30 p.m. In theory we are all done and dusted by 3.30 p.m., enabling me to go home at my scheduled time of 4 p.m. In practice, I'm lucky to be out of there by 4.30 p.m., and often it is later. This is on a Friday afternoon, remember, and I then have to set off down the motorway for the journey home. We are all agreed that this is unsatisfactory, but so far there has been no alternative proposal for various legitimate reasons including a key member of staff being away, and lack of clinic space and time.

I will be taking over the Dietitian role in one of the two ante-natal clinic on a regular basis starting in September, so will be making more of an effort to understand how things are done and how I fit into the team. If we can streamline the workflow a little better, it will not only improve the patient experience, but ours too.

Not giving advice

Budapest, October 2012

Another post is due. What to write? Work or play? Diabetes or something else?

The weather has been hot. I thought that my extra hours spent not travelling would result in lots of blog time, but today I simply overheated. The offices where I work in the hospital are not cooled, and in fact appear to be heated, since they have become hotter with every successive day of high temperatures. Luckily I have spent quite a lot of time in the clinic where patients are seen, which is air conditioned and a reasonable temperature. But although I now have my bicycle available for the commute, yesterday I had to go by car, and at the end of the day it was almost unbearably hot.

The cycle ride is pleasant and just about the right distance. There are hills but they are not too steep, there is a lake if I want to ride alongside it, and there is a stiff climb on the last leg of the way home which I cannot yet complete without dismounting - I look forward to improving my stamina. There is secure bicycle storage at the hospital, but until the cycling support officer returns, there is no locker or shower for me. And I returned to the badminton club for a second innings, which was also very hot, but enjoyable. I consumed 1.5 litres of fluid during the two hours of play.

There seems to be more to write about in the work domain, although as ever, the patients will have to remain absent from these essays. I have, however, attended half a day of training in the concept of the 'Year of Care' (with another two half-days to come). This is an approach to management of chronic disease, specifically diabetes, but applicable to most ongoing conditions. It suggests that, rather than the traditional paternal approach where the doctor manages the patient and decides what the treatment should be, more responsibility (and therefore control) should be given to the patient. After all, it is the patient who has to live with the condition day in, day out, so it makes sense that the patient should decide how the condition should be treated.

Obviously, many patients are not initially equipped to self-manage. Asking a patient "What do you think should be done next?" is pointless unless they have useful and accurate knowledge and information about their disease, any test results, the various treatment options and their consequences, and the ability to draw this information together and make a decision. But someone who has lived with diabetes (or coeliac disease, or arthritis) for many years, sometimes longer than the healthcare professional 'advising' them has been alive, is in a better position to decide what their priorities are, and which consequences of managing their condition they are prepared to put up with.

For example, one of the main markers of good blood sugar control is a biochemical test for a blood component called "HbA1c". The higher this result, the more glucose has been circulating in the bloodstream over the past 10 to 12 weeks. This generally means that blood sugar has been higher than the optimal levels for more than half of that time, and this is generally Not A Good Thing. However, there are other factors that indicate risk of future complications: blood pressure, blood lipids (like triglycerides and cholesterol), blood markers of liver and kidney function, and weight/waist circumference/Body Mass Index.

The principle of the 'Year of Care' approach is to a) provide this type of data to the patient about a week before the consultation, which demands an additional session where the data is collected/blood drawn etc (this may take place at the GP surgery rather than the hospital), b) explain or otherwise ensure that the patient understands what the results mean and the options they may have for addressing results that are sub-optimal, c) encourage the patient to express his or her own views about what the 'Care Plan' should consist of, where the Care Plan is a set of well-defined aims and objectives, and d) document the Care Plan in the medical records and for the patient to take away.

It's all very logical and sensible; I'm not sure why we need a day and a half to be taught about it. Anyway, the main things I took from the first half-day of the training were as a result of being shown a short video of a consultation conducted in the 'Year of Care' approved manner. It reminded me of how a good consultation can be done, and how easy it is to slip into bad habits. I resolved to try to address one particular habit of mine that is extremely hard to break - giving advice.

You would think that one of the key aspects of a consultation between a Dietitian and a patient would be that the patient would seek advice and the Dietitian would provide it. In fact, this is often a very unhelpful and frustrating mode of operation - imagine a patient is overweight, and comes to see the Dietitian. They talk about diet, lifestyle, activity, concomitant disease, and anything else that is relevant. "What should I do?" asks the patient. The Dietitian, who can see clearly where the problem lies, is happy to provide the answer, whether it is "Cut down on alcohol" or "Reduce portion sizes" or "Eat two slices of toast for breakfast instead of three" or whatever. The sad truth is that for a very few people this might help, but for most, it won't.

The more effective approach is to operate in a 'Year of Care' mode. The patient knows their weight/waist circumference/BMI, but may not be aware of what the specific implications are for future health, what targets for weight loss may be appropriate, how weight loss might be achieved. They will know what they have tried in the past, what has worked and what hasn't, what sort of person they are, what their immediate family and social circle is like, what barriers they face, and a hundred reasons why your advice will not work. They will also know how they are most likely to succeed, and I, as the Dietitian, do not. So my job is to turn the question round, and find out from the patient what they think will work best.

This is better in so many ways. It allows the patient to take control of what is, after all, something they will have to live with 24 hours a day. There is no doubt that for some people, being given the responsibility for deciding their own priorities is burdensome, because it is difficult to decide how to make changes that are usually unwelcome. But it also removes the option of saying "The Dietitian told me to do this, and it didn't work - it's not my fault." It also allows for the possibility of taking no action at all, which is the right choice in some circumstances. If your father has dementia and your boss is off sick and your child has just been arrested for petty theft, then trying to eat more vegetables is not going to feature on your list of priorities.

Most importantly, it reminds me that I do not have the ability to fix things, and neither is it my job to make it all better. It is my job to give the patient my undivided attention, to try and understand their situation, to provide appropriate information at the right time, and to support the patient in making the choices that are the right ones for them, and setting objectives that are specific, measurable, achievable, realistic and timed. Whoever came up with that 'SMART' acronym produced a really useful objective-setting tool.

Since the training I have seen a few patients, and have tried to remember to hold back from giving advice. It is incredibly hard, but it really worked well in at least one case, where I doubt that any other approach would have been any use at all.

Cutting out the commute

Berlin, March 2013

There's been change at Lola Towers, in as much as I'm not at Lola Towers at the moment. I have found a room in a shared house which is just three miles from work, and I'm staying here for four nights a week, travelling up on Monday morning and back on Friday afternoon.

The quest for accommodation was not without its difficulties. Rather than traditional letting agents or small ads, I used the Interwebnets option. Landlords upload vacancies, potential tenants get in touch electronically, details are confirmed, viewings take place, negotiations follow and an agreement either emerges or it doesn't. I went through the cycle just twice - I was being fairly selective, and there are a lot of shared student houses in this city with two large universities very near to the hospital where I work. I didn't want to find myself in a house sharing with teenage students who are getting up just when I'm going to bed.

On Sunday I moved into a small single room in a house shared with two young professionals who seem to spend the majority of their spare time watching TV together. I am not a natural TV watcher, although for the sake of sociability I did join them on Sunday night for one awful hour of a British magician accosting holidaymakers in Las Vegas and foisting his magic tricks on them. I don't deny that the magic tricks were good, but while I watched I had the feeling of my life trickling down some plughole. The sociability was confined to commenting on the programme - we haven't yet had a proper conversation beyond "How was your day?" - and after a while I fired up the laptop and confined my attention to my online life. It's not so much more constructive than TV, but makes me feel more like an active participant in life.

The commute time to work by car is about 20 minutes - 15 minutes on one short stretch of road between the house and the first roundabout, and about 5 minutes for the rest of the journey. You will deduce that this equates to an average of 9 miles per hour, which is not much of a rate. My plan is to resuscitate my bicycle, which has been languishing at home, and is probably in a state of decay. The hospital has a very well-publicised 'Health and Wellbeing' team including a great deal of support for cycling, so I fired off an email to enquire about cycle storage and showering options. The response was that the person responsible is on holiday until 22 July, so I'd have to cycle quite slowly until then.

I have already been in touch with three different individuals regarding playing badminton, of whom just one replied. I went along to their club on Monday, and it was busy and very hot, but friendly and a similar standard to my usual clubs, whom I have now abandoned with some sadness. During the summer they play only once a week, but starting in September it should be twice a week, which is what I'm looking for. As I want to exercise twice a week (and spend as much time out of the house as possible), I'm trying to think of alternatives for another night of the week.

The cost of the accommodation including bills is about the same as the fuel I was using to commute, and other expenses will remain about the same, so I don't expect to be worse off financially than I was before. Of course there is weekday separation from Mr A, but we have methods of communication, and I gain sleep undisturbed by snoring while he gains life undisturbed by nagging. We'll see how it works out, and in the meantime my Team Leader has mentioned that discussions will soon take place over whether my contract will be extended or not.

Mr M and his insulin pumps

mylife OmniPod insulin pump wireless controller and Animas insulin pump with tubing

I mentioned a while ago that I had commissioned a guest post from Mr M, who has a new insulin pump. He has come up with the goods - a blog post comparing and contrasting his old and his new pumps, as well as providing some insight into the world of insulin pumping.

Hello ... Mr M here with my first contribution to the wonderful world of Lola Life.

Regular readers may already know that I have Type 1 diabetes and use an insulin pump. As I have changed insulin pumps recently Lola I asked me to write something about the two pumps.

My old pump (affectionately named Stanley by the lovely Lola II) was an Animas 20 20 pump which clipped on my belt [pictured at the top of the post on the right] and had tubing leading through my clothing to a patch [containing the cannula that delivers the insulin] on my waist or leg. I have had Stan for four years, and has had to been sent back to his parents three times – once because of the buttons sticking, and twice through water leakage.

Stan has been upgraded to Whitney (aka New Stan) who is a mylife OmniPod. Whitney came in a huge box and I wondered if I had been given a toaster. But no, it was my new pump.

New OmniPod pump patch

The new pump has two parts: the pump control unit, which is about the size of a smart phone – though four times as thick [pictured at the top of the post on the left] – plus a matchbox size patch which sticks to my leg, arm or stomach and contains the pumping mechanism and insulin [and the cannula that delivers the insulin]. The two are linked through a wifi system.

Stanley swinging back and forth

Now I had become quite attached to the old pump and not just literally. The most annoying feature though was that the small patch - about the size of a 2 pence piece – often came unattached, either because it didn’t stick down properly, or, more often, because the cord got caught when taking my trousers off. This happened frequently enough for me to have two patches attached at all times so I could switch to the emergency one if the first came off.

Old Animas pump patch

So… when I was offered an upgrade at the end of my four years, I decided to go for the wireless option (or rather, the tube-less option).

New Stan has the obvious advantage that being a wifi option, the tube tangle problem doesn’t come into play. After a month or using it, none of the patches have even come near to falling off. This may be because there is a large sticking area, or because the pump tells you every three days to change it, even if there are a few days of insulin left. (Stan used to just tell you when the insulin was going to run out). This does feel like the manufacturers trying to get you to use more patches than you need to.

Apart from the obvious wifi (or tufi?) advantage, pluses of the OmniPod over the Animas is that the basal programmes can be copied into a new programme so you can tweak it. For those who haven’t had advice or training in diabetes, a basal programme is the schedule of how much background insulin to give at which times, and on the Animas, you had to write all the times and figures down, then re-enter them into a new schedule which could take 20 minutes to do, with the potential of entering something incorrectly.

Another big advantage is that it is combined with a blood glucose meter – and as you get the pump control unit out each time you eat, there is more tendency to also test your blood than you would if you had to find your blood meter. There are also some fancy graphs on it so you can see your blood sugar results, and useful carb intake lists etc. There is also the advantage that my hospital can download my results – though this does of course assume you want them to know the actual results!

However, it is not all positives. There are some possible serious quirks. One is that if you are about to eat, and test your blood sugar – if it comes out low, the pump won’t calculate how much insulin you need for your carbohydrate intake – so you have to either guess, or remember to take some insulin 5 minutes later when the test result has cleared.

[Ed's note: 'guessing' is how people with diabetes who don't have a 'bolus advisor' estimate how much insulin they should take!]

The Omni Pod also doesn’t tell you how it calculates the insulin it suggests you need, but just the end figure. This is different from the Animas which would tell you that you needed X for the carbohydrates, and that it was taking off/adding Y for the blood sugar adjustment, and then would take off what insulin it had given you recently (as this will take some time to act). The reason this is useful is if you have just started a meal and given yourself insulin, then test yourself and find you are high, both pumps think “I have just given you insulin” so suggest you don’t have any more – however, if the food hasn’t actually been eaten yet, you may want to ignore the deduction for “insulin just given” as you want to have some more for the high blood sugar, and the insulin can deal with the food which is about to be eaten. 

On a lighter side (or maybe darker), the screen time out is only a maximum of 60 seconds and so it is impossible to change the pump patch without it timing out a few times – not a major issue but annoying especially as it would be an easy thing for the manufacturers to fix.

Finally, there is a negative side to the wifi facility. One of the selling points of wifi is that you don’t have to carry it around – but the same logic also means that as it isn’t attached to you, you can leave it behind without realising it. This doesn’t cause any changes to the background delivered, but means you can’t eat any carbs. I asked the rep about clips and bags to carry the unit (the Animas had a clip which made it look like a pager); the rep said it didn’t need to be carried so they didn’t do one. This sounded like an oversight and given the size and weight – is a problem for men in the summer as we don’t tend to have coats or handbags to carry things in.

In short, I think the wifi device is a better option, but Omni Pod could make a few software changes to improve it, and provide a clip or bag to attach it to your belt. However, the Animas device has a better designed piece of software and also makes you look important as you have a pager, while the Omni Pod makes it look like you are always on your mobile texting!

Thank you, Mr M! And a small prize* to anyone who can come up with the explanation of the new pump's name. All the clues are there for you in the text!

* not really

Solitary Holiday reprised

Groombridge Place, June 2013

I've come back to Royal Tunbridge Wells for my second annual Solitary Holiday, because I enjoyed it so much the first time (except for the lack of hot water, but I was refunded handsomely for that). The apartment is the same: comfortable, with an inexplicable lack of certain kitchen implements (slotted spoon? not essential I know, but a pity not to have one). I brought my own sieve this time.

I dropped in at the Falconry Centre on the way down, and arrived in the evening so took the opportunity to have the first sushi of the holiday, at the restaurant that I had so enjoyed last time. After a long morning in bed planning my schedule on Day 1, I started on the dress I'd promised to make for Lola II.

It's been a long time since I did any dressmaking, and I'm planning a separate blog on the progress of that particular project, so suffice it to say that I didn't finish the thing in a week, especially as I wanted to do some other stuff as well.

I had plans for day 2 in London - going to the Pompeii/Herculaneum exhibition at the British Museum, meeting mum and dad, and then meeting some other friends. It was a good day, but a long one. Day 3 was more relaxed - more dressmaking, then a stroll into town to do some shopping for household items. I don't enjoy shopping in normal weekends when there never seems to be much time and the shops are all crowded. There will be more shopping needed, but I got a whole lot done.

Another unplanned bonus of the week is that it's the first week of Wimbledon, so I've been watching a bit of tennis here and there, and listening to some of my podcasts and audio books. I thought I'd have lots of opportunities for listening while dressmaking, but unfortunately I can't do it - either I miss bits of the story or tennis match or I make mistakes with the sewing.

I saw a film and then wandered about some more in town - I think there are more charity shops here than in Leamington Spa, which is really saying something. I didn't even get the opportunity to see them all, because I found suitable work trousers in the second one I went to. Ate more sushi, had a bath, researched a new feed reader because of the demise of Google Reader - at the moment I'm thinking of using Feedly (I also tried The Old Reader and Feedreader). Watched more tennis.

I did as much of Lola II's dress as possible without putting her inside it to check the measurements, and had a whole day left to play with. So I did a bit of research, and went to Groombridge Place, which contains quite lovely gardens (featured in the film 'The Draughtsman's Contract') as well as a forested area with stuff in it. And various animals, and (the clincher) a birds of prey centre. It was a good choice for the day with a great deal to see and a decent amount of walking, which I enjoyed. And because it was warm but mostly raining, the only other visitors were a busload of holidaying Germans who didn't get in my way at all, and a class of maybe 10-year-old schoolchildren with their teachers, who I could hear a mile off, so could easily avoid.

Walking in the woods in silence was wonderful, as was my decision to have a go on one of the swings. I walked past them first of all, and then stopped to reconsider. If there had been children about, then clearly I would have left them to it, but there was nobody about at all, and these were interesting swings. The ropes were about fifty feet long up to a tree branch, and I wondered what that would be like. And I'm so glad I did, because it was amazing. Obviously the arc was much longer than your standard playground variety, but the slope of the land and the weight of the ropes and swing (and me) meant that I was propelled so much further and higher than I was expecting, high over the wet forest floor, slowly and (almost) silently, with nobody about. It was a wholly unexpectedly wonderful experience.

Apart from the swings there were other attractions set up in the forest, which would have appealed enormously to a) hippies (standing stone, mystic pool, some rubbish about treefolk) and b) children (things to climb on, unexpected pens containing animals - rabbits, rheas, some kind of goat, wild pigs and a zedonk called Adam who is a cross between a zebra and a donkey). For the likes of me there were peacocks, deer, tree ferns, pools with irises and with gunnera (my personal favourite of the giant plants), wooden sculptures, and I somehow got stuck on a raised boardwalk going the wrong way along a kind of assault course designed for children, such that I had a child-size doorway to get through or go back over a wobbling set of suspended logs.

The falconry displays were a washout because of the rain. There were some birds sitting in the weathering looking a bit forlorn, but there was a Jackal Buzzard which they don't have at the Cotswold centre, and which managed to fly along with a Harris Hawk before the rain came down. I didn't much like the way the 'script' was delivered to the audience (although the other four people in the audience were charmed). They also had a nice display of falconry equipment with useful descriptions, but containing terrible apostrophe abuse.

So that was the last event of Solitary Holiday #2. I'm thinking that this will definitely be an annual event, and it's possible that I might even return to Royal Tunbridge Wells for a third visit next year!