Being a Helpful Patient

There is certain information that your doctors will always need to know. This can be as simple as your name and address and your PCP's details to more detailed information about your past medical history and the medications that you take.

I have a big medical folder of my own records (known as The Big Red Folder). This is split into sections for letters from specialists, test results, relevant publications and articles, diet sheets, exercise sheets from physio, and all sorts of other useful things. Most of the time this folder lives at home with me. It contains the charts that I showed you last week that I use to keep track of my symptoms and the medications that I take.

I am so grateful that I started compiling my medical paperwork in this way, and have learned lessons from other people with complex medical conditions. One of these lessons is to take time every 6-12 months to write to my doctors and request copies of important test results. It can be so helpful to have an MRI report and the scan itself on CD to show a new doctor, rather than having to take my word for what it showed, or waste time for them to request the results from another specialist. I have so many doctors and other health professionals working with me that it can be really hard to keep track of all the tests and all the results. I am the only person who knows about every test and every appointment, so I feel a sense of responsibility to keep good records.

Right at the front of my Big Red Folder is a section of essential information. This is an 'executive summary' that covers all the most important points in my medical history. I have been asked so often by doctors in the ER if they can borrow/photocopy this executive summary that I now carry spare copies in the folder.

So where to start? Well, think back to the last time you were in the ER. You may remember being asked the same questions over and over by the different people that looked after you. There are certain things that your doctors will always need to know.

My executive summary looks like this:

Page 1:

1. My name, address and date of birth
2. Next of kin details (name and contact number)
3. Details of my GP (name, address, telephone)
4. My height and weight (important for some drug calculations)
5. A list of my most important diagnoses - no details, just the name of the diagnosis

Page 2:

Important contact details:

Name, address and contact details for all the specialists that care for me, including my hospital number (patient reference number) for each hospital/clinic. This list includes bleep numbers and email addresses where relevant. For example, it has the bleep number of the Specialist Registrar on-call for asthma at the Royal Brompton Hospital, which is the specialist lung hospital where I'm treated. If I'm admitted to any other hospital, it can be helpful for them to get in touch with one of my specialists as a matter of urgency.


Page 3:

1. List of current medications and allergies

The allergies are in a highlighted box at the top of the page. On the other side of the page is a list of medications that are contraindicated for people with my conditions. Because I have rare and complex conditions, I would rather tell people the basics again and again than risk them make a mistake with my health because they didn't know.

The rest of the page is taken up with a list of my regular and 'as required' medications. For each medication I have given the generic name (unless it's important for absorption or allergy reasons that I take a particular brand), the dose, the route, the frequency and the reason that I take it.

Make sure to include any medications that you buy over the counter, supplements that you take, and your method of contraception, if appropriate.


Page 4:

Past Medical History:

Just a list of dates and important events. For the sake of brevity, I don't include all hospital admissions, just the things that seem most relevant to me - childhood illnesses, major diagnoses, surgeries.

Page 5:

Family History:

Try to restrict this to immediate family (siblings, parents, grandparents) unless there is an inherited condition that can be seen more clearly by including more family members. Even if you don't have inherited diseases in your family, it's worth noting the causes of death of close family members and the incidence of things like diabetes, cancer and heart/lung disease.

Social History:

This is just a bit about you: 

- Do you smoke (how much and for how many years)?

- Do you drink (what, how much, how often)?

- Do you take any illegal drugs? If so, what and how often?

- Do you live in a house/flat/castle? Are there stairs?

- Do you have pets/children/other dependents?

- Who looks after your care needs if you have any?

- Do you work? What do you do, how many hours do you work?

- Are you right or left handed?

That's about it for my executive summary. Of course, it's not rocket science, but it's amazing how things get forgotten in the heat of the moment. Having a printed, legible list to give to anyone treating you can relieve a lot of the pressure of acute illness (for you and your loved ones) and allow you to focus on getting the treatment you need to get better.

More on The Big Red Folder tomorrow!

That Fine Line

Those of us with chronic illnesses live with symptoms day in and day out. The severity of those symptoms may vary, and some of them may go away from time to time, but we never feel 'well' in the way that we would like.

In order to manage these daily symptoms, many of us have medications and treatments available to us that would usually require hospital admission: home oxygen, intravenous medications, nebulisers, strong medications. These are not cures, just ways of maintaining the status quo and allow us to stay at home with a reasonable quality of life.

Difficulties arise, however, when things deteriorate despite all the medications that we have in our 'chronic illness toolkit'.

How far should we allow things to deteriorate before we 'give in' and accept that we need extra help and support? How long do we wait for the 'rescue' medications that we have to kick in? It may be that the deterioration is gradual, and insidious, and it can seem hard to know the point in the downward trend at which we should seek advice. Worse still, we can get so caught up in just dealing with each moment as it comes that we stop looking at the bigger picture and asking how we are going to improve things.

These are difficult questions for anyone reluctant to 'bother' their doctor (or other health professional), but even more so for people with chronic illnesses. Often, our illnesses are rare, and may be complex. While the necessary treatment may be simple, getting it may be another matter.

Flare-ups often seem to happen at night or at the weekend, especially if it is a holiday weekend. This poses yet another question of whether we try to wait until we can get in touch with our own specialists, or whether we need help sooner than that. I feel as though I am treading a fine line whenever I am in the position of needing to make this decision.

Emergency Departments are not really set up to treat those of us with complex medical conditions. They are very good at what they do, which is to treat accidents and acute illness. It is unfair to expect them to be able to handle rare medical conditions.

Of course, the ideal is to be able to contact one's own specialist for advice and treatment. They are far better placed to be able to tweak routine treatment and instigate new therapies than any healthcare professional meeting you for the first time.

But what happens when you really can't get in touch with your own doctors?

Alternative communication methods:
Telephone and email can be excellent ways to get in touch with your doctors. Email, in particular, allows you to give all the relevant details, taking time to write carefully and accurately, without the panic of an emergency conversation. It also allows you and your doctor to have a written record of the enquiry and any advice given.

Having a written protocol in place for emergencies:
If your illness is of the type that might require emergency treatment, you could ask your doctor or nurse specialist to write a protocol for you to take to the Emergency Department with you. For example, if you are known to have a certain type of seizure that responds well to particular medications, this could all be put in writing, with a copy given to your local ED and another copy for you to carry around with you. In the UK, it's possible for patients to be 'flagged' with the local ambulance service, so that any paramedics called out are prepared with relevant information. MedicAlert tags and cards (and equivalent) also provide valuable information if you're not able to give details to those treating you.

Be prepared:
If you can, try to predict things that might go wrong. It's not unrealistic to think that someone with gastroparesis might have a bad flare in which they can't eat or drink, and so need IV hydration and anti-sickness medications (and possibly also gastric decompression and artificial nutrition).

The more difficult cases arise when those unpredictable flare-ups occur. Either unrelated illnesses that worsen the underlying condition, or new symptoms.

In this case, it is important to act as sensibly as possible. Get advice, either from your own healthcare providers or from someone who knows you well, rather than from an overworked out-of-hours or emergency physician, in the first instance.

If the answer is that you need medical intervention (or at least assessment), the next question is when? Can you wait until you are able to see your own doctor? Is there anything more that you can do at home to keep things as stable as possible while you wait?

If the answer to 'when?' is 'now', then you have to ask 'where?' -
1. Out of hours GP service
2. Walk-in (or minor injuries) unit
3. Emergency Department (perhaps by ambulance, if necessary)

So, what are you waiting for:
Do you need help?
When do you need help?
Where are you going to get this help?

And with that, I am going to take another dose of my rescue medications now in the hope that I can delay needing help from my own doctor until tomorrow, when she is next in clinic.

Wish me luck!

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Blaming Myself

Among other things, I have what is known as 'difficult asthma'. This means that my asthma is severe and persistent, despite maximal medical therapy. It is par for the course that things flare up and I run out of things that I can try at home. At this point, I either try to wait it out at home, in the hope that I can keep things stable enough and give my lungs time to get their act together, or I take myself off to my local hospital. The latter option usually wins, even if I try the waiting option for a bit first.

I take my medical care quite seriously, and am careful about taking my medications and avoiding allergens and things that trigger asthma attacks.

This is a good thing, as I'm sure it helps me to avoid unnecessary hospital admissions, and means that my doctors are happy to let me leave hospital that little bit earlier, as they know I'm capable of looking after myself.

I know that I'm a 'good patient', but there's always a nagging doubt that maybe I could be doing something differently. Something better.

Articles like this one (which was published in the American Journal of Respiratory and Critical Care Medicine) suggest that difficult asthma is often nothing more than a failure on the part of the patient to take their medications as prescribed.

While I agree that it's sensible to make sure that people are taking their medication before trying additional treatments with potentially serious side-effects, this view does make me feel inadequate, or even defensive. Most of the doctors that treat me are able to see that I am committed to my medical care, but there is the occasional one who treats me as though I know nothing about my treatments, and that I'm in hospital because I'm stupid. This view manifests itself in questions about my psychological wellbeing, whether I know about and take my medications, and questions about whether I smoke or inhale other inappropriate things. Peanuts and dust, for example. Or cocaine. Having patients admit to using hardcore illegal drugs makes this type of doctor very happy.

The sense of disappointment that I feel when it becomes clear that things are deteriorating despite my best efforts is hard to describe. I have such optimism when things go well, and feel so disheartened when they don't.

I think that today's lesson is that I have an illness that fluctuates. Part of the nature of difficult asthma is that it is hard to control, and I need to be forgiving of myself when, despite my best efforts, things deteriorate. However, the fact that it is an illness full of ups and downs does not give me an excuse not to try my hardest to control it. Yes, it's disheartening when I try hard and things go wrong, and I know that even when things go right it's as much due to luck as judgement, but every good day (even every good hour) is worth the effort, and I owe it to myself to give myself every opportunity to live life to the full.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Organising Medical Supplies: After

It's taken me the best part of a week, but I'm nearly there with the organisation of the medications, and here's how I did it:

One of the two drawers under my bed is now dedicated to medications and testing equipment (oxygen saturation monitor, peak flow meter, blood glucose testing equipment, thermometer, blood pressure monitor). The other drawer will, at some point, contain splints and braces. Crutches and canes are stored in a convenient gap between my wardrobe and the wall.

What I used for the medications:

1. Two canvas drawer liners with compartments (from Ikea)
2. Two clear plastic shallow boxes with dividers and lids (Ikea)
3. One clear plastic deep box with dividers and lid (Ikea)

The drawer is just deep enough to hold the two shallow boxes stacked on top of each other.

This is the bottom of the two boxes:

•  Batteries (for hearing aid, portable nebuliser, TENS machine)
• Tape
• Alcohol hand gel

The top shallow box is full of things that I might need in a hurry - it's so useful to be able to see into it, and know that because it's shallow, nothing important can fall to the bottom and get lost or pass its expiry date:

• Dissolvable anti-emetics (Zofran), mints, chewing gum, ginger candies,antacids
• Diclofenac (Voltarol) gel, Lorazepam, scar gel
• Epi-pen, antihistamines, hydrocortisone, glucose tablets

The deep plastic box is all about blood sugars. It contains my back-up glucose monitor, back-up finger stabber and spare lancets for both types of finger stabber. I love the multicoloured lancets, don't you? I just had to take them out of their cardboard package so that I can see them!

The drawer organisers have different medications in each. Most of my standard daily testing things fit into one compartment, which is useful. I've tried to keep similar medications near to each other, though it hasn't worked perfectly because of the size and shape of the dividers.

So there you have it - a fresh start to keeping my medications in order, which is so appropriate given that I am now trying to manage my chronic illnesses as though they are a full-time job, remember? What better way to start than to have everything in order?!

My next project is to get my medical records in order, including the charts that I've been using to keep track of my symptoms, vital signs and medication use. Oh, and I want to come up with a system to make sure that I know when my medications run out or expire so that I can order new ones at the right time. 

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Organising Medical Supplies: Before

I have had a problem for a while about how to store all my medical stuff.

Searching online, though it did reveal some beautiful and clever ideas, was never going to give me a solution for my particular problem. Most normal people just don't have this much medication! Actually, the problem is not just medication but equipment, braces and splints, mobility aids, etc. 

There are two drawers on casters underneath my side of the bed, which are currently used for the purpose of storing medical stuff. They are about the right size (approximately 2.5 ft x 2 ft each), but as you can see from the photographs, there's not much of a system, and I often have to rummage around to find things. When I'm putting my pharmacy deliveries away, I put things where there's space, rather than with other similar items. Likewise, if things are needed in a hurry, they are taken from the closest packet. That sounds perfectly reasonable until I remember that sometimes these packets get moved while I'm stirring the drawer looking for something else. Which means that another packet gets used the next time. So I have numerous part-used packets of various medications, making it almost impossible to know how much I have in total.

Yes, you're right - this drawer also contains microwave popcorn and knitting yarn

The problems:

• Volume: Up to a month's supply at a time of 19 different regular medications, plus 'as required' medications, equipment, splints and braces and medical records (all currently stored in different places around the house)
• Access: I need to be able to get to everything easily, sometimes in an emergency. If I need a rescue medication in the middle of the night, I need it quickly, and I don't want to have to put the light on or have to move lots of other things to get to what I need.
• Labeling: The system needs to be clear to me (obviously) but also to my husband if he needs to get something for me in a hurry, and to friends/paramedics/nurses/anyone else who might be looking after me.
• Usability: There needs to be some kind of system so that the older things are used first, and so that I can keep track of how much I have, and can request more supplies from my GP *before* stocks run perilously low
• Small things: syringes, bottle adaptors, nebuliser filters, gloves, dressings, etc. These tend to 'float' around the drawer or sink to the bottom, never to be seen again.
• I need to keep a bottle of water, straws, a cup and snacks by the bed (preferably out of sight) so that I can take medication, including things that need to be taken with food, or dissolved in water. The straws are so that I can drink while lying down.
• Non-prescription medications(e.g. Tums/Rennies, vitamins) and non-medical things (e.g. ginger, strong mints, hard candies - for nausea) are not currently stored in the bedroom with the other medications. I think that it might be helpful to have everything in one place. 

I haven't totally sorted out all of those problems yet, but I'm well on the way with it. Look out for the 'after' photographs tomorrow and an explanation of how I'm beginning to bring order to chaos!


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Three Truths and a Little White Lie

1. I have had a perfectly round 100 attempts to get an IV line into me this year alone. I think it's time to stop those doctors muttering their vague thoughts about 'maybe you should get a port or PICC' and actually encourage some action, don't you?

Actually, this is an arterial line, but I couldn't find a pic of my IV lines!

2. Not only have I studied medicine and physics, but I also took evening classes in patisserie. I love Albert Roux more than is appropriate, given the age difference between us.

Chocolate flowers dusted with gold lustre

3. I play euphonium, oboe, piano and harp - purely for pleasure now, though I seriously considered ditching the idea of studying medicine for a career in the performing arts. Aberdeen University had a very tempting exchange programme with the Paris Conservatoire when I was making my university applications, but the distance from the south coast of the UK to the northern end of Scotland was too great, and traveling on the train with a harp is a pain.

4. My cat has a perfect internal clock - she will bat my face with her paws at 7 am (waking up time), will wail incessantly at 6.30 pm (dinner time) and will sit on the stairs with a hopeful look on her face at 10.30 pm (bedtime). For good measure, she is scared of strangers, apart from paramedics, who need her supervision while they're looking after me.

Best guess as to which is the lie?

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J