Satyagraha

There is an opera by Philip Glass about the development of Mohandas Ghandi's philosophy of Satyagraha. It's a compound word from the Sanskrit, meaning "Truth Force" or "holding onto the truth."

I was listening to the radio this morning, to a discussion of, among other things, Ghandi's early life. This word, Satyagraha, really struck me. It is necessary to hold onto the bigger picture in order to make change.

As someone with a disability, I encounter people who see themselves as victims, martyrs, or warriors. These people rail against the injustices and hardships faced by people with disabilities. 

Thinking about the Truth Force this morning has made me think again about why I feel so strongly about patient advocacy. I know that trying to make change from the point of view of a victim is difficult. I need to find a bigger understanding and force to hold onto, which will be the central driving purpose in my advocacy. 

What are your reasons for wanting to make changes?

I'm Coping (aka Managing Expectations with Doctors)

Crystal from LivingWellWithGastroparesis.com commented recently that she has a standard answer when people ask her how she is: "It's been a lot, but we're hanging in there."

I say the same sort of thing, and wonder how many other people gloss over the difficulties inherent in living with a chronic illness of any kind.

One of the problems for me is that I smile a lot. I don't drop the smile for many people, even for my doctors, so the general consensus tends to be that I am doing well. As a result of this, I somehow managed to slip through the net of follow-up with my gastroenterologist. I thought that I was doing ok, and that I could cope without any help. My doctors thought that I was doing ok because I didn't contact them to find out why I hadn't been sent an appointment.

By the time I did see my doctor (at least nine months later than I should have seen him) things were not good. I was severely anaemic, acidotic, and almost bedbound. I told my doctor that things were not good, and he immediately arranged for me to be admitted to hospital. I couldn't even cry with relief because I felt too ill. Instead, I lay across the seats in the waiting room and concentrated on not vomiting while I waited for a bed on the ward.

How did things go so wrong?

I think it started when I left hospital. I had been in hospital for almost a month, and was desperate to be allowed home because we had guests coming to stay with us. This deadline meant that I absolutely jumped at the chance to be allowed to leave, and didn't make sure that everything was in place to support me as an outpatient.

When I left hospital last year, on a Wednesday or Thursday night, I didn't even have enough medical supplies to get me through the weekend. I had no follow-up arranged with either my Gastro doctor or dietician, and couldn't get hold of my GP at such short notice. I was being sent home on tube feeding, having not reached any of the feeding targets set while I was in hospital, and without any clear guidelines.

How will this admission be different?

While we know more about the problems this year, and have a clearer diagnosis, the situation isn't that dissimilar. I am actively losing weight (one of those rare situations in which this is not considered a good thing!), am malnourished, anaemic, and experience severe pain, nausea and bloating in response to even the lowest rate of tube feeding. Last year we tried a number of different feeding preparations (low calorie, high calorie, semi-elemental) and lots of different ways to increase the rate. We tried feeding at a very low rate, 24 hours a day, and gradually increasing. We tried increasing rapidly in an attempt to shock my body into cooperating. We tried regimes that involved timed increases and decreases in rate. Nothing really worked, and nothing has really changed.

Currently, I am on TPN (complete nutrition, given to me through a drip into a large vein). It's great as a short-term solution to stop the weight loss and provide my body with some of the nourishment it so badly needs, but there are serious risks and complications, so we are all working towards getting my gut working!

Before I go home, I need a plan to follow - how we are going to increase the rate of feeding (or how I'm going to stay nourished and hydrated), and I need to know who to contact if things go wrong. Going wrong is something that also needs to be carefully specified - I want to have clear goals so that I know if I'm not meeting them. I want to have a time frame in mind, with an appointment booked for the end of that trial period.

I've talked about 'SMART' goal-setting in the past (as described by Paul Meyer in Attitude is Everything), and this is something that I intend to use again when we're discussing how I'm going to manage when I leave hospital.

1. Specific goals, and a specific plan telling me how to achieve those goals (e.g. increasing the rate of feeding by 1 ml/hr per day, up to a target rate of 80 ml/hr)
2. Agreed parameters for me to Monitor/Measure so that I know if things are not going according to plan. This is important. Doctors (and other medical professionals) are often vague about this, saying "Get in touch if things get any worse (or if things don't get better)". This leaves people with the dilemma of knowing that things have deteriorated (but maybe not enough to bother the doctor), or not improved (but maybe they should give it another day or two). Numbers are helpful, e.g. body weight, calories per day, pain score.
3. It is important for the goals to be realistic and Achievable. Nobody benefits if I go home from hospital intending to gain 1 kg every week and increase my feeding rate by 20 ml/hr every day. We know that my body can't tolerate that sort of feeding rate. Setting unrealistic goals is one of the surest ways for me to get disheartened, and probably end up back in hospital, sicker than I was before.
4. The goals and things to monitor must be Relevant to the situation. Monitoring my blood pressure or body temperature, for example, are useful things to do, but aren't directly relevant in determining whether I'm meeting my nutritional goals. Try to narrow down the list of things that can be measured to ensure that you focus only on the most important. Anything else just clouds the issue.
5. Set a Time limit on your goals, and be sensible about it. When I leave hospital after this admission, I hope to have gained weight and to have increased my body stores of various nutrients. This might be enough to keep me alive for several months, even if I fail miserably at tube feeding, but it would be far better for me to meet with my gastroenterologist or dietician after 3-4 weeks to discuss progress than for me to keep plugging away at my goals, independent of medical supervision, until I am a skinny wreck! Timely progress assessments will allow me to modify my goals and methods, and to put extra support in place if necessary, before I crash and burn.

In addition to the SMART categories, I will ask my team for their 'deal breakers'. These are the things that cause all other plans to grind to a halt. In my case, getting a high temperature has its own set of rules. If I start to run a fever, the SMART plan goes on the back burner and I have to seek urgent medical help. A more relevant deal breaker might be if I drop below a certain body weight, or fail to meet my daily calorie target for a specified number of days. These things are important enough toindicate that the current plan is not working, and that we need to regroup more urgently and come up with a new plan.

It is helpful to have these 'deal breakers' written down and specified, with a plan of action in each case. This is often presumed to be in the realm of common sense, but I can promise you now that my common sense goes out of the nearest window when I'm trying to avoid a hospital admission. Having a written (and agreed) protocol in place means that I have no 'wiggle room' to pretend that I didn't understand, or didn't think it was that serious.

I've been quite specific in my examples, referring to my own struggles with my digestive system, but this could just as easily apply to someone with rheumatoid arthritis, lupus, asthma or diabetes. Or pretty much anything else. Substitute your own symptoms and goals, and there you have it!

Creating Your 'Dream Team'

I've just read a book called Living Well With Gastroparesis, by Crystal Saltrelli (who has a wonderful blog). It's full of great information and advice about gastroparesis, and the general tone of the book is really positive. I didn't want to put it down!

One chapter that stood out for me was about creating a Dream Team of healthcare professionals. This is something that I've been working on with my GP - finding and bringing together a team of people who can help me with all my various medical conditions and can work together to help me to live as well as I can with the conditions that I have and the symptoms that I experience on a daily basis.

I absolutely love Crystal's term, 'Dream Team'. I want to have a Dream Team looking after me, and I want to be a member of this Dream Team. This is not just about healthcare professionals making decisions about me; this is my life, and I have to make the most of it.

I don't really want to talk about the whole Dream Team. After all, people with different conditions may have totally different needs. Today I want to talk about three members of the Dream Team, relevant to anyone with a chronic illness.

The first and most important person in the Dream Team is you. You are the reason that this team exists, so you need to be motivated. I've written before, and will write again about getting organised and about treating your healthcare as seriously as you would treat a full-time job, so I'm not going to go into details of that here, apart from a few key points:

1. Plan: Get information about your condition(s), your medications, possible treatments, and good doctors/nurses/therapists in your area. Don't be afraid to ask for recommendations from friends, or online from other people with your condition. 
2. Keep good records: This is really worth a whole post on its own, but keeping track of the reports that you get from the people that treat you, test results, as well as your own records of symptoms, anything that you measure (e.g. blood sugars, peak flow, weight), is invaluable. You are the only person that has all of this information!
3. Have clear goals: 'Getting better' is not specific enough. Creating goals is a particular skill, and one that I'm still learning! The more specific you can be with your team about what you want to achieve, the easier they will find it to help you, and the more motivated you will be because you are working towards something.

Every Dream Team needs a good primary care physician - someone who is able to coordinate things for you. This person might be a GP or they might be a specialist, depending on your situation. For me, it's my GP, as I have at least two 'main' conditions that cause all the other problems. Having a respiratory physician as my primary, for example, would be totally unsuitable for the orthopaedic problems, and vice versa.

GPs, as the name suggests, are generalists. This is their biggest strength, in my opinion. However, even generalists have special interests, and it may be worth asking at your local GP surgery to find out if any of the doctors have special interests in diabetes or asthma or chronic illness in general. At my local surgery, there is one doctor with a special interest in chronic illness. Unfortunately, she only works part-time during the week and not at all during school holidays. I started to work through the other doctors in the surgery, never specifying which doctor I wanted to see, with some funny and some disastrous results. Eventually, I found a fabulous doctor after a recommendation from a local friend. She works five days a week, and the standard two-week wait for a routine appointment is worth it to me!

So, what is this person's role within your Dream Team?

Firstly, a word of warning: even the most wonderful GP won't be able to do all the hard work for you. You still need to take responsibility for lifestyle changes, keeping good records, taking your medications, and contacting your doctor if you need advice or if you notice a deterioration in symptoms.

What your GP can do (with your help and co-operation, of course):

• Arrange regular screening checks appropriate to your condition and the medications you take, e.g. regular DEXA (bone density) scans for those with significantly reduced mobility or long-term use of corticosteroids (e.g. Prednisolone)
• Review your condition and regular medications routinely and after emergency treatment or acute exacerbations
• Prescribe medications to protect against known side effects: if you take NSAIDs (e.g. Ibuprofen, Naproxen, Diclofenac) for a short-term problem and this is changed to a long-term regular treatment, your GP might consider prescribing a medication to protect your stomach
• Refer you to appropriate specialists: this may be if you develop a new symptom that isn't controlled by standard treatments, if your usual medications stop controlling your symptoms, if you need surgical intervention (or just a surgical opinion) for a problem, or for various other reasons
• Liaise with your specialists, following up on recommended treatment or review. It would be lovely if your specialists could all write to each other after every appointment so that they're all in the loop, but in practice this rarely happens. A good compromise is to ensure that you and your GP get copies of all letters and test results so that the responsibility doesn't rest on your memory and medical knowledge to pass information between your specialists

In practice, especially for those of us with complex conditions, it can be very easy to fall through the gaps in the system. Specialist hospitals often consider their role to be that of advisors, leaving the routine follow-up to those more local to the patient. Unfortunately, local hospitals are often scared of complex patients, preferring to assume that specialist overview is all that is required. There isn't really an easy solution to this, apart from taking personal responsibility and asking your GP to do the same.

The final person that I think has a crucial part to play in any chronic illness Dream Team is a psychologist. If you can find one with an interest in chronic illness (or pain, breathing disorders, etc.) that's even better. Living with a chronic illness can be hard. Maintaining healthy relationships with friends and family can seem next-to-impossible if you're unable to cook, eat, walk, or even sit up. Chronic pain, nausea, breathlessness and other symptoms can make one tend to feel antisocial. Psychologists can provide a healthy outlet for feelings of grief and frustration, and can often teach techniques to manage symptoms as well as ways to explain symptoms and prognosis to family and friends.

Psychologists often get a bad rep in this country. I have frequently encountered nurses and doctors who drop their voices when mentioning psychology or psychiatry. I do understand that there's stigma associated with psychiatric illness, but this isn't going to go away if we just pretend it doesn't happen, and even those of us who would consider ourselves to be mentally 'healthy' can benefit from psychological support. If you're offered the opportunity to talk to a psychologist, I would recommend that you jump at the chance, and if you're not offered, don't be afraid to ask.

Remember, you need to be the driving force behind your Dream Team!

Negotiating with Doctors

Once again, a brief apology for being out of touch. I know that many of you have been worrying about me. I haven't been as well as usual, but am managing things at home with the help of my wonderful doctor.

I saw my doctor, Dr B, this morning. I had a double appointment and took with me the list that I made after our last meeting (which I described in my last post). Dr B read through it all carefully, even checking that I was happy with all my current medications. After listing all my symptoms (yes, all of them), I wrote a Top 10 list of the things that affect my quality of life the most, and suggested ways in which these things might be treated.

Many patients, however knowledgeable they are about their own condition, are reluctant to make suggestions, ask to try specific treatments, or even to ask for a referral to a specialist. Many of us even shy away from telling doctors how bad things really are for fear of being labeled as drug-seeking or malingering.

A good doctor will listen to your suggestions and explain what they think. They may not agree with you, but you deserve an explanation rather than a flat-out refusal. If you have a reason for your suggestion (e.g. it's part of the guidelines for treatment of your condition, or peer-reviewed research from a reputable journal), explain that to your doctor. Your doctor deserves an explanation as much as you do, and they're more likely to agree with you if they understand your reasons for suggesting a particular treatment.

The number of conditions that most doctors encounter in a single week is daunting. The number of guidelines for each of those conditions is daunting. This is just for the common conditions. Expecting your doctor to know the guidelines for your rare conditions as well as you do is not fair. They may find time to read the guidelines for your condition once they've met you, but if you want to be proactive and read them, then do, though remember that your doctor may have good reasons for treating you differently, especially if they're a specialist. Ask them to explain their reasons.

Most doctors work extremely hard, and are extremely knowledgeable. This doesn't mean that you're not allowed to disagree with them, and certainly doesn't mean that you can't see a different doctor if you feel that they're not a good 'fit' for you. I saw a GP at my local clinic when I was having a severe asthma flare. I'd increased my steroids to maximum and despite using my nebuliser every 2 hours, was still short of breath at rest. This particular GP recommended that I go home and start to reduce my steroid dose. This advice was not just ill-informed (about a condition that affects approximately 1 in 10 people in the UK), but actually dangerous, and the doctor refused to listen to any of my suggestions. Needless to say, I try to avoid that doctor now.

But back to my lovely doctor. Dr B was concerned about my chest and my stomach. I do have a chest infection, but I explained to Dr B that I've increased my steroids and nebulisers to maximum, and that I have antibiotics on hand, which I will take if I get a fever or other concerning symptoms. I've struggled a bit with keeping my oxygen levels up, but apart from that I feel that my symptoms are as well-controlled as they can be, and that I just need to support my body while it recovers from this infection. Dr B checked my oxygen levels and peak flow, and listened to my chest, and agreed that I'm giving my body enough support for now.

My stomach was a different matter. I've not been able to keep food or water down since Sunday night. This is not a new thing for me, but it is worse than usual. Dr B was keen that I should go straight to the hospital for IV fluids. I don't feel that I'm at that point yet, and explained what I planned to do in order to avoid the hospital:

1. Set a timer every 15 minutes and try to drink 5 - 10 ml each time it rings
2. Vary the liquids I'm drinking (I can't tolerate Dioralyte rehydration solution, but I can get electrolytes from other liquids)
3. Monitor my output
4. Take regular anti-emetics

Dr B agreed that this was a reasonable plan, but wanted me to promise that I would go to the hospital if things 'got worse'. I find this a bit vague, as it could mean anything from managing to drink 10 ml less than yesterday all the way through to passing out from severe dehydration. So we agreed specific parameters:

1. If my systolic blood pressure drops below 100 mmHg, or if I faint (this is slightly difficult, as I have autonomic dysfunction, so I do faint sometimes anyway, but I still think it's reasonable)
2. If my resting heart rate increases above my normal by 10 bpm
3. If my urine output drops below 300 ml per day
4. If I'm still not keeping liquids down by Friday

I left the appointment feeling very positive and confident that I could manage my own condition, and that I knew how to recognise problems and what to do if things deteriorate.

So, tips for successful appointments:

• Go into the appointment with a plan - what do you want to address at this appointment?
• Be honest about your symptoms. Write them down if necessary.
• Don't be afraid to ask questions.
• Make suggestions if you have them.
• Listen to your doctor's advice.
• Ask for clarification if necessary.
• Make sure you come away with a plan, written down if it helps you to remember.

Being Proactive

One of the things that I find most difficult about living with complex chronic illness is trying to stay on top of everything. For most healthy women, remembering to book a cervical smear test every three years after receiving the reminder letter is about as proactive as they need to be. For those of us with chronic illnesses, things can get a little more involved.

For a long time I have been trying to get one of my doctors to agree to be 'in charge' of my care. This would mean that they receive copies of all test results, hospital discharge letters and reports from other specialists. They would be responsible for coordinating referrals, prescriptions and routine testing, and would be able to help me to be proactive about my medical treatment.

Unfortunately, many doctors are reluctant to take on this complicated and time-consuming responsibility, either because they don't feel sufficiently specialised, or because they are too specialised and don't feel that it would be appropriate for them to handle those problems outside their area of expertise.

Finally, however, I have found a GP who is willing to take on this role. I met with her for the first time today, and have another appointment in a fortnight to discuss everything. Dr B has asked me to write a list of everything that I want to discuss. I already have a folder with copies of test results, diagnoses, letters from specialists, lists of medications, etc. so that's where I'm going to start. The red folder is approximately four inches thick, and it seems a little unkind to expect Dr B to read everything, so I need to make an executive summary!

Medications:
Name of medication, dose, route (e.g. tablet, inhaler, creams, eye drops), how often I take it, when it was first prescribed, why it was prescribed, side effects, and how well it works to control the symptoms for which it was prescribed.
Include regular prescribed medications, medications that I take infrequently or in an emergency (e.g. Adrenaline injection, emergency stash of antibiotics), supplements, over-the-counter medications.

Past medical history:
This is the bit that I tend to skim a bit. I've had 30 years of surgeries, hospital admissions, diagnoses, medications, splints and braces, etc. I'll probably skim it again and try to incorporate the most important bits into the systems review (coming up next!).

Systems review:
So as not to miss out anything (I often forget to mention that I'm deaf, for example), my list of problems will be ordered according to body system. This probably seems excessive to you, but to me it seems like a logical way of drawing together my past medical history, my current symptoms and the treatment that I currently receive. I'm going to use a checklist from http://medinfo.ufl.edu:8050/other/itt/ros/ros_list.pdf with a few additions of my own.


A few things:
Be detailed. Give examples to illustrate symptoms. For example, indigestion means different things to different people. Try to describe the symptoms, for example the location, severity and type of pain (ache, burning, stabbing, etc.), when it started, how long it has been there, whether it is constant or intermittent, whether it stays in one place or radiates to other parts of the body, anything that makes it feel worse or better (medications, heat, rest, certain movements), whether it is better or worse at particular times of day or night, whether it is associated with any other symptoms (e.g. sweating, vomiting, shaking, blurred vision).

Be thorough. The checklist is full of potentially embarrassing questions. Don't avoid answering those overly personal questions. If you want your doctor to have a full understanding of everything that you're experiencing as a result of your medical condition (or as a result of the medications used to treat that condition), you have to be prepared to talk about some unpleasant things.

Don't expect your doctor to understand how a particular symptom affects you without you telling him or her. Some people manage just fine without being able to lift more than 1 kg; for others this would be totally disabling.

Don't try to make light of your symptoms. If you're anything like me, you don't want to come across as complaining, pessimistic or negative, but this is the time to tell it as it is. This is your opportunity to find solutions, which isn't going to happen if you're busy pretending that you're coping absolutely fine and that you don't have any problems at all. Trust me on this one.

And finally, if you have suggestions, requests or ideas about how things could be treated, or what you'd like done to improve things, don't be afraid to tell your doctor. You're a member of your own medical team, and you're the one that has to live with the effects of any treatment plan, as well as living with the condition in the first place.

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

If I could do anything as a health activist...

Money is no object - this is pure wishful thinking.

If I could do anything at all as a health activist, I would create a requirement (and the funding) for every hospital and large GP practice to employ a Chronic Illness Advocate. This person, and I would love this job, by the way, would work with patients who have chronic illnesses or disabilities to ensure continuity of care.

Patients with chronic illnesses often see numerous specialists at lots of different hospitals. In many cases, they are the only person who is able to see the 'big picture'. When something goes acutely wrong and they are admitted to hospital, doctors often focus only on the acute presenting symptom. They may not remember to prescribe asthma medications to the patient admitted with abdominal pain, or anti-nausea meds for the patient admitted with asthma. They may fail to consider the fact that the patient isn't eating or drinking adequately, that they get dizzy when they stand, or that they are a 'hard stick' when it comes to IV access. They may also fail to consider how the current problem may impact on their patient's existing medical conditions. 

The imaginary (but wonderful) Chronic Illness Advocate would help the patient to coordinate all aspects of their care, across numerous medical and surgical specialties, and between different hospitals and clinics. They would take time to talk to the patient about all their symptoms (not just the edited list that can be given to the doctor in 10 seconds), help them to keep good records of their medications, allergies and other important information, and consider longer-term and proactive interventions. Among other things, they would consider:

- Nutrition:
Is there a need for weight loss or gain?
Are there any nutritional deficiencies that need to be corrected?
Is there a possibility of food intolerance/allergies contributing to symptoms?
Is the patient able to shop, prepare, cook and eat adequately, or do they need help with this?

- IV Access:
Does the patient have difficult veins? If they are likely to need significant periods of IV access over 6-12 months, or if emergency IV access is a priority, consider longer term IV lines (e.g. midline catheter to be placed on admission, PICC for 6-12 months, port-a-cath for long-term but intermittent use, Hickman or Groshong catheter for long-term continuous use).

- Complicated Medical Conditions:
Can the patient be 'flagged' to local ambulance services and emergency departments?
Could the specialist(s) prepare a protocol to be used for anaesthesia or in an emergency?

- Social and Psychological
Is the patient receiving all the help he/she needs (including state benefits)?
Would the patient benefit from (or like) counselling?
Would the patient benefit from physio/OT or social services assessment prior to discharge?

I could go on and on. Doctors and nurses in acute medical units are often too rushed to take in the whole history if it's complex, and are often so focused on the current problem that they don't deal with 'non urgent' abnormalities in blood results, or follow up on 'irrelevant' symptoms. As a result of this, patients often end up advocating for themselves - researching intensively into their own conditions and symptoms, checking their own blood results against normal values, checking their medications for side-effects and interactions. Most of us were not trained to do this, and even if we were, isn't it difficult enough when you're not feeling well, without having to be nurse, doctor, psychologist, lawyer, accountant and everything else at the same time?

The Chronic Illness Advocates would be based in a Complex Care unit. This unit would be staffed by doctors and nurses, physiotherapists, dietitians, occupational therapists, pain specialists, psychologists and social workers. Oh, and Adult-Life Specialists for distraction, play therapy, guided imagery, adult education classes, arts/crafts/gardening/other skills, and preparation for procedures. This unit would see complex patients as outpatients, along with visiting specialists, would house medical records and protocols for their patients, and would admit complex patients to their unit for multidisciplinary care. There would be pleasant places to sit, to eat (or just get a coffee); the walls would act as a gallery for local artists and photographers to display their work; there would be relaxation classes and yoga in the physio gym out of hours, internet access and a library, and various interest groups for patients.

Not only would this unit provide top-level care for patients with complex medical conditions, but they would also act as an informal meeting point and support network for patients, who often don't meet others 'like them'.

While it's generally recommended that multidisciplinary care is the gold standard for many chronic conditions, this doesn't often happen. In the meantime, I continue to be my own Chronic Illness Advocate, keeping extensive records and protocols that I can take to hospital appointments and admissions, keeping track of my own blood results and finding out as much as possible about ways in which I can improve my health and quality of life, both medical and non-medical. I try to support others with chronic illnesses, both online and offline, with friendship and information.

But I can still wish for the day when everything I've described above could be reality...