Friday, February 20, 2009

Why Do People Stop Taking Medication?

We have already discussed the fact that violence is not a symptom of Schizophrenia. However, there are those who become so unwell that they are unable to distinguish between reality and their delusional beliefs, which are often fed by hallucinations, and these ones may resort to violence in the belief that it is necessary to protect themselves or others. This is rarer than the media would have us believe, but just like any other animal on this earth, we all have the capability of becoming violent when we feel under threat. For many suffering from severe mental illness, the greatest risk is suicide.

For the most part, once a person is relatively stable on their medication a relapse this severe is unlikely, unless they have stopped taking their medication. Indeed, the one line that seems to crop up time and time again in news reports of this kind is that the person “had stopped taking their medication”. But why? Why do people who know that they will become very unwell without medication, stop taking it?

The reasons are probably many and varied, but some of the most common reasons can be:

Once a person feels well they may wonder if they need medication anymore. Is it unreasonable to think this way? Obviously not, which is why in recent years doctors have felt it necessary to stress the importance of finishing any course of antibiotics – even if you feel well. I think it’s a common mistake that people with a variety of illnesses make, and not one to be judged.

Sometimes well meaning friends or relatives can be unhelpful in this regard, suggesting that the person doesn’t appear to have anything wrong with them and that maybe they just need to “try harder”. Such comments can create doubt in a person’s mind as to why they rely on medication. Of course, they appear well because they are on medication.

Sometimes there are still residual symptoms such as hearing voices, even with medication. Extra stress can make the voices worsen and they may tell the person to stop taking the medication. It’s easy for us to say “Just say no!” but voices can be very persistent and wear a person down over time. This is something that this experience helped me to understand.

• Another reason is that a person may simply forget to take their medication, and once a dose or two has been forgotten they can very quickly begin to lose insight and to doubt that what they are experiencing is part of an illness, leading to the person missing further doses.

There are other situations where missing a dose or two is unavoidable. Believe it or not, we had problems with medical staff recognising the importance of Mr Man not missing any doses whilst he was in hospital overnight for a minor operation. One excuse was that pharmacy wouldn’t dispense it, even though he had taken his medication in with him. Another excuse was that he was asleep when they were doing their ward rounds. So wake him up! They wouldn’t let other patients miss antibiotics or insulin would they? Thankfully he didn’t miss two doses in a row, as he was taking Clozaril at the time and as mentioned previously, he would have been unable to resume his usual dose if he had. But for some, this disruption in medication can result in an individual losing insight and not resuming their usual medication regime once they return home.

• You know what? Sometimes people just get sick of taking medication, and who wouldn’t? Sometimes people with Schizophrenia have to take an unbelievable amount of medication with unimaginable side effects. No other person suffering from any other kind of illness would be expected to put up with such side effects, with the exception of those suffering from life threatening illnesses such as Cancer. Do you think I’m exaggerating?

Some of the worst side effects that Mr Man has suffered from include:

* Vomiting. Not just once or twice at the beginning of treatment, but every morning, for months, and often so sudden that he didn’t even get out of bed in time.

* Diarrhoea. Again, severe and sudden. Not able to get to the toilet in time and sometimes not even out of bed in time.

* Drooling, drowsiness, and slurred speech are probably the side effects that give people the impression that people with mental illness are mentally impaired in some way and unable to function normally. These are effects of medication though, and as with Stroke victims the person is still well aware of what is going on around them. Drooling at night can be excessive and result in saturated pillows. Strangely, although suffering from drooling, the person can also suffer from a dry mouth at the same time – not just excessive thirst, but a throat so dry that one cannot swallow their food properly. I’ve lost count of the amount of times I actually thought Mr Man would choke to death during dinner, or he began vomiting because of food stuck in his throat.

* Bed wetting. At one time Mr Man was wetting the bed up to four times a night due to his medication, but then he was in bed more than usual as well – sleeping up to 20 hours a day/night. Medication can make a person excessively tired and sleepy, and make them unable to think clearly when they are awake.

* Jerky movements and twitching. This has resulted in Mr Man dropping cups and plates, falling down stairs, and stumbling into the path of moving traffic. One time we were in a restaurant and his arm jerked suddenly whilst he was cutting his food and his plate went flying across the room!

* Shaking. Being unable to even write with a pen.

* Nightmares every night, so real and so frightening that they caused him to shout in his sleep and wake sobbing.

* The final straw for Mr Man was the excessive weight gain – the kind that cannot be controlled through diet and exercise. Anti-psychotic medications can interfere with the body’s metabolism and cause weight gain and high cholesterol, which of course increases the person’s risk of diabetes and heart disease.

* These medications can also cause infertility in men (I don’t know about women) and I recall Seaneen reporting hair loss due to one of her medications.

The list goes on and on. How would you feel about taking these medications? Can you imagine suffering all of these side effects at the same time? How many other illnesses require medication that makes the patient feel so ill and in fact, in the long term reduces their life expectancy?

But why stop taking medication without discussing other options with the doctor first?

In Mr Mans case, taking Clozaril appeared to be the most affective drug for him – it’s only when he started taking Clozaril that he began to gain insight into his illness. He felt that if he tried to explain that he didn’t want to take it anymore he would be criticised for his decision and forced to take it anyway. I suppose that is no surprise – that is what past experiences had taught him. Thankfully Mr Man has a very understanding and supportive psychiatrist now, who encourages Mr Man to take an active and informed role in the choice of treatments he is given, but this isn’t the case for everyone and many fear a hospital admission if they refuse to comply.

So what is the answer?

Clearly patients need to be properly supported if they are struggling to cope with a medication regime, whether that is because the voices are telling them not to take it, or simply because they need help to remember which tablets to take at which time. Some patients find it beneficial to have their drugs administered through an injection, so that they don't have to worry about taking tablets each day.

It may not be possible to eliminate all side effects, but those prescribing medication can take steps to help reduce them. Each medication has a therapeutic level – beyond that dose the medication won’t become more effective but side effects will increase. The doctor needs to find that level, which can be difficult because it’s likely to be different in each person. They don’t have to grope completely in the dark though – for Clozaril at least, the doctor can determine if the therapeutic level has been reached through a blood test. (I don’t know if this is the case for other medications – maybe someone in the know could help me out with this?)

Even without the benefit of knowing the therapeutic dose for each medication, a doctor can help to reduce the side effects by combining medications. Of course a good knowledge of which medications work well together is important. How does this help? Each medication works differently and has different side effects, but hopefully produces the same result; therefore, lower doses of two different anti-psychotic medications will hopefully work just as well but with fewer side effects than a high dose of one drug.

Other therapies can also be used in conjunction with medication, which again would hopefully reduce the need for higher doses. CBT seems to be working quite well for Mr Man at the moment, and the value of taking part in hobbies that he enjoys has been immeasurable. It took time to reach a level of health where these other interventions were of use to Mr Man, but it was worth persisting.

In conclusion, I would say that it is a mistake to demonise patients who stop taking their medication - rather, I would like to know what measures were set in place to encourage or help them to continue.

Friday, February 13, 2009

Fundamentals of Mental Health Nursing

Today I received my copy of the new book "Fundamentals of Mental Health Nursing", edited by Victoria Clarke and Andrew Walsh, and published by Oxford University Press.

About the book
The cover of the book reveals that it "Covers all the core topics in [the] pre-registration nursing curricular" and that it is an "Innovative patient-centred and case-based approach to Mental Health Nursing".

Written primarily by mental health nurses, it is intended as an introductory text for students studying to become mental health nurses. Rather than being a text book full of information for the student to memorise, it uses real life and fictional scenario's to explain how nursing skills can be applied, and to enable the student to develop their own skills.

The book includes sample care plans, references, recommended further reading, and useful web addresses, as well as experiences from real "service users" and carers. It also comes with a free online resource centre, providing video clips to demonstrate the application of theory, quizzes, an interactive glossary, and sample CV's.

Apart from the fact that it contains a full page experience written by me (woohoo!), the book smells nice, which I think is a perfectly logical reason to buy the book. Oh, and the fact that if you're studying mental health it will probably help with that as well. I also think it may be a useful tool for anyone who is caring for a "service user" for many reasons, not least of all because it explains various jargon and contains many links to the websites of organisations that offer support for both sufferers and carers. Although not an avid reader, I will try to work my way through this book, inhaling each page as I go. The discussion points are likely to raise interesting topics for blog posts.

About the editors
Victoria has worked as a mental health nurse for 26 years, and within nurse education for the past 17 years. Her current post is Head of Division/Director of Quality (Mental Health) at Birmingham City University.

Andrew is a senior lecturer at Birmingham City University where he teaches pre-registration mental health nurses. He previously spent over 20 years working in a variety of mental health care settings. I don't know why, but I always imagined him to be younger than that. Anyway, he seems to be a very nice man and he also contributes to a fairly new mental health nursing blog as well as writing his own hobby blog about Tudor history, although I'm sure he's not that old! I'm not sure if the mental health blog will be as punchy as Mental Nurse in it's approach, but if you pop along you may find a bourbon biscuit or two.

Friday, February 06, 2009

Some Updates

After looking back through my posts I realise I haven't provided an update since July! Where does all the time go?

Back in July I had written that after nearly five years of taking Clozaril, Mr Man had stopped taking this medication suddenly and without warning, because he had had enough of the side effects. Once I realised what had happened he needed to have his Abilify increased and was also prescribed Quetiapine.

He remained on Quetiapine for about six weeks, until he finally decided he'd had enough of those side effects too. At least he made his intentions known this time, and actually, I thought it was good to see that he had a new found confidence and was taking control of how he wanted to be treated. His refusal to take these medications was in no way fuelled by any delusions, which is what distinguished these events from previous ones. He was able to reason logically and although recognising that he needed medication, he didn't want to take these particular ones.

He continued to do really well on Abilify alone, and the change in him was amazing. For all those years he had taken Clozaril, and we believed this was the best medication for him, and yet we didn't realise just how ill it was making him. Once he stopped taking the Clozaril the voices worsened slightly, but he felt - and still does - that the benefits far outweighed the slight worsening of symptoms. I will write more about this in depth next time, as I feel that people greatly underestimate just what mental health patients have to go through as regards these side effects, and then criticise them for ceasing medication.

Due to the worsening of the voices it was decided that now would be a good time to begin CBT, specifically to help Mr Man to cope with them. I think this was a good time for Mr Man, because although the voices had worsened, his insight was still good and he was thinking much clearer. I'm not sure if this would have benefited him when he was delusional as the focus is very much on questioning the voices and answering back.

He was still uncomfortable with the idea of having to see a psychologist, which of course would have been another new person involved in his care, so his Occupational Therapist, Sandra, has taken on the task. I must say, although we were unsure of her at the start, she has been very supportive of Mr Man over the past six months. Mr Man has felt able to open up to her and feels that she really understands - so rare, yet so important. She has also looked into things for him that he is interested in doing which he would never have been able to cope with before, such as taking exams for example.

So, that is the update so far. Although we have to continue to maintain a balance of what Mr Man can cope with, he is doing much better than previously, especially as he is more mentally alert and able to occupy himself. He even coped with going to a gathering of my family over the holidays, which he was actually looking forward to! I can't even remember how many years it has been since that has happened! Eight maybe? He was a little worried that the kids would be shy of him but they played with him as easily as if they had seen him every week.

So things are definitely looking up. And I have even begun watering my plants again, which apparently is a sign that my depression is lifting!

I will post more soon on side effects and other reasons why people stop taking their medications, and the huge changes in Mr Man since he stopped taking Clozaril.