Tag Archives: medication

Treating mental illness is trial and error

The Locum psychiatrist looked enraged when I pointed to the BNF and said with a heavy heart “I’ve tried everything in there.”

(The BNF is the British National Formulary for medicines used in the UK by all doctors, pharmacists etc as the medicines bible. It has all tried and tested drugs listed with their uses, dosages and side effects.)

I was experiencing another dip in my depression, my current anti-depressant was not working and I’d checked my copy of the BNF, there wasn’t really much else to try unless I was prepared for almost certain weight gain (which I most definitely was not – I was on a waiting list for treatment at an Eating Disorders Unit for my anorexia – I did not have any support at the time!)

The psychiatrist didn’t like a) that I knew what I was talking about (they like to hold the power and control and sadly some feel threatened by my medical degree) and b) I was presenting with “treatment resistant” depression. This phrase is used when it is felt that various treatment avenues have been exhausted and the depression remains. Looking back at this particular appointment, a short admission would have been useful but it seems this psychiatrist decided that would be too much hassle. Despite me having spent the entire appointment in floods of tears, I was sent home with no change in drug regime, no additional support and no further plan. The negligence of this psychiatrist aside, treatment resistance is an incredibly difficult phenomenon to tackle and the spiral of hopelessness can be disastrous!

There is, however, research currently being undertaking into the genetics of mental illnesses. For example, the Genetic Links to Anxiety and Depression* (GLAD) study is based at King’s College London. Therapygenetics is using genetics to predict treatment response in mental health conditions. While I’d heard of research into the trying to find genes “responsible” for various mental illnesses (a hunt that’s proving to be futile), this shift to looking at what our genetics can tell us about what treatment options are more likely to work is relatively new.

Recent research* showed 80% GPs admitted they treat mental health problems as a progress of trial and error. They try one approach after the other, based on what is available in their area and their own experience. This is not just frustrating but could be fatal for some who’re suffering with suicidal thoughts, they might not have time to try one drug after another until they find the right one. New research could enable doctors to finesse their prescribing so the patient can get the most effective treatment, for them, as soon as they are diagnosed.

My story did not end with being let down by a Locum psychiatrist – fortunately, on this occasions I had a good friend scrape me off the floor and supported me over the next couple of days until I could see my GP, and I eventually got to see the eating disorders team, then the psychotherapist who changed my life, and the rest, as they say, is history. To date, I’ve been on, maybe 10 anti-depressants, a few anti-psychotics and a couple of mood stabilizers; I’ve also worked with about 15-20 psychologists and therapists who all believed their approach was right for me. Fortunately, my current anti-depressant has been working for about 8 years (I did come off it, but went back on it!) and I continue to use skills gained from various therapies but it was individual systemic therapy from someone with specialist knowledge and experience in eating disorders that was right for me.

Just imagine if I’d been able to give a sample of saliva 20 years ago and from that, I’d been able to access the right drug and therapy treatment immediately!

Some research is finding genes that implicate how we respond to both negative and positive environments. It is noted that people with a particular gene variant are found to be highly sensitive to adversity, they also respond particularly well to social support and positive life events. This research, with children, looked at different outcomes of individual CBT, group CBT and parent-led CBT. Being highly sensitive to environmental influence led to a good response to individual therapy, whereas those who were less sensitive had similar outcomes to each course of therapy. This is just one example of where a generic variant could possibly predict outcomes to different therapies.

Biological, social and psychological Venn diagram with mental health a the the centre.

But let’s hold fire a minute. We’ve always known all mental illnesses have a bio-psycho-social cause; that is, there are elements of nature and nurture, our genetics and our environment that can lead to development of a mental illness, so doesn’t it follow that we need to take all of this into account when treating an individual? If we run off into the genetics trap, thinking we can pinpoint the ideal treatment with a mental illness, we’ll forget that they will bring with them a whole host of environmental and psychological factors that will influence their ability to engage and benefit from any given treatment.

Camilla Kong*, a Senior Researcher specialising in psychiatric genomics at the University of Oxford has a background in moral and political philosophy and an interest in the ethical issues raised by genetic research in mental health. She has concerns about us focusing entering on a genetic level, she says “It is quite a reductive explanation…that diverts our attention from the person as a holistic being who is impacted by relationships, life history, structural inequalities and environment and social issues.” She is also concerned with stigma and the assumption that diagnoses are life long and incurable. The biogenetic explanation lends itself to fatalism and works against the therapeutic alliance and hope. Of genetic research she says “I think researchers over-promise – they have to, to attract funding – but even if academic institutions pay for the research, and the results are more measured, public expectations are still very high and the more nuanced findings are ignored.”

Whenever we talk about genetic research, there’s the shadow of eugenics. Kong wisely warns us, as we learn more about genetics, “It’s not that we shouldn’t do it, but we need to be very critically aware of the reasons why we are doing it.”

Perhaps what we can learn from my story is that sometimes finding the right medication and therapy takes time and this time is valuable, I learnt a lot as I went along, some things can’t be rushed! It saddens me that (in the UK) there’s a such a push for everyone to travel on the conveyor belt that is IAPT (Improving Access to Psychological Therapies) – now there’s a service that only partially living up to its name. Access has been improved, no matter what your symptoms or history, if you present with mental health problems, you qualify for 6 sessions of CBT in IAPT, this will be the answer for some but there’s no room for flexibility or individualisation. I was involved in some work to train therapists to recognise when the basic IAPT programme wasn’t going to be enough and how/what treatment to refer patients onto but NHS funding for tertiary mental health services is still floundering; scarce resources mean long waiting lists, leading to people with moderate mental illness becoming people in mental health crisis.

For every cancer patient, £225 is spent on research. For every mental health patient, the equivalent figure is £9**. It’s great that some money is being spent on research but so much more is needed. It concerns me that to attract funding outcomes are being over promised and we all know that the media always sensationalise research results. What we really need is some down to earth longitudinal studies that will back-up the need for particular groups of patients to have long term therapy while others may benefit from shorter, specialised therapies. We then need the funding to train GPs and enough tertiary services to provide appropriate support.

*Information and quotes from Therapy Today Volume 29, Issue 10 – Nature and Nurture, Catherine Jenkins.

** MQ Mental Health

You might not realise how much goes on to manage a chronic illness

I’ve got a new colleague at work who’s made some assumptions about me, mainly based on how old she estimates I am (that is a lot younger than I actually am…). Aside from me feeling a little exasperated by her brash insensitivity it’s reminded me how lonely it can feel to live with an invisible illness.
At one point, office talk turned to what time is bedtime and a comment was thrown my way by this colleague, “I can’t stay up late like you young people” (I was the only person under 50 in the room). Aside from the fact I’ve always felt more of an affinity with morning larks than night owls, I’m not a “young person” who can “stay up late” because I have disordered sleep that requires a strict bedtime routine that ideally starts 9/9.30pm.
This led me to think about what else people don’t really see, what do I have to do on a regular basis just to get by, to live, as normal a life as possible? Here are just a few examples of activities I do to manage my health:

  • Weekly portioning out of medication (currently 7 different types, up to 30 tablets a day), counting and checking stock levels – running out simply is not an option!
  • Monthly order and collection of medication – I can use a handy app to do the former but I had awful problems with a delivery service of the latter so currently physically go into a pharmacy to pick up my medication every month (or more often if I’m taking extra prn medications).
  • Sorting out medication changes – recently upon collection of a regular prescription I was told the manufacture of one of my medications was locked. Multiple telephone calls and visits to the pharmacy later, I have a temporary prescription for a different strength (meaning I have to take 10 tablets instead of 4!) and will have to continue following this up until the manufacture is unlocked or a more permanent solution is found.
  • Daily physio at home, regular session in the gym and regular appointments – everyone should exercise for its health benefits but in my case it’s vital I keep my joints supple and my muscles strong to limit pain. Unfortunately exercise is incredibly time consuming so it is something that I skip if I’m busy but I really shouldn’t – would you ever hear someone, on regular medication for a chronic illness, say “it’s ok, I’ll skip a couple of days medication, no problem”? No, we wouldn’t! So, equally, it’s not ok for me to skip exercise.
  • Planning – I’m still learning this one! It’s really difficult to know how much energy I’m going to have in advance. I do know I can’t have back-to-back commitments all weekend and be fit for work on Monday. Making sure my diary is well balanced takes time in itself – sometimes I have to make sure I do things like cooking/shopping/cleaning in advance to take pressure off busy times.
  • Attending appointments – time and again I’m exasperated by our health system being designed for people who don’t work. I was booking an orthopaedic appointment recently and when asked when would be convenient, I said “first thing in the morning, please”, thinking before work would be the least disruptive option. I was offered 11.40…need I say more?! At times, I’ve had to take annual leave for appointments, it’s been the only way to fit them in. Don’t get me wrong, I think the NHS is amazing, I just find it difficult when I’m penalized for being ill.

These are, of course, just the practical things I have to do – there isn’t really any accounting for the mental energy it takes to manage a chronic illness so I’ll just leave that thought with you!
I do not feel sorry for myself, this is my normal and I’m used to it! I just think it’s important not to judge someone on what you can see. Someone may turn up to work every day and to all intense and purposes look like a “healthy young person” but unless you know them, you won’t know what lengths they have to go through every day.
Please make a comment below if there are things you have to do regularly to manage your chronic illness.

Back on medication – have I failed?

Some of you will know, this time last year I was gradually coming off my psychiatric medication. I’d been on medication most of my adult life, I was still in therapy but I felt it was the right time to give it a go. If you’ve been on medication a long time it can be hard to tell if you still need it. The only way to be sure is to try coming off them in a controlled way and see if symptoms return. I did this, I came off everything very gradually, keeping a careful track of how I was feeling and what thoughts I was having. Soon after, my therapy came to an end and all seemed to be going well.
Unfortunately, my physical health in 2016 has taken a bad turn. I’ve had to see specialist after specialist as one organ system after another started going wrong. I was having numerous tests, appointments and procedures. For a time I was managing to keep positive and take it in my stride but there was only so much I could take and I started noticing symptoms of mental illness creeping back in. In an appointment with my GP I was updating her on all the hospital appointments I’d had and talking about test results etc, I was trying to hold it together but eventually the tears started falling. I then explained the other symptoms I was struggling with.
zebra
We had both been keeping an eye on my mental health as it’s common for physical health problems to take their toll on ones mental health and so at this point we discussed going back on medication. I felt disappointed about the prospect but I made the tough decision to give it a go and see if it could help. Starting on a low dose, of course, and stepping it up gradually until I felt a benefit.
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Initially this felt like a failure, I’d worked so hard to remain stable but I’ve managed to re-frame how I see it and I now don’t see it as a failure. In fact, noticing my symptoms and flagging up the problems earlier rather than later is an achievement for me. If the chemicals in my brain are out of balance again, surely it’s sensible to try and put this right? My old habit was to ignore it for as long as possible and hope it would sort itself out but this landed me in hospital too many times! If someone breaks their leg, you don’t expect them to walk around on it, ignoring the pain, we’d all advise them to have it x-rayed and put in plaster. It’s the same with mental illness, it’s important to find the right treatment.
Fortunately, this time, it seems we’ve spotted the signs early enough and the medication is helping.
Like all medications it’s important you’re not on them if it’s not necessary. We’ve all heard about the antibiotic crisis, over treating can have a devastating effect. It is important that anti-depressants and the like are not taken lightly without thinking about therapy and lifestyle changes as well. Also, we need to give careful consideration to any unwanted side effects. It’s also been much trickier for me this time as we’ve had to consider the interactions with all the physical health medication I’m now taking.
tablets
I do not want to be on psychiatric medication longer than necessary so when things settled down I will consider coming off them again. Unfortunately, this doesn’t look like it’s going to happen any time soon. But, I’m not going to beat myself up or apologise for putting my hand up and saying “I need some additional support just now”.
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