Tag Archives: mental health

Broken trust

Trusting medical professionals

In a recent blog I concluded that I was going to try some new medication with the support of my GP – sounds sensible and simple doesn’t it?!

Unfortunately, my relationships with medical professionals isn’t straight forward!

I’ve had mental health problems for over 20 years and my physical body has been letting me down lately too:

  • The first time I went to my GP (admittedly this was in the 90s) I wasn’t referred for the support I needed.
  • The psychiatrist I was under for my first hospital admission (2005) mis-managed my case so badly I nearly died.
  • Bed bound in hospital with a fractured spine I contracted MRSA (to be clear, I could not get up and about to go and find MRSA for myself, I was given MRSA).
  • Ambulance outside A&E departmentDiscriminatory treatment in A&E following self harm. Eg longer waiting times and derogatory comments. (Some may think I deserved this and I agreed at the time but self harm is a symptom of mental illness just like hypoglycaemia is a symptom of diabetes.)
  • During a subsequent hospital admission, I built a good relationships with a therapist but they stopped seeing me with no explanation.
  • When I’ve tried to raise concerns about my care, my version of events has been discounted.
  • Abnormal blood results have been missed. Only picked up 10 months later, when I was seeing the GP about something else. I was still really struggling with the problem from 10 months previous but why would you go back when you’d be told there was nothing wrong?
  • I came out of a consultation with a psychiatrist, having told him I was actively suicidal, with no plan to keep me safe. As far as he was concerned I was going to go home and take an overdose (of enough medication to end my life).
  • For years I was told my tiredness was due to me not eating enough. When they finally did some blood tests, they found I had an underactive thyroid.
  • During a phone consultation with my GP I was incredibly distressed (crying so much I could hardly talk) and the doctor made no reference to it. I tend to hide my distress very well, the fact I couldn’t was an alarming sign I was very unwell.
  • 3 incredibly painful cervical screening tests (I was told it was normal because I was difficult) when I’ve since discovered, if they used a small speculum it can be completely pain free (twice!)!
  • My GP “reviews” my repeat prescription without seeing me (for medications that require annual blood tests…).
  • Following an ankle operation my physiotherapist insisted the exercises that caused severe pain should be performed multiple times daily. I trusted her advice. Turns out, when I went back to see my surgeon, the operation I’d had, the no-pain-no-gain approach was not appropriate and I’d done more harm than good. (I’d been the one doing the exercises so it was my fault.)
  • After experiencing blunt-force trauma to my jaw with immediate swelling and extreme pain I was told I did not have a fracture and did not need an x-ray. 2 weeks later, an x-ray revealed a fracture needing urgent surgery.
  • I recently told my GP I’d lost a lot of weight. She checked if there was an explanation. Having fractured my jaw, we ruled out the “unexplained” (possibly cancer) but she showed no concern about the fact I have a history of a serious eating disorder and may be finding the situation problematic.

Don’t get me wrong, as a qualified doctor, I’m well aware of how hard it is behind the scenes. I don’t expect all medical professionals to be perfect, everyone makes mistakes but there many other examples; I’ve been let down time after time.

The definition of trust is: “Firm belief in the reliability, truth, or ability of someone or something.”. The 4 elementals of trust are believed to be: competence, integrity, reliability and communication. It saddens me that at times all of these elements have been missing from my care leading to serious consequences (at worst, near death, at best, seriously prolonged illness).

When we trust someone we are willing to be vulnerable with them. We have no choice but to be vulnerable with medical professionals; at best we’re talking about personal issues, at worst we’re under anaesthetic! I’ve recently discovered, when on the emergency surgery list, you might never meet the person who did your surgery!

I was asked to trust someone I had never met – when we did meet, unexpectedly, in clinic 5 weeks later, he said “hmm, I recognise those arch bars… did I put those in?! Oh, I was asked to come in and help… very nice to meet you!” Turns out, the top and bottom of my jaw had been operated on by 2 different surgeons! Now, this guy was absolutely lovely and the reason I didn’t meet him before my surgery was because there was no time; he was operating while I was being put to sleep. I came out of surgery at 10.30pm and went straight to sleep on the ward and for all I know he continued operating! In clinic he then introduced himself as if building up the rapport that leads to a trusting relationship, I cannot fault this interaction one bit!

Something I find particular difficult is that when we walk into the consulting room, even with someone we’ve never met before, trust is assumed; whereas in most walks of life, trust has to be earned. Does a medical professional assume that since they’ve earned their qualifications they’ve also earned our trust? I realise I may be an extreme case but it never seems to occur to the medics I see, that I might carry baggage. If I struggle to trust, surely other people do too but it literally never occurs to them that they might need to check if I need more reassurance or explanation.

If I was still practicing medicine, I’d like to think I would have more compassion for my patients and some understanding that I could not assume their trust.

At times when I’ve been considered a vulnerable adult (when sectioned under the Mental Health Act), I’ve been in a position where my inability to speak up for myself has been taken advantage of – this is simply not ok. At times, seeing a medical professional has put me in a worse position than if I’d simply not gone to see them.

Please don’t think I’m saying we shouldn’t trust medical professionals!

I’ve had numerous fantastic experiences (I’ve definitely had my monies worth out of the NHS):

  • Multiple occasions when psychiatrists have pulled strings for me to be admitted out of area (because I don’t want to be admitted where I work).
  • Surgeons who’ve preserved my ability to walk and to see without judgment.
  • Incredibly compassionate treatment in A&E following self harm (it’s probably been 50/50).
  • HydrotherapyHydrotherapy – just wow!
  • A psychotherapist who quite literally saved my life.
  • Paramedics who’ve saved my life.
  • Hampshire CCG agreed to continue funding a Berkshire psychotherapist when I moved house.
  • Multiple intimate procedures/surgeries done with ease, dignity and compassion.
  • Multiple 2 week wait procedures.
  • Once my jaw was diagnosed (on mainland England!) I received excellent treatment! Including my consultant booking to see me on a non-clinic day to check my progress! I highly recommend Guildford Macsfax department!

Unfortunately, I’ve just had a few too many bad experiences and it’s human nature to protect ourselves from future bad experiences! I consider myself incredibly fortunate that, with my medical background and interest in the medical sector, I have knowledge that means I can manage ongoing treatments myself but should I have to?! I have to rely on the GP for monthly prescriptions but I realised, recently, I really ought to go and see them when I realised what was written on my prescription really didn’t bare much resemblance to the dosages I was actually taking! (All safe – I do know what I’m doing – not something I recommend for anyone not medically trained!)

I avoid going to see medical professionals if at all possible (generally a good rule of thumb for most people!) but this means I often put up with far symptoms for longer than is advisable! Ideally I’d be assertive and insist that they listen to what I need but feeling vulnerable strips me of the minimal assertive capabilities I have!

When it comes to it I just have to believe that the majority of professionals have my best interests at heart. Just because I’ve met a few people on their off day (giving them the benefit of the doubt) doesn’t mean the next one won’t be completely awesome!

How did colouring save my life?

This year, 4th-10th October is Occupational Therapy week!

If you’ve heard of Occupational Therapy, you may think about physical health aids such as a commode or guide rails, or maybe basketweaving, but they’re so much more!

The Royal College of Occupational Therapists says:

“Occupational therapists provide practical support to help you do the activities that matter to you. They will consider all of your needs – physical, psychological, social and environmental. Their support can make a real difference giving a renewed sense of purpose, opening up new horizons, and changing the way you feel about the future.”

When mentally ill, you may think you’ll see a psychiatrist or psychologist but the nature of mental illness means a multidisciplinary approach is the best and most successful.

The way that you occupy your time can profoundly impact your mental health. I’ve had contact with occupational therapy during prolonged hospital admissions.

One of the most helpful psychological techniques I’ve used is mindfulness but it can be incredibly difficult, when you mind is sick, to try mindfulness for 10 seconds, let alone a couple of minutes. When most unwell I needed something easier to engage with…

When an occupational therapist first introduced me to colouring, I feared it was a little childish and thought I‘d find it hard to concentrate. But I reserved judgment and gave it a go. I’ve been hooked ever since. Colouring was a simple enough activity, I could engage with it and it enabled me to switch off from my spiralling thoughts. It has a calming effect and therefore reduces symptoms of anxiety without much effort! It can also improve motor skills and vision and also boasts to improve sleep!

Ultimately, mindfulness guides you to be able to focus on your breath but mindful activity can be just as beneficial. Mindful colouring meant I focused my mind; continued practice of mindfulness enables us to remain in the here and now rather than dwelling in the past or worrying about the future.

I was seriously unwell so I had to take medication, work hard in psychotherapy and use a lot of other techniques but colouring was the thing I turned to when I couldn’t muster the strength to do anything else. If I’d used every ounce of energy to get out of bed, showered and dressed, I didn’t have any energy left but I didn’t want to just sit in front of the TV; colouring didn’t require me to use any energy, but it helped keep my mind occupied. It played an important part in me beginning to rebuild my life, 1 tiny step at a time.

Plus, I started to feel quite proud of the results, boosting my self esteem along the way!

How do you choose what to eat?!

TW – Trigger Warning – this post contains discussion about food and anorexic thought processes and may be triggering to people to some people. Please exercise causing if you choose to continue reading.

Many of you will know, I recently fractured my jaw and this has led to a severely restricted diet as I had metal work holding my teeth tightly shut to pull my fragmented mandible into correct alignment. At best during the last 9 weeks I’ve been able to get a teaspoon into my mouth and manage smooth soup, at worst, it’s been smoothies and milkshakes through a straw. Unfortunately, this has led to weight loss and the restriction has triggered some familiar thoughts linked to previous experience of anorexia.

2 days ago, I was given fantastic news, I can now open my mouth fully and I’m able to chew food again! I’ll be having the metal work removed within a few weeks so the end of the ordeal is finally in sight!

The hospital has a Costa and I’d been dreaming of enjoying cake from there for weeks! But…standing in front of the array of cakes I simply could not decide, I realised, I had no idea how to choose! The part of my mind that was looking after my fractured jaw needed to choose something soft and easy to chew (rational wise-mind), the part of my mind controlled by anorexic urges was frantically trying to calculate the calories (automatically) but there was a part of me that simply wanted to choose something I liked!

I’d thought about trying to plan for this moment but I’d not wanted my hopes to be dashed. The recovery of my jaw had not been a smooth road so I thought it was best to protect myself and be prepared for not getting the all clear news.

So, how do I choose?!

I love carrot cake but this one had walnuts in it and I’d been advised to avoid nuts at first. I love chocolate cake but I’d been drinking a lot of chocolate milkshake so I wasn’t too enthusiastic about eating a chocolate cake right now. Some of the cakes looked a little hard for the first thing I was eating (pastry/tiffin/crunchie etc). As I gradually ruled out more and more cakes, the choices were reducing which was helpful…or was I making excuses to avoid calories? As I stood there with the waitress waiting for my order, the pressure was on, anxiety raising in my chest, every fibre in my body wanted to turn and run…

I wanted cake, but at the same time, I didn’t want cake if it was going to be this hard! I wanted to enjoy this experience but it was becoming too stressful!

As I’ve noticed a lapse in symptoms of anorexia, fortunately I’m able to catch myself and make a conscious decision not to go down that route – I really do not want to experience that dark hole ever again! But it’s reminded me of some of the difficulties I thought it would be interesting to write about them so people might understand what it’s like to try and recover from an eating disorder.

I, like most, had a dietitian support me to make changes as I tried to put on weight and break free from anorexia. I was advised to make changes such as increasing portion size and varying the foods I ate. So, for example, I was advised to add a sandwich to the fruit I was eating at lunchtime. Simple enough, right?! But, how do I choose which bread to buy If you’ve not eaten bread for years? Have you seen how many types of bread there are in a supermarket?! Up to this point I‘d chosen food based on calorie content, an anorexic mind then persuades its host that it’s its personal choice to want that specific brand. At my worst, I would visit multiple supermarkets for specific brands of specific foods, it didn’t feel like a choice, it was a compulsion.

Confused in the supermarket

So, trying to recover, standing in the bread aisle:

  • Do I go for the most eye-catching brightly coloured packaging? Sounds weird, but it’s a way of choosing!
  • Do I go for the “moral high ground” and choose organic?
  • Do I want large slices or small slices? Smaller, right? Oh no, hang on, that’s probably a disordered thought… But, why would I go for large slices?!
  • Do I like seeded or granary? Is wholemeal different from wholewheat? How will my gut respond to fibre?
  • Do you want a half loaf, just in case you don’t manage this challenge you don’t want to waste too much? Or should I assume success?
  • How about cost? Is more expensive bread nicer? Should I calculate cost per slice or per portion? I don’t want to get a taste for expensive bread, do I?

As soon as you start comparing breads, it’s all too easy to compare calorie content and bam, easy, decision made. Who’s going to bother going through the palaver of the above when it’s so much easier, simpler and far less anxiety provoking to just pick one up based on calorie content?!

And that was just bread for a sandwich, don’t get me started on the margarine/butter debate or sandwich fillings!!

It’s important to remember people trying to recover from other eating disorders may choose food based on, for example, how comfortable they are to binge/purge or how the food makes them feel when they eat it (emotional eating or eating to avoid boredom). Any eating disorder restricts your ability to choose food based on a) whether you like it and b) whether it has a helpful nutritional content for what you need.

It’s so hard to remember, when in this state, food has no moral value, no food is good or bad, food is fuel with nutritional value and should be consumed without guilt or shame. Recovery is hard when surrounded by modern diet culture that normalises, even endorses, unhealthy restrictive eating habits.

When you’ve been absorbed by an eating disorder, you lose touch of your likes and your dislikes – not only can you not remember them but you don’t think you ever had any, beyond preferring foods with a lower calorie content. “Seriously, I love cucumber and water for lunch, it’s just what I prefer!” Yeah, right!

Fortunately, my current situation has only been for a few weeks so I can remember the foods I like, I will be able to fall back into my healthy habits easily. When you’ve been surrounded by an eating disorder for a long time, many years for most, sometimes decades, the disordered habits can be so ingrained that it’s hard enough to even imagine things could be different and it can feel impossible to go through the process of change.

I’m here to say, change is possible, stepping out is hard but once you’re broken away from food rules and rituals, freedom tastes fantastic!

You are never “good” or “bad” when it comes to food. Food has no moral value. It’s just food.