My response to "Where Pain Lives" on aeon.co

This was a reply I posted on the article Where Pain Lives at http://www.aeon.co on the subject of how much pain can be on the mind.  Just to add, I don't disagree with these facts at all. Also, I highly recommend you go and visit Aeon in general... It has lots of brilliant, intelligent long-form articles on a huge range of subjects.

Although I understand the point of the article, I think we should be cautious in how such research might affect medical policy. Not because I think it’s false; but rather, that it would concern me if we automatically assume it is most likely psychosomatic. I’m not saying we should waste lots of money either- even if the personal, heartfelt story I’m about to tell would usually be tinged with “give everyone a scan and never say it’s in their head and waste money” type of response. I’m merely saying that, conversely, there will still be people where there is a legitimate cause, and where surgery might help.

Basically, growing up my mother had Trigeminal Neuralgia… An illness I couldn’t claim to visualise, but which was described to me as a nerve pressing on a blood vessel in (or near) the brain. I can vividly remember growing up how she could get incredibly emotional very quickly… Or how she could be extremely cross, then you knew it hit her when she would put her hand to her mouth and wouldn’t say anything, and would go away. It upsets me discussing it with her nowadays- more the description on her side, that she was a zombie because of the sheer amount of painkillers she was on, she wasn’t really living and yet was in constant agony. It became one of those things where she had looked it up on the internet- and one of those extremely rare cases in these days of self-diagnosis where it turned out she actually had the condition.
Her doctor had referred her for a scan, where the result came back they couldn’t see anything. She had forgotten her Dentist had also referred her for a scan- at a different hospital. Rather than cancel, she decided to go along for a second opinion… Where it turned out they had found exactly what my Mum had read about on the internet. It would have been a 6-month wait for the consultation with a surgeon- which she decided to pay for privately for a few hundred pounds, as she really couldn’t cope with the pain for that long- and within the next month had brain surgery. Which, as a teenager at the time, was frightening.

It took a long time to recover- which I won’t elaborate on anymore- but my point is that she had the surgery, even had a complication when there was a pop in her head and fluid started dripping out- and 16 years later continues to be a successful accountant. It upsets me and feels strange to talk about the past of that pain, as it genuinely feels so foreign and unreal that it was my mother’s life. You would never dream she had “brain surgery”, which conjures up certain images. Yet because she had “brain surgery”, every time she renews her driving licence she has a huge form to fill in about the procedure, her surgeon as well as her GP, she has to answer yes or no tick boxes about whether she has ever had a seizure driving a car, fallen unconscious or the like. Again, it seems so bizarre to think if you know her- let alone it feels almost like a different life that never happened. Even when I use the phrase “brain surgery” to other people, I still have largely forgotten in the moment how huge a thing that was and how much the pain was to her at that point in time. Even just a few years later, starting my GCSEs, it felt like none of that had ever happened.

Again, my point isn’t to preach everyone should have a spine or brain scan for any hint of pain anywhere. On the contrary; the idea that one would have such potentially devastating back surgery when there is the chance you could relieve the pain in a non-invasive way should be a no-brainer (pardon the pun) for any sane human being. I think there does need to be some wider education on pain- it’s too easy to go for the painkillers when potentially even something like a headache can be a reaction to intense stress or even not drinking enough fluids… taking pills only masks the symptoms, not the cause. But it shouldn’t be at the expense of a proper evaluation if they are consistent in showing signs of pain… Although I note with back pain what was said about it being notoriously difficult to even tell the difference between a healthy back with apparent issues and a person who can’t walk with the same issues.

On top of that (and which if anything adds to the argument that “pain” can equally be in the brain) is the idea of the “nocebo”… Being too flippant about it being in a person's head, even just if that person gets the impression that is what you’re saying, can also have negative consequences. This flies in the face of evidence-based medicine, yet makes more sense if “pain” has a mental health element. And again, saying there could be a mental health element could also have a negative effect. Which is where I think it all comes back to education, and acknowledging mental health as an equal or large part of the “health” system. I read how people with chronic back pain have differently shaped brains, and it reminds me of neuroplasticity and how it’s equally possible to restructure the brain with training. Which is far preferable to having surgery which might result in you permanently being in a wheelchair.

Eating For Mental Wealth

I'd not even made the link till this afternoon. After a week of relatively healthy eating and exercise, we had a meal planned at a Chinese buffet. It was absolutely fantastic to see people I'd not seen for a while, and I'd certainly had a hearty meal. Well, I certainly wanted to get my money's worth anyway.

Then I got to this morning. My mood had generally been high all week (whether directly or indirectly related to my good food choices and increased exercise is up for debate). And I literally felt agony all over my body, as if a truck had hit me. And my mood was very, very low; I didn't even want to get out and face the world today, compared to a week full of work and fun.

I'm not about to claim that if we all live off vegetables, wear socks with sandals and take 50 Omega 3 tablets every day all the woes of the world will disappear and we will have bright, happy, smiley faces adorned on our heads. But there is an undeniable link between things like a large sugar or caffeine intake, and the "downer" that follows the rush of these more acceptable drugs. Also, if our body doesn't have enough things like Vitamin B, Potassium as well as Water, the first things to shut down are the less urgent systems, like brain function, to make sure enough nutrients get to the heart and lungs.

Interestingly, there was a branch of psychiatry called Orthomolecular Psychiatry, with the aim of attempting to cure mental illness by solely making changes to the diet, supplementing one's intake with "Mega-Vitamins" and the like. Although the proponents started making unfounded claims of "Curing" people using just food when lacking the scientific evidence, it also seems very likely that the reason psychiatry didn't take it too seriously was because there wasn't enough money to be made from un-patented vitamins and food, compared to propriety drugs. (Interestingly, Orthomolecular Medicine seems either more beneficial, or better promoted)

There is growing evidence, however, that taking Vitamin B and Omega 3 each day can lead to an improvement for those with bipolar; which makes sense as the both of these are important to brain function. A psychiatrist I was involved with in a research project put it that there is no harm in supplementing your diet with it in terms of side effects or toxicity, in comparison to the benefits.

So take a minute to think about what you eat. Maybe choosing the banana rather than the Mars Bar will help put your body in the right frame for recovery.

And if you fancy pitching up a tent in your sandals and Couscous, I'll join you.

Why Heroes Can Be Dangerous In Mental Health

Captain Can-Do-No-Wrong Saves Another Person From The Clutches Of Evil. Image via Wikipedia

There are tens of thousands of "service user" Patient Activists across the country that do absolutely fantastic work in helping end discrimination in mental health and for those with mental health problems.

However, after having time to reflect from my extremely happy inaugural blog post, I believe that it can be extremely dangerous when "heroes" come to the fore in these organisations. Now, when I say heroes, what I really mean are two different kinds of people: The first is the kind of person that tries so hard to be "helpful" and to be the "hero" that, in the process, they push everyone else that may be interested away because it is simply to full-on whilst everyone else is simply trying to help while they get on with their lives. The second (and the one that I wanted to focus on) is the one who has genuinely been placed on the pedestal because, absolutely deservingly, they have done fantastic work and have made a beneficial contribution to... well... a great many people.

In psychology, the scalpel of the professional is, pure and simply, their manner. But as we are all human, by definition we are extremely unlikely to get on with every single person in the world. Which is perfectly fine. One person's fantastic psychiatric nurse may be hated by another.

However, when a person is so highly regarded that they are placed on a pedestal, it can become the movement's worst enemy. Disliking that person can become extremely unpopular. It creates an environment where criticism is no longer allowed, as this person is so highly regarded that their reputation suggests they can't do anything wrong. And the person who does raise objections becomes isolated. This could be directly ("X has done all of this good work and I am incredibly upset with you that you have said something bad with him"), or indirectly ("This person is so popular, I don't think anyone will believe me if I criticise them").

Me? I hope I can just keep doing whatever I'm doing. Silently and without praise. As that suits me absolutely fine.

And yes, I still have a bit of a bee in my bonnet.

Related articles

• Be Your Own Hero (downes.ca)
• Top 10 Mental Health Videos of 2011 (psychcentral.com)
• Who is your Real Hero? (swwashingtonredcross.wordpress.com)

Why I am leaving VIK- An Open Letter to @YoungmindsUK

Sadly, after 3 years on the VIK panel, I am going to be leaving for pastures new. My reasons for this stem from what I felt was an extremely inappropriate way to speak to a young, vulnerable adult; and the subsequent complaints procedure and response that has left me emotionally raw, and in a state I feel could have been avoided. I am sick of feeling upset all the time about it to be honest, and would feel much better no longer a part of the organisation.

Firstly I would like to state that in no way to I wish to undermine all the work Youngminds, VIK, staff and volunteers have done to campaign for equality, justice and education to the public and statutory bodies for us young people, who are dealing or have dealt with mental health problems in their everyday lives. I did have a little rant on Twitter, but I wanted to provide some context in the hope that people understand I'm not merely into some kind of “slagging match” for some flippant reason, but that it was a result of distress from the manner of Bill Badham and subsequent failures in the complaints procedure that has left me feeling like my voice, and distress, had not been taken seriously.

Without going into too much detail (although I'm willing to provide more detail if people would like it), my initial complaint was in regards to the manner of Bill when I was stuck in London following the VIK day in November. I wish to stress that I am not calling into question the efforts that were made to provide me help in the situation, but rather the way in which this was done. I do not believe, at a time I was already immensely distressed as a result of cancelled trains and closed tube stations in London leading to me missing my train back home, it was at all appropriate to be constantly reminded that “now yet more funds will need to be used” in order to solve the situation. I also don't believe it was appropriate to get angry about my difficulties in trying to contact a member of staff (mostly as a result of the battery of my mobile phone being unreliable at the time), or getting cross because I could not get more information out of the information desk (bearing in mind anxiety when dealing with other people historically can be a huge problem for me). As a result of the three conversations I had with him on a payphone in King's Cross station, I was left in tears when I had finally managed to get in contact with my parents. I had already resigned myself to having to stay in the station overnight (which didn't bother me so much), but the very least I would have expected was a supportive ear in a time of need, as opposed to sarcastic and demeaning comments such as “I can't exactly magic a plane to you”. In the end things managed to get sorted through my uncle who lives nearby.

As a result of the severe worsening of my mental condition following these events, I decided to write a complaint talking about the events in detail, including timestamped phone calls/text messages where these were retrievable, from leaving the VIK event to the alternative transport arrangements with my uncle. I wasn't out for anyone's scalp, my intention was to ensure things could be put into place to reduce the likelihood of transport arrangements going wrong again, and so that some kind of review on how staff deal with their emotions towards volunteers This included the suggestion some kind of peer support as part of the management structure; the point being it isn't a problem to feel angry, but it would be more appropriate to express this anger among supportive colleagues and definitely inappropriate to express this towards volunteers or those that use the services of Youngminds. I also went to great lengths to point out my own mistakes that I could learn from.

I was quite shocked therefore to the response I had received from this complaint; learning points on transport arrangements and where cancellations should come into play for risk assessments were certainly taken into account. But the most glaring omission, from my point of view, was any reference to staff conduct or any kind of apology for what was said, either by Bill or Youngminds. The response was concluded by an “apology” for how I felt. In the words of James Dale's book “The Obvious”, this can be defined as a non-apology with the translation: “I didn't do anything wrong, but you seem to think I did, so to make you feel better, I'll apologise but I won't mean it.” I didn't get any response from a follow-up e-mail asking whether we should record all of our conversations with staff to insure against these kinds of situations in the future.

A month and a half went by, with nothing other than a letter reiterating the response I had received by e-mail. And it wasn't until a few days ago I started becoming incredibly bothered by the whole situation again. A friend had pointed out to me that, considering Youngminds is a mental health charity, they were quite shocked no kind of follow-up letter, e-mail or phone call had been made. Even if they disagreed with upholding the complaint, not even a “hi, are you ok?”, or some kind of supportive actions, were made. Especially considering this is an organisation that advises other organisations on participation and children/young peoples/service user involvement, it seems mind-boggling that no kind of assistance to see if I felt my voice had been heard, and how I feel the complaints procedure went (Which can be distressing for the best of people, let alone those that may be vulnerable or in a bad way). This for me was the final straw.

I cannot be part of an organisation that, for whatever reason, is unable to put its own advice on participation into practice. As I said, Youngminds has done a hell of a lot of good; the commissioning process in Hampshire, the VIK manifesto and input into government strategy on mental health services for young people are all VIK and Youngminds projects I have been proud to take part in. And, despite my negative experience with Bill, he has created such change in the passion and enthusiasm within the group. And this is why I felt so betrayed by the experiences of the last few months.

For all the good work that charities do, I don't believe this should shield them from any kind of criticism. No organisation or person can do no wrong, and I believe this idea can be hugely damaging. That is the way of benevolent dictatorships, and eventual crumble from not learning from mistakes. All it would have taken, from the conversation with Bill in November to my inbox in the last few days, was a sorry. Even the NHS, within the first few lines of a complaint's response, will genuinely apologise in the first few sentences (and not just for “how you felt”). For whatever reason this wasn't possible from Youngminds, probably as this would have been an acknowledgement that something had gone wrong; which of course isn't possible in these days of damage limitation and NHS contracts. It became, as I have seen many times with other people detained by the NHS, or police force, or other business, yet another tale of a well-known staff member versus a known unknown (and possibly insane) “service user”. And, as I have spoken out against organisations that have this attitude, I cannot volunteer for an organisation that falls into the same trap.

At the end of the day it's your choice whether you believe or disbelieve my experiences from that night. I'd hope that I have never built up a reputation of making things up to spite people, or to be subversive. You could also choose to criticise me for not bringing this up at the next VIK meeting- although I feel extremely unsafe in placing the trust of my wellbeing in this organisation right now, in case things again went wrong. You could also say I didn't exhaust the entire complaints procedure (there is one more level of complaint I could have made)- however I didn't see the point in this complaint again being investigated internally, but only by people a bit higher up.

To be honest I have to say, after posting this, I am not going to worry myself over it anymore. This has eaten up the last 2 months of my life with an extremely low mood, ruined my holiday and ruined my christmas. I have other things in my life I need to focus on and make a difference in.

In hope

Gary Watts

P.S. Could you please remove me from all correspondence from Youngminds, unless it is directly related to my complaint.