rTMS for Anorexia Nervosa: The Results Are In

So here we are, a year on from my initial inquiries into the trial and it’s time to tell you the results. It’s been a long time coming.

If you’ve read the previous blogs you’ll know I’ve been very apprehensive about the results and this reveal. In the last blog I stated I thought and hoped I had been in the placebo group because (so far at least) I hadn’t seen or felt any noticeable improvement. I said I felt bruised from all the treatment doors and didn’t want to feel another thud against my face.

I’ve waited awhile to tell you all because I’ve needed time to process it myself. Regardless of result an answer meant finally getting some closure on the previous months but also held sway over what happened next. If it was placebo then I would now be allowed to go through the procedure again, this time for real which would mean making arrangements to fit another month of travel into my life. If it was real then I would have to decide if I wanted to look for treatment elsewhere, whether that meant grudgingly going back to my previous NHS Community Eating Disorder Team,  looking into third sector support or even going to my parents for help with a paid, private therapist.

Drum Roll Please….

So enough already, the results.

I opened the envelope, unfolded the paper and the results were there:

“Real Treatment”

So there we go, it was not, as I’d hoped, the placebo. I had received 17 sessions of actual Repetitive Trans-Cranial Magnetic Stimulation Therapy.

How Do I Feel Now I Know?

I’m feeling Okay about things now to be honest. Initially, yes, I was disappointed. I hadn’t been looking forward to going through the whole thing again but I didn’t and still don’t feel any different.

I’ve been told that you can still sometimes see signs of improvement in the six months after the treatment has ended so I guess there is a chance that something might shift. So far results seem to show that in people that do notice improvement it isn’t a massive thing, you never (and I never expected to) wake up “cured” or a thousand times better. But for some people it seems it does help to slightly shift, adjust, “rewire” almost, parts of the brain and can help pave a clearer path to recovery.

I’ll never know for sure why this seemingly hasn’t worked for me. It could be that I didn’t have enough sessions or a high enough dose, perhaps it only works for specific people, a sub-cohort of people with Anorexia we haven’t identified.

It might well be that my head, my life and my illness are too complex right now. Finding out a family member has Cancer is enough to throw anyone completely and I know my head has been in a very bad place for a very long time now.

Maybe it never stood a chance against my environment.

On taking part in a clinical trial

I will never regret my decision to take part in the trial. That it hasn’t worked is a shame for me personally but when you are part of a trial you are just one piece of a much bigger puzzle. The TIARA study I have been participating in sets out to be the biggest ever RCT of rTMS for Anorexia Nervosa and it feels good to have been part of something so big and groundbreaking.

My data and the data from other participants will be gathered and painstakingly picked over by some of the brightest minds in the country. The results will then be scrutinized by their peers across the world and released to the scientific community and wider world for further examination, discussion and replication.

Given that my condition, Anorexia, has the highest mortality rate of ANY mental illness I am grateful that I have had the opportunity to be part of the race to find better treatment and save lives. We know that 20% of people with Anorexia die prematurely. And even if it doesn’t kill us less than half of us will make a “full recovery”. The odds for Anorexia are worse than some forms of Cancer.

Despite this mental health still receives very little funding in terms of research which is vital if we want to develop new treatments and save lives. To not do so is (to put it bluntly) a seriously false economy when you take into account lost lives, earnings etc. In fact the whole of mental health research spend in the UK per year is just £115 million an average, 22x less than Cancer.

Part of my hope with this series of blogs has been to shine some light on mental health research and show you what it looks like to be a participant in a clinical trial and I hope it has at least been mildly interesting.

From here I’m not sure what I will do.

I am looking into a local charity which provides an Eating Disorder Support Group and I have been re-referred back to the NHS Community Eating Disorder Service (grudgingly but that is a story for another day).

Until then I battle on.

Thank you for reading my story.

Mental Health Research: More Information

If you’re interested in finding out more about mental health research or get involved check out organisations like MQ: Transforming Mental Health, The McPin Foundation and the brilliant blog Mental Elf.

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rTMS for Anorexia Nervosa: My Experience (Part 2 – Making tough decisions)

If you need to catch up or refresh your memory you can read Part One here.

In part two of this series of blogs I will be talking about actually getting into the trial and what was going through my mind during what turned out to be quite a long process. I do this partly for selfish reasons – I find writing cathartic, it helps me to make sense of my experiences and quiet my racing mind.

I hope that it might give researchers or anyone working or living with someone with Anorexia or any Eating Disorder, an insight into some of the thoughts that might be going through our minds when we start, or even just consider entering ANY treatment.

Finally I want people weighing up treatment options to know it is OK, in fact it’s normal to have mixed opinions, to feel pulled in different directions and to not only have doubts but to talk about them.

Enrolling in a Clinical Trial

Enrolling in the clinical trial first started with working out if I was eligible to take part in the first place. Research trials often have to have strict criteria otherwise results can be easily skewed. For the TIARA study I had to fill out a number of assessment forms, not unlike the ones you are given entering any mental health service.

There were a lot of questionnaires about my Anorexia, other health conditions and my history of service use as well as the usual demographic questions. On top of this, because part of the study included a number of MRI scans, I had to do a questionnaire to make sure it was safe for me to have the scans (after all it’s a bloody massive magnet so you really want to make sure there isn’t even the smallest fragment of metal in your body).

affinity-mri-closed-mri-scan

MRIs – big scary magnet machines that are surprisingly easy to fall asleep in

My God it’s like dealing with Vogons sometimes and I ended up having to go through the whole process twice in the end to find the absolute exact piece of information needed which ended up being exactly what we’d expected all along anyway. Oh and I paid for the privilege of finding this one piece of information about my own body, fabulous.

Sorry for the (admittedly ever present sarcasm) but when you’re a health tech geek and you know personal Electronic Health Records could be amazing and save so much stress and time it can be a tad frustrating.

vogon

Ok maybe the Vogon reference is a bit much but it’s certainly not a process I wish to repeat any time soon

Thankfully I was eventually given full medical clearance and we were off.

Pre-Treatment Concerns and Musings

Having spent six months attempting to get into the trial and banging my head against various bureaucratic walls along the way I hadn’t really let myself get excited or believe that it would actually happen. At several points I seriously contemplated giving up trying but was spurred on by the knowledge that it was the only way to try this treatment. Or any treatment for that matter as, bizarrely, after being discharged from services I’d been promised that, should I get into the trial, I would be given several outpatient sessions to support me – which didn’t actually materialise until after the trial had ended.

All of a sudden I had less than two weeks until my start date which would be a full on day of assessments, an MRI and my first session of rTMS. The new regime, going from being mostly sedentary for almost a year and hiding from the world – to commuting again every day and the energy it would use up was daunting.

I will hold my hands up to being a pretty damn anxious, highly strung and controlled person. I like to take my time to think about things before rushing in and this was something that it felt like I needed way more time to properly process before I could start. But I pushed myself out of my comfort zone because it felt “now or never” (it actually wasn’t, I could have pushed the start date back to January but after waiting so long I didn’t feel I could any longer) but that’s how much brain works, and I use the term “works” loosely.

I also figured I couldn’t possibly comprehend what I was about to undergo as it was completely unlike anything I had ever experienced before. I had watched as many videos as possible, read information pages, first person accounts.

As Ready As I Could Be

I had a LOT of conflicting thoughts, especially in the last few days before treatment started as is shown by several lengthy journal entries which allowed me to get down some of my fears and hopes.

My biggest fears were as paradoxical as my illness. I was terrified the treatment (and therefore another course of action, some hope, getting some form of routine back, being back “out in the world”) wouldn’t work.

I was equally terrified it would work and my Anorexia would be cured.

Because as horrendous and destructive as this disease is it feels safe, especially when my world hasn’t stopped shaking in some time and I feel like I am continually losing my footing. It is an insidious and disturbing constant in my life and I find it very hard to discern where I end and it begins. Truth be told I’m not exactly sure who I am without it and to face losing it – or at least to begin actively engaging in something that could result in it’s loss – was not easy to deal with.

Cue minor existential crisis

This part, typed into my phone while chain smoking and shivering in the cold, the night before the trial was due to start, stands out in particular:

I’m being handed an incredible opportunity by being able to take part in this trial. Without this study if I wanted this treatment it would cost me up to £10,000 or something ridiculous like that. Not an option when I haven’t been out of my overdraft in seven years. This is my only chance. I’m just so terrified of me (or my Anorexia, whichever one of us it is) sabotaging this. I know I am still reeling from being discharged against my will from mental health services not long ago and finding my feet on my own. Everything is so messed up at the moment too, is this really the time for this fight? I know I’ve been fighting recovery and in perpetual relapse mode. I don’t know if this treatment can work if I don’t want it to. And if that’s the case surely I shouldn’t be so selfish and stop this now, I’ll only screw up their results and then this treatment won’t get approval and people that actually deserve this treatment won’t get it..

If I put my psychology hat on it’s as clear as day looking back – I can see the major catastrophising for a start (I realise objectively obviously I’m not so important that a whole treatment could be made or broken on the results of one participant alone), a lot of black and white thinking (now or never) and a lot of guilt, shame – that I had this opportunity, whether or not I was “worthy” of it.

Of course now looking back I can see objectively that this is classic me behaviour when entering treatment and it’s played out many times before but as ever, it can be bloody difficult to see the woods for the trees when it comes to your own mental health.

When you share a body with this particular disorder for half a lifetime it knows your every weak spot and it does not hesitate to twist the knife when it sees an opportunity.

I had concerns too about how I would manage such a dramatic shift in my daily routine. I was lucky in that the trial was only 1 or 2 trains and only 90 minutes or so door which meant I only had to deal with a maximum of 4 a day (not bad for me!) and my Disabled Rail Card made costs much more manageable. However I still needed to be in London every week day for 18 sessions and an extra day for the final assessments and MRI. A few years ago that would have been nothing for me, I would have laughed at the ease when I was working full time, travelling in peak hours, commuting 4 hours a day on top of volunteering and being a carer. However a year out of work and mostly being told (and often made) to not “over-do it” my stamina has diminished considerably and even a trip a week into London can require days of recovery.

I was very aware that my devious disorder could easily use this as a perfect opportunity to ramp up it’s behaviours and pull my strings like a puppet. I would have opportunity, certainly, to over exercise and reduce my intake. My brain went back and forth trying to work out if my intentions were good, or at the very least “good enough” to do the trial.

In the end I decided to take the risk but make sure that I had back up in the form of peer support, my partner and family as well as calls with my lovely GP. I’m still not sure how well I did on this front, I know I pushed limits at point, tested waters I shouldn’t but overall I managed.

In part three: The part you’re all actually interested in – the treatment itself! Including the procedure itself, the idiosyncrasies and particulars of the trial and a few ridiculous pictures including my brain selfie.

What a year of unemployment has done to my mental health

It has been almost a year now since I found myself unemployed and unable to work due to illness. A lot has happened in that time, my world has been turned on it’s head and I have been left feeling emotionally bruised and battered. I’m not sure I can say with honesty that I recognise the person I see in the mirror all that much these days.

When my job ended (one month and one day before Christmas, a blow that felt particularly callous) I said I had chosen to leave for health reasons. This was not the case, in fact I was made redundant without any severance pay as the beautiful, brave social enterprise I worked for was  dismantled around me and then closed down.

However at the time I wasn’t able to say that, it wasn’t until months later in February I was able to tell people I had not left voluntarily. A hard thing to keep to oneself especially when you’ve spent over a decade in therapy learning and being encouraged to reach out for support when you need it-and I did need support badly. Even now I can’t really go into details. What I can say is that in the run up to the end the company had been whittled down to just myself and my boss and we worked ourselves to the bone under unbearable pressure to try and save what he had built, the literally award winning work we did supporting people with mental health problems.

Buddy App Digital Health Awards.jpg

A beautiful but bittersweet night at the Tech4Good Awards 2015 knowing it would be the last award we would ever win

Slipping and then free falling down the rabbit hole

I had already begun deteriorating earlier in the year as the pressure mounted which manifested in deepening anxiety, depression and as my Anorexia worsened I did literally begin to work myself to not much more than bones.

When the job ended I was devastated but I also saw it as a rare opportunity while I had the safety net of my parents roof over my head, to “work on myself”, “devote myself to recovery” and “give myself a break for the first time in years”. Noble goals.

I think the biggest thing I have learnt about myself this year is that I am naive and I have definitely learnt that the hard and painful way.

I naively thought I had lost enough and things were as bad as they were going to get. After all the previous year I had been forced to move out of the lovely little flat I rented with my partner, back in with my family due to a torturous neighbour situation which ended in police intervention. I had lost my home and independence, now my job, income and health. It couldn’t get worse right? Fool.

In the immediate aftermath of the job loss there was a genuine grief, not just for what I had lost but for my colleagues too, the business itself, the way of life which was difficult but something I relished. Commuting daily into London, helping people, travelling all over the country..

I thought that some time off (planning to get back to work in the new year) would give me perspective but instead I fell into the oldest trap my mental illness lays, I fell too deep into my own head. Without structure or an incentive to fuel myself the Anorexia did not waver, instead it grew and I shrunk. I chased a number, a grotesque and arbitrary figure that has been stuck in my head for over 12 years and I didn’t just reach it I went lower and it terrified me but I could not stop even when my own heart was threatening to quit on me.

imag0904_1

This, if you can believe it, is the more “discreet” ECG which I wore for a week at one point 

It terrified the people around me too. When I’m ill it feels like I’m under water, I can’t concentrate properly on what people are saying because everything sounds distorted and I feel a strange numbness – only reinforced by being so cold I am often physically numbed. Yet it still feels like a needle being stuck into your heart when friends see you and burst into tears, or when you realise your boyfriend is scared of holding you too tight and breaking you. I could see objectively so clearly the absolute destruction my eating disorder was doing but it still felt like the only sane reaction to my insane brain in my suddenly upside down, stripped back, broken world. Suddenly I found my whole life given over to battling the illness, believe me it didn’t happen like it does in films with a spiritual retreat and sudden Eureka moment but with brute force. At one point I was having five appointments a week – group therapy, individual therapy, check ins with the GP, blood tests and ECGs. I saw psychologists, psychiatrists, dietitians, nurses, you name it, I tried it. I was asked on multiple occasions by clinicians if I thought I needed to go into hospital. A stupid question to ask a perfectionist, people pleasing Anorexic. Especially when consenting meant a bed in the “nearest” unit which is 400 miles from home (a shocking situation in itself). I couldn’t leave my partner, my family and friends, my whole support network and go to another country for months on end – how could I say yes to that regardless of how ill or far gone even I could see I was?

In January 2014 I did something I never usually do; I made a resolution, that I would not put myself through the hell of another winter with Anorexia. If you’ve had this condition you know winter is torture, your whole body feels cold every minute of every day, unable to generate any of it’s own heat you sit on radiators until your clothes melt without you noticing, Raynaud’s becomes so bad you wash your hands until water you don’t realise is scalding your skin. It is a season of wearing three layers of leggings and tights under your trousers and still shivering. In January 2015 I did not make that same resolution but I still hoped there would not be another. In January 2016 I made no such resolution, there seemed no point.

raynauds

By far the worst year ever for Raynaud’s – I’ve literally only had about two weeks respite even with a good summer

I ended up in A&E until 3am because of re-feeding syndrome, I self harmed properly for the first time in six years, so much time down the drain in one motion. Suddenly I couldn’t deal with phone calls any more, I couldn’t deal with people or being outside if I didn’t have to, I was endlessly broke, my world shrunk to the four walls around me and bland, badly lit waiting rooms as I cancelled every plan I made and withdrew further and further. My only respite were the moments of happiness I had with my family and partner who have bent over backwards and broken themselves to fix me this past year. That and a wonderful group of people I met through group therapy who I have thankfully stayed in contact with and meet up with for peer support (which for us involves a lot of coffee and much needed ranting).

At some point I ended up applying for benefits, something I had pretty always managed to avoid. Despite being eligible in the past through pride I did not apply despite my Dad repeatedly pointing out he had paid taxes for over forty years so that if anyone, especially his own flesh and blood, needed support, it would be there. Seeing no other option I applied and jumped through the hoops, seemingly endless loops put in front of me by the DWP. There is a blog in the works about that experience.

Sometimes I find myself wondering if I can put a cost on the emotional pain, the stress and anxiety that they have put me through and if I did would it add up to more than the meager sum I receive in pounds sterling? I cannot count the number of panic attacks I have endured, the volume of tears of frustration spilt. As someone who is very ill the benefits system seems geared to heighten any pre-existing anxiety or paranoia you may already have. The threatening brown envelopes, arbitrary demands and the ever looming fear that your only means of survival could be stripped away at any point wears you down. In the three weeks that I waited for a face to face assessment I lost half the weight I had managed to gain in the previous six months and the assessment itself left me unable to leave the house for weeks and knocking back Valium just to get out of bed. In the latest saga I now owe £700 I most definitely do not have because of an admin error. This year has felt like one disaster after another.

Over the last few months the outside support has dried up and I am increasingly facing these endless hurdles I face with only my exhausted family to help. Group therapy ended, I saw that one coming at least and could prepare myself. Then I found out I was almost at my allocated number of therapy sessions. When I started with this service I was told I wouldn’t be discharged until my BMI reached a certain target which, although terrifying, was healthy, I was told therapy could be extended if necessary. It wasn’t. Despite my weight not changing and being dangerously low, sub-emaciated for over a year and still the weight where hospital had previously been recommended, despite behaviours popping up like a deadly game of whack-a-mole, despite my failing health and my desperate plea for help I was discharged back to my GP. Now I find myself with 10 minutes every few weeks if I can get an appointment. I have lost my outlet, my safe space and I have been discharged back to primary care sicker than when I entered services.

In a desperately cruel twist of fate just as my therapy was ending and I was trying to process that loss my partner’s grandfather passed away. Grief careered into our lives like a bulldozer with no one at the wheels, ripping through my partner and his family and all I could do was watch helplessly and try and do what I could to ease the raw pain. Futile. I told everyone involved in my care that I was deeply unsafe and at my most vulnerable, that I didn’t know how or why I was meant to cope with all this without help. I was told by clinicians I “would probably get worse after discharge” but “it’s okay, you can always be re-referred”. I’m not sure I would want to go back now though, it feels like that window has closed, I feel more damned to this disease than ever.

So here I find myself, a year on. I always used to half joke that if I ever stopped (running from education to one job after another, always commuting, travelling, rushing, trying to save the world) I wouldn’t know how to start back up. It’s not so funny now.

The much wished for, dreamed of recovery seems further away than ever, my weight at rock bottom, my health precarious and no light that I can see anywhere in this tunnel. Although I am told otherwise I feel useless and a burden. The system does a lot to back up your paranoia and to push your self esteem down further. The endless “scrounger” rhetoric gets through even the thickest skin. All the logic I have at my disposal, my knowledge that I am too ill to work, that I have worked, have contributed, always paid taxes, fizzles and disappears in the face of brown envelopes and the culture of fear the Department of Work and Pensions perpetuates.

I know I will get back on my feet, I am, despite all of this, one of the lucky ones as I have a family that supports me, a roof over my head, a partner, friends (those I haven’t managed to push away) including a wonderful group of girls I see most weeks for moral support. What is hard is not knowing when this will come, when life will start getting better. I feel like I haven’t been able to catch a break this year, positives slipping through my fingers like sand or just out of reach. If the word desperate has come up a lot in this post it’s because I am desperate, for change, for a glimmer of hope, for a break or turn of fortunes. I know I am not this shell of a person, I know I have so much to give and all I want is to go back to work and the real world and be well.

2014: My yearly review

Well it’s been another whirlwind of a year, it seems to have flown by at breakneck speed and all of a sudden it’s the end of 2014 and I’m wondering what I’ve actually done this year.

For once it’s been no surprise that the year has flown, it’s been busy after all and I’ve done quite a lot. In fact this year I’ve not only started a new job but also moved house and been on the holiday of a lifetime. And that’s on top of my usual way more than 9-5 with some volunteering and a lot of campaigning thrown in for good measure.

So here’s a bit of an overview of my year which will be followed by a blog summing up some of my heroes of 2014.

January

2014 didn’t get off to the best start as I ran around the town I was living in and London desperately trying to get ahold of some medication. Being on long term medication feels like second nature after all the years and it does go along way to levelling me out and keeping me functioning but definitely has it’s downsides. Being on a relatively unusual medication and trying to get a GP appointment near Christmas and while working full time is not a good combination and I still manage to mess up my planning from time to time.

It did get considerably better thankfully, January was the month my Chrissy B appearance talking about growing up with mental health issues was aired.

chrissyb show

I also found time for my parent’s annual Burn’s Night party at the end of the month which was, as usual completely tartan and tasteless and a good way to celebrate the end of a very long month.

February

In February I finally got a chance to do Mental Health First Aid training with colleagues from NHS England. I think it’s great that my employer gave us all the chance to do this course and, upon competition, publicised the fact the office now had both physical and mental health first aiders. As many mental health issues surface or are even caused by work I’d love to see more workplaces taking this step. It was also an opportunity to bond with colleagues, many of whom opened up about their own experiences.

I also had the opportunity to co-facilitate a special online talk for the sadly now defunct MindFullUK during Eating Disorder Awareness Week. Having spent a few years now doing something similar for YouthNet on a regular basis it was interesting to try this method with a new group of young people.

March

As the NHS Expo was held in Manchester this year I had a great excuse to start the month of March with friends Rachael and Claire and their assortment of rats.

March was also pretty amazing in that I was given a regional award at the Vinspired Awards in the “Most Outstanding Social Entrepreneur” category for my work on the WellHappy app. I even got to attend a fancy awards ceremony at the 02 with my partner Ryan, parents and colleagues from myhealthlondon.

Boyfriend looking quite proud don't you think?

Boyfriend looking quite proud don’t you think?

April

In April I had the opportunity to speak to the Clinical Senate at the Kings Fund about young people, mental health and technology. Even though it’s a talk I’ve given so many times I could probably recite it in my sleep I received an inordinate amount of praise for this one. It got me thinking about the audiences I tend to speak to; usually a group of people who have signed up because they already have an insight and interest in what I’m speaking about, in other words, preaching to the converted. This is something that’s troubled me a lot this year; how do I reach a broader audience including some of the sceptics and naysayers?

I had the opportunity to learn a huge amount when I received Dementia Friends training from Katie Nichol and since then have, unfortunately, had the opportunity to put this learning into practice. I’d recommend the course to everyone as Dementia is something we will all be affected by at some point in our lives.

I also got a chance to attend the launch of the YoungMinds HedMeds project which had been something of a labour of love and personal interest for me. Along with a dear friend, Annabelle, we opened up the event and even preceded Jo Brand who very kindly called us a hard act to follow!

Some of us with Dr.Ranj

Some of us with Dr.Ranj

May

May was a big month that began with me presenting at the Patient Information Forum conference alongside Macmillan.

This was followed by an interview for my current role at BuddyApp..the beginning of big changes.

Then the biggest media appearance of my life, a live slot on Newsnight to talk about self harm with myself and Tanya Byron taking on the legendary Jeremy Paxman. I was approached by YoungMinds and asked if I would like to appear..only a few hours before broadcast. It was probably one of the most surreal moments of my life to be sat in the BBC green room and having a chat with Mr.Paxman.

Kat Cormack on Newsnight

I am very used to being on the receiving end of calls for help, queries, comments and young people generally asking for help and advice but this has increased by an order of magnitude since my appearance. As I may have mentioned these messages usually start with the same phrase, “I’m really sorry but I don’t know who else to talk to”. While I’m glad that I’m seen as approachable it does sadden me that young people still struggle to find people to trust and open up to and how few positive mental health role models that they can easily access there are.

June

In June I received some good news about my health when I learnt that, by some miracle, my bone density is still at a reasonable level, certainly better than I could have hoped for. Throughout the year I’ve had countless run ins with the medical world from a personal perspective, thankfully most of them positive.

June was also the month where I prepared myself for leaving the NHS and my lovely team at myhealthlondon. This was bittersweet, I was going on to a fantastic new role but leaving so much behind. Having worked in the NHS for 18 months I learnt so much about what happens “on the inside” and it gave me a really helpful perspective for when I’ve got my service user hat on and am wondering why things aren’t happening the way I had hoped in my treatment. I also met the most amazing people during my time working for the NHS, too many to name here, and thankfully I’ve managed to stay in contact with most of them.

myhealthlondon team

I’ve argued for a long time that the people who work for the NHS are some of the best people you will ever meet, their kindness, compassion and work ethic can be incredible but they are bound by a system that can be slow, bureaucratic and seemingly impossible to navigate so it’s no wonder things don’t always work.

Something that really fascinated me during this time was the way the NHS is perceived by both the general public and the media.

I feel as though people see the NHS as one big, monolithic organisation, especially when they are commenting on their experiences, “The NHS did this/didn’t do this” etc. This is a serious misunderstanding as the reality is the NHS is a jigsaw (and the pieces don’t necessarily fit well), made up of hundreds of different providers and a huge number of staff. In fact the NHS is the biggest employer in Europe and can be almost impossible to navigate..even if you work in it.

Throughout my time in the NHS we also noticed a change in the media’s attitude towards us. It got to the point where everyday there was a new story coming out, almost all negative and this has a huge effect on staff morale as you can imagine. And yet when we reached out to the media to get good news stories they were passed up time and time again. Bad news may sell more papers but it’s disingenuous and can be downright dangerous in painting an unrealistic picture that scares people off and causes them to lose faith in what is still an incredible British institution.

Obviously I have had a huge range of experiences having used NHS mental health services in particular on and off for a decade. Some have been great, some terrible but it’s been a spectrum and I can’t just focus on one end. I also look at countries like the USA and think about how terrifying it must be to have to pay so much for what I would argue is a basic human right; the right to life. I look at my friends who have poor or no insurance and gasp in horror at their medical bills festooned with zeros and wonder what my own care has cost and wonder where I would be if I had been born on that side of the pond.

July

On the 1st of July I started my new role at BuddyApp. This has been such a huge but positive move for me. I left one of the world’s largest organisations to go work at a start up with less staff that I could count on my fingers and of which I am the only female so that was quite a shock to the system.

I can honestly say that working at Buddy for the last six months has been a pleasure and I have particularly liked working in a small, dynamic team and the chance to work on the edges of the NHS, working directly with front line staff.

There have been challenges certainly, getting the NHS to buy into and embed something innovative is a slow process, definitely more of a marathon than a sprint, but it’s worth it. Because when it does work, we help patients get better and support clinicians in doing their job, what could be better?

So July was mainly spent settling in, meeting colleagues and clincians for the first time and a few events thrown in for good measure. My favourite was probably the NHS England Youth Forum’s “Celebrating Positive Youth Mental Health” event which I attended with Miranda Bunting whose blog you can read here.

August 

In August I took part in another Cormack family tradition; Cropredy festival. Big events can be a challenge for me especially when it comes to my anxiety but last year I decided that this would be the one weekend every year when the mental health issues would just have to sit in the backseat and sulk. This year I kept this resolution going and had a great time as you can probably tell from this picture of me and my brother.

Cropredy festival

Sadly August was somewhat marred by ongoing issues in our housing situation, most notably problems with our neighbours. Having moved into our flat two years previously and built a wonderful home for ourselves, my partner and I found the last year unbearably stressful due to issues next door which culminated in a police raid-a pretty traumatic experience for anyone.

For me a home should be somewhere that you feel safe and by the time we decided to get the hell out of dodge this was no longer the case. It has been a huge step and at times a bitter pill to swallow but, for the sake of our sanity, we left and moved in with my parents.

After 7 years away from my hometown it’s obviously taken time to adjust but I’m lucky that I still have some great friends in the area and above all a ridiculously supportive family who have taken in both myself, my partner and our ridiculous and noisy cat. It makes it easier knowing that this is a temporary solution and I’m grateful to have this time to settle, relax and rebuild.

September

September was dominated by the holiday of a lifetime as me and my family embarked on our Trans-Siberian Railway adventure. There’s definitely an entire blog post to be made out of this at some point considering we crossed China, Mongolia and Russia in 16 days and saw and experienced so much I don’t even know where to start. As someone who commutes 5 days a week as it is the idea of being on a train for the lion’s share of a fortnight initially didn’t appeal much but believe me the tube and this experience just don’t compare.

Rocking my YoungMinds Vs tshirt on the Great Wall of China

Rocking my YoungMinds Vs tshirt on the Great Wall of China

Some highlights include seeing the Terracotta Warriors, standing on the Great Wall of China in my YoungMinds Vs tshirt, drinking the water of Lake Baikal and being chased around China by people who had never seen redheads. I think my brother, all 6 foot of his bearded, tattooed and pierced self was a bit much for some of them. My brother was a bit bemused by this too, as well as many of the tshirt slogans we saw.

A confused James

Upon my return the rest of September was mostly spent given presentations at The Kings Fund, Westminster Briefing (The role of technologies: what young people want from services today) and attending the NHS AGM and NHS Citizen event where I may have caused a bit of a stir by wearing a protest t-shirt from 38degrees on stage with the NHS board of directors..oops..

October

In October I went to the launch event for the London Health Commission Better Health for London report which was held at the House of Lords and involved a lot of alcohol (how the other half live!).

The highlight of October and in fact one of the top events I took part in during 2014 was CLASP’s Walking Out of Darkness event. Over 300 of us descended on London for a 10 mile walk to raise awareness and funds for mental health and in particular, suicide. We raised a staggering £30,000 and are already planning the next event, you can join us on May 16th and raise money for whichever mental health charity you choose.

claspwalk

I also became a trustee for CLASP and have had the pleasure of working with the CEO and founder of CLASP, Kenny Johnston.

November

November truly felt like conference season was underway with me speaking at both Health 2.0 and HANDI Health Apps during EHILive about Buddy app including my experiences of using Buddy in my own treatment.

I also filmed a short piece for Techforgood.tv which you can now see here.

On top of a lot of travelling during the month I also found time to attend the Social Enterprise UK Awards around the corner from our office in Old Street. It was great to do something fun with my colleague James Ryan and I loved the atmosphere, social entrepreneurs in the UK are a fairly close knit and very supportive bunch and I’ve really enjoyed entering this world in 2014.

Social Enterprise UK Awards

December

Far from winding down towards the end of the year it feels like there was even more going on than usual during December.

I gave a presentation at UCL to Clinical Psychology students about the pros and pitfalls of peer support and social media for people experiencing mental health issues. During this I was reunited with the fabulous Tanya Byron who I shared the screen with during my Newsnight appearance. I also had the chance to have a sneaky drink with the lovely Grace who I know from VIK days, I think the students were a bit surprised to see me in their bar after the talk but it was the last day of term so I blame getting caught up in the atmosphere!

I also sat down with young people from YoungMinds Vs project (the next and very exciting generation of activists, definitely worth checking out) and Norman Lamb to discuss youth mental health, you can find more information from our afternoon with the minister here in a great blog written by two of the young activists.

On a personal note the most touching experience I had this month was helping out one of my role models Monique-Amy Newton in her annual “Help the Homeless” event. Sadly I was only able to attend one evening but we gave out clothes, food and toiletries to a large number of people both on the streets and in hostels. Their gratitude for a bowl of soup or pair of gloves was humbling and really put my own life into perspective.

Helping the homeless at Christmas

TL; DR: Overall it’s been a whirlwind of the year. I’ve had some of my greatest experiences and biggest challenges. I’m very thankful to have some time off between now and 2015 when it all starts again. Hopefully onwards and upwards to better things.

Thank you so much for everyone who has supported me this year, it has meant the world. I’ve stayed in contact with some great people and met some truly inspirational movers and shakers in the health and social care world. It’s people like these that give me the courage to keep going, keep standing up for what I believe in and keep fighting the good fight.

A particular thank you to my family, the never ending support of Ryan Jackson and a particular thanks to two ladies who have had me both in tears of laughter this year, founder of Diabetics With Eating Disorders (DWED) Jacq Allan and Kat Pugh who runs the wonderful #EndTheWait campaign for earlier intervention in Eating Disorders. I’m very lucky to be surrounded by powerful, disruptive, caring female role models.

Talking & Walking Out Of Darkness

The following post is a write up of the speech I gave on Saturday at the first ever Walking Out of Darkness event. Some of it may be slightly different from what was actually said on the day; mostly because I got the most emotional I have ever been giving a speech!

claspwalk

Hi everyone,

My name is Kat and I’m here today because when I heard what Kenny was trying to achieve this weekend, I had to get involved.

These days I’m very open about my mental health, so I’m happy to share with you that I’m not okay and in fact I haven’t been okay for a very long time.

I’ve used mental health services on and off for a decade and probably have enough labels to keep the post-it note industry alive. I’ve also come far too close to the edge myself and there were times, certainly, when I couldn’t bear the thought of being here for another day.

Looking around today, I can see a fair few familiar faces and, given what we’re all here for, I’m pretty sure I may be preaching to the converted, but let’s give it a go anyway.

Even for me this has not been an easy speech to write which these days is a novel experience for me. Over the last six years I have dedicated a large amount of my life to campaigning around mental health issues including Suicide.

I have spoken to countless individuals, and at events around the country about my experiences and those of my peers. Hell I even took on Jeremy Paxman live on Newsnight earlier this year to talk candidly about my experience of Self Harm and what I think needs to be done to help other young people suffering in silence.

But Suicide, even now, is something of a taboo within a taboo and not something that I can easily find words for.

You’ve probably all heard the statistic, that one in four of us will be affected by mental health issues. However I’ve often argued that it’s four in four. Because one in four doesn’t take into account the distress and despair felt by friends and family when a loved one is struggling. And yet many do not, cannot talk about it.

I used to be one of them. Even though I’ve been ill most of my life it wasn’t until six years ago, aged 19 that I “came out of the mental health closet”.

I was lucky enough to stumble across an amazing charity who changed, if not saved my life. The charity in question was YoungMinds and without their support there is no way I would be here today giving this talk. YoungMinds helped me to find my voice and start standing up to stigma. I joke that they gave me the activism bug, but more seriously, they helped me express the injustice I had long felt and gave me a platform to actually do something proactive.

In fact some of my friends from YoungMinds are here today so if you see anyone wearing our tshirts come up and say hello. I’d also urge you to sign up to our mass movement for change, YoungMinds Vs as we attempt to fight the pressures faced by young people across the UK.

I now work for a mental health start-up called BuddyApp. We’re a small team and we work with NHS services up and down the country to help people of all ages have a better experience of treatment using something strikingly simple and accessible; a text message.

Because I am so open I am often seen as one of the more visible advocates for service user voice in the mental health community. Because of this a lot of people reach out to me. It happens, sometimes several times a week and the sad thing is the conversation always starts the same way:

I’m really sorry but I don’t know who else to talk to

Now I’m glad that people reach out to me, don’t get me wrong. However it saddens me that, even in 2014 in a supposedly enlightened culture, there aren’t more of us willing to stand up and speak out. I wish my friends and the acquaintances and strangers that message me don’t have more options.

So everyday, sadly, I see the human cost of distress, of mental illness and of suicide. And sometimes it feels to me as though it’s everywhere, just hidden behind a thin veil. Perhaps if we stopped and looked around the crowds we would see that not everyone manages to keep their mask on, perhaps we could take a bit more time to carry out some random acts of kindness.

Be kind, for everyone you meet is fighting a hard battle.

When it comes to Suicide, we can talk about statistics until the proverbial cows come home. I could rattle off numbers and tell you how many thousands died last year.

I could tell you that the biggest killer of men aged 20-49 is not road traffic accidents, it’s not Cancer and it’s not Heart Disease..it’s Suicide.

But I guess, and I can’t believe i’m quoting, or rather misquoting this person, but as Stalin almost said:

The death of millions is a statistic. The death of one man is a tragedy.

What makes us sit up ad think, what really pulls our heart strings and makes the numbers feel more human, what we sadly often lose, is the individual tragedy.

I’m guessing that many of you, like me, are here today because you have lost someone you love or have come too close to taking those final steps for yourself. There is no pain like it, I know.

I was 18 when I first lost someone to suicide. Her name is Casey Brooks. She was a charming, funny, caring girl with friends all over the world (we met through an online support group). Although I never met her she provided me, and many others with support in our darkest hours. And yet, in hers, that last time, she didn’t reach out.

Casey Brooks

Casey didn’t think much of herself, a common problem for people like us with mental health issues. I wish she had truly understood the love and the laughter she brought to people’s lives and what the absence would mean. I wish could see the effect her leaving had. I don’t think she could have guessed that all these years on her online memorial would have almost a thousand members. I wish she knew that her parents never stop talking about her, or about the work they’ve done in the last few years to help save other young lives. Her dad has also written this book which I would recommend.

Since that fateful day I have come far too close, far too often to losing far too many others.

Three weeks ago I received a text that made my blood run cold. It was one of my dearest friends, who I have known and cared about for years and she was saying goodbye. I think my heart stopped beating as I read those words.

I know she’s come close before, I’ve held her as she wept, whispered supportive words down the phone at 4am when everyone around me was asleep, I’d do anything for this girl. But this time felt different. I guess after all these years being involved in the mental health community, and all my safeguarding experience, you start cultivating a pretty accurate gut reaction. It didn’t help that I was also several hundred miles away and couldn’t do what I desperately wanted to, which was to hold her and keep her safe until the storm passed.

I’m so happy to be able to say that she’s still with us but it breaks my heart knowing how close she came and how little she felt she had left to live for.

And i’m proud of her for telling me, I am so grateful I didn’t lose her that night.

When we are struggling and feel alone, we need the courage to reach out, to say this is not how my story ends. And appropriately for today, if we see that hand reach out, we must have the courage to clasp it and hold on, as long as it takes.

I want to thank you all for joining us today Walking Out Of Darkness; blessed are the cracked for we let in the light. I’d also like to think Kenny, the CEO of CLASP, who has worked so incredibly hard to bring us all together today.

And I will leave you with this quote from Ben Okri, which struck me as apt for today;

The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and be greater than our suffering.

Thank you

What are you doing next weekend?

Me proudly sporting my CLASP jacket
What are you all doing next weekend? I ask this because as you probably know next Friday 10th October is World Mental Health Day.
This year I’m doing something special and I would love it if you could join me, if not in person then in spirit, Walking Out of Darkness to raise awareness of mental health and in particular suicide.
The walk has been organised by CLASP, an amazing charity which has been started by a pioneering man named Kenny who has himself, been affected by suicide, having made an attempt a few years ago. Later this year they will be launching a helpline for people affected by suicide or suicidal thoughts including friends, families and carers which will link up with 111 and be an amazing resource for people across the UK.
The walk is 10 miles but don’t worry, if you don’t feel up for it you can still join us on the day and show your support. There will be stalls to browse with information too. You will be in good company with several thousand others including members of the NHS, supporters, charities, Department of Health, British Transport Police, MPs and celebrities. Not only that but some of my BuddyApp colleagues will be joining me and we will have a Buddy stall on the day.
Sign up here for just £10. If you use the code “Kat10” the money will go to the charity of my choice, DWED.
You can also sponsor me directly, I’m raising money for the charity DWED (Diabetics With Eating Disorders), a charity close to my heart. Type 1 Diabetes with a co-morbid Eating Disorder is a little know, much understood condition although we do know that females who are type 1 have twice the risk of developing Anorexia or Bulimia as their peers and as many as 40% of 15-30 year olds regularly omit insulin.
Every little bit helps, so please donate a couple of pounds or share with others.
If you can’t join us please do tweet your support using the hashtag #WalkingOutOfDarkness and encourage your friends, family and colleagues to do the same

My recent talks about digital youth mental health

Hello readers,

I must apologise for the lengthy gap between my last blog and this one. My blogging activity (or lack thereof) is directly linked to the amount of time I have spent running around working, speaking and campaigning so as you can imagine I’ve been very, very busy recently.

I will be following this post up with a blog on what young people want when it comes to mental health support, and in particular what role they want technology to play. It’s something I care about passionately and have dedicated much of the last six years of my professional life to.

There have been two events I’ve spoken at recently that have acted as the catalyst to the aforementioned blog which I thought I would summarise to give you all some context and an update on what I’ve been up to recently if you haven’t been following my Twitter account.

The Kings Fund:
The Art of The Possible: How will health and care be transformed in the age of information sharing?

This first event was a roundtable discussion, it was incredibly popular as you can imagine given the title and by the end it was standing room only. It heartens me that there is such a clear, strong appetite for discussions of this nature.

It’s also one of the first events I’ve been to in a long time where I knew next to no one- often I feel I am just preaching to the converted so this was a chance to share my experiences and ideas with a new crowd.

We adhered to Chatham House Rules during the event so I can’t divulge who said what but I will say that it was very interesting how many people started their contributions with comments along the lines of “I could never say this at work..”. This suggests to me there is still a lot of work that needs to be done to bring digital to the masses in the health sector as well as a fair amount of resistance to new ways of working which is something I certainly experienced while working for the NHS.

I gave the opening talk, sharing my personal experiences of using mental health services for the last 11 years and being a digital entrepreneur and activist. This involved a quick run through of my own health journey from the age of 6 when I became symptomatic right up to where I am now aged 25.

I spoke about how much the internet and the support I received online not only helped but probably saved me, especially during my teens when I was at my lowest point. If you’ve heard me speak before you will know I have spent a good 12 years using online support such as chat rooms, message boards and in the last few years social media to provide and receive advice, information and very importantly peer support.

If you’d like to read more I strongly recommend you read this article by Dr Roger Stedman who attended the event which has the brilliant title; Time For a Digital Citizens Revolt.

Westminster Briefing: Improving Mental Health Services for Children and Young People: Identifying Need and Targeting Support 

Yesterday I found myself on a list of speakers which pretty much sums up my dream team- three incredible women who I’ve had the distinct pleasure to work with over the last few years:

Geraldine Strathdee- When I first started working at the NHS a few years ago everyone, and I mean everyone that had anything to do with mental health said to me, “Kat you have GOT to meet Geraldine, she is your kindred spirit” – I was not disappointed.

Geraldine has some serious clout as National Clinical Director for Mental Health in England but what I find truly inspirational about her is that she’s so down to earth and when it comes to mental health she just “gets it”. She  works, often 18 hours a day, always seven days a week, to try and improve mental health services. She is a passionate advocate for service user voice and involvement and I think she, against all odds, bringing about real change in the system.

She’s on Twitter and always open to ideas, comments and suggestions- in particular if you know of good practice happening in mental health please tell her so she can share the learning. She also blogs and you can find some of them here.

Lise Hertel- Lise is one of most inspiring and driven GPs I’ve ever met. She’s based in East London and also works for Newham CCG. It has crossed my mind on more than one occasion that I should probably move to her catchment area so I would never have to worry about having a bad GP-mental health experience ever again!

Lise is very forward thinking and a real believer in innovation and technology. As a service user, before I met people like Lise and other CCG mental health leads in London the idea of GPs commissioning mental health services scared the **** out of me because of my many awful experiences previously. However many of my concerns simply evaporated when I met people like Lise. I think, as much as there is a lot of risk, there is also a huge opportunity in GP led commissioning for mental health and will be watching closely to see what happens in the next few years.

Sarah Brennan– Sarah is the CEO of a charity you’ve all heard me rave about before: YoungMinds. I got involved in the organisation six years ago in January and I can honestly credit them with entirely turning my life around and giving me purpose.

Before YoungMinds I didn’t talk about my mental health offline, I didn’t wear short sleeves and I lived essentially in the mental health “closet”. YoungMinds helped me find my voice and gave me a platform to share my experiences, build my confidence and also introduced me to a group of young people who are essentially now an extension of my family.

I’d strongly recommend you:

Sign up to the YoungMinds VS campaign which has five areas in which we want to fight the pressure experienced by young people and create a mass movement for change.

Sign the YoungMinds petition to stop cuts to children and young people’s mental health services– you will be in good company as over 16,000 have already signed.

The event

I did my usual talk, very like the one I gave to the Kings Fund around what young people want from mental health services and also gave five examples of really great digital tools and services currently available including the amazing organisation I work for; BuddyApp..this will be the subject of a blog coming shortly.

We also heard from the awe inspiring work of Highfield Community Primary School in Sunderland who, through work with Place2Be have become a real beacon of hope to the children, parents and community they work with. As someone who had an awful time with mental illness at my own school growing up I really wish I had a Tardis so I could do my time again and attend this school which really prioritises the health and wellbeing of their pupils.

If you have any questions or ever want to pick my brains when it comes to technology and youth mental health please don’t hesitate to contact me, either through my twitter account or by email at kat@buddyapp.co.uk