A little bit of me and Buddy in The Times

I recently had the pleasure of being interviewed by Phil Robinson for a piece in The Times around mental health apps and my own experience of working for and using Buddy in my own treatment. Here is a short extract from the piece – you can find the full article linked to at the bottom of the post.

Phil Robinson,

I was staying at a five-star hotel in Greece when I broke down. I couldn’t move or speak; I wept for no reason. So I was flown home, diagnosed with depression and sent to a private psychiatric hospital, where therapists began rebuilding my mind.

For weeks, with groups of almost broken, funny, and desperate humans, I attempted to learn the tenets of cognitive behavioural therapy (CBT). I didn’t want to be stuck in a room with a bunch of people who had, like me, flunked life, but it saved me. Beyond anything that was said in that room, I was sure that I wasn’t alone.

For people suffering from depression today, access to therapy is no longer a foregone conclusion. But whatever your problem — paranoia, body dysmorphia, BPD, OCD, PTSD — there’s probably an app for it. And this month, the health and life sciences minister George Freeman launched a £650,000 innovation prize to promote the creation of a new generation of mental health software.

So far there are 26 apps (11 are free) recommended by the NHS as part of a drive to automate healthcare, relieve waiting lists for talking therapies and reduce the £100 billion that it spends on treating mental health patients every year.

One, called Buddy, has been used by 12 NHS trusts and has been used by more than 17,000 people. An SMS and browser-based diary and communication tool, it’s designed to be used in conjunction with seeing a therapist, says Kat Cormack, who is Client Director of Buddy but also uses it “in my own treatment”.

I get a daily text from Buddy,” she says. “‘Hi Kat, Buddy here, how are you doing? Rate your day from 1 to 5 and tell us how you feel!’” As well as rating her state of mind, she can add notes. “It’s connected to my clinician, so I can tell her things that I might not be able to say looking her in the eye. I can confess my darkest secrets.

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By analysing the data, a clinician can monitor a patient’s progress or use it to aid diagnosis. She cites a woman whose long-term depression was revealed to be hormonal after her Buddy data was found to correlate with information from another app tracking her menstrual cycle. “She changed her medication and is now free of depression for the first time in decades.” 

When I was being treated for depression in the Nineties, I saw my therapist once a week, my psychiatrist once a month. I can see that apps present an opportunity to collect evidence to hasten recovery, yet the ability of most apps to deliver a quality service to vulnerable people remains questionable.

Away from the NHS’s recommended apps page, there are thousands of apps dealing with every condition. In most cases their publishers are as obscure as the evidence of their clinical efficacy. At one end of the spectrum you have apps such as MoodKit, the product of the experience of two respected doctors; at the other you have apps such as Fukitol, which is named after a Robin Williams joke.

The industry is still in its infancy and evidence from clinical evaluation trials is scarce. However, in 2013, a study of Viary, a Swedish app for depression, found that 73.5 per cent of patients who used the app were no longer considered depressed after eight weeks and needed half as many therapy sessions as those who engaged in therapy without it.

The result offers a glimpse of why these apps have been seized on as the holy grail of mental healthcare: promoted as a form of triage, they enable health services to push users to take responsibility for themselves and to cut face-to-face therapy.

Cormack is aware that digital tools such as hers are used by people who are frantic for NHS counselling but have not received it.

 The waiting list for an assessment can be up to a year. That’s why people are using apps — they are either a stopgap when you are on a waiting list, or if the NHS has told you that you don’t meet their criteria. People get desperate. We are losing lots of low-cost counselling services because they can’t survive in this financial landscape

When I was at my lowest, between 1998 and 2002, it was always possible to see a counsellor at my local surgery. In 2015, a GP refers people like me to IAPT, an acronym for the suspiciously titled “Improving Access to Psychological Therapies”. It’s a stepped care program that begins with an assessment by phone from a “psychological wellbeing therapist”. Those assessed to have a condition that is interfering moderately with their lives are given a computerised CBT course to complete at home.

If this magic bullet fails, they are given self-help options, or signed up to a 100-person psychoeducation class (like speed awareness courses for people with depression). If you still stubbornly fail to regain your mojo, you can join a year-long waiting list for talking therapies, during which time you can use one of the many apps. The hope throughout this process is that patients simply disappear from the waiting lists as cured, or over the worst of it.

Therapy via healthcare app might seem like treatment purgatory, but anecdotal evidence from practitioners suggests that apps for depression and anxiety work particularly well with certain sectors of the population, such as the military and teenagers, who are notoriously reluctant to talk about emotions.

This is just an extract, the full piece on The Times website (subscription service).

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I’m trying to come to terms with Chronic Illness

We are lucky to live in a world where most conditions are treatable, and as many slogans go “beatable”. For many of us our experiences of illnesses have been followed by effective treatment leading to remission. If I have a cold or flu I know there are tablets I can take that will make it go away. If I break a bone I know a cast will help knit the bones back together and leave me, hopefully, with full function in that limb again. This is a model that certainly in the UK the NHS and ministers understand.

What then if your condition has a murkier prognosis? What if there is no cure or a high chance of repeated relapse? It’s not only then a struggle often for the treatment and management needed but also a huge philosophical concept to bend one’s head around. It’s also, I’ve found, a difficult one for friends and family because they can’t “fix” it and that hurts.

Many of you will be aware of the “spoonie movement” which was originally created for those with chronic physical health conditions, hence when I was always restrained in my use of the word and felt uncomfortable labelling myself as part of that community.

However my mind is changing on that front.

I have been ill for 20 of my 26 years on this planet, I have approximately 7 conditions and have had more treatment than most and yet here I am, still chronically ill.

My issues are around my mental health, although some conditions are now in remission I still struggle with Major Depressive Disorder, Anorexia Nervosa, Generalised Anxiety Disorder and Obsessive Compulsive Disorder.

Right now it’s Anorexia and Anxiety that are majorly kicking my ass (to use non medical parlance), I am currently in my third full round of treatment and admittedly it is much more intensive than I have experienced elsewhere (thanks postcode lottery) but so far it’s barely scratching the surface. I have been ill so long I don’t have a “before” to remember and strive for. In fact research suggests that if an Eating Disorder is present for seven years your prognosis is not good – so with 13 years under my belt I’m not feeling hopeful.

I spoke to an Eating Disorder consultant recently who reintroduced me to the term “SEED” or Severe and Enduring Eating Disorder. One of her patients was offended by this – “I don’t want to be a seed, I want to be a flower”. I think this is very powerful and says a lot about our chronic patients – we often feel like a burden and hopeless – something I myself experienced when my CAMHS team aged 17 told me they had “run out of options”. As chronic patients we are fully aware we are difficult and complex but please don’t throw up your hands and give up on us. And please, we’ve been living these conditions for a very long time so take us seriously.

This is also why I’m seeing a strong backlash in the mental health community against the “recovery” movement and also the government’s seeming need to define “recovery” as “in work”. Recovery is fabulous and we should strive for the best for our patients but let’s not give false hope. Some of us, may never recover. We may take medication for the rest of our lives. We may have to surf the waves of our illnesses ad nauseum for decades.

12 sessions won’t fix us.

Living with a chronic illness is bloody difficult to say the least, I would offer a day in my shoes but you would know you could take those shoes off at the end of the day. I can’t. There is no real comparison.

There are points we cope well, we say “f*** you” to our bodies and fight for what WE want, even though this often ends up in a body backlash (case in point I slept 19 hours after a 2 day trip to Manchester recently”). There are points when either through medication or the boom/bust cycle many of us experience we can function like “normal” human beings. And we rarely “look sick”. When you see us and tell us how “well” we look it’s probably the first time in awhile we’ve been able to leave the house. For more on this check out the brilliant But You Don’t Look Sick.

However there are points, and I’m sorry to say I’m here now, when we get desperate, when something snaps.

I feel lost and hopeless right now. I have had 10 years on and off of almost every therapy NICE approves, I’m 31 weeks into an experimental non NICE approved group therapy, I stopped counting when I tried the 20th medication, I’ve tried everything over the counter and even tried Acupuncture. I’ve tried to sign up to experimental treatment studies including TMS, I’ve taken meds that I shouldn’t due to contraindications or legal issues because anything is better than how this feels. Which of course leads to risky behaviours.

Some doctors are sympathetic (thankfully my current one is) and if you find a good GP cling on for dear life. A conversation with a previous GP went like this:

Me: Well if you won’t prescribe me benzos, I’ve tried every other med under the sun that I can, what am I meant to do to deal with my crippling anxiety while also working full time, commuting and trying desperately to keep a roof over my head?

GP: Just cope.

Chronic illnesses are sneaky too. I thought I had come to terms with what I had done to myself some time ago – more around my scars. Now though, age 26 I am beginning to experience more of the physical side effects and it’s currently having a very detrimental effect on my work and relationships with friends and family because I am not strong or well enough to do basic tasks that were once a piece of cake.

Currently I am struggling massively with fatigue, constant aches and pains and raging anxiety which means headaches, uncontrollable shaking, brain fog and many more very physical symptoms – bolstering my argument that this mental/physical health divide is bogus.

Having a chronic condition means redefining your “normal” and managing your expectations. Maybe once upon a time running 10k was an option, maybe today you should applaud yourself for just getting out of bed. It’s tough. I know, I have tried but when you have low self esteem it can be hard to see boiling a kettle as an achievement.

I don’t know much admittedly but I would recommend above all:

  1. Find a sympathetic GP and work with them to build an understanding health team around you
  2. Talk to your friends, don’t withdraw or cover up what’s happening – from my experience you will be surprised how many understand and will support you. Some won’t, some may withdraw, that will hurt but ultimately show you who your true friends are.
  3. Find your “tribe”. I’ve been running support communities, mostly around mental health for the last 13 years and they have not only changed but saved my life. Find people who understand and won’t judge and lean on them when you need them.

Confession time: the first time i asked for help

The World in Mentalists this week featured a blog about first experiences (or first contact!) seeking help for a mental health problem.

Reading that blog which you can find here i suddenly found myself transported back almost ten years ago now to my own first time. The first time i admitted that i needed help and couldn’t do it on my own any more.

This first experience is, for many, a huge deal. It is the first time they have ever admitted it and let their carefully crafted mask fall and from personal experience it feels like a confessional.

Forgive me doctor but something is really not right in my head.

The first time i ever admitted out loud that something was not all right was  definitely a shatter point in my existence. My memories of it are vivid even now and i look back and have so many things i wish i could say to that scared girl.

I was fourteen when i first went to my GP and asked for help. I had been ill for a fairly long time by this point, having already fallen quite deep down the rabbit hole of Depression, Anorexia, Anxiety and OCD.

These were not conditions that had come about suddenly, they had grown up with me, slowly and silently. I had always been an anxious child and i can remember very ritualised behaviour and obsessive compulsive symptoms dating back to the age of 6 but it had always seemed very normal and very manageable to me.

In fact i remember thinking that everyone did the strange rituals i did and thought the way i did, we never talk about it because everyone does it i reasoned to myself.

When i was thirteen it began to manifest more strongly and i started retreating into myself. I had always been quiet and i had just started the “terrible teens” so it was not really noticed, not even by me, that i had started withdrawing from the world.

I had a lot of friends online and they were the ones that eventually managed to convince me to tell people “IRL” (in real life) and that what i was feeling was not normal.

Up to this point i had told almost no one that actually knew me, it was something i kept incredibly close to my chest and that not even family or close friends knew about.

I finally managed to work up the courage to tell my parents. Almost. I left them a note that said i needed to go to the doctor because something wasn’t right. This may seem cowardly but at this point i was literally unable to get the words out of my mouth.

They were shocked and scared, it was completely out of the blue, so good i had got at hiding that anything was wrong.

I wrote a four page letter to my doctor on my computer and printed it out because i was terrified of saying anything and i knew i would sabotage it and end up saying that nothing was really wrong, i had made a mistake.

I honestly did not know what to expect or what would happen after i handed over those pieces of paper. Mental health was not talked about ten years ago. We now have wonderful campaigns like Time to Change and politicians talking about their experiences of mental illness but when i was 14 this just did not happen.

There certainly wasn’t anything about mental health or illness at school. People made jokes about “nutters” and “men in white coats” sure but there was deafening silence from the curriculum.

I was scared that i was going to be sent straight to a psychiatric hospital right there and then on the spot. I was scared i would be medicated up to my eye balls.

Luckily this was not the case!

The doctor i saw was young and very newly qualified. She admitted from the very beginning that she knew very little about mental illness or the conditions i was suffering from and had never had a patient like me but that she would do everything in her power to find out more and help.

She was incredibly kind and compassionate and refused to give me medication, saying instead that i would have a referral to the local CAMHS team for an assessment. I remember how wonderful she was, so non judgemental and what’s more she believed me and what i was going through.

Through the weeks she helped me understand that medically i was not well and i needed help, she helped me talk to my parents and together we learnt more about my illness.

Later on she left her position at my surgery and went elsewhere, however because of the way she had responded to me i felt optimistic about my treatment from this point onwards.

I hear about some people’s first experiences and think back to some of my own later run ins with professionals i feel terrible thinking about it. It is so important that your first time “coming out” as it were about a mental health problem is not a negative one. I know so many people that tried once and it took them years afterwards to try again because their first experience had been so traumatic.

There is still a real gap that needs to be dealt with in terms of good and actual patient experience is and the education of GPs when it comes to mental health, especially in young people.

But i hope that through continuing work by organisations like YoungMinds we can get there. Everyone deserves to be taken seriously and treated with respect.

And if you want to help support mental health education in schools check out my friend Charlotte’s amazing AcSEED project.

A day of doctors

I’m very open about the fact that i feel, first and foremost like a service user and that is a big part of my identity. So just to warn you this blog is very much from that perspective.

Yesterday i had a pretty odd day that contained a couple of notable incidents i thought i would write about.

Firstly: good thing

After admittedly quite a long time spent:

(1) putting off going to see a doctor and

(2) not being able to get an appointment due to the painfully bad booking system at my local GP, i went.

As usual, regardless of what i logically “know” is true about my mental health and its effects and in spite of the fact i have a degree in Psychology and work in this field, i doubted myself. And as usual i tried to talk myself out of going.

I’m glad i did.

The doctor (a trainee) was wonderful. I often find that newly qualified doctors come across as the most compassionate and engaged and this was for me a very positive experience. Go doctor!

I have certainly had a lot of less than positive experiences with GPs, some of those experiences have been in the very same surgery and have almost resulting in my leaving the practice.

Which shows how much of an effect having a good doctor and a good patient experience can have.

So that was good although i was advised to take the rest of the day off work and go and get some blood tests at the local hospital.

Secondly: good thing

My blood tests were done at the walk in at the local hospital and went well. I’m not going to say it was good, it was what it was but i really appreciated the nurse not even batting an eyelid at the scars of my arms.

Thank you for not staring, touching or saying anything. A lot better than i’ve had in the past when i have had health professionals make some of the most inappropriate comments about my arms in particular.

Thirdly: not so good thing

After my blood tests i went to get a coffee in the hospital cafe to perk myself up a bit before the cold journey home.

Shortly after sitting down and taking my first sips of coffee i realised that the people sat at the table in front of me were a mental health team.

How did i know this? Because they were having a team meeting right there in the cafe and talking about their cases.

Hang on. Is that an alarm bell ringing?

As i sat there drinking my coffee they discussed individual cases although never mentioning any names.

Interestingly they also talking about telephone counselling which one of them was apparently about to conduct a session of. The practitioner in question said very openly that she didn’t really “get it” and they went on to talk about it further saying that the best thing would be that you could smoke and (jokingly) drink during a session etcetera.

When i mentioned this on Twitter a friend of mine and fellow VIK said “sadly I’ve heard this before, and also a comment on how doing online therapy means you can check Facebook at the same time”

Yep definitely alarm bells at this point.

Patient Advice and Liason Service

Luckily the local PALS (Patient Advice and Liason Services) are based on site and it seemed like a good place to raise my concerns.

Having had little personal experience of PALS previous to this i didn’t know what to expect but i found them kind, courteous and very helpful.

They seemed rather unimpressed at the actions of the team and said that they will follow it up and raise my concerns.

It was really nice to be taken seriously and listened to and to be able to just walk in and raise a concern instead of more traditional methods of making a complaint which can be long, ardous and offputting.

It did make me think too about confidentiality and what we should and shouldn’t say as professionals. And gallows humour too. I know that i frequently use very dark humour to help me cope with situations and i understand that clinicians need this too. I’m not saying that they should not have those thoughts or feelings but that conversations of a sensitive nature should not be held in a public arena because you never know who is listening.

Yes i was more sensitive to their conversation because i knew what they were talking about but when you have a discussion like that in public any one could hear. It could be me, a service user who knows about rights and rules..or it could have been a family member or friend of one of those patients.

So yes i definitely feel that i’ve seen some very strong examples of both good practice and bad. A very interesting day all in all.

Talking Taboos: Self Harm

There is a phenomena that lurks, mostly hidden away, and that affects more young people than i think anyone really dared, or wanted, to imagine. The number has been growing for years. In fact it affects one in twelve young people and yet is one of the most misunderstood and mistreated issues they face today.

The issue i’m talking about here if you hadn’t guessed is Self Harm.

At YoungMinds and the VIK project we have known for a very long time that self harm is a huge problem for many young people. We campaign to raise awareness about self harm and reduce some of the stigma that surrounds it and do this by giving training to professionals, speaking and writing publicly about our experiences and feeding into research. So when  YoungMinds were given the chance to do a major piece of research on self harm they jumped and together with CELLO they produced a year long piece of research entitled: “Talking Taboos”.

I was lucky enough to attend the launch of Talking Taboos at Portcullis House on the 23rd of October. The launch was a fantastic success with a wonderful audience that were full of questions for our panel of experts:

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The panel

 

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Lucie Russell, YoungMinds

The report, aimed at exploring society’s perceptions of self harm as well as young people’s experiences also goes on to give key recommendations to try and bring self harm out of the shadows and break down the barriers so many face in seeking help. In a world where there is so much fear around self injury it is great to see such clear, straightforward steps we can begin to take to improve this area.

The report showed a widespread lack of understanding and training around self harm for near enough all frontline staff in young people’s lives; from parents, to teachers to GP’s. However it also showed that so much of the time it is not a wilful ignorance.

 

97% of young people say that they believe self harm should be addressed in schools and 80% of teachers want clear, practical advice and materials that they can share with pupils.

 

Those are overwhelming numbers that cannot be ignored. There is a strong desire for knowledge and to open up a dialogue with young people and i would love to see more schools actively engaging with young people about mental health and emotional wellbeing at the very least.

We need to help GPs to understand too. Four out of five do not feel that they have the right language to speak to young people about self harm. That worries me.

We need a new era of openness and tolerance and not only that but empathy for our fellow men, women and children who are suffering silently because of ignorance and stigma.

Self harm is a widespread problem and just like mental illness it does not discriminate between genders, or races or even age ranges. We have all at some point or another i imagine done something that could be seen as self destructive and everyone has less than perfect coping mechanisms. It might take the form of smoking, or drinking too much, or self harming. Either way we need to stop obsessing about the fact it is happening and start asking “why?”.

 

 

 

The report can be read in full here: Talking Taboos

And for more information and advice on self harm i would strongly recommend checking out LifeSIGNS which is run by people with direct experience of self injury.

Mental health, GPs and young people

This morning i called up my doctor’s surgery to get a much needed appointment with a GP. For most this is a task that needs little if any thought. For me however it can be a potential minefield.

What’s more when i called up i was informed that my appointment would be with a new doctor, not one that i had met before or had any experience of. Accepting the appointment, was for me, a pretty big gamble.

I’ll explain. I have had mental health problems to some level or another for most of my life and i have been using mental health services for coming up to nine years now. I have almost endless experience of all sorts of medical professionals from psychiatrists to nurses and everything in between.

Obviously as a UK resident my first port of call when it comes to health (both physical and mental) is my GP. GPs often feel like the gatekeepers to other services and organisations and i have always felt that it is vital to have a good working relationship with them.

However when it comes to mental health nothing is ever so simple. I would like to say that i have had predominantly good experiences but this is not the case.

I think the problem comes, to some extent from a combination of two factors: the fact that this is mental health and that i am a young person. Apparently these two things mean it is often harder for me not only to access the treatment i need but also to have problems recognised at all.

I wish i could say that i was alone in this experience but unfortunately that is far from the truth. I have spoken to countless other service users young and old about their experiences of GPs and they very much mirror my own. I wish i could tell you that young people weren’t told that their conditions were “a phase”/hormones/attention seeking/manipulative. Eating disorders are seen as a fad or a diet gone to far, depression dismissed. And if you were told this after opening up about something deeply personal that you may have not ever shared before, do you think you would go back or try and get a second opinion? I know i would think twice. I know it is a hard fact to stomach that some children and young people suffer from severe mental health problems but we can’t ignore or it deny these people help because it makes us uncomfortable.

All the evidence shows that a huge proportion of adults that have a mental health condition report symptoms starting in adolescence and the power of early intervention, as shown especially in EIiP (Early Intervention in Psychosis) services, cannot be denied.

And yet we still struggle to get our voices heard and to be taken seriously.

GPs need training not only in how to spot the warning signs of mental distress in children and young people but also need to be educated on atypical presentations (we don’t all neatly fit into diagnostic boxes) and a more holistic and open approach to young people.

Luckily today was a positive experience. In spite of all my anxiety in the run up to the appointment i was seen by a doctor that listened to me, took my opinions and preferences into account and made me feel relaxed.
It is just unfortunate that i can’t say that more often.