Category: The Nitty Gritty

What Is Going On At Southern Health NHS Trust?

The story starts with a young man named Connor Sparrowhawk. Connor was 18 years old when he had a fit in the bath at Slade House (an NHS treatment and assessment centre) in Oxford. He was already diagnosed with autism, a learning disability and epilepsy but to seek further support when Connor became more aggressive and agitated he was admitted to Slade House for further assessment.

In the report following his death it was found that Connor had not been risk-assessed appropriately and drowned from an epileptic seizure whilst  bathing unsupervised. The unit was closed in November this year after failing all 10 quality and safety standards from CQC.

The Tale of Laughing Boy from My Life My Choice on Vimeo.

Connor’s family didn’t give up. They started the ‘Justice for LB’ (laughing boy) campaign for an independent enquiry into his death. In the process they are standing up to the Southern Health NHS Foundation Trust who could ultimately have prevented Connor’s death.

lbforday32
Connor Sparrowhawk (Laughing Boy)

Yesterday the news broke that over 1,000 unexpected deaths, like Connor’s, had been left uninvestigated by the Southern Health Trust since 2011. Only 1% of investigated deaths had been that of people with learning disabilities. A worryingly low percentage compared to the -still low- 30% of adults with mental health problems who died unexpectedly investigated.

How was this allowed to happen? The report found that there was neither “effective” management of deaths and investigations nor “effective focus or leadership from the board at Southern Health”. The report states that the NHS Trust had: “lost learning, a lack of transparency when care problems occur”. Connor’s family had been concerned about him and had made staff at Slade House aware of his needs, such as epilepsy, repeatedly. If appropriate assesments and proceedures were to have been followed he would likely still be here today.

“We have little confidence that the trust has fully recognised the need for it to improve its reporting and investigation of deaths.” – Mazars

The worst part of this case is that the trust has shown little to no signs of acknowledgement of its failures and the immense need for changes to be made. The final report is yet to be published.

Connor is lucky to have the support of an amazing family- both in his eighteen years of time with them and the time in their hearts now. However it is worth baring in mind that in over-65s with mental health problems only 0.3% of unexpected deaths were investigated. Many of these patients may not have had family to pursue the reasons behind their deaths. No one dies for no reason. There is always a reason. For the safety and care of future cases all unexpected deaths should be investigated. If malpractice is to blame then these people have been tragically neglected by a service that is supposed to be caring for them. The reasons behind their deaths are covered up by not searching for the cause. How is this acceptable? Anyone who brings about the death of another should face the consequences. Whether it is an individual, a group or an NHS Trust. An investigation into one death could be the finding of a fault that could prevent 1,000 more unnecessary deaths.

Many thanks to Sara Ryan for letting me share her and her sons story and message.

What to Do When a Mind is Struggling

It’s mental health awareness week! Wahoo! To celebrate, for the first time ever, I opened up my blog to my Facebook friends. I asked what they wanted to see more of- and I got a brilliant response! The thing I want to tackle first is how exactly people can help someone with a mental illness. It was in demand and it is so great that people want to help.

First, three important words:

“I believe you.”

Never underestimate this statement. It is subtle yet effective in the way that it works. You see, a lot of people with mental illness feel like they are misunderstood or not believed. Just these words can make all the difference.

You can’t fix it

If you ask a mentally ill person what’s wrong you may get a variety of answers. Some of the problem might be abstract- dark feelings or hallucinations. If this is the case listen. You can’t get rid of these things but you can get rid of the loneliness that person has in the situation. Good things to say are: “That must be really hard”, “You do so well to fight all this.”, “I can see how hard it must be.” And “It will pass soon and I’m here until it does”. Notice there are no questions? Questions can make the person feel interrogated or judged. Listening is your best bet.

If there is a physical problem that is ongoing, making the person distressed, you may be tempted to leap on it. Just because it isn’t as abstract as the above it doesn’t mean you can solve it. If the issue has got the person to the point of complete distress then it is not something easily solved. Mentally ill- not stupid. For some of us logic goes out the window when in crisis, to you the issue may seem to have been completely blown out of proportion but be patient! I’d encourage you to think of what kind of situation would make you feel that distressed, and act how you would want to be treated. It might be that a mug has broken, but the distress may seem equivalent to how you’d feel if you had a near miss on a motorway. As a last thought on this- problem solving at its most effective usually takes place when all parties involved are dry-eyed and rational.

Distraction

Use with caution. Never give the impression that you want the person to stop talking to you or that you have heard enough. Hear them out and then, when things start to slow and calm a bit suggest doing something. “Shall we put a film on for a bit?”, “Is there anything that might make you feel a bit better now?”, “what should we do now?”. Preferably stay with them, do something else and try to promote different topics. If the problem does raise its ugly head, talk about it and then move on. Don’t make the person feel that the problem is being belittled.

Breathing

If the person is out of breath or has irregular breathing then try to encourage a calming breath. Use your voice to calm and instruct in and out breath to a slow count of three. Do it yourself. You can quietly do this without saying anything, just by beginning the exercise yourself and making the breaths audible.

Reassurance

Reassurance is always good. You might be asked for reassurance or you might feel like it is needed. If you are being asked for reassurance- don’t even think before giving it. Say what you have to to get the person to calm down but If the person needs reassurance a lot, and not just in crisis, think more carefully. Don’t use blanket reassurance. I’m going to use an example.

Emergency reassurance:

*person showing distress, irregular breathing etc*: “I won’t be sick will I?!”
Friend: “No, don’t worry you won’t be sick. You’re fine.”

This is the blanket method. It helps when the person is panicking about something very unlikely and the fear or panic is intense not ongoing. If by some chance the person’s fear actualises don’t worry about covering your back. When your friend has calmed down they will realise that you were trying to help and that if anything you were both very unlucky that on this occasion the fear actually happened!

Using this example, if someone is in need of regular reassurance because they have a phobia or perhaps OCD a different tactic is needed. You can’t assure someone they will never, ever, be ill because both you and they will know that that just isn’t true. It can also not be productive to treatment to rely completely on other people’s reassurance.

An Example: “Will this make me sick?”
Answer: “Well you have felt this way before and you are usually fine once you’ve calmed down. Even if you are sick- it’s fine. It happens.”

See how you are trying to make the scary a little less so? This also can become an internal monologue of reassurance.

Mood lifts

If someone is suffering from low mood or depression remember that it isn’t always a case of pulling yourself together and getting on with it. Anything you say to this affect won’t be taken very well by the person at all. This is by far the topic I find most difficult to write on because there is no clear solution. All I can say is try and think of it as like having flu. It’s one of those things, but you can help it get a little better by doing basics. Bathing, fresh air, healthy food and water. Keep in mind that all these things are probably not very appetising to your friend right now so coaxing and persuading might be necessary. Go back to the distraction section of this post and get something light going.

I hope this helps. This is all written from my personal experience so I can’t promise it will work for everyone but if nothing else it’s a start. Let me know if you would like to request any other topics or anything to be covered in more detail. Anyway- happy mental health awareness week!

Write On – How to Prevent Blogageddon

Anyone can get a blog. A cyber-allotment to fill with opinions and experiences all of your very own. This is after all the nature of blogging. There is no point writing as a far detached onlooker on a topic found on Sky News that you know no more about than the majority of your readers. People turn to blogs for the niche market of unheard voices. If they want facts they turn on the news.

“Extremists have shown what frightens them most, a girl with a book”
Malala Yousafzai

Words have power. You can fight a war within a paragraph. A well thought out, punctuated, war.

So if you find yourself with the itching of an untold story you should head for the biblio equivalent of sudacrem and share it.

But little known stories are often untold for a reason- either they are weighted with taboo or people don’t want it to be told. But they can’t stop you. Here are the skills I have honed to free myself from the gags, and they fit handily into an acronym.

  • Willingness to Work – Post often and post quality. Otherwise what is the point?
  • Resistance – If you get criticism don’t let it silence you. The more adversity you are met with the more reason for you to speak louder. People might not like the fact you are writing or what you have written, but if it is the truth, eloquent and respectful- on what grounds can they stop you?
  • Invent – think of different ways to get your words out there. If you have no internet, text your posts to a friend with your account details and get them to post what you sent to your blog. If this isn’t a possibility do the same via paper. If all else fails just keep writing and then post when you finally have access to the worldwide web.
  • Time – Coming off the same point- it doesn’t matter when you post. Post six months after you write if you must- just make it clear in your content what you have done so your story has consistency. Take time to evaluate real life people before you hand over your web address. The last thing you want is someone dropping you in the dirt!
  • Educate people with what you say. Explain things clearly and don’t be afraid to talk emotion.

 

  • Observe what is around you. Your ordinary is someone else’s extraordinary! Inspiration can come from anything if you look into it enough.
  • Nameless. Use pseudonyms to protect the identities of those you write about. Whether you are writing a flattering poetic verse or a 500 word rant- if you don’t name people they become hypothetical identities and are harder to oppose. Giving yourself a pen name can help free yourself up a bit too.

 Write On! Your stories are worth fighting for! 

a hand holds a light 

How to Smuggle a Dog into a Hospital

A Dog in A Hospital?

“No.” She said. “Definitely no.” The rather pinkish woman, introduced to me as the ward manager of the PMU, was looking down at a rather sheepish looking Noodle and I. Myself, in a hospital gown and a tired Labrador curled at the end of my bed. It is the 14th of August and soon to be my second night on paediatrics. The previous night Noodle had returned to a friend’s house to be fed but from the second she arrived back on the ward she made it quite clear she had no intention of moving again without me. The little dog had spent the day watching members of the psychiatric team coming in and out- sending the message ‘don’t hurt her’ telepathically through her chocolate eyes. Now she was tired and warm and just wanted to sleep the night away by my side.

“We can’t.” The woman reconfirmed.

“You can.” I say, my voice wavered as I begged my eyes not to fill. “She’s a guide dog, I need her to move around. She’s my eyes.” I don’t want to have to have this conversation- I am after all here because I can’t deal with the normal stuff, let alone advocate myself.

“The other children don’t have dogs in.” She continues. “Their dogs are special too” I grimace at the word ‘special’. Then to my great relief a mental health worker returns and after a ‘quiet word’ the pinkish lady’s orders had lifted, though her scepticism hadn’t.

Noodle spent the night alternating between my bed and the chair beside my bed. The floor was freezing cold and I had nothing to offer her in the way of a blanket. She then went on to spend every night with me in the PMU, a favourite with the nurses and a source of curiosity for passers-by. In fact her stay had gone embarrassingly well for the reluctant pink lady. After a couple of nights I find myself sitting with the duty psychiatrist, who kindly popped in everyday regardless of when her shift ended, at the end of my bed. We were discussing my fears of Noodle being rejected again. I knew I was going to go to hospital but I had no idea where, finding a CAMHS bed is like a cut-throat level of bidding on Ebay. Beds were hard to find for anyone, let alone a girl with a dog.

“She has to come with me.” I tell the psychiatrist as I stroke Noodle’s ears.

“I know…” she replied, biting her lip as she watched us carefully. “I have put in all the referrals that the dog is non-negotiable. Both of you or neither.”  She smiled and I smiled back, though her voice was that of someone who was attempting to build a hadron-collider in their basement.

News came back on Friday that there was a possibility I would be going to the *Heron unit. They had to check that there was no one on the ward with an allergy or a dog phobia and everyone’s parents had to be called. I later found out that in the gap between that Friday and my arrival on the Tuesday there had been several calls to guide dogs. Most of the queries were on the ‘will it poo everywhere?’ variety. Within a week of arriving on the ward Noodle was the favourite of all the patients. Her determination to keep me safe never wavered, running to get staff when I needed help and sitting in the corridor outside my room to show if I was about to do something dangerous. She even tried her hand at carrying cards with messages on to the staff!

Now, as I am about to be transferred, the ward is having trouble contemplating what they are going to do without a dog on the ward. A far cry from the ‘infection control risk’ they reluctantly took in. I hope that they find themselves a PAT –Pets as Therapy- dog. Though I think that the ward manager is quite keen on getting her own dog and bringing it to work with her every day! Overall, this dog belongs with me. No matter what.

Nope and Noodle

Pick a Card… Of Diva Neuro-boilers and Long Metaphors

“Please try again later” – Welcome to my life. My body and mind suck from time to time.

I’m not talking in a ‘I lost every race at sports day’ kind of way, (I did) but I’m talking in a flat out, ‘forgotten how to function’ way. The most recent recording of this occurrence was in my Summer School post.

I’m not going to list fancy words here, if you want feel free to ask for the medical terms in the comments. But the way I see it; at times my mind just says “Nah-ah” to the world and walks away. *sigh*- what a diva.

This ‘diva’ situation is, of course, universally covered in medical handbooks. Short term solutions involve: talking, coaxing and cramming chemicals into the poor boggled neuro-boiler affected. My neuro-boiler isn’t just a diva, here’s a long winded metaphor to explain:

It’s like my brain is at work at its desk, it has a lot of things going on at once and many different piles of paper filled with information. Things are going on all the time in the office and the brain is chugging its way through the tasks happily. However, suddenly there is a fire alarm and the brain has to drop everything and dash out. The alarm could be a drill or a real fire, it doesn’t matter which because the brain still has to do exactly the same thing when the alarm sounds. It overrides everything else and getting out takes top importance, no matter what was going on before it started. It is no one’s fault the alarm went off and it is unpredictable as to when it will happen again. After a while, when the alarm has been turned off and the building has been given the all clear, the brain wanders back to its desk like nothing ever happened and nonchalantly begins to work again.

This is dissociation. It’s a bit of a nightmare and means I am completely cut off or ‘frozen’ for a couple of seconds or minutes at a time. It happens when my brain gets so anxious, for legitimate reasons or not, that it just shuts a part of itself off and runs away. Sometimes it can lead to my major OCD/Anxiety attacks and sometimes it just fades away as if I have shut my eyes for a few minutes. While this happens I am at a total blank, not really thinking and not moving. Although it is scary I am slowly getting used to it, though it can still be worrying for the people around me.

Enter Stickman Communications!

Under the recommendation of a professional I bought myself some of these groovy cards. They explain what’s going on in very simple terms for friends or worried members of the public. I think they are a brilliant idea, especially if you are feeling too embarrassed to explain what’s going on to someone verbally. They cover all sorts of medical problems- not just fatigue and mental illness. They also don’t lead people into asking a zillion questions, which verbal explanations of complex things often do.

On my lanyard -bought by a friend for added comfort- I have cards for all occasions: when I ‘flop’, when I lose my voice and when my ability to think just disappears. I also have a very useful one which says “I really am OK, though a glass of water would be nice, if it isn’t too much trouble?” and also one that is matter of fact, saying that I have an illness and know that my behaviour is different right now, so please be patient. I think they are fantastically discreet and I am pretty sure they will save me loads of time spent worrying over ‘they think I was being rude’ moments.

The second thing I treated myself to was a pack of cards which are ‘traffic light’ indicators.

“I can’t cope”

“This is a bit much”

and “I am ok with this”.

I think they are brilliant as the first two are the phrases I find the most difficult of all to verbalise.

The lanyard lives in my handbag and it is very reassuring as it prevents people potentially calling ambulances unnecessarily. Which is very awkward.

I also couldn’t resist one of these fantastic ‘differently normal’ wrist bands. They are too cool.

Multicoloured wristbands which say 'differently normal'

In summary- Hannah Ensor is a genius and her company will be taking a lot of my money in the future!

How Mental Illnesses and Adjectives Differ.

Mental Health Awareness Week Part The Second-

As I said earlier this week when posting my Toenail Metaphor, it is mental health awareness week. As a blogger on such issues I felt obliged to do something. Today I am talking about the incorrect use of the names of mental illnesses. A subject I can get very heated about if needed.

How would you feel if someone sitting next to you on the bus announced, whilst coming up with mindless smalltalk, that the weather is “so cancer”. You would rearrange the bag for life filled with groceries which you have precariously perched on your knee and turn to them.

“Sorry?”

“Well it is unwanted, difficult and my hands hurt with the cold… Kind of like cancer.”

What would you say to them?

Would you point out that cancer is a life threatening and excruciating illness which often effects whole families rather than just the sufferer?

The misuse of the names of mental illnesses is a daily occurrence:

“I nearly had a panic attack when they missed that goal”

“I’m depressed… I’m out of my favourite ice cream.”

“My teacher is so bipolar, one minute she’s nice and the next she is giving out detentions.”

“She went schizo on me!”

“I’m so OCD about my bookshelves.”

“He’s a psycho…”

She is like anorexic skinny.”

Mental illnesses are not adjectives poster showing insensitive quotes similar to those listed.

People aren’t doing this to be malicious, there is a genuine lack of awareness surrounding mental health. I believe it is a problem we are encountering on the way to having a better attitude towards mental illness. As these conditions become better known and more talked about (something which many are supportive of) some people find a grey area and get stuck there. The more we talk the more we are educating each other but somewhere along the lines the message got lost:

Mental Illnesses Are Not Adjectives.

Like physical illnesses you cannot self diagnose, there are medical professionals who are trained to recognise and treat these illnesses. Sufferers experience daily battles which those without mental health problems can barely imagine, so using these terms incorrectly belittles these disorders. The names of mental illnesses should not be used to emphasise, describe or elaborate.

So get your facts right and learn some new words!

“I’m so depressed.”

-devastated
-crushed
-disheartened 
-miserable 
-melancholy 
-heartbroken
-dismal
-dreary 
-crestfallen
-despondent
-inconsolable
-glum
-morose
-distressed 
-pained
-dejected 
-gloomy 
-sorrowful
-tormented 
-rotten
-disconsolate 
-anguished 
-hopeless
-suffering 
-downtrodden

It is hardly like you are stuck for choice of words to use.

Now for some myth busting:

1. “Mental illness these days is fashionable. Everyone seems to be mentally ill!”

As stigma lessens more people are coming forward and talking about their mental health problems. This does not mean that more people necessarily have them, it is just that we know of more people who have these conditions. Putting it into my previous metaphor: cancer incidence rates in Great Britain have risen by 23% in males and by 43% in females since the mid-1970s. Is cancer fashionable? Didn’t think so.

2. “If everyone sought out diagnosis we would all be diagnosed with mental illnesses.”

Having a mental illness is a physical abnormality. Though you can’t see it from the outside (only symptoms) things are very different inside the brain. These brain scans show abnormality in three disorders compared to a healthy brain. Diagnosis has strict guidelines and people are thoroughly assessed before being diagnosed. The reason not everyone has a diagnosis is because not everyone has these disorders, if you are not having your day-to-day life affected by symptoms you will not feel the need to seek diagnosis.

3.  “You should just get on with it.”

Sadly it just isn’t that simple. If someone could choose not to have or to just ‘get on with’ their mental illness they probably would. It would make life a lot easier. These illnesses have a physical affect on the body as well as a mental one. Muscle pain from tension, panic attacks, exhaustion and unusual behaviour are just some of the physical symptoms a mental illness can cause. What makes it worse is that those are just the symptoms that can be seen by others, internally a lot more is happening.

A cartoon showing people making unhelpful comments to people with decapitated hands, lying in surgery etc.

 

I hope you enjoyed MHAW14 and get commenting!

 

How to Leave the Internet (For a Bit)

By the time you read this I shall be doing one of two things: deep breathing and sitting on the (very uncomfortable) stairs by the exam hall, or sitting in a corner curled in a ball sobbing into a box of kleenex. I am going to aim for the prior. Today is my AS sociology exam, one I am not overly looking forward to, but today is also *technically* the day of my AS French exam. However, being the habitually awkward soul that I am, I cannot sit two exams in one day for medical reasons. Which means French has to wait until Friday and I have to go into solitary confinement with only college support staff for company. This isn’t too bad, but I will also have no internet or phone access. My heart just sunk a little writing that statement. It just sunk slightly more with the shame of writing that one.

So here it is, how to leave the internet in seven simple stages…

  1. Think of thoughtful last words to leave on twitter.
  2. Make clear to followers that these are only your last words for the next couple of hours, and thank them for the Samaritans helpline number which they sent you.
  3. Be sure to be up to date on all your friends’ pointless statements about life, and statements about their friends’ pointless statements about life, before you go. Oh and the selfies of course.
  4. Work out whether you are going to use these technology deprived hours for academic enrichment or for self pity. Note- the latter may be difficult without Twitter.
  5. Realise that most of the technology you own has internet capability and you therefore have no technical capability to do anything but stare mindlessly into space.
  6. Choose a (physical) book featuring your favourite hero/heroine and delve into their lives to escape your own miserable (internetless) existence.
  7. Make a cup of tea, then another and then another.

Congratulations- you have officially left the internet.

Here is your reintegration plan for your return:

  1. Approach internet connected device with great caution, having a cup of tea in hand is recommendable.
  2. Tentatively press the ‘on’ button.
  3. Be prepared for the fact that everything may well be very different from how you left it. People may have broken up, fallen out, and if you are particularly unlucky Facebook has changed its layout again.
  4. Trawl back to the point of your departure on all social networks.
  5. Post obligatory statements saying how pleased you are to be back and connected with ‘humanity’.

I’m not quite this bad… but wish me luck all the same!

Today’s Thursday Cuppa comes from a Miss Piggy mug and a pile of revision.

A picture of a giant mug of tea with Miss Piggy of the muppets on it next to a pile of textbooks.

 

P.S – I found some brilliant sexual health posters in the office!

A poster which reads 'I'm not sure but I think I may have genital warts' accompanied by a picture of a very warty frog's body with a boy's face on it.

Mental Health Awareness Week: Talking and The Toenail Metaphor

I was alerted to the fact that it is mental health awareness week via Twitter, and after checking that I am in the correct country to take part I decided to begin this two-part series of blogs. I will be focussing on the lack of conversation about mental health and also the huge amount of incorrect language used when we eventually do talk about it. This will be alongside my normal writing schedule.

Firstly- the lack of talking.

For years we have had this idea as a society that people with mental health problems are just ‘mad’. They are not thinking correctly so therefore why should we listen to them/give them jobs? Luckily this image is slowly shifting with more and more people in the spotlight talking about their mental health problems. After all, a massive 1 in 4 of us will suffer a mental illness at some point in our lives.

But why is this important? Why should people talk about mental health?

OK, so somewhere around a quarter of us will be suffering from mental illness at any one time. Lets change this scenario for say… your toenails falling off. You get home from school or work – you are ready to kick back and relax. You take off your jacket and reach for your slippers. They are the comfy kind you get for christmas from relatives who don’t know you very well, but you like them all the same. You unlace your shoes and take off your socks. You stop. Inside the sock you can feel small hard lumps and on the floor you see that one of them has tumbled out. It is a toenail. You look at your feet and see that all of your toenails have fallen off. There is no apparent reason, they look perfectly healthy, but they are just not on your feet.

At first you laugh it off but then worry sets in. Why would all ten fall off at the same time? You decide to google it. No one seems to have ever had the same issue as you and all you can find are gruesome pictures of infections. The next day you go out to meet some friends for a coffee. As you chat you realise you would really like to ask them if the same thing has ever happened to them. Perhaps they could give some advice? But you are too embarrassed to speak out and take another glug of your latte instead. Little do you know that across the table your best friend’s big toenail is only just growing back after being absent for months. You have no idea.

At the weekend you go home to your parents. You decide you could ask your Mum- after all there is a slim chance that it might be genetic. She asks you a million questions you don’t know the answer to and prods and pokes at your feet. She doesn’t give you an answer so you leave feeling worse than when you came. Seconds after you have shut the front door behind you she paints the skin where her toenails used to be so no one will notice when she wears sandals at her friend’s barbecue.

By now you have come to the conclusion that you must be the only person in the whole world that this has ever happened to. You feel like you are weird, and you begin to question whether your nails are actually there or not. Or in fact; did you ever have them in the first place? This small issue has grown and you are now scared and desperate. Then in one last attempt to find someone who has gone through the same thing as you, you turn to the internet once more. After some digging you find the correct links to click. Suddenly you see that it is something which a vast amount of people will go through at some point. You are not alone and there are ways for it to get better. Some people’s toes are worse than yours and some people’s are better – but you all share the common need for toenails!

If anyone had said something sooner along the line then you wouldn’t have been so upset by what happened. You would know that there are treatments out there for your toenails to regain strength. This is mental illness. We have come a long way in how we see mental health problems, but there are still many barriers. If you know you aren’t feeling right- talk about it. Chances are the person you talk to will have gone through a similar thing or know someone who has. Mental illness is invisible- so you don’t know until you ask!

Picture of two feet, on the big toe are smiley faces drawn on in black ink.