When My Child Acts Differently Your Judgement Can Make Or Break Our Day By Emma Ben Moussa

I’m not sure why, but all of a sudden I had the urge to write… you see I have been up all night and I’m covered in bruises and bite marks… but it’s ok because the person that does it to me isn’t doing it to hurt me, he’s doing it because he loves me and this is how he shows it.

Unusual I know but let me introduce you to Sami and hope that this may spread some awareness of autism so the world becomes a bit more understanding for him in the future. 

On the 27th May 2015 I gave birth to a beautiful second son and he was immediately different from my first, he screamed so much we were put in a separate ward, I thought wahey upgrade!

Sami was very loud, he spent most the day screaming, he could not be apart from me and my family felt very unsure about looking after him- so they didn’t and 4 years they still do not feel able to look after him for more than a few hours although they do love him with all their hearts. 

6 months in I remember shouting up at the ceiling asking what I did wrong, why isn’t he happy? (sorry neighbours). My first born had just started nursery and was a bit behind with speech and getting over excited easily, at least that’s what I thought, but despite the nursery trying their hardest to show me something was different with Aymane I was so wrapped up in my clingy baby that I did nothing. To be fair my health visitor believed Aymane was just over excited too. 

At 18 months my Sami started talking; he said ‘mum’ and ‘dad’ and even his cousins name ‘Jack’ but then within a month it was gone and he has never said a word since.

He started to try find other ways to communicate, if he wanted a drink he would throw a cup at me, if he wanted food he would guide my hand to the fridge but if there was something he wanted and I couldn’t guess it he would get so frustrated and start hitting his head on the wall or throw himself to the floor over and over again. 

At the 2 year review the wonderful NHS nursery nurse said “I’m sorry but we have some concerns here, we will come back out and visit you” and true to their word every month I saw a health visitor and the nursery nurse.

Let me thank them right now because without their 2 years of constant support I honestly don’t know how I would have coped, they were angels. 

Sami does not sleep, he just cant, maybe he will get 1 to 2 hours a night but then he’s up and when he is up, the whole family must be up.

When it was time for nursery they were straight with me from day one, Sami needs assessing. I already knew at that point that Sami was different, on the walk down to nursey he would try to run in the road, he would lick car tyre and fence posts and he would take peoples solar lights out their gardens so he could lick them. 

At 3 Sami saw a paediatrician and we sat there for half an hour, I told him about Sami not sleeping, smearing his own poo on the walls, lining up anything that can possibly be lined, having absolutely no danger awareness, not being able to talk, eating inedible objects, chewing on things that should not go anywhere near your mouth, cracking his teeth on rocks and he diagnosed him there and then:

AUTISM 

I think I cried for days, now, I feel silly about that.

Sami is a gift, a gift no one else is lucky enough to have. Sami loves me and he shows it intensely, he’s stuck to me like glue, his smile melts my heart and when he has sensory overload no one but mummy will do. You need to squeeze him so tight and block out this busy world and the feeling that I am this angels world, is one I was always treasure. 

I went to the library the following day, I read everything I could, soon it became difficult to leave Swanscombe because Sami likes routine. I believe he feels safe in his home town because Swanscomber’s are kind, they are accepting, a community I’m proud to not only belong to but have the honour of being their borough councillor.

I set up an autism play group in Swanscombe because I was tired of going out and being judged. Too many times I have had people tell Sami he’s too big for a pram and to get out and walk, or ask him what’s wrong with him.

Sami cant talk, if you get in his face and ask him questions he cant respond to, not only are you frightening him you are building up his anxiety so when he lashes out at you he’s not being naughty, he is in a meltdown.

When Sami is happy he flaps like a bird; it’s called Stimming.

He’s quite happy in his mobility buggy rocking backwards and forwards watching the trees and enjoying nature when all of a sudden a face is there, the face is talking to him, he doesn’t know you and he doesn’t know what you’re saying but the more he doesn’t respond the louder you get. Mummy tells you to please give him some space as he’s autistic and more often than not mummy gets told “oh he will grow out of it we are all a bit autistic.”

He most certainly wont!

He was born this way, he’s perfect. I feel so sorry for those wonderful autistic children who had to mask their autism to try and conform with what is seen as normal. 

Sami is now 4 and my baby is off to a wonderful special needs school in September called Ifield, where he will learn Makaton and we might eventually be able to communicate with each other.

We have a bright future ahead for him, it may not be the one I imagined but he’s getting all the help he deserves thanks to the wonderful NHS and Cygnets pre school.

My hope for Sami is that people become aware of autism, he’s not naughty, he’s not stupid.  He is truly amazing, battling sensory overload everyday! 

My eldest is my superhero, he adores Sami and sees him as special not odd and most the children around us do too, it fills my heart up seeing Swanscombe accept and include Sami.

We even get birthday invites from Aymanes friends for Sami, which is something I never thought would happen. 

Aymane is only just diagnosed with ADHD, I missed it, I never noticed because Sami’s care is so intense. I realised what Aymane’s flapping was when I learnt about Sami but his school do not see Autism in him so he just got diagnosed with ADHD.

I have one child that talks too much and one that doesn’t talk at all. I also have the most perfect children, they are my biggest challenge, my greatest achievement in life. They made me stronger than I can ever imagine. I can walk in to a council chamber with no sleep, covered in bites and bruises and think “I’m an autism mum no opposition can faze me. “

Although I have to admit I do occasionally lock myself in the bathroom just for some peace. 

My point in writing this is because, A I needed to get it out and B I would really appreciate people learning about Autism.

It’s a hidden disability, I also have a hidden disability and I find the judgement is sometimes harder than the actual condition.

If you see me being bitten by my child his not being naughty, something has made him anxious he needs to be close to his mummy, he needs to feel mummy, be completely enveloped by mummy so that he is safe again. I know it sounds strange but its part of Autism.

My boy is a superhero and I am a lucky mum.

Why We Are Using “International Zebra Day” To Highlight A Rare Illness By Lisa Mulholland

31st January is “International Day of The Zebra” and the Ehlers Danlos Society is marking the day in a big way! They’ve asked Ehlers Danlos Syndrome sufferers like me to show our zebra stripes to raise awareness of the condition.

This blog post is my way of wearing my zebra stripes and showing solidarity to my fellow zebras, who include my friend Bev and her children.

You’re probably wondering what Ehlers Danlos Syndrome (or EDS for short) is and what on Earth it has to do with zebras… well don’t worry, you aren’t alone.

Most people and many medical professionals are unaware of the condition (although it is becoming more well known) which is exactly why we need a day of the zebra… still confused? Read on!

Back in the 1940s the medical profession coined a phrase to help its students diagnose conditions that they would likely face in their careers:

“When you hear hoofbeats, think of horses, not zebras”.

In other words look for the most common answers rather than something rare, like EDS! That is why the EDS community have chosen the zebra as their mascot.

This metaphor underlines the difficulties that we face when entering a doctors surgery or hospital, where we are often faced with professionals that are only looking for common conditions causing years of confusion and misdiagnoses.

So what is EDS?

EDS affects the collagen in your body. Collagen is best described as the glue that holds everything together. It’s in all your organs, muscles, ligaments, skin and soft tissue. Normally a person’s collagen is like a flexible but tough glue, allowing your body to function normally. However for an EDS sufferer it is more like stringy chewing gum, easily stretched and unable to support the body as it should.

Having EDS effects everyday bodily functions such as walking, writing and any impact activities. It effects your digestive system, your heart and other major organs.

There are currently around 10 different types of the condition. With vascular EDS which majorly affects the heart and veins; being the most severe form.

The problems associated with EDS are endless and confusing. This wonderful organisation explain further and help with research into the condition :https://www.ehlers-danlos.com/what-is-eds/

I was first diagnosed with this condition, four years ago, when I was 35 years old, after years of unusual medical problems that left doctors scratching their heads, including:

• Fainting for no obvious reason, with my heart rate plunging into the 30s (most people would be in the emergency department with this)

• Repeatedly dislocating my hip but also partially dislocating things like my knees with no trauma or obvious reason. Every single day.

• Not responding to local anaesthetic. My body just rejects it.

• Chipping my teeth or partially dislocating my jaw after doing something minor like eating an apple or a crusty roll.

This is just a tiny snippet. It really is unusual and seemingly endless.

Once when I was 5, a simple cold made my liver swell up and I was unable to move. I was rushed into hospital and the doctors suspected meningitis, tuberculosis and all sorts but ultimately I just randomly recovered and that was the end of that…. until I got my diagnosis of EDS . 30 years later…

Sat in the rheumatologist’s office after years of failed physio therapy attempts to stop my joints popping out of place, she fine tooth combed by entire medical history and then she explained “Everything is caused by your Ehlers Danlos Syndrome. Everything”

Even my heart defect. And even that one weird time when my uterus ruptured during my third and final cesearean section.

All weird. All seemingly unrelated and yet now I was being told that they were all related and all could be easily explained by EDS.

It was a shock. And it was strange and scary. And at that time, I knew no one with the same condition as me. Trying to explain it to people they would look at me like I had three heads. There’s been many times since my diagnosis where my own doctors have to google EDS as they don’t know what it is.

Finding others that have EDS has made my knowledge grow. Groups online have taught me so much about how to manage my condition on a day to day basis. The phrase “ knowledge is power” has never meant more to me than when I realised that I could prevent jaw dislocations by changing the way I eat. That a certain cushion could support me in my sleep and prevent a partial shoulder dislocation in my sleep… it really helped. It hasn’t solved the issues completely but it’s enabled me to have a small feeling of control over something that in the past I’d never had control over before.

So when my good friend’s child was faced with years of quite serious and debilitating illnesses, all seemingly unrelated, with numerous hospital stays and ongoing tests; I saw a familiar pattern emerge.

I recognised it all. Doctors were left scratching their heads over Ava’s medical problems until they finally diagnosed her with EDS at the young age of 8, and they then started to look at her little sister Bella and my friend. They were all diagnosed shortly after. And although it saddened me, it also filled me with hope that the medical profession was finally starting to think ‘zebras’ instead of ‘horses’ when presented with a child and her family with a series of medical problems. It also made me want to be able to help my friends and fellow zebras.

To help with giving them some power over their diagnosis, and to help make sense of it all.

When the Ehlers Danlos Society produced a book for children to help them deal with EDS, I just had to tell my friend. They explained it in such a lovely way and used the zebra and it’s beautiful rare stripes to bring a sense of pride and ownership over having a unique condition to life for children.

And so today, little Ava and her family, me and my children, and many other zebras will wear our stripes today.

And we hope that seeing our stripes will make you wonder and ask why the stripes? Why the zebra?

So that we can explain and spread awareness. And maybe that one day doctors and the medical profession will think differently and help diagnose us sooner.

Thank you to Beverley Smith for allowing me to tell part of your story.

A Desperate Plea From A Relative Of A Rough Sleeper By The Masked Avenger Anonymous

We have all walked past a rough sleeper on the street. Sometimes we give it a second thought. Sometimes we stop and chat, maybe even try to help.

But mostly we walk on by.

Most of us are fortunate enough to have never been there and while we sympathise, we often try and forget it and move on with our busy lives. Rushing to get somewhere; an appointment or some such.

We often don’t see the person beyond the sleeping bag. Sometimes it is very hard to imagine how someone got there. The government dehumanise rough sleepers. They advise us not to feed them as though they are pigeons in Trafalgar Square. They put spikes on floors to stop them being able to get some shelter in a shop doorway. Again treated like pests. So it’s no wonder that we walk on by. Sometimes it is a taboo subject.

But for me it is different. I happen to know a rough sleeper very personally.

You might want to ask me a few questions. Does anyone help him? Is he loved? Do you help him? The answer is yes. To all of the above.

But our help is not enough and the ‘why’ and the ‘how’ he gets into this position is what is complex.

My uncle has undiagnosed mental health conditions. He is an addict. Self medicating I guess. He has never had the support he needed from the professionals. And this is the product of years of neglect.

Born in the 60s to parents with severe mental health issues that lost everything down to gambling, my uncle was not diagnosed with anything himself or supported. Instead when the family broke down, my grandmother had a mental breakdown and no one was there to help. The authorities left my grandmother to it and just took my uncle away into care when he was 7. And that was the start of it. In and out of care. In and out of trouble.

” A handful, naughty, out of control, the mother can’t cope”

While he was in the place that was supposed to care for him, he was abused.

He went in as a child with problems and came out disturbed with even bigger problems.

No one knew what happened at the time. This is only a recent revelation. So he continued. In and out of trouble causing merry hell for the family.

As he got to adulthood he started to ‘self medicate’ and slowly but surely became an addict. Which led to petty crime, prison. And eventually being institutionalised .

“A write off'”

On paper yes. But what no one else saw was the snippets of the man he could have been if the support had been there during his childhood.

Detained at Her Majesty’s pleasure, he had structure, routines and he flourished. He took courses and passed them all. He read and learned and became a talented writer.

He did endless courses and took all of the opportunities he could. He grabbed them with both hands.So when he went back into the outside world he started his own business, he even wrote for a national newspaper as a regular columnist. He became a published author. Some semblance of a normal life was finally coming his way.

He was capable and intelligent and we could see the person he could become if he’d been given more support as a youngster.

But things happened and again the support fell away. Without the guidance of a probation officer, without the structure, his mental health problems that simmered under the surface reared their ugly, scathing, self destructing head again.

Addiction came back with a vengeance and along came some new ones too.

So we saw him slip back. He lost everything and again he went on the slippery slope into the abyss of addiction and self destruct.

So, we try to help as a family, but its not possible to keep an eye on him 24/7.

The downward spiral was and is fast and relentless;he loses touch of where he is and he ends up on the street. He loses contact with any kind of support network and before you know it he is sleeping rough.

We can’t track him. We don’t know where he is.

We’ve had phone calls in the past from wonderful passer bys that have tried to help him. In his moments of lucidity he remembers a number of a random relative and some very nice person decides to help him and calls.

We then hear he’s been in various places begging as he has lost everything. So we get there and we have to try and get him some help. He’s unwell and doesn’t know where he is. The police come and tell us not to bother with A and E as they are overcrowded but that they will try to help him.

Do you notice that even though I’m describing events in the past that I am using present tense? Why you might ask?

Because this is a recurring event. This happened last month but it could happen tomorrow, next week, next month. We never know what will happen next. This is the pattern that happens over and over again.

Services that are cut to shreds still try their best to help him. There are genuinely good mental health staff, hospital staff, police officers and key workers out there.

But it’s not enough.

The services need to be joined up. They need more funding to give him the intensive therapy and support for his mental health needs as this is the root to all of his problems, I believe.

But all that happens is the problem is treated that day. Acute support is given while he is physically unwell. But there is not enough in place to prevent this from happening again.

So I sit here and wonder what people must think when they walk past him. When he ends up on the street, bounding in and out of shops, trying to get someone to help him.

They will never see the man he can be. The man he has been, the man he could have been.

Every person has a story, but homeless people are nothing more than pests to the Tories.

If we followed the advice that they give us, which is to ignore a homeless person, don’t give them money or food; if every passer by that has helped my uncle thus far listened to this advice that this ‘government’ dish out my uncle would be dead by now. Perhaps that’s what they want. By treating homeless people like pests perhaps they think they will just die off.

But instead there are good people out there, people try to help. And for now he and we are riding our luck. That might just change one day. And we dread phone calls sometimes. What will happen next we just don’t know.

So I want to say to the people that help, the doctors, the nurses, the passers by, the staff in Pret that give out food, the key workers: Thank You!!!

Don’t ever change and maybe one day if we fight hard enough we will have a government that cares too so that real change can happen and people living in the streets being dehumanised by a callous government will be a thing of the past.

Should Abuse Ever Be Ignored? By The Masked Avenger Anonymous

Author Anonoymous

Maybe ignored is not the right word but I am finding words so difficult right now. You see a really good friend of mine is struggling and I am broken watching what she is going through. She is in such a bad place and I can’t help her. In fact no-one can really help her though she should have had help 65 years ago!   

She is the reason I am now wondering if sexual abuse should ever be ignored.

I had such a black and white view of this until this week you know. I was one of those people who would want to kill a paedophile and would scream at the news in anger when child molestors were given short jail sentences. Child abuse is wrong. Sexual abuse is wrong. So why would anyone think it should be ignored? 

Well what if the victim had, after many years of recovering from a mental breakdown and hours upon hours of counselling, finally moved on from a very traumatic childhood. I was so proud of my friend for this. She had her life together finally. I watched as she raised her own kids and went on to have grandchildren. I mourned with her when her husband passed away and admired how she adapted to living on her own. She was settled, happy and well and then all of a sudden this week that changed and I am angry for her. 

You see I was with her when things changed. All it took was a phone call. I was in her house when her phone went and she questioned if it was a crank caller. I wish it had been, I truly do. I wish her phone had never rung. Out of nowhere she had a call from the police. Can you imagine watching daytime TV comfy in your reclining armchair having a cuppa and a scone and a natter with your friend and the police ring you and you have no idea what has happened? 

This is why I wanted to talk to you about child abuse and sexual abuse. This is why sometimes I wonder if it IS best ignored. 

My friend was abused as a child. We just don’t talk about it. We are the generation that sweeps stuff like that under the carpet and get on with our lives. Apparently someone else decided he or she could no longer do that and several months ago the children’s home my friend was in as a young child started to be investigated by the police for abuse. Yes it happened. No-one doubts that. But this was sixty plus years ago. Yes I know the perpetrators should never have got away with it but is it right that after almost seventy years things need disturbed? 

My friend wants her life back to how it was last week and she can’t now. The resurfacing of the past is destroying her. 
She asked me why someone would upset her like this? 

She wants to know why she should have to relive memories she wants to forget. She is old and tired and has reconciled her past. The people who abused her are long dead, so she assumes. Now my friend is so so sick. She can’t sleep, she is imagining all sorts and not eating. Why do that to someone who is in their seventies? 

What is being gained from digging up the past?

Hundreds of people are going through this now. Children’s homes, boarding schools, mental hospitals and so forth from the forties, fifties and sixties are all being investigated because of abuse of children and vulnerable adults. It was common place in our time. We all know it happened and it is shocking and awful. But when I look at the state of my good friend I am so worried about these investigations now. If the victims are past pensionable age what age are the abusers now? They will have lived life and many will have passed away. Even those who are still alive, is it worth jailing a 90 year old for something he did at 19?

I know for some finally seeing their abuser locked up may give them closure but what about the other victims who have had memories dragged back up and are now left alone, vulnerable and ill as a result of having to discuss things they had long buried and moved on from? 

While the State may end up looking after the abuser people like my dear friend have been left in a state. 

I tell my grown up kids that is something isn’t broken don’t touch it. Maybe I am old and old fashioned in my ways but I can’t help but wonder if there are times when abuse is best forgotten about or ignored. 

What if the trauma of all this kills my friend?

There is no punishment enough for that. 

No-one Today Should Be Caring Alone By Miriam Gwynne

By Miriam Gwynne

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child, who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone

Mental Health ‘Care’ is Not What you Might Expect By The Masked Avenger Anonymous

Author Anonymous

* Please note trigger warning ( suicide) *

I’ve been detained under the MHA (Mental Health Act) twice within the last two years. I will describe my own experience of my last admission. 


I have 3 mental health diagnosis, an eating disorder in which I have a lot of fear foods plus an allergy to wheat and gluten, I have PTSD for which I can be triggered and recurrent depressive disorder. The latter means that my mental health fluctuates in waves going from a flat enjoying nothing mode in which I manage to function and maintain normal acts of daily living such as getting up and out of bed, washing and dressing and eating the foods I will eat. 

I have a fear of phones but keep in touch with my 2 friends and 2 of my children by text and I will talk to my GP on the phone.

 
In the low periods despite attempts to change I can’t gather the energy to get out of bed apart from loo trips. I don’t wash or dress, my eating varies and I withdraw from the world and push people away. I spend most of my awake hours crying, and honing down my suicide plan to the final piece as I lose all hope that I’ll ever get better and the emotional pain is so intense I’m unable to cope with it. 

On this occasion my care coordinator had visited me and said that she would be requesting a MHA assessment and left the house. I paced around crying having found my first hospital admission awful and not wanting to go again. I wanted to take my overdose to end my life but thought the MHA crew would appear and save me and I didn’t want to be saved.

Eventually at 8pm, eight hours after my care coordinator had left, I managed to phone the out of hours team to find out what was going on and I was informed that the MHA assessment was booked for 10am the following morning. With this information I believed I had the time needed to end my life and took most of the tablets in my bedside drawer. A mixed overdose of about 8 drugs but including tricyclic drugs I’d previously stored at a time I was prescribed them. 

I lay on the bed fully clothed in clothes I’d been in 24/7 for several days. I didn’t expect to wake up. I remember nothing from that moment to waking on a ward in the medical hospital. 

It transpired that the 2 doctors and AMHP had arrived and not being able to obtain entry asked a neighbour (who has been nasty to me since I moved here so I avoid him) to climb in my bedroom windows and let them in. They couldn’t rouse me so I was taken to hospital where I woke later. It was a couple of months before discovering my neighbour had been in my bedroom and was aware as he gleefully told my daughter about it. 

What happened after…

So the MHA assessment took place in the medical hospital at 2am the morning after I was found and I was detained under section 2. I remained in this hospital for a further 36 hours as there were no beds. My bed was an observation bay right by the nurses station, the lights were on full there all night but I wasn’t allowed to draw the curtains for shade so I could sleep so I didn’t manage to sleep at all in that light. 

I was then transferred to the psychiatric hospital acute ward and shown my room. There I stayed in bed, still fully clothed completely covered in a sheet apart from loo trips for over a week. I cried the whole time and if I slept during the night I don’t remember it. I was aware of every hourly check from staff looking through the bedroom door all day and all night. 

Once or twice people put a plate of food on the bedside table and left it there but the food was all my fear foods as was everything in the canteen so I ate practically nothing during my whole stay. 

After a week and a bit I asked whether it would be possible to be taken home to collect some clothes as I’d been wearing the outfit I’d been detained in day and night since. I asked every day but was told there were no available staff to do so. On day 12 I went to the ward manager’s office and said how long I’d been in my clothes and how I needed things from home. Within an hour a member of staff took me and I collected night clothes, another outfit and toiletries. After this time I started to go into the lounge occasionally but was frightened of 3 ladies on the ward, 2 of which had major anger problems and 1 was extremely unwell and very unpredictable.

One of the ladies with anger issues later told me she didn’t want to be discharged as her partner was violent and she had nowhere else to live so every time discharge was talked about, she’d deliberately kick off meaning her discharge was delayed. She assured me she’d be there months. 

The canteen was terrifying for me. I’m frightened of men and the dining room was shared with the male ward. Many of the men behaved badly making obscene suggestions as well as throwing chairs etc. 

There was no food I could eat anyway so sometimes I’d grab a banana from the fruit bowl and immediately go back to the ladies ward. This satisfied the staff I was eating and the staff in the dining room could tick me off their list. Sometimes I’d take a bite of the banana but usually didn’t and would bury it under paper towels in the bin back on the ward.  
One teenager cut herself so badly during the night she was whisked off with the 2 qualified members of staff to A&E in the adjacent hospital. They never returned so no one could have medication and the following day the consultant was at the main hospital too. The teenager never returned, I’ve no idea if she survived. The things from her room were bagged up and taken away from the ward. 

Apart from a mindfulness session every weekday morning nothing else was on offer. I didn’t go to the sessions due to fear of the men but I have done mindfulness to death in the community and despite hours and hours of practice find it never helps me at all. But for some reason mental health professionals think it cures all psychiatric ills and it’s the only therapy I’ve been offered in the community in my 7 years with them. 

During my weeks on the ward I only ever saw one qualified nurse in the lounge, sitting and talking to patients. She’d bring her laptop in to write up her notes on Rio but would talk to patients alongside this. She was really nice, I’ve heard she’s left now which is sad. The only times I saw qualified staff was at the hatch to the medicine room as they dished out tablets. Apart from those times they stayed in the ward office and we never saw them. I had a named nurse who I never met. 

There were 2 or 3 health care assistants who were visible and about the ward, they were all male but we’re quiet and calm so I was able to cope with them with no problems at all and one in particular was kind. 

I was discharged feeling no better. At home my dining table was covered in piles of thing labelled with who they were to go to, and 3 envelopes containing letter to my children. 

On my discharge notes it said I’d spent the first 10 days asleep in bed!! So all those days I’d cried day and night barely catching snatches of sleep, I was apparently asleep the whole time. 

The thing is no one ever talks to you or asks you anything so they guess and assume and that’s the basis of their paperwork. My diagnosis was even better, it was factitious disorder which totally shocked me once I’d looked it up. Fortunately both the community CMHT (Community Mental Health Team) and my GP said that was total rubbish. CMHT told me that hospital consultant is renowned for his bizarre and incorrect diagnosis. Useful. Not. The only thing that kept me sane there was my weekly phone call from my GP. She’d listen to what was happening, how I was feeling and what was being said and she’d spend 30-45 minutes helping me make sense of it all and help me see things from a different perspective. Ironic really that the only helpful member of staff during my time there was my GP back at my surgery! To me that ward is nothing but a holding cell. 

Therapy would be good as would be some interaction with qualified staff or your named nurses. And it seems when someone is detained and needs a bed, the patient on the ward they deem to be the least risk is immediately discharged, better or not, to make room for the new arrival. Because I was quiet and not disruptive, that was me.

I hope one day that I’ll be offered some therapy from the community team. But I’ve asked for CBT or a psychological assessment several times and the answer has always been no. I want to leave CMHT as I’ve found little helpful and they’re not proactive but my GP encourages me to stay with them because with my recurrent depressive disorder I get low, and when I get low I get very very low and lose all hope. But I have no intention of going back into that hospital again, no help is available there and the diagnosis you come out with is fictitious in itself.

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