NHS cogwheels: why should I have to grease them?

I have to share please read the whole thing this is the state this conservative government is allowing our NHS to fall into. 

A few bullet points from me:

  • In December I was ‘transferred’ from one CMHT to another in the same city and then was given no point of contact until my GP chased nearly 4 months later, now I have a psychiatrist but I’m on a waiting list for a care coordinator. 
  • My medications are prescribed (mostly) in 6 monthly batches meaning every month I pick up my prescriptions direct from the pharmacy and don’t have to go to the GP. Every 6 months at least one drug is left off this order… It’s time consuming for all involved to try and sort out what’s been missed off. 
  • I have on many occasions been asked by consultants to take in a printed off letter detailing a care plan to my GP as it will speed the process of communication up by a week or more… This is great and I don’t mind doing it but when this letter is about a critical change in medication you kind of think wow what would happen if I wasn’t able to do this? And what is so wrong with NHS communication!

There are oodles of definitions of person-centred, or patient-centred, care – sometimes it can feel like people/organisations reinvent what they mean by these terms every time they start a new project or initiative. I’ll tell you what I mean by it: That the person receiving the care is the main priority of staff and services. That […]

https://purplepersuasion.wordpress.com/2016/03/22/nhs-cogwheels-why-should-i-have-to-grease-them/

Mind and Soul : 16 things not to say

Please take a look at the site I got this from its a real gold mine for Christian friendly mental health information… Not that nay MH info sights are not Christian friendly…ah… You get what I mean and its LATE!

Mind and Soul : 16 things not to say.

Things not to say


Yes, these have all been said! Yes, actually to people’s faces! In BOLD: What you said. Then: What the person heard!

Just give it to God!
One quick prayer and it’s all over, sorted, done and dusted!

Have you tried praying?
Just a thought, maybe you haven’t thought about it yet, you know even though you’ve been a Christian for 15 years?

Pull yourself together
You need a stiff talking to and someone needs to tell you

We all feel like that sometimes but you have to snap out of it
You know you’re not suffering anything else that no-one else doesn’t feel now and then so why can’t you just snap out of it like everyone else does?

Are you reading your bible?
I know you’ve been a Christian for 15 years and you use to preach, but maybe you’ve forgotten that when you are so ill and you cannot rationalise, you’re seeing things and hearing things, you can’t make sense of your words and anything or anyone around you, you’re visions blurred and your head feels like it’s going to explode, you can just pick up your bible and claim a scripture! It’s great isn’t it, as simple as ABC

I’m not getting into the boat with you – you’re full of self pity
No, I’m not even going to listen to anything you say as that would mean that I’m getting in the boat with you and agreeing with what you are saying and that would mean that I’ll be helping you simmer in your self pity and I don’t want to be classed as a negative person like you

Just fight it!
Just refuse to feel like that in the name of Jesus, refuse it, rebuke it, don’t receive it?

I’d never allow myself to get in that state
Sorry but what’s happened to you, will never happen to me, I’m fit, healthy and loving life, no way will what’s happened to you happen to me!

You’re looking really well
You look like there’s nothing wrong with you, in fact I think you’re making it all up, cause to me, you look like everyone else

It’s your own fault
I was reading Job the other day, what sin is in your life that you haven’t confessed and dealt with yet?

There’s no such thing as depression, you’re just feeling sorry for yourself
What is all this poppycock about depression and illness? you need to get a grip and stop pretending you are ill

You’re a hypochondriac
Honestly, there’s people out there who are really ill, I think you enjoy it

Shouting at someone
I need to disciple you, discipline you and put you right, now STOP IT

Why can’t the doctors do anything?
Why can’t the doctors sort you out? I mean they’ve always sorted me out and everyone I know so why can’t they sort you out? Tell me? It’s very frustrating and I can’t work it out

You should just stop taking all those tablets and just trust in God
Now I have a physical condition so if I stop taking my tablets, I would die, if you stop taking your medication nothing will happen apart from you will be trusting God more and you won’t have any side effects, so simple!

It’s a choice – you can change if you want to
Yeah… of course I choose to hate my self and wish I was dead… Thank you for pointing out it’s just a choice that I need to make

Things to say instead


This is OK to say in BOLD and This is why it’s OK. It’s not as hard as it sounds. Just be kind and empower them

If you want to talk, I’m here to listen
I care about what’s happening to you and need to listen to you as a friend to show you that. Then I can understand and help you. I realise this is going to take longer with someone who is mentally ill.

I’m praying for you, do you want me to pray for you now?
I don’t have any magic answers and I’m not trying to give you one but what I can do is pray for you. I know God answers prayer.

I have some practical wisdom I can share with you.
Because I’ve spent time with you and listened to you, I can see you need rest, space, food, spiritual advice etc and can help you.

I have no idea what it must feel like because I’ve never suffered from mental illness but I can understand it better now
I can’t contemplate what it must feel like to be mentally ill and I can now have sympathy to anyone with mental illness because I understand it now.

Could I help you spiritually in any way, perhaps share some scriptures that you may be able to draw strength from?
I can’t imagine what its like to not be able to draw from my bible because I’ve lost the ability to think clearly and be in control of my mind. If I can help by writing some scriptures out or reading from the bible for you, or get some bible tapes for you, I will.

Shall we go out together somewhere? Can I take you out somewhere?
Special times with friends help and if I can help take you out for a while it may help you escape from the same surroundings and focus on something else for a while. It must be awful when you are to not be able to go out at all because you are ill and you’ve lost your work world and other social outlets.

I can see your not feeling great at the moment, do you want me to go and come back tomorrow or another day?
I can appreciate that if you’re having a really bad day, I should come back another time and I’ll be able to help better

Do you need help getting your medication or a lift to the specialists?
This is a really practical thing that you need and half an hour of my time would be a real answer to prayer to you

Talk to them about something positive in their life, or an improvement that you’ve noticed
Sometimes when you are so in the middle of something and experiencing it every day you can’t see the small improvements that are happening or recognise an achievement or progress

Find out any likes, hobbies, what makes them laugh and work towards helping them achieve one of these
Laughter’s good medicine, we all need purpose in our lives and to feel we’re achieving something.

Help them work through a panic attack, and irrational thoughts.
Help them to breathe by going through simple exercises, pray for them, talk through calmly their thoughts and help them rationalise them.) All the physical effects it can feel like you are dying and is very scary. This can be very draining yourself especially if emotionally attached so take time to recuperate yourself after.

Don’t give up on them; it can take along time and a lot of hard work to help someone recover. They need friends and loved ones to stick by them.
Medication alone won’t do it; it’s all the social help and one to one work and prayer that will see the breakthrough

Alan and Amanda Stephenson, 05/05/2010

A Poem For You

I have fallen in LOVE ❤ with an album of late, the band Refuge released there Album Allowd A Voice (link is to iTunes) back in October and I have been playing it ever since! Possibly what I like most about it is that the songs are jammed in-between poetry and today I am going to share one of the poems with you because I think its fab!

The Universal Disease By Jeannine Nield

Someone starving, bleeding, crying
Screaming, tortured, slowly dying
How do you feel when you see
These scenes of pain and misery?
A crippled man with sightless eyes
With him you surely sympathise

A women battered black and blue
No doubt receives your pity too
How good we are at sympathy
When pain and torture we can see

But What if tears are left uncried
And screams and anger locked inside
With memories of abuse and fear
And hopelessness year after year?
As a child I was neglected
Ridiculed, ignored, rejected
Sexually abused by Dad
Yet grew up thinking ‘I’ was bad

Despite this I did well at school
But still I suffered ridicule
With others I could not relate
And so turned inward all my hate
No confidence, no self esteem
To be accepted was my dream
Tried sex and drugs to fill the void
But there was nothing I enjoyed
Poured out my heart to my GP

Where upon he labelled me
And down my spine there went a chill
As he pronounced me ‘MENTALLY ILL’

The fact that I’ve a high IQ
And that I’m kind and loving too
And with great talent have been blessed
Means nothing – because I’m depressed!
Twice I’ve attempted suicide
It would be better if I’d died
Because I’m still ignored, rejected
Ridiculed, neglected

Many so called ‘normal folk’
Treat my illness as a joke
Full of anger, scorn and greed
They seem oblivious to my need
And yet it’s ‘normal’ types like these
That fuel the fire of my disease
But I would rather be like me
And try to live in harmony
Than have a heart that’s full of hate
And skin as thick as armour-plate

You could help me to get well
To climb out of this living hell
Offer me a helping hand
Show me that you understand
Put away your needless fears
And all your preconceived ideas

‘MENTALLY ILL’ is just a label
Yes – I’m insecure, unstable
But if you’d lived my life instead
You, too, would be depressed – or dead!

Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

BBC News – ‘Internet addiction’ linked to depression, says study

BBC News – ‘Internet addiction’ linked to depression, says study.

Being addicted to the internet has some link to depression, although what makes up a addiction problem with the internet is not clear. Also unclear is what leads to what, weather depression causes people to become addicted to the internet or the reverse.

The study has received mixed responses from experts in the field of mental health. Some are critical of the theory saying that the data collected was bias because the researchers used social networking websites to recruit the participants.

Thinking of this on a personal level it reminds me that my mum always suggests that I use the internet too much, she thinks I have a addiction problem with being online. I also have depression and whether the two are linked in my case I am  not sure so I am going to continue to ponder.

Marian Keyes: ‘I understand the pain of her depression’ – Telegraph

Marian Keyes: ‘I understand the pain of her depression’ – Telegraph.

A incredibly well written and accurate portrayal of what it can feel like to live with a depressive episode, well worth a read for anyone that says people with depression need to ‘cheer up’.

Bill Oddie has also recently hit the headlines for his own experince of depression most recently

 

The Daily Mail – Bill Oddie in psychiatric hospital battling another bout of depression

 

BBC News – GPs access to depression treatment ‘is too narrow’

BBC News – GPs access to depression treatment ‘is too narrow’.

This is not really a surprise or a shock to read in some areas there are 6 month waiting lists just for a 6 week course of counselling! As a result drugs such as anti-depressantws are often used to fill the stop gap in treatment, while a patient waits for some other form of therapy.

BBC – Ouch! – Best days of your life?

BBC – Ouch! (disability) – Opinion – Best days of your life?.

School – for me it was not the happiest days of my life, in primary school I was isolated and ignored by my class mates, I had no friends was often bulled and did not have enough support for me to be able to access everything that went on in class.

Secondary school saw me make friends who accepted me for who I was, I had about 10 or so friends. The rest of the school saw me as an easy target and I was bullied, abused  and assaulted. As if that wasn’t all bad enough I had the teachers to deal with and the stigma of having an adult sat next to me in every class.

Then there where all the little problems that come up in class, having someone read to you in a room that is silent, having to sit right in front of the video to try and see it, missing out on posters, news and important events thanks to not being able to see them.

College was supposed to get better and at first support wise everything was a lot better I had more choice as to when I did and didn’t want support, but there where serious issues with members of staff. One such member of staff did not treat me well as a result of my disability, it was constant verbal abuse, that has damaged me forever.

College also saw my isolation return, for the first 2 years at college most days I had one of my best friends to keep me company at break and lunch times. By my third year I spent all breaks and lunchtimes either sat in the library, wandering around the campus in circuits or I just left and went for a walk.

It’s actually painful writing this post, there are many events during my education what I simply cannot write about, I have kept this post to the bare minimum but at the same time I feel I  have to convey what as a disabled kid I went through and now I feel thoroughly depressed!