Long overdue update hello world

Its been absolutely ages...made a wee vlog as no spoons to type

Womans Hour Power List - Dr Sarah Campbell #WHGamechanger

Chuffed to bits I must say

The Radio Four Womans hour Power list is being compiled again, this year with a difference, instead of a list full of Mp's, the Queen and Journalists they want "Game changers" women from twitter campaigners to  women in thier communties that have bought about some kind of change.

I am very proud to have been part of the Spartacus campaign, most people would automatically think Kaliya Franklin and Sue marsh as being the architects of the successful "bedactivism" campaign that forced the government to make massive changes to their contentious Welfare reform Act 2012 as it went through parliament. Many got behind it, and I still remember the day the "Responsible Reform Report" was launched - the term I am Spartacus was coined and 1000's of tweets were tweeted.

The report was cited in speeches, so worried were the government they gave a lot of ground, it was proably the first time ordinary sick and disabled people using social media had done such a thing. Im not sure it will ever be repeated in such a way.

But

This is about game changers, they changed the game and yes they did, but the thing that enabled them to was the report - everything was built around that. and it wasnt written by Kali or Sue as they are the first to say its lead Author is someone else the real game changer in my humble opinion

Step forward blinking into the limelight

Doctor Sarah Campbell - like many in the campaign, is a chronically sick and disabled woman who before she had no choice but to stop working was a Mathematician & Researcher: The lead author and researcer of the Responsilbe Reform Report. 

Sarah is amazing, From her day bed number crunched, researched, wrote and pulled together the resport, many others helped and contributed but without her intial research the incredile campaign would have been a load of angry people shouting, the game changed with phorensic annlysis, factual, careful and undisputalbe work.

The government benches freaked, and conceded and backtracked and worried and very nearly gave us more than we dared hope. Everything we said would happen in the report has happened, its a mess and the government chose not to listen made empty promises to buy off peers and MPs - the chickens are coming home to roost.

But back to Sarah - Game Changers are not always attention seekers, or leaders or even well known but I am proud to call her a friend and without her work I dread to think how very very bad it would be and its already very bad.

Radio Four have got my tweet on thier website -so chuffed the title says it all Inspired suggestion

Womans Hours - Powerlist blog

She will probably kill me for this, but i hope secretly will have a little geeky smile - Its was never about recognition for her I know, but credit where credits due

Why? #justiceforLB - Updated

Connor Sparrowhawk was 18 - He had Epilepsy, was learning disabled and died in an NHS Unit on July 4th 2013 - I have followed his mums fight for justice for him and to get the truth known about how a fit and healthy young many could drown in a bath.

 
I didn’t know LB – but you only have to watch this video  LB - the ultimate Laughing Boy  His smile says so much. I cried watching it, It bought back my own story – when I “lost” my son for a long long time. But unlike LB – mine has a future. I cannot imagine the pain and loss his family feel. It must be hard enough losing a much loved child, but to know it was preventable is beyond me. 

I made a  promise last night – there will be justice for LB and all the other dudes hidden away in assessment units and homes – Im just one person but I hope you read the Report and join the #justiceforLB campaign on twitter or get involved via his mums blog my daft life – Its time we changed the way society views learning Disability and importantly the Health and Social Care system – it wont happen over night but it has to happen if LB is ever to truly get justice.

The report concluded the LBs death was preventable.

Why?

No matter how I try I come back to Why? 

Why do people with learning disabilities who at 17 years & 364 days need support to varying degrees, suddenly the next day become an “adult” so the Health and Social care world can effectively change the rules.

Where before the family are vital advocates in trying to get the best care and support for their child, become a nuisance and viewed as antagonistic and unduly controlling the day their child becomes 18.

Particularly in LBs case, where NO actual assessment was ever carried out by the Unit so they were effectively working blind – and chose not to engage with Sara (Lbs mum)

This is important as this to my Non Professional eye contributed towards LB’s death

Why? Do we as parents, patients, families, campaigners, interested people have no option but to be fluent in and use the jargon of Health & Social Care NON Language

Pathways

Capacity,

Challenging Behaviour

Personalisation

Independence

Personal Budgets

Transition

To name just a few of the jargon words that obscure and deflect the true reality of learning disabled people’s lives and their family’s realities. These words crop up throughout the Health and Social Care world.

Language matters, the assumption is that We as non professionals will learn the language Did  it contribute towards LB’s death?  I expect no one bothered to tell LB he was supposed to be fluent in it  and while others said he was Transitioning towards independence – maybe he was scared by all the changes and conversations about leaving school and didn’t understand what all the jargon meant or maybe he did and that increased his anxiety?

Why? Wasn’t LB’s family listened to, particularly his mum – when she tried to tell them about LB, his needs, likes, dislikes, his medical history, his epilepsy well basically everything about him.

This Contributed towards LB’s death!!!

I see it time and time again, hell ive been there and got the T-shirt the endless months of trying to get my son T help when he has his first mental health crisis, being dismissed, ignored and told repeatedly I was just “mum” I will bet my fabric stash (and it’s a big one) that LB and his family had little to do with the learning Disabled team because somewhere along the way “mum” was fed up, angry and disillusioned by the “system” and LB said ive had enough.  – the Unit was just another battle in a very long list of battle to make sure LB got the best care, that he was understood and seen as a human being

Why? wasn't LB given the respect and understanding he needed, the one person missing from the report really is LB where is he? I don’t mean the contradictory LB described – I mean the recognition he was only 18 by the staff and scared, confused and angry. 

The Unit failed to carry out a full assessment because LB didn't want to participate - non of the 17 trained staff, that included psychologists or senior managers revisited this? How can you get a sense of someone if you dont talk to them?

I have struggled with this particular WHY?

This report isnt just about the 4^th July – this is about the 15 weeks that lead up to it.

I don’t want to even explore this why –in part I don’t want to add more pain to LBs family.  I hope many people do ask this why, because its time we collectively stopped pretending to ourselves its ok and people are professional right?  Caring right?

Wrong

The "sauce indecent" – got to me on so many levels 

There are two versions of this incident - actually three but LBs version is not recorded, was he ever asked?

 3.10 CS attacked a member of staff on 2 May. CS had become agitated during the evening meal and lunged at a member of the nursing staff, ripping the individual’s shirt. Staff restrained CS and transferred him from the dining area to his room. CS initially did not respond to de-escalation techniques but gradually calmed down and staff left him in his room

If you read the above you might think LB was unpredictable and agressive, the member of staff was justified in thier response..but what if you read this bit first?

 5.44 An incident took place in the dining area on 2 May when CS was having dinner. He was putting a lot of sauce on his meal and S11 was joking with him about it. When S11 approached CS to see how much sauce he had used CS became agitated and rushed at S11, trying to hit him and ripped his shirt. CS was restrained. He was taken to his room where he remained restrained. He did not respond to de-escalation. He was given prn 0.5 lorazepam and left in his room. Ten-minute observations continued from 18.50 to 19.40. We found no record of observations until 20.30 and they then continue without a break. CS stayed in his bedroom until morning. His mother was told what had happened.

The staff member may have seen it as a ”joke” but so did the staff at Winterbourne View, A supposedly experienced member of the team well im guessing experienced they certainly explained all the restraint techniques well enough, yet didnt have enough **Autism awareness to know that LB like many learning disabled people struggle with social interaction, often don’t get “jokes” add in a stressful frightening experience is it any bloody wonder he lashed out.

The blatant lack of respect, told from a perspective that LB was unstable and aggressive, actually what I read was a scared dude who was being bullied. Yes Bullied and then restrained by the Bully – Care that isn’t care that is the biggest Why of all – how was a culture allowed to develop in a £3,500 a week well resourced, well staffed unit that said it was OK to pass the buck,  trivialize his epilepsy and  bully a vulnerable, scared learning disabled dude who had no power because the most important advocate he had wasn’t bloody listened to which  ultimately contributed to his death.

PS: I'm not the only one who has been moved to blog and ask Why? 
Have a read of a few other bloggers thoughts on the report and the appalling way LBs family have been treated.

Im not sure I could read all of them at once. They are both personal thoughts and brilliantly analytic, oh and heartbreaking, rage inducingwords - that unlike Southern Health get it

Mark Neary - "A Preventable death" Some questions
The SmallPlaces Preventable
George Julian discrepancies-blatant-misses-and-gaping-holes/
Making It up i-remember-his-jeans-were-wet

Funky Mangos Musings connor-sparrowhawk-death-by-indifferenc
Arbitary Constant On Southern Heath & connor sparrowhawks preventable death
People 1st England statement The preventable death of Connor Sparrowhawk
Indigo Joe Blogs let-it-not-be-about-lessons-learned
Building our nest together parents-not-spoken-to-enough
All big ideas start small some-thoughts-on-lb
A bit missing a-preventable-death-justiceforlb
Arbitary Constant congratulating-southern-health-and-fisking-them-and-true-leadership-justiceforlb/ 
Chris Hattons Blog /bystander-apath
Mental health and mental capacity law connor-sparrowhawk-easyread-version 



**I will add more if I see them

#Fibromyalgia & #M.E A Call to Action Update

A Lot can happen in 24 hours

Yesterday I wrote an angry scared post about the possibility that the World Health Organisation (WHO)
might reclassify both Fibromyalgia and M.E as psychological and behavioural disorders.

Events moved fast, I tweeted my outrage, it got retweeted lots of people asked WHO if it was true, they said NO its not they had no plans to change the classifications. I learnt a bit about an amazing website focusing on M.E. The site will no longer be updated, but will remain http://dxrevisionwatch.com/

I read two fantastic blogs written by women who like me who are concerned that both conditions are vulnerable to misinterpretation
.
M.E & Fibro could be reclassified by WHO (updated)
Fibro and M.E Misunderstood disorders

I had replies and conversations, today there is a basic plan of sorts so the Call to Action stands.

Why?
The WHO have said "There are not plans to reclassify either Fibromyalgia or M.E" that potentially means the classifications will remain incorrect, they do not reflect the latest research breakthroughs, and in the case of Fibro hasn't really changed since it was first classified in 1992!!

It matters because the classification ultimately influences:
How our health care treatment is determined,
How easy it is to get our pensions if they released early if we have to retire or get sacked due to ill health,
How big insurance payouts are if people have a whiplash type injury that isnt thier fault eg a car accident and go onto develop fibro
How the next generation of medics are trained
Crucially builds up funding and momentum for research

That is why its time to find our voice, many of us learnt just how powerful we are when ordinary people work together to push the establishment, I was proud to be part of the Spartacus Network Can we do something similar within the world health community? why not I say

A facebook group has been created to let anyone interested come together - I need a few people who will help me develop the campaign and tools. I'm hoping lots of people will use them and take part - we have to be our own advocates. FibroME ForAction Community (facebook group)

For now its on Facebook but who knows what it will be next week :) 

Basically the plan is to - Work to get the classification updated and changed to reflect the research.
Specifically:
WHO
NICE here in the UK.

This isnt a UK issue its a world issue, I know there is lots going on, many groups and charities are working to get research recognised. There are lots of individuals who are tired and worn out,  so maybe its time to be our own advocates and build on their work and develop our own. Its not a competition, I am just one chronically sick woman who isn't willing to wait for others to advocate for me.

I had no idea yesterday what I had started, but I feel a little less angry and a little more determined - Please Join Me 

A Call To Action #Fibromyalgia #M.E

I often meander along with this blog, writing what ever makes me want to tap the keys. Today I read something that made me both angry and terrified in equal measure.

NB: I have removed the link to the article that sparked this post - as it is now showing up as page not found. I dont know why. Despite this the blog stands - I have thought for a long time that its time to get both illnesses properly classified. 

In short the World Health Organisation classifies all known disorders and diseases. For a long time there has been a tussle between Research Psychiatrists and Research Scientists about the cause of both M.E and Fibromyalgia.

Are the illnesses really in our heads and we are just making it all up malingering and developing illness behaviours so people feel sorry for us in our depressive illness so convinced our we that our pain, fatigue and assorted neurological symptoms are real...as some notable and influential Research psychiatrists would have the world health community believe

Or

Are the illnesses really physical in nature - both neurological and physical malfunctions of the central and peripheral nervous system. That due to misfiring signals to the brain create very real symptoms that are not imagined but are as real as as any pain, fatigue and neurological. as the Research scientists are discovering the more they look into it.

let me say it clearly I'm not "mad" im ill and now im very very angry

The new classifications is in draft and we have until 2017 to speak with one voice to make sure that the science is heard, we are heard and once and for all we dispel the myth that we are all delusional layabouts that we just need to get off our backsides.

I am not for one minute saying we dont need support, or that psychological help has no part. But It is NOT the root cause - It is NOT a mental or behavioural disorder.

What can we do:

1. Research - pull it all together fully referenced in one place, including bloggers links etc
2. Lobby 
3. share our stories - our truths 
4. Galvanise the online community, our friends and loved ones to make a bloody big noise - that is coordinated and focused
5. leave a reply here if you are willing to help. Im just one scared angry voice - I cant do anything alone. Im not an academic, or even a very good writer. but surely if all the bloggers, academics, medics who believe in us and we make enough of a stink we might just finally break through and get what we deserve..

a true diagnosis and treatment that helps us manage these disabling illnesses  - even if the article is not as bad as it could be - there will be another scare, and if we dont do it then one day people like Professor Fink will win his argument that its really Bodily Distress Disorder (BDO) and the research will dry up, the breakthroughs end and once again we will be treated as people who make this shit up

As another well known campaigns slogan said so powerfully - Alone we whisper together we shout..lets shout but use evidence, reason and our stories to do it. xx


Thanks to spoonydoc for her great supportive blog http://loopys-rollingwiththepunches.blogspot.co.uk/2014/02/fibro-and-cfs-mental-disorders-who-must.html

Dont sweat the small stuff #Stress

waking up ferling like you have the worse "flu" ever,  your body aches everywhere and you feel drained of energy. Add in a whole host of neurological symptoms from numb fingers to blurred eye sight, you can imagine just how horrid it feels when you have in spoonie terms hit the wall.

That was me yesterday, my bodies reaction to stress. what could be so stressful in my life that bought this on?

A barny with my husband, one of those stupid nothing rows that blow over nothing and just as quickly are done with.  Except in my case its not done, my body doesnt handle stess well it triggers a "flight or fight" hormone response that in most people only occurs in really scary situations.

We've had a few weeks of stuff bubbling away that I thought I was coping with..I guess not

There is only one way to get back on my feet - Rest and plenty of it,  im in my jammies, snuggled up doing nothing.

if your newly diagnosed you might ask How Can I reduce the impact of stress?

I could say try and avoid stress..but seriously thats like saying never leave your bed again ever!!

i had to get real and honest with myself and look at what I find stressful and what I didnt,  I made a list.

what can I avoid and what I cant,  for instance I cannot manage or cope with telephone key pad options press 1 and all that.

But I can easily navigate my way around insursnce websites that drives my husband up the wall. you get the picture,  Its personal but important.

Many people swear by meditation for relaxing but personally its not for me, alough I will sometimes use a CD of thunder storms when I cant sleep.

what ever works for you try it, but if you are anxious and get wound up easily then im sorry your fibro is likely to be bad.

As they say dont sweat the small stuff,  LM and I rarely row or bicker we work hard to live in harmony because the effects on me are horrible. 

Seasonal Affective Disorder and Me

Seasonal Affective Disorder and Me

Now the Sun has gone,  

I’ve felt your presence, stalking my thoughts

Inching closer to me ready to flip the switch

From light to dark, as you suck the joy

Leaving me with tears and bleakness

There is no escaping you, as the nights draw in

You come tip toeing into my mind like an unwanted guest

Now I feel S.A.D – Seasonal Affective Disorder

I have suffered since my teens, for many years I shrugged it off and didn’t see the link that every depressive episode has always without fail come in the winter, but I understand that now. I’m not officially diagnosed, but that is more about not having a decent GP who doesn't put everything down to having Fibro.

This morning I woke up tearful, sad and ready to hide from the world – yet on Thursday I had a lovely evening out where I felt perfectly fine. There is no trigger for the depressive feelings; I am the happiest I have ever been, my illness is what it is and I’m OK with it, my son is finally happy, and I have lots to look forward to.

But

Those familiar feelings are here and the only thing responsible for it is the winter; dark days trigger my brain into a depressive state. I will remain like this until April.

Just because I know it doesn’t mean I can’t do anything about it, but I also know the signs and know if I don’t act NOW – I will spiral down into a very bad place.

What are the signs of SAD?

There are a diverse range of symptoms of Seasonal Affective Disorder; many are associated with a feeling of general depression - which is why it is sometimes known as the 'Winter blues'. Below is a list of possible symptoms.
An example of SAD Symptoms include: 

• Lethargy, lacking in energy, unable to carry out a normal routine.
• Sleep problems, finding it hard to stay awake during the day, but having disturbed nights.
• Loss of libido, not interested in physical contact.
• Anxiety, inability to cope.
• Social problems, irritability, not wanting to see people.
• Depression, feelings of gloom and despondency for no apparent reason.
• Craving for carbohydrates and sweet foods, leading to weight gain.

It is always important to consult your doctor if you believe you have SAD as it may be another condition.  From the SAD charity

How I cope

I tell people; I’m honest with my husband and people close to me. He can’t fix me, but he is watchful and encouraging when I cannot be for myself.

I use my SAD light box, one hour a day helps take the edge off – it tricks my brain into thinking it is day light and gives me vitamin D.

I go to the doctor and I ask for anti-depressants. I cannot work my way through it, I don’t need talking therapy and I am not depressed in the sense of a life trigger this is a chemical imbalance in my brain and I need help until the Spring.

I am kind to myself and use mindfulness to manage the thought and feelings as best I can.

I write. I know with a combination of a deterioration of my illness – winter’s crap for spoonies + SAD-I have six months to get through. I know I will come out the other end, but it’s hard, really hard sometimes. 

Today I have friends coming to visit, I really want to see them - but I also want to curl up in a ball in bed with the duvet over my head. LM is being his usual amazing self, he is sorting the house ready for their visit and making things happen while I blog on here, gather my thoughts and try to function enough until I can see my GP. 

I wish I had words to really describe it but I can’t beyond yesterday I lived my life in technicolour, today it is black and white.