Lost by Penny Mead

Lost by Penny Mead

I feel lost.
Does that sound strange? 
It does even to me but after a few weeks of wondering how I felt and why I felt this way I have decided the primary feeling is one of being lost.
So why do I feel this way? 
You may ask, or you may not but I am going to try to explain it anyway.
Many of you will know that the DWP and their partners in crime ATOS awarded me my ESA support group a few weeks back and have promised to leave me alone now until 2016.
A time for celebration? 
A huge relief?
An easing of the stress?
Yes yes and yes, all of these things but more, an underlying unsettled feeling too, a niggling not quite right feeling, not unhappy by any means but not quite happy either.
Why do I still have the dread? 
Because others are still going through the trauma
Others are still facing an uncertain future
Others are still dying whilst awaiting an appeal
Now I am no saint, I can be as selfish as the next person I'm sure,
 I can feel smug because the fight for me for the moment is over.......
NO,  no you see I can't and there is the source of my discontent, my restlessness.
I tried to ignore the stories, the articles, the tweets, I stayed off twitter and Facebook, I wanted to bask in the relief that it was no longer desperate in my own situation.
I covered my ears and my eyes, sang over the cries of others and walked away from 'the troubles'
At least I attempted to but you see that is not me, 
it is not who I am or how I think, feel or behave.
My own health took a turn for the worse with the arrival of ear infections that just wouldn't respond to treatment, this in turn led to the withdrawal of funding for the new medication I was supposed to be trying to slow progression of this disease down.
This then meant trips to the doctors practically weekly for the past few months and I tried really hard to concentrate just on that for the moment.
It wasn't being selfish to look towards my own health and my needs during this time was it?
NO,  no of course it wasn't and yet still this unsettled feeling persisted.
Gradually I allowed the reports to filter back in to my consciousness,
Gradually I heard again the cries of others fighting for their benefits and their lives.
Gradually I saw again the pictures of those that meant sick/disabled harm.
And gradually I again felt the rage, the fear, the hopelessness and the fight return.
You see I can't be all cosy and smug in my safe little world while many many others are in fear, in pain and dying at the hands of this cruel government.
I can't smile and pretend all is well with me while friends are going through the stress I went through.
I can't turn my back and walk away not even for a while
It's not me, it's not in my heart to ignore the battle being faced by others.
Every time I see/hear the latest figures, the latest fiction put out by this government I am consumed with anger. 
Every time I talk to someone going through this unfair system I am consumed with grief for them.
Every death touches me
Every wrong decision enrages me
Every lie told infuriates me.
How can I sit back and not feel, not do, not fight and not care?
How can I celebrate my small victory when so many others are still fighting?
Simple......I can't
Not because I am some sort of activist, not because I enjoy the fight, not because I want attention or any back patting etc....
Because I am human and I care
Do you? 


Yes, I have a mental health disorder. No, that doesn't mean I'm crazy.

Following a car crash 21 years ago I have severe cognitive impairments, including ‘behavioural episodes’ and a slight limp. Yesterday I would have said my mental health was fine.

What is ‘Mental Health’? A definition may include:
‘An individual's ability to enjoy life, and create a balance between life activities and efforts to achieve psychological resilience.’
How is my mental health? Answer: Sub- optimal!
Do I enjoy life? I enjoy aspects of it, specifically my family and some tasks I do, but big picture? I feel that I no longer fit in. Is fitting in important? If you don’t fit in you either don’t get the job or you don’t keep it for long! I have worked since my accident. I have flown to the top, but I got to the level where I couldn’t disguise that I didn’t fit in! Then there’s always an excuse for why your job has gone!
But you have your family? Yes, I do. 
Imagine how it feels to lose your temper at the drop of a hat over something totally unimportant. Your overwhelming guilt whilst you can still remember the incident. The incredulity of your family 10 minutes later when you are acting normally and asking them what’s wrong, because you have forgotten about it.
Have I achieved psychological resilience, which is a measure of an individual's tendency to cope with stress and adversity? This coping may result in the individual ‘bouncing back’ to a previous state of normal functioning, or simply not showing negative effects. My impairments can cause me to lose my temper quickly, but because of my cognitive memory impairment I forget and ‘bounce back’.
The answer therefore is ‘Yes’ and ‘No’!
Mental health is a relative concept. The parameters for being ‘normal’ are defined by society and anyone who doesn’t fit in is different. Autistic people, brain injury survivors and many others are different so how is their mental health measured?
My brain no longer works in the way it used to. I no longer fit in. I am condemned to a life of either being labelled strange behind my back or having to explain my disability and the effects it has to anybody I interact with.
I personally believe many people are being purged from both employment and society because they’re not ‘normal’.
As actress/comedienne Francesca Martinez says, “What the hell is normal?”
I am as good as you.
About the writer
Ian Jones is a Head Injured, Chartered Management Accountant who, following a Road Traffic Accident in 1991 (they were still called RTAs then!), made a ‘remarkable’ recovery from a very severe head injury, ending up 16 years later as Chief Financial Officer of a billion dollar leasing business until they twigged he was different! He was involved with the WOW Petition from before the start of it (when it wasn’t even called the WOW Petition!), because he felt he needed to start shouting about what is being done to disabled people in the name of fairness.
Being head injured, he doesn’t feel he belongs anywhere. He is not really either physically or mentally disabled in most peoples’ judgment. He would love to fit into the category Francesca Martinez, WOW Petition’s Celebrity spokesperson, puts herself into, ‘wobbly’. However, as he is much more and much less than that, he fits into a special category simply called ‘weird’. Rather than being angry he is disabled, he is angry that a lot of charities for disabled people are useless and are not fighting to the death against Welfare Reform (When did Social Security become Welfare?). This only leaves activists like WOW Petition to fight to the death (but that would be just what this Government wants!).
The WOW Petition is not exclusive (anybody can become disabled!), it is not a clique and anybody can join in and do what they can to help. We are not experts, but talented amateurs fighting for something we passionately believe in. In fact, we are all invested in this fight because too many disabled people appear to have no place in the society this Government is so keen to build. We HAVE to reengineer that model and make it fair!
If you want to help, or even understand why we are not benefit scroungers, or understand why to many of us, getting out of bed, getting dressed and going out of the house defines us as the ultimate ‘strivers’, then go to our website www.wowpetition.com read about us, sign the Government e-petition and tell your friends.
Ian’s blog, ‘Diary of an Unemployed Head Injured DDT’ is at http://edwinmandella.blogspot.co.uk and he can be found on Twitter @edwinmandella

The Unspoken Illness - We Need to Talk About Mental Health

Each year on the 10th October organisations and charities from around the globe take part in World Mental Health Day to raise awareness of mental health issues.

WoW Petition will be joining the discussion. You can follow us on twitter @WOWpetition and @WOWpetitionchat and on facebook

We urge you to sign
to demand that no one with a mental illness should suffer hardship and distress as a result of welfare reforms. 

WoW Petition calls for an independent, committee-based inquiry into welfare reform including "universal mental health treatments." What does this mean? The answer is simple. We believe that no one experiencing a mental health condition, illness or mental distress should be denied access to the support, care and treatment that they deserve and need.

Mental health problems are widespread in the UK:

  • Mental illness accounts for half of all illness in the under 65s. 
  • According to the World Health Organisation, one in four of us will have a mental illness at some point in our lifetime.
  • One in six people are currently affected by a mental illness.
  • 6,000,000 people have depression or crippling anxiety conditions.
  • 700,000 children have problem behaviours, anxiety or depression.
  • One third of all families include someone who is currently mentally ill.

The human impact of mental illness :

  • Suicide is the most common cause of death in men up to the age of 35.
  • Around 4,400 people end their own lives in England each year. That's one death every two hours. At least 10 times that number attempt suicide. Around 90% of suicide victims suffer from a psychiatric disorder at the time of their death.
  • Mental illness has the same effect on life-expectancy as smoking, and more than obesity.
  • Mental illness is generally more debilitating than most chronic physical conditions. On average, a person with depression is at least 50% more disabled than someone with angina, arthritis, asthma or diabetes. 
  • Mental pain is as real as physical pain, and it is often more severe. 
  • The UK has one of the highest rates of self harm in Europe at 400 per 100,000 population. 
  • People with serious mental illnesses die on average 20 years earlier than the rest of the population.

Neglecting mental health blights millions of lives, and yet, despite the huge cost to the economy and our society, three-quarters of people with common mental heath conditions are not receiving any treatment, therapy or support

Lack of funding and cuts:

For the first time in a decade there has been a cut in the total spending on mental health with a reduction of £150 million, including cuts in crisis services and out-reach programmes. This at a time of austerity when cuts to the welfare system further compound mental health problems. In many parts of the country, crisis care teams are under-resourced, understaffed and overstretched.

Mind chief executive Paul Farmer. "The current economic climate, unemployment and benefits cuts are likely to be having an impact, but we know too that people in a mental health crisis aren't always getting the help and support they need from the services there to support them."

"Good services can make a huge difference to whether someone recovers from a mental health crisis, yet we often hear from people who have been turned away because they 'aren't suicidal enough' or who have been made to wait for hours to be assessed and offered help."

"When people in crisis don't get the help they need, the consequences can be catastrophic."

  • In 2012 the number of suicides among mental health patients rose from 1,175 to 1,333.
  • Suicides are three times higher among unemployed people.

WoW Petition calls for an Independent, Committee-Based Inquiry into Welfare Reform, covering "excess claimant deaths".

We don't know how many people with mental illness have died after being judged fit-to-work following a work capability assessment or were appealing a fit-to-work decision because the Department of Work and Pensions say that they don't hold this information. As stories of suicides and deaths linked to the assessment appear in the media we can be sure that people have died as a consequence. The tick-box assessment is completely inadequate in recognising the many difficulties and limitations endured by mentally ill people. The stress and fear surrounding the assessment can be unbearable for many, making symptoms much worse. Medical evidence is disregarded and failure to collect supportive documentation at the start of the process means that people with learning disabilities, autism and psychotic illness especially, are discriminated against by the system. The High Court has ruled that the assessment for employment and support allowance breaches equalities laws but the government are appealing this judgement.

WoW Petition calls for an immediate end to the Work Capability Assessment as voted for by the BMA & RCN.

Mental health services are not regarded as a priority. The government have given local NHS service commissioners £400 million to complete the roll out of improving access to psychological therapies. By 2014 the programme should have been treating 900,000 people suffering with anxiety and depression but the budgets have not always been used for their intended purpose. 50% of these people receiving treatment would be expected to recover. Mental illness can make existing physical illness worse and it can cause physical symptoms. Physical healthcare caused by mental illness costs the NHS at least £10 billion. Not only does therapy help recovery and improves quality of life but economically it would be cost-effective to invest more on psychological therapies now saving on costs for other health services later.

  • Despite the widespread prevalence of mental illness within the UK, mental health services only receive 13% of NHS health expenditure.

Anxiety conditions such as social phobia, agoraphobia, PTSD, OCD, panic disorder and generalised anxiety account for half of mental illness. They can be debilitating and disabling and if not treated they frequently become lifelong. Recovery is made much more difficult the longer these conditions are left to persist untreated. There is no right to therapies within the NHS which NICE recommend as an effictive form of treatment for such conditions.

People are often afraid to admit they have a problem due to the stigma attached with having a mental illness and do not seek help when symptoms first appear. They need to get help as soon as possible to prevent their symptoms from escalating to crisis point but when they go to see their GP they may not get the referral to the local mental health services that they require.

GPs themselves are often not adequately trained in mental illness and the patient comes away with nothing more than a prescription. There can be very long waiting times for psychological and talking therapies and counselling and sometimes no local services to help at all.

Mind Charity revealed that one in five people had been waiting over a year to receive treatment and one in ten over two years. They say:

"Waiting times can have a devastating impact on a person's life. They can exacerbate mental illness and cause relationships to break down, jobs to be lost, people to be isolated and, in extreme cases, lead to suicide attempts. But far too many people are still waiting far too long to receive treatment."


  • Mental illness accounts for nearly half of all people on sickness benefits.
  • People with severe mental health problems have a lower employment rate than any other disabled group and yet they are more likely to want to work. 90% say they'd like to have employment compared to people with 52% of disabled people generally. 
  • However, only 21% of people with a disabling mental health condition are in paid employment compared with 47% of all people with other disabilities. This is even less for people with a severe mental illness. Just 9% are working full time and 19% part-time.
  •  70% of those with a common mental disorder who are unemployed and seeking work and have been unemployed for over a year or more are unlikely to return to work.

People with mental illness judged unfit to work in the short to medium term have not been excluded from the Work Programme. The scheme is mandatory and failure to participate can lead to mentally ill people being stripped of their benefits.

  • 93% of disabled people put onto the Work Programme are not finding long-term work. Just 6.8% of new ESA claimants with a general range of disabilities referred to the scheme in the latest three months have found employment. 

The public are not so sympathetic. 75% said people who were ‘mentally disabled’ (judged fit) should be made to work unpaid for their benefits.

Mind chief executive Paul Farmer. “Pressuring people into working, under the threat of losing their benefits, often serves to exacerbate their mental health problems, pushing them even further from the job market. Currently there’s still too little specialised support available and too much focus on sanctions and conditionality. People with mental health problems face significant barriers to finding and staying in work, such as stigma from employers, and often dealing with an invisible and fluctuating condition. The Government should be ensuring they provide tailored support to help people find appropriate employment.”

WoW Petition is opposed to workfare for people claiming social security benefits. WoW Petition calls for "an end to forced work under threat of sanctions for people on disability benefits".

Stigma and discrimination:

  • Fewer than 4 in 10 employers say that they would consider employing someone with a history of mental illness compared with 6 out of 10 who would consider giving work to someone with a physical disability.

Public attitudes towards mentally ill people have hardened.

  • More than half of the UK public said if they were employers they would not offer people with a history of depression a job, even if they were the best candidate. 

However, we probably each already know and work with someone suffering from a mental health problem, only because of stigma and discrimination, we don't know that they have an illness.

The media have shaped our attitudes towards mental illness and particularly our misinformed view that 'mental patients' are prone to violence. The stark reality is that sufferers are significantly more likely to harm themselves than other people and be the victims of crime and abuse.

Supermarkets Asda and Tesco recently had to remove offensive "mental patient" fancy dress costumes from their stores after a public outcry.

People with mental health problems are often too afraid to seek help or even to say they are unwell because of fear of being harshly judged and misunderstood. Sensational headlines can only make people more fearful of opening up, less likely to talk about their concerns and get the support they need. Stigma blights lives.

  • Nearly nine out of ten people (87%) with mental health problems say that have been affected by stigma and discrimination.

Stigma can affect all aspects of daily life. Work, education, going shopping and leisure activities, friendships, socialising, talking to other people, and getting support. People feel that they get a negative reaction and are blamed for their illness. That they will be seen as weak if they can't 'pull up their socks' or 'pull themselves together'. Asking a person with depression to 'cheer up' is like asking someone with a heart condition to make themselves better.

Stigma creates isolation and loneliness as people withdraw from social contact, which lowers their self-esteem and confidence. Two thirds of people with mental health problems live alone, four times more than the general population. Few people send get well messages as they do when someone is ill with a physical condition. The general message is that if you have a mental illness you suffer in secret, hidden away from the world and you don't talk about it. When someone asks how you are, few would venture to say that they're feeling down or anxious or depressed.

It's time that people with mental health issues were treated fairly. People with mental health problems can and do recover to lead rewarding and fulfilling lives. Not everybody can and will be cured, but equality and accessibility to treatment and support to enjoy life's potential should be the same experience for everybody.

Attitudes to mental health need to change.

Please support our campaign by signing WoW Petition



Urgent Appeal for Information: People in the ESA Work Related Activity Group

Urgent Appeal for Information

People in the ESA Work Related Activity Group

We are looking for people who are currently:

1) in the ESA  Work Related Activity Group  (WRAG)
2) People and taking part in in the Work Programme while in the ESA WRAG
3) People who have been or are being Sanctioned while in the ESA WRAG
4) People who have been threatened or warned of being Sanctioned while in the ESA WRAG

We are looking for people in those groups who would be willing to send us copies of letters they have received from the DWP and Work Programme providers about ESA Work Related Activity.

We want to use these letters and include them in a file of information we are currently gathering about the ESA Work Related Activity Group.

If you wish we can blank out your name and any identifying information from the letters before including them, but we would prefer if we could include your name. 

This information will be used for one specific purpose only and will not be published widely. We respect personal confidentiality at all times.

If you want to send us information or wish to discuss it further with us, please get in contact via email to: dpacresearch@gmail.com

Thank you
The DPAC Research Team