Roy Warman’s wife, Phyllis, died in January 2015. Buoyed by well-wishers in the first few weeks of bereavement, the visits and telephone calls gradually dwindled, and he felt increasingly alone. Many of his friends have passed away, he does not have any family nearby and the couple never had children. He explains: “The longer it goes without speaking to someone, the harder it gets.” He describes loneliness as “one of the hardest things that you will encounter in life”, likening feeling low to “living in a void”.
Today he is part of the charity Age UK’s telephone befriending service that matches older people with like-minded volunteers for friendship or phone calls. Roy has weekly phone calls with a volunteer he describes as “like the daughter I never had” and he also has regular visits from another volunteer as part of Age UK’s face-to-face befriending scheme.
The kind of weekly phone call or visit that Roy gets are among the solutions to help ease the loneliness epidemic affecting 1.2 million older people in England; I’ve written about this for the Guardian today.
Age UK says that 1.2 million older people are chronically lonely and that this has an adverse impact on mental health, and the challenge will increase as our population ages. In the next 20 years, England’s over-85 population is set to rise from nearly 1.3 million people to just under 2.8 million.
This was the context to a recent interview with Gareth Parry, the chief executive of employment organisation Remploy, which has £50m of contracts from central and local government to help disabled people get jobs or support them back into work.
Parry, who worked his way up Remploy after starting as a trainee almost 30 years ago, has depression, something that he says gives him a more personal insight into his job running employment support organisation (“It reinforced the importance of organisations like Remploy; work gave me routine, structure, focus, when everything else in my life was in chaos”).
He is a forthright speaker about how his personal experience influences his role at the helm of an organisation aiming to support people with mental health issues; he wants more senior executives to be open about mental ill-health, for example.
The organisation, however, has its critics. While Remploy was launched by the postwar government in 1945 to give disabled second world war veterans sheltered employment, the last factories closed in 2013 in line with the idea that mainstream employment was preferable to segregated jobs. Yet many felt the closures abandoned disadvantaged people.
More recently, in April 2015, Remploy was outsourced to a joint venture between US-born international outsourcing giant Maximus – which has come under fire as the provider of the Department for Work and Pensions’ controversial “fit for work” tests – and Remploy’s employees, who have a 30% stake in the business. Critics say that being owned by Maximus undermines Remploy’s status as a champion of disabled people.
Parry rejects such suggestions: “I can understand why people would see it that way, but we have a strong social conscience, the employee ownership keeps us focused on that, the profits don’t go overseas to America, they go back into the [Remploy] business.”
Longer term, Parry believes Remploy could take on international work, like advising other countries on closing sheltered factories. He adds: “Our mission around equality in the workplace has always been and is within the confines of the UK, but if we want to make a real difference in society in the UK, the opportunity we have now is to say ‘why stop there?’” Future issues in employment support, he adds, include sustaining an ageing workforce, with help for issues like dementia in the workplace and other age-related conditions.
In terms of other changes, Parry’s words on the rise of online support (as opposed to face to face advice) reflect a general trend towards more online and digital support: “I’m not suggesting online will replace face-to-face services, but the idea of giving the power of choice to the individual as to how they access services is meaningful”.
Remploy is almost unrecognisable in terms of its remit, ownership structure and operations since its inception more than 70 years ago; as the government and local government contracts on which it once relied are dwindling, it will be interesting to see where the next few years take Remploy – and, most importantly, those it helps.
The graduate, who is an academic high-flyer, starts a trainee solicitor role later this year. He believes a law career will enable him to create practical change, but says combining law with campaigning is crucial. As he explains: “There is only so far legislation can go…you need to be winning hearts and minds to get change.” For his views on work and disability, see the full interview here.
He credits his family for their supportive role in his campaigning and he speaks powerfully about how his younger brother defended him against school bullies (“It was words like ‘retard’”). Jonathan stressed that it was in fact his brother who found it harder to deal with the verbal abuse: “I developed a thick skin, people used to tease me, but I always felt there would always be people like that and it was best not to focus on them. I came out in a better state than my brother, because I could shut it out and carry on – but for people who love you, it [trying to rise above verbal abuse directed at a relative] can be harder.”
An autism diagnosis at nine was, he says, useful in understanding his needs, but some of his parents’ friends reacted with sympathy. “The instant reaction was ‘I’m so sorry’. My mum would say ‘why?’ She said ‘my son hasn’t become autistic because of this diagnosis – it lets me understand it [autism] better; he’s always been my boy and is the same person he always was’.”
What struck me about Jonathan’s work – aside from the huge amount of awareness-raising at such a young age – is that he works on a range of diversity issues; along with autism, he raises awareness of mental health issues and LGBT equality. For example, he’s launching a best practice autism toolkit with the Commonwealth disability working group in April and hosting a related Commonwealth Day event in March.
He is also involved in promoting LGBT rights as co-founder of professional network the London Bisexual Network, challenging the idea that an autistic person “is not a sexual being because you are somehow ‘other’”. He adds of his campaigning on autism as well as LGBT issues: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.”
He also works to educate young people about domestic violence. He explains: “When I was child and I saw something that was wrong, I wanted to correct it and when I see something that is blatant injustice I just want to do what I can to help…[with domestic violence campaigning] I know what is is like to have a stable family, family that loves you, and I want others to be able to experience that.”
In fact, his broad range of campaigning interests reflects the change in attitudes which he is trying to achieve through his work: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.
About 500 mentally ill people travel more than 30 miles for an inpatient bed every month, such is the scarcity of local provision.
My piece in the Guardian today reflects longstanding concerns most recently outlined in a report from the independent commission into adult acute mental healthcare, supported by the Royal College of Psychiatrists and led by ex-NHS chief executive Nigel Crisp. The report demands include a deadline of October 2017 to stop the practice of sending severely ill patients miles from home.
Some areas are blazing a trail, however, when it comes to boosting local acute beds. Existing examples of good practice include Mersey Care NHS trust’s £25m purpose-built, short-stay mental health inpatient unit, Clock View. Then there’s Tile House supported living project in King’s Cross, London, which reduces hospital admissions for people with serious mental health conditions, aiming to move them into independent housing and work.
I visited the Ley at the invitation of Chris, who volunteers at the centre; his life now is about as far removed from his past as is possible. The Krays ruled London’s gangland in the 1960s and were imprisoned for murder. Chris was present on the night Jack ‘the hat’ Mcvittie was stabbed to death. His presence and silence that night in naming Reggie Kray as the murderer resulted in Chris being jailed for 15 years.
Whilst in prison Chris, now 78-years-old, reflected on his life and the mistakes he had made. He wondered how he had found himself to be in such a position. Like many other prisoners Chris ‘found’ God. But unlike many others who use this as a cynical ploy to seek freedom early, Chris knew his life had to change and was determined to make that happen. He wanted to make a difference to others. On his release in the early 1980s he began working at the Ley. His voluntary work there includes accompanying people to court and generally giving them the encouragement to try and turn their lives around.
I had read about Chris’s work in his autobiography, The Kray Madness, and contacted him to discuss our mutual interest in helping people to turn their lives around. After a few phone calls, he invited me to Oxfordshire to a look around the Ley. The centre initially struck me as quite regimented, but it has to be that way to encourage the residents to make the efforts to come off drugs and show self discipline and determination. There is a strong emphasis on group discussions, peer pressure and support, openness and self responsibility.
We have different backgrounds and seemingly different areas of interest – me with mental health campaigning and Chris supporting the rehabilitation of people with addiction issues. Yet we both have a desire to use our life experiences to make a positive difference for others.
Chris has an influential role among young men because of his Kray connections, with much recent interest in his life thanks to the Tom Hardy film Legend – Chris advised on the movie. Chris is not volunteering as much at the Ley due to his age, but when he does he accompanies people to court, and generally encourages them to try to transform their lifestyles and behaviours. They see him as a positive role model and he can relate to them.
Supportive networks are vital to recovery and a focus on relationships is the theme of Mental Health Awareness Week next week. Social contact is the best way of breaking down barriers, misunderstanding, and ignorance of mental illness. It is important for us to have good relationships for our own mental health in the sense of talking and listening to each other.
My own work, for example, has been aimed at encouraging men to seek help early for mental health issues and self-harm. My most recent media advisory role was advising the storyline involving the ‘macho’ character Zak Dingle in TVs Emmerdale during his depression storyline.
Tragically we have very high rates of self-harm among young men in my native north east. Much of this is a consequence of the damaging ‘Big boys don’t cry’ attitude among men, and the damaging misperception that men expressing their feelings is a sign of weakness. This is something Chris would relate to in his own work.
Challenging stigma and addressing feelings of shame is something Chris and I share as a common goal.
Through social media, Facebook, and social contact, we are both starting to chip away at the damaging defensive layering common to all tough guys. We are trying to convince men who think they are somehow immune from mental illness that nothing could be further from the truth.
We have discussed the idea of a joint project, perhaps a book, to try to reach out to men in particular who self harm and feel stigmatised because of having mental illness. Together we are determined to make a difference; we have more in common then we think.
A poetry exhibition opening today aims to challenge attitudes about learning disability and mental ill-health.
The learning disability poems are partly a tribute to the late Kim Wolf, who had Down’s syndrome; the collection includes writing inspired by her and which reflects her perspective on life.
A collaboration between Kim’s brother, former mental health social worker and poet Rogan Wolf, and disability charity United Response, the exhibition, entitled Dignity and Light, aims to “address and challenge the stigma and stereotypes and fears still associated with learning disability and – even more – with mental ill health”. As Rogan explains: “If I can see what life is actually like for you, then I am more likely to recognise and not just dismiss you”.
The poetry has been “written with, by and about people with learning disabilities and mental health needs” (United Response explains more of the background to the project here).
The poems, part of the Poems for project that supplies poem-posters for public display free of charge, are on display at Bristol’s Paintworks from today until Thursday. The collection will then be available online, as an illustrated book and, it is hoped, used in schools to raise awareness.
Rogan says of the project’s aims: “There is still this common urge to treat people who are in some way ‘different’ as dangerous aliens, or objects of scorn or mockery, people we need to keep separate. Thus, learning disability and mental ill-health are both experienced by a minority of people in our society and, though the experiences are very different, the stigmatisation both can meet is the same. It cripples lives. It shuts them off.”
While acknowledging that poems are no substitute for policy or resources, Rogan says “they can connect and can enlighten”: “Politicians keep emphasising the urgency of the need for better mental health services and better understanding – I suspect to relatively little effect. There is a crisis here and it just continues. And reports keep emphasising the need for better mental health education and resources in schools, so that children already struggling can seek help at an early stage…[the poems] can help children who are struggling recognise what might be happening and what might help.”
The collections draw on poetry written or collected over the last four decades including through Rogan’s work, personal connections, creative writing workshops and the Postcards from the Edge project run by United Response.
The poem “Other People” by Shiraz, who is supported by United Response, was part of the postcards campaign: “People are like apples or eggs. They look all right on the surface, but you don’t know what’s going on inside.”
In another poem, “A father to his son (with Down’s syndrome)”, the author, John Mclorinan, describes his child as “wonderfully irreverent, irrelevant, inappropriate, spontaneous, topsy turvey, upside down. vulnerable, perceptive, aware, eager to communicate, willing to please”.
The collections that launch today, writes United Response’s director of policy Diane Lightfoot in the illustrated book that contains them, “shine a light on those who too often remain unseen in the shadows and on the fringes of our society”.
The poem below is by Rogan, written from the perspective of his late sister Kim. The poet explains: “We often went out together. Some of the words and phrases above are Kim’s own. Somehow she had to make sense of the way people looked at her, in the street, or when she entered a public room.”
Shall we go for a walk ? When I go for a walk people look round at me.
Will you come too ?
Will you hold my hand ?
They look round at me. There’s something wrong.
Will you come too ?
Perhaps I’ll put my ear-phones in and play my music extra loud.
I am going for a walk. What’s wrong ?
Will you come too ?
Will you hold my hand ?
* See Poemsfor.org to read more or read about the exhibition opening times here.
The act, 20 years old this autumn, was regarded as weaker than hoped for by campaigners – not least because its ideals were hard to enforce – and it was replaced by the Equality Act 2010 combining all anti-discrimination legislation under one law.
Back in 1995, beginning my working life, I remember talk and action relating to the most visible aspects of the new law – the installation of ramps in the workplace, for example, and accessibility on public transport.
Recent research, such as a report by Demos and Scope, Destination Unknown, outlines the disproportionate effect on disabled people of cuts to benefits including Disability Living Allowance (DLA), Employment and Support Allowance and housing benefit. Other reforms include the closure of the Independent Living Fund (ILF) and changes to unemployment benefit.
Speaking to disability campaigners and activities for a Guardian piece recently was a good litmus test for the act’s legacy. For example, Debbie Domb, of Hammersmith and Fulham Disabled People’s Organisations Network, “welfare cuts are pushing us further out of sight to the margins of society”. Activist Wendy Perez of LDA (Learning Disability Alliance) England says disabled people are now “treated like scroungers and as people who just take”: “In the last few years it feels like things have gone backwards. There used to be a lot of hope; but now it feels like hope is gone.”
As mental health campaigner Lol Butterfield, who has blogged on this site, says: “The Disability Discrimination Act has provided protection and support for people experiencing mental health conditions but we can never become complacent. We must always be reviewing its use and strength in these times of discrimination against the mentally ill. I have witnessed many positive changes within mental health services and society over all these years. But sadly we still have a long way to go.”
Baroness Jane Campbell, crossbench peer, disability rights campaigner, chair of the All-Party Parliamentary Disability Group, adds: “I was extremely privileged to be part of shaping and helping implement the Disability Discrimination Act (DDA). This brought rights into disabled peoples’ lives, gradually replacing the culture of welfare and charity. Sadly, the momentum was never maintained as we had dreamed.
For Clenton Farquharson, disability and equality campaigner and director of community interest company Community Navigator Services, the DDA meant suddenly he was not longer invisible: “I had a right to be noticed…But 20 years on, sadly, there is still no monitoring or enforcing of the Act, leaving us to fight as individuals for our legal rights — and that is a daunting, expensive, and dispiriting process.”
The DDA still symbolises a turning point for disability rights but while it was launched in a hopeful fanfare, two decades on for many people, the legislation rings hollow.
A few images here from an innovative digital arts festival due to take place this weekend (10-12 July). The interactive event, which I wrote about today for the Guardian’s online social care pages, will feature giant portraits of learning disabled people projected onto buildings, a game played with an accessible mapping app and an inclusive, high-tech design workshop to re-imagine a town centre.
People with learning disabilities will help stage the innovative art installations and music and dance performances that they have created alongside digital and community arts practitioners. The inaugural SprungDigi Festival in Horsham, West Sussex, runs from Friday until Sunday.
The name of the free event reflects the concept that digital technology and online activity can be a springboard to social inclusion. The aim is to ensure that people with learning disabilities are more visible and feel more connected to their local areas. Read the rest of the piece here and check this festival page for more information about the weekend.
Working-age ill-health costs the UK economy an annual £100bn, and in a piece for the Guardian online, I give a snapshot of what some employers are doing to improve the health of their staff.
It might be easy to dismiss lunchtime yoga sessions or in-house physio clinics as optional extras (or a “perk”) but the stats on workplace illness suggests a focus on wellbeing makes economic sense. More days are lost through staff sickness in the NHS than elsewhere in the public sector (according to the government’s 2009 Boorman Report) and sick leave costs the health service £1.7bn a year.
Employers are starting to recognise their public health role; almost 400 organisations have, according to latest figures, pledged support for the Department of Health’s public health “responsibility deal”.
You can read the full piece, part of a supplement on physiotherapy, here.
If someone’s arm was broken on TV we would see it bandaged up. If someone had diabetes we would see them receiving insulin. If we see someone had a heart condition we would see them wired up to an ECG machine.
So why when we see people displaying symptoms of mental illness do we usually see this depicted as violent or histrionic, with a focus on the challenge and not the solution?
I am watching closely as this storyline unfolds, not least because we at Time To Change are advising on this to try to ensure as much sensitivity and realism as possible.
Although only in the early stages of the illness, Steve’s behaviour is causing both consternation and confusion for those close to him, and not so close. People are trying to make sense of it all at the moment. Classic symptoms pointing to clinical depression can often be overlooked in the early stages. The programme is cleverly highlighting this and showing the insidious nature of the illness.
I believe it is all around finding the right balance between providing drama for the viewers but also ensuring mental health is not further stigmatised through lazy, damaging scriptwriting. It is a win-win situation for everyone to have mental health storylines depicted with responsibility, authenticity and maturity:
• viewers will gain more awareness of symptoms and treatment
• the programme will receive positive publicity for the research and efforts made
• a powerful anti stigma message will be ultimately delivered.
It is critical to present as authentic a picture of mental health symptoms and treatment as possible to de stigmatise mental illness. The media plays a role that must never be underestimated. It will educate and challenge opinions, it will inform. The viewers opinions and impressions are often influenced by what they see and hear on their TV screens. In advising on the Zak Dingle depression storyline in Emmerdale, I was at pains to reinforce how the illness not only impacts on the sufferer but also the family and significant others.
This is the reality.
The person who is ill does not usually suffer alone, their families/partners have usually cared for them before they seek help and continue to provide care afterwards. I will be watching the Coronation Street storyline to see how those near to Steve are effected by his own deterioration. It must also be realistic in showing the time span of the illness. It would be ludicrous for the viewers to see a decline into severe clinical depression undermined by a miraculous recovery within weeks.
Unfortunately drama that portrays a swift recovery only serves to misinform and mislead. Realism and credibility is then left on the cutting room floor. This is why good research is the key alongside learning the lessons of the past. Lessons need to be learnt and I strongly believe this will be the case in the Coronation Street plot.
Recent research by Time To Change has shown that attitudes are changing as a consequence of responsible media portrayals of mental health. We must not become complacent though and continue to build on the good work so far.
Coronation Street is a very popular soap. Many will be watching for the drama and entertainment element, while others will be scrutinising closely to look for a positive, realistic depiction.
I want these reasons to combine.
I hope nobody is left disappointed or disillusioned. I am excited by this storyline and so should others be. Excited because the storyline will, if successful, leave a seed of hope and a motivation for change in everyone’s minds. That seed will eventually grow into a realisation that when covering the topic of mental health, it is crucial this is responsibly portrayed in the media.