Any mention of “the games” and all eyes look to east London and this week, in particular, towards the newly-opened retail mecca and gateway to the games – Westfield.
But last week, the home of “the games” was the north west, as Liverpool hosted the second annual Homeless Games, a unique event that involved more than 400 people and has been dubbed locally as the Homeless Olympics.
Compared to next year’s sporting extravaganza, last week’s event might be short on history, size, razamatazz, budget and wholescale regenenerative impact, but it has heart and drive and the potential to support people towards a more stable life. It also boasts some native Liverpudlians and Olympic athletes as patrons (gymnast Beth Tweddle, boxer David Price and former high jumper Steve Smith).
Over two days last week, more than 400 people – those over 18-years-old who are homeless, or have been homeless in the last two years – participated in swimming, football, cycling, badminton. Alternative sporting events like chess, pool and tiddlywinks were also held at the competition at Wavertree Sports Park.
Eric Houghton, 46, from Anfield, began the Homeless Games after taking part in the 2002 Homeless World Cup. The father-of-two, now a support worker for homeless people, became homeless after family bereavements led him to spiral out of control and downward into alcohol abuse. When he got involved with the Homeless World Cup in 2002, the sporting and empowering event was the pivotal spark he needed to regain stability in his life.
Wanting to use the same approach on a more regional level, Houghton used a start-up grant from Cosmopolitan Housing Association to put together the first games last year. Competitors were given the opportunity to benefit from health services such as sexual health advice, diabetes screening and help with stopping smoking or tackling substance abuse.
Houghton says: “Getting involved in something positive like sport can give homeless people the sense of self-worth and community that they need. Although the Games only lasted for two days, we hope the effects will last a lot longer, and show people how much they can achieve.”
Local organisations including housing associations, police, health and the city council helped support the event and there’s a short film here, made last year:
Guest blogger Lol Butterfield, a mental health campaigner and qualified mental health nurse, explains his involvement with a national drive to tackle the stigma suffered by people with mental health issues. The campaign is driven by service users. Butterfield, who lives in Teeside, has written an autobiographical book which describes his experience of growing up with a mentally ill parent.
“He must have been insane to have done that!” Sadly, an all too familiar response following reading about a particularly vicious assault or murder, in the newspapers. The reality is usually different though and, statistically, 95% of serious crime is carried out by people who do not have a clinical diagnosis of mental illness, those who are not therefore “insane.” They are “bad not mad”. So why do we discriminate?
People experiencing mental illness are more likely to be the victim, rather than the perpetrator, of a serious crime. This criminalisation, mainly through the media, was one of the reasons I became involved in Time to Change and its Lived Experience Advisory Panel (LEAP).
LEAP is an advisory group of 12 people who shape the Time To Change programme, England’s largest mental health anti-stigma campaign. Time to Change began in 2007 funded through the Big Lottery and Comic Relief with £20 million of investment. Us “Leapsters” have extensive experience and knowledge of mental illness and a passion to put the record straight. We act as campaign ambassadors and spokespeople. With a diverse mix of expertise and good links to service user and carer networks, we work towards ensuring that service user and carers needs are at the heart of the campaign.
Over 30 years I’ve spent time working in mental health services as a qualified nurse. I have seen daily the stigma and discrimination faced by those who experience mental ill health and their families.
I’ve also been on the receiving end of this stigma myself. I experienced mental illness myself when in 2004 I had to take time off work with severe depression. I have worn the shoes of the nurse, and the patient. I can empathise with the one in four of the population who have also found themselves mentally unwell at some point in their lives.
My father also experienced mental illness and as a small child I recall the stigma surrounding this growing up in a small mining village in the north east. As a young boy I did not understand what the word stigma meant but I certainly knew how it felt at that time.
I have spoken to people who have been laughed at on the bus or been called names because people know they have mental health conditions. I know of those who have ever been told to sit in other areas of a pub, who have not applied for jobs because they fear being rejected when they disclose their mental health background. These people are vulnerable to abuse because their mannerisms. Ironically these mannerisms are often caused by their medication rather than the condition itself.
I became involved with LEAP because I saw an opportunity to positively and constructively use my experience, as both a nurse and someone with experience of mental ill-health, to make a difference.
I have presented at conferences telling my story and promoting the campaign message. I’ve taken part in TV and radio interviews, visited schools and colleges to raise awareness. Until recently, I was writing a bimonthly column for the local newspaper where I live in Teesside with the aim of tackling the negative stereotypical coverage we see all too often.
Three years ago, I decided to write Sticks and Stones, my autobiography, as another way of spreading the anti-stigma message. my childhood memories of growing up with a father who experienced mental illness and the stigma my family faced and I myself felt as a child. For me writing the book was also about encouraging others to follow my lead by using myself as a positive role model (ie someone who is trained as a mental health nurse and has experienced mental illness. I am very open about this in order to promote more acceptance from others)
Individually as well as collectively we can and will make a difference no matter how small. With imagination and creativity we can impact in those areas of society that discriminate and stigmatise.
It has not always been easy. The work I do can be stressful because often it is real people with real experiences at the core of what we do as a group, and I do as an individual. I have at times to be mindful of my own limitations and avoid pushing myself into the “dark place” of clinical depression again. That said my work gives me so much satisfaction and pleasure. To know my words and actions have made others think differently around mental health, and act differently in their treatment of those who are unwell, is reward in itself.
The work of LEAP has made a difference in that dedicated time and effort has ensured that the message is being delivered in many creative, diverse ways that otherwise may not have been. As Leapsters we cover all parts of England to touch as many people in as many regions as possible. Touching hearts and minds, promoting tolerance and understanding of mental ill-health. I believe we are teaching the next generation to act and behave differently, changing attitudes for the better.
It was when the care home manager started to talk about staff training that the alarm bells sounded for me. Not because I didn’t want the people who would be caring for my mother to be well trained – far from it. It was his reasons for ensuring all his staff had a certificate to their name that I found so worrying. “It’s a competitive business,” he told my brother and me. “Our people have to have those qualifications. That’s what other places have and we can’t afford to fall behind.”
I found his unashamed concern for his bottom line shocking. But I could also see why he was so keen to bring the business in. At some £550 a week for a place in an establishment like his – although he was prepared to haggle to get us to sign on the dotted line – there are serious amounts of cash at play.
Not surprisingly, we didn’t go for the care home in question, plumping instead for an even more expensive option where we felt happier with the atmosphere and the care on offer. But my experience of choosing a care home, which came just before Andrew Dilnot released his recommendations on paying for care, showed me that money talks – even when it should be the standard of care that we should really be concerned about.
When his report was published, Dilnot rightly pointed out that the issue of funding adult social care had been ignored for too long. He proposed that the costs an individual has to pay for his or her care should be capped at £35,000. Many have agreed, arguing that it’s unfair that people who’ve saved all their lives, or worked hard to pay for a home, should be forced to lose most of what they had hoped to pass on to their families.
But for me, it’s not inheritance rights that matter. It’s simply that as things stand, where so many people self-fund their care, we’ve created a market that has spiralled out of control. While the state has stood by, determining that only the worst-off will have their costs made for, care for the elderly has become essentially a private matter.
It’s a world in which staff costs are pushed down so hard that frankly it’s no surprise quality can be so poor. One in which the push for growth can become so all-consuming that, as with Southern Cross, it leads to failure. And one where the prices are so sky high that care home managers seem to believe that relatives will want to haggle over prices rather than talk about how they maintain their elderly residents’ dignity and quality of life.
Establishing a system such as Dilnot recommends, in which people knew how much they would have to pay for their care in later life, would not just allow families to plan for their old age. It would also allow us to concentrate on the things that really matter: good quality care, with respect for the individual.
Care for those who need it should not be about having to worry about the invoice at the end of the month.
Photographer David Constantine – he’s the creator of the arresting and uplifting image above, Bengali Welcome, above – has a theory as to why his subjects relax once they’re in front of his lens; his wheelchair breaks the ice.
Constantine’s work is being shown as part of the inaugural Bloomsbury Art Fair that opens today at the Goodenough College, Mecklenburgh Square, London. As well as works by popular artists Banksy and Damien Hirst, there are pieces for sale by new and emerging artists. The three-day charitiable event raises money for spinal injury-related charities.
Constantine, for example, began taking pictures as a teenager and sold his bike to buy his first camera. While on a working holiday in Australia in 1982 he broke his neck in a diving accident and became quadriplegic. Paralysed from the shoulders down, he gave up photography for a year. But while he wasn’t able to pick up his camera, he continued to “see” images. As he writes on his website: “During that year I realised that I was still ‘seeing’ pictures, choosing images in my head even to the point of deciding on film types and composition I would use for a particular shot. The only thing I lacked was the physical ability to use a camera. I realised that this was a ridiculous reason for giving up and all it need take was some adaptations to my camera and wheelchair to enable me to take pictures.”
Exactly a year to the day of his injury he began the process of taking pictures again. He travels with his work for Motivation, the international disability charity he co-founded, and his main subjects are people in their own environments. As he says, “the disadvantages I foresaw with my photography after becoming a wheelchair user have turned into advantages.” He has developed different skills and enhanced others: “I am so conspicuous that it has made me bolder, I am happy to go and ask someone for their picture. If I can’t communicate verbally I make it very obvious that I would like to take their picture, people make it quite clear whether they are happy for me to photograph them or not.”
Among the participating artists is Sophie Morgan, who was runner up to Britain’s Missing Top Models. Morgan had a car accident in 2003 that left her paralysed and in a wheelchair for life. Her beautiful piece, Love, is above.
Morgan’s website declares that she is (in this order) an “Artist, Portraitist, Writer, Arts Psychoth
As councils tighten eligibility criteria for housing at the same time as benefit cuts hit, charities warn of an increase in homelessness. With the trend growing for councils to overhaul their allocation policies, there are fresh concerns about people being forced into the unaffordable private rented sector or pushed out into cheaper suburbs. Read my Guardian piece here.
It was only a picture of a gurgling baby. But to one elderly woman with dementia, it meant the world. “She had dementia, was in a care home and was past the stage where she could really have a conversation,” says Helen Bate. “But she just fell in love with that photo. She would try and wipe the baby’s dribble off, or feed it chocolate. It’s just an image – but it had the power to really engage her and she’s been able to talk to it.”
Bate is founder and managing director of Pictures to Share, an innovative social enterprise creating picture books and other resources for people with dementia. She’s a passionate advocate of people with dementia, who she argues shouldn’t be shut off from the world of books and art just because of their condition. “People make too many assumptions about people with dementia,” she says. “There’s often a lack of imagination in their care. If someone liked looking at good painting, they are not going to lose that when they are in a care home. They may not be able to read any more but they can still enjoy looking at the pictures in our books.”
Bate was inspired to start the business after her own mother, a dementia sufferer, enjoyed looking at a scrapbook Bate’s daughter had put together. “There was nothing else out there,” she says. her first three books were published in 2006 and, thanks in part to charitable sponsorship, she has now produced a total of 11, all designed to combat the isolation and depression which can so often be associated with dementia. The organisation has diversified into producing artwork and is now working on dvds.
“If you go into some care homes, it’s almost as if they assume that because people are old and have dementia, all they want to look at on the walls is pictures of the royal family, wartime or old street scenes. It’s pigeonholing everyone into a very narrow category.” The Pictures to Share books cover everything from sport to shopping and from the world of work to travel.
There’s diversity too in the choice of images: colour and black and white photos both old and new are mixed with reproductions of paintings. The key criterion is that all of the images should be powerful and easy to understand to prompt memories, a chat or simply a smile. “Because of their dementia, certain things won’t work if they are too complex,” says Bate. “And we have to be careful about showing pictures people might get worried about. For example, with a picture of children paddling in the sea where you can’t see any adults around, people could get quite distressed because they think the children are in danger.”
I tried out three of the books with my mother, who has multiple dementia. I was unsure how she would react, but I was delighted to find that the pictures inside captured her imagination. She used to be a great traveller, so it was perhaps inevitable that the biggest hit was the travel book. Its shots of the Taj Mahal and train, plane and ship journeys, really got my mum chatting.
The feedback from other users suggests my mum’s response is not unusual. “It opens the channels of communication that are a bit stuck,” she says. “Relatives find them really useful to get a conversation going, which can be tricky for people with dementia.”
For relatives and carers perhaps the most powerful thing about the books is that they remind us all that behind every person with dementia is an individual with their own interests, likes and dislikes and their own life story. They are not all the same, so let’s free our imagination – and theirs – as we care for them.
Amid the vibrations of doom and whiff of ennui surrounding anything stamped with the politicised big society seal, a new campaign tagged in plain terms as a grassroots effort to improve a neighbourhood is a bit of an attention-grabber.
Shockingly, no one’s claiming it’s part of some shiny new renaissance in volunteering that will allow the state to retreat on the sly, but a tried and tested idea, backed by an organisation that’s been doing similar, citizen-led work for years.
Quick – Dave’s on the line – he wants his big society back!
Today’s launch of Shoreditch Citizens – part of well-established community organisers programme London Citizens – follows an audit of 200 organisations in the east London area, plus 500 meetings to identify local issues that matter and train community leaders.
The Shoreditch arm is the latest chapter for London Citizens, an alliance of 160 groups representing faith institutions universities and schools, trade unions and community groups; the founding member is The East London Communities Organisation (Telco), the UK’s largest independent community alliance launched in 1996.
Shoreditch Citizens has high hopes in aiming to join forces to impact on poverty, poor housing and gang crime – around 75% of the area’s children live below the poverty line and four in 10 adults are unemployed. The campaign, funded by the Mayor’s Fund for London and £270,000 over three years from the community investment arm of Barclays Capital, also wants an alternative to the education maintenance allowance (EMA) to encourage young people to stay in education. There is also a plan to make Shoreditch a “Living Wage” zone, where everyone who works in the area can be sure to earn a decent amount to live on. The Living Wage campaign was first launched by London Citizens in 2001, which says it has won over £40 million of Living Wages, lifting over 6,500 families out of working poverty.
By December 2012, the Shoreditch engagement programme aims to train 300 community leaders from 30 civil institutions and hopes to impact on up to 15,000 families. All this is nothing if not ambitious, but if you don’t have goals…
As someone who has experienced mental health problems since childhood I was elated to discover, on February 2, deputy prime minister Nick Clegg waxing lyrical about the importance of mental health on breakfast television. It was the new mental health strategy in England, No Health Without Mental Health, a cross-governmental approach to mental health and wellbeing, putting particular emphasis on talking therapies, early intervention and children/young people’s mental health.
£400 million is being invested in mental health services and I applaud the move to improve access to psychological therapies (often described as a ‘Cinderella service’) such as Cognitive Behavioural Therapy (CBT), a type of therapy which works to gradually change a person’s negative thought patterns and behavioural responses over a set period of time.
These types of therapies have been proven to work extremely well for people with mild mental health problems, such as short-term reactive (caused by an external trauma, such as a bereavement or job loss) depression and anxiety. Allowing people access to this type of support at the first onset of symptoms can prevent mental health problems spiralling into more severe forms of mental illness and, if it works, will save the government money as mental health problems are estimated to cost £105bn a year, according to the Centre for Mental Health.
I am pleased children/young people’s mental health is at the forefront of the strategy. Mental health service provision for young people is woefully inadequate, despite research showing half of all people who develop a lifetime mental health problems start to show symptoms at the age of 14. I can attest to this and perhaps with early intervention my mental health would not have deteriorated. Not mentioned, and something which is close to my heart, is how schools can assist with early intervention by training staff in mental health and employing in-school counsellors. My mental health problems were exacerbated by the deficit in knowledge about mental health in my school and as such I feel schools need to be included in discussion on early intervention and preventative measures.
As my elation waned and cynicism set in I pondered some questions: what about those with severe or enduring mental health problems? A short course of CBT is rarely enough when your problems are embedded or not easily identifiable, and I can’t stress enough how difficult it is to get sustained support. Regrettably for the government mental health problems are complex and unwieldy; they can accost you unannounced, be rooted in indescribable traumas and take years to recover from or even manage on a day to day basis. They are highly subjective and as such what is required is a subjective approach, there is no therapeutic panacea.
Talking to other young people, who like me have had mental health problems since a young age, there is a worry psychological therapies will be skewed in favour of CBT over other forms of talking therapies such as psychotherapy, art therapy and group therapy, to name a few. There are myriad treatment options out there but it can be extremely hard to gain access to many of them; perhaps they are not available widely in your area, are expensive or you’re simply told you’re not ‘unwell enough’ yet. The latter can be especially disheartening to hear when you have been physically unable to function for months on end and are desperate for even a semblance of support. There is not one cause for someone developing a mental health problem and while CBT works for many people it is important to note it does not work for everybody and there needs to be access to an array of psychological therapies if these proposals are going to work.
Another question I had after reading about the strategy was about how it can possibly succeed with council cuts affecting mental health services the way they are. In my last blog post I expressed concern about how cuts are affecting voluntary sector mental health services and I come back to this point now. With day centres closing around the country, jobs being lost and the lack of psychiatric beds available mental health provision is not in a good place and I’m left wondering how the government think the NHS can compensate for all these crucial losses.
As a resident of Leeds I was dismayed to hear of the decision to close the Leeds Crisis Centre, Leeds’ only instant access counselling service for people needing immediate support. The rationale behind this is that the service itself isn’t unique and is duplicated within the NHS. With GPs and mental health professionals regularly referring people deemed too ‘high risk’ for NHS services they have come out in force to support the crisis centre and postpone the decision until a rigorous consultation has taken place. I have to wonder how serious the government is about helping people suffering mental distress. Will the rhetoric become reality? Or will, as has become the norm, those of us with mental health problems be left floundering about desperately searching for any kind of support?
A 24-hour radio station for recovering addicts is among the new schemes in a Royal Society of Arts-led (RSA) project to put service users at the heart of their treatment and support, read my Society Guardian piece here.
Following a summer of ‘common ailments’, in the August of 2007 my eldest daughter Melissa was diagnosed with non-Hodgkin’s lymphoma.
It was at that moment our relationship with the NHS began. Melissa was a student at Aston in Birmingham, she was living university life to the full and if there is such a place as heaven, it seemed Melissa was already there.
However, the day after her 20th birthday her world, and ours, changed in an instant, with the news that she had lymphatic cancer.
Like the staff that cared for Mel, we were thrust into the role of carers, the difference was, they were professionals, and they’d had training. There isn’t anything in life that can prepare you for the role we suddenly found ourselves plunged into, no parenting manual or course to attend, you rely on pure instinct, love, and the hope that the decisions you are making are the right ones.
We watched and waited, twenty four hours a day, seven days a week for nine months. We watched for any sudden rise in Mel’s temperature, a signal that she may have contracted an infection and the knowledge that a trip to A&E would be imminent. We waited for consultants to arrive with the latest news and would try to remain calm if it wasn’t what we wanted to hear. We waited for calls for results following x rays and scans. We watched the hard work put in by nurses and other staff and grew to appreciate the role of everyone, from the consultants to healthcare assistants and even the lady who came round with the tea trolley.
Mel’s care during her time in hospital was very good, but there was room for improvement, minor tweaks rather than wholesale changes.
Having patient access to the internet is something all hospitals should have. It kept Mel in touch with her friends and family and also allowed her to get support and relevant up to date information from the Lymphoma Association’s website.
Late teens to mid twenties is a difficult age range to nurse, Melissa wasn’t a child, but there was a loss of independence and an age regression that certainly brought about a strong reliance on us as parents. She needed us and fortunately, at both Burton and Nottingham hospitals we were allowed to stay with her for as long as she wanted. Another hospital we attended wasn’t so accommodating.
Our issues with Mel’s care mainly focused around communication and this lack of consistency between hospitals.
Mel was nervous of needles and I used to sit with her and let my hand be squeezed when blood was taken or canulas attached. However after being transferred to another local hospital for her chemotherapy, we found this practice wasn’t allowed and she had to deal with this trauma alone. It was at this same hospital where they refused to use her Hickman line (intravenous catheter) because the nurse wasn’t trained, this was after she’d been told needles would be a thing of the past after having the line inserted.
No news meant bad news. If a scan or test had worked, we seemed to be told immediately, whereas we always had to wait for bad news. This meant unnecessary worry. A simple phone call to explain that something hadn’t gone to plan but they were working on other options, would have alleviated the stress of not knowing.
On the whole though, Mel’s treatment and level of care in hospital was very good and this was helped by the wonderful rapport she built with her consultants at Nottingham and Burton. They knew Mel was a football fan and they used that as a common interest to build a patient/doctor confidence. It made Melissa feel special and that she was being treated as a person, not just a patient with a disease.
Our experience has led to me going into hospitals to talk to staff about our nine month insight into hospital life. The feedback from health professionals has been excellent. I also give the same service to bereavement groups. Nothing I can do will ever bring Melissa back, but it’s nice to know that even though she’s no longer with us, her experience is being used to make a difference to people’s lives.