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…
For those who’ve not already seen it, this powerful film presents an alternative to the government’s devastating cuts agenda. It features community groups and anti-cuts campaigners along with Bill Nighy, Radiohead’s Ed O’Brien and Zac Goldsmith MP. Worth watching ahead of this weekend’s demo in London against the cuts.
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?
London's 'best place to live' according to town plannersWith bursts of retro orange shooting through its autumnal colour palette and wooden floors framed by bright white walls, the purpose-built accommodation pictured here wouldn’t look out of place in some interiors magazines.
Beneath the well-appointed rooms lies a bistro and a health spa where you can get your hair cut and styled or enjoy a pedicure.
The building, which opened in November, has achieved code level four for sustainable homes. It is heavily insulated, rainwater is harvested for reuse and heating is sourced from photovoltaic and solar thermal technology. A combined heat and power source also produces electricity, with any surplus sold to the national grid. The entire complex is wired for super-fast broadband.
Little wonder Ewart House has just won a ‘best place to live in London’ award in the Royal Town Planning Insitute’s annual London Planning Awards.
Ewart House's hair salon
A boutique hotel or maybe the latest urban eco-housing?
The only giveaway that Ewart House might in fact be sheltered housing is the fact the ground floor ‘spa’ also offers assisted bathing and the pedicure is really, well, more chiropody. Look more closely and you see the handrails lining the walls and the discrete pacing area for vulnerable residents. The decor and furnishings are also colour coordinated to enable residents with limited vision and dementia to recognise which part of the building they are in; no institutional signage here but subtle ways for residents to get their bearings. In a separate wing with its own entrance are seven flats let to younger people with disabilities and the building is intended to act as a community hub.
Ewart House appears to have substance as well as style; this isn’t just fashionable living for the frail. The extra care sheltered home for frail older people, including people with mild dementia, contains self-contained flats for 47 residents. Almost all flats have a private balcony and some are designed for couples whose fragile health prevents them from sharing a bedroom.The weekly rent and service charges are £135.
The ground floor bistro, Ewart House
The project is a partnership between housing association Harrow Churches (HCHA), which manages the building and provides day time support, and the charity Creative Support, which provides specialist support staff on call 24-hours a day.
With a recent report by the Alzheimers Society suggesting that 50,000 people in the UK are being forced into care homes prematurely, Ewart House has three flats designed for people with mild dementia and the staff are trained in dementia care.
The three-storey building, designed by architects JCMT and styled by interior decorators Stanbridge Interiors, was built using a £6.3m loan from the Homes and Communities Agency, a £3m loan secured by HCHA from Santander and money raised by leasing part of the land to development partner Octavia Housing. Harrow Council pays for employing two teams of staff providing personal care and support while housing support staff are employed by HCHA.
Despite the obvious benefits and official plaudits, HCHA warns the funding climate is a massive threat to creating similar schemes. Chief execuitve Chris Holley says: ‘We’re extremely worried that funding will not be available for more schemes like this despite the substantial social and financial advantages it offers over alternatives like residential and nursing care.
According to one elderly resident, William Fordham, Ewart House is a breath of fresh air: ‘The best thing is the freedom. It’s magic – I have my own flat but carers coming in and out. I didn’t know places like this existed.’ As William’s words suggest, why should losing your youth mean losing your desire for decent décor?
Freelance journalist & editor Kate MurrayMy mum has multiple dementia. Sadly, there’s nothing unusual about that. The Alzheimer’s Society reports that there are now 750,000 people with some form of dementia in the UK.
For my mum, it’s a gradual decline into the night. She has her bad days – when she’s convinced she’s about to leave school and needs to find a job – and her better days, where she can just about remember her grandchildren’s names. But she certainly no longer has days where anyone who talks to her, even for a minute or two, might think she’s capable of making a serious decision about the money she spends.
That’s why I was so shocked, when going through her mail recently, to find a letter from one of the UK’s best-known charities, Save the Children, thanking her for talking to one of its fundraisers about leaving a legacy. ‘As requested,’ it read, ‘I have also enclosed a codicil form.’
When I spoke to the charity and told them how disappointed I was that they were targeting a vulnerable elderly person, I discovered that my mother was on a list it had bought a couple of years ago. She’d been contacted, the charity admitted, ‘several times’ over the last few months by fundraisers working on their behalf about making a donation or setting up a direct debit. Save the Children, to its credit, reacted swiftly. It apologised and immediately took my mother off its list, conceding that its telemarketers ‘should have identified she was not capable of making these decisions’.
This was not the first time my mum has been on the receiving end of charity cold calls and has, according to the fundraisers involved, expressed interest in making a regular donation. I have power of attorney over her affairs, so I, on her behalf, continue to donate to those charities she had herself identified before her condition deteriorated and she’s never ended up spending money she can’t afford on new donations.
When I started to have a dig, I soon soon found my mum’s experience was not unique. Take a look at the Alzheimers Society chat forum, for example, and you’ll see pages of discussion about dementia sufferers being cold-called, with, in one case, a fundraiser for a reputable charity apparently going round door to door in a sheltered housing scheme and even filling in the direct debit form when the potential donor was unable to do so.
Charities use cold calling, whether it’s on the phone or at the door, because it’s effective. According to the Fundraising Standards Board, the independent self-regulatory body for UK fundraising, its members made more than 4.7 million fundraising phone calls in 2009, and more than 22 million door to door calls (including collections) – both significantly up on the previous year. But the number of complaints is up too. And with charities facing a squeeze on donations in these tough economic times, it’s not unreasonable to fear that the pressure on fundraisers to get results will increase.
The Charity Commission, in its guidelines on fundraising, says ‘charities should not use any methods of fundraising that may damage public trust and confidence in charities’ including ‘targeting and pressuring vulnerable donors who may not be able to afford or understand the terms of the donation or ongoing donations they are committed to’. And in its code of practice on legacies the Fundraising Standards Board says charities ‘ought to pay particular attention when communicating with vulnerable people’.
Charities may do the right thing when they’re challenged. But is the message getting through to the fundraising frontline? Professional fundraising companies which work on charities’ behalf say all the right things about ‘high quality’, ‘sensitive’ and ‘no pressure’ telephone fundraising. And the Direct Marketing Association’s code of practice specifically highlights the need to ‘take particular care with vulnerable customers’. But marketers are highly focused on results – donors signed up and cash raised – and as I’ve seen that means the reality can fall way short of the theory. It seems to me that the confusing array of organisations and codes – yet another self-regulatory body, the Public Fundraising Regulatory Association, oversees face-to-face fundraising – may be part of the problem. Shouldn’t the Charity Commission, which doesn’t directly regulate fundraising, have a more hands-on role?
Of course charities need to reach out to new donors and of course they need to use cost-effective means of doing so. But sensitivity, a strong ethical approach and good training are all essential. So too is a tough line on those marketing teams who don’t stick to the high standards charities subscribe to. Otherwise I’m not convinced a fundraiser, working for a telemarketing or door-to-door team, will really give the thought they should to the donor.
Charities are under pressure for cash. But they rely on goodwill and can’t afford to squander it with shoddy sales techniques.
It is Saturday morning and 13-year-old James Hope is desperate to get to his activity club. His dad, Jim, reaches for his coat, but James is frustrated at having to wait. He stomps off to the car and waits silently, brows furrowed.
This scene takes place most Saturdays but rather than tiring of what other parents might regard as a mild teenage strop, Jim and his wife, Alison, celebrate it. James has autism and they are grateful that their son not only has a regular weekend activity but that he is keen to get to it.
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.
To find out more, visit the website Mad4Mel.
For information about lymphoma visit the Lymphoma Association website.
