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?
By Ian Leech
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.