Category Archives: Social care

Care: money talks but standards should matter more

Freelance journalist and editor Kate Murray
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.

Care issues take centre stage

I featured a bold production about special needs at north London’s New End Theatre on this blog recently, and now the same venue is presenting another performance focusing on challenging issues (all pics by Francis Loney).

Where’s Your Mama Gone? is a play about fostering, the vulnerability of children in care and the impact of the care system on the lives of the young. The show ran in Leeds before moving to London. The siblings in the play are in care in West Yorkshire after losing their mother to a serial killer – playwright Brian Daniels was a trainee teacher in the city in 1970s Yorkshire when Peter Sutcliffe was at large and he has drawn on the experience in his writing. Daniels was inspired by Richard McCann’s novel, Just a Boy; McCann’s mother Wilma was Yorkshire Ripper Peter Sutcliffe’s first recorded murder victim in 1975.

The theatre in Hampstead, London, has made over a hundred free tickets available to disadvantaged children in the area for the drama which also highlights issues around such as alcoholism, drug use and questions of identity and heritage.

Daniels wanted to explore issues of care in Camden, home to the New End, Hampstead, whre only 59% of children in care passed a GCSE subject in 2009, compared with 78% nationally. Local foster children also had the highest rate of substance abuse in inner London, with almost one in five reported as having a problem with alcohol or drugs.

The playwright says: “The play was written to offer hope to young people living in care and to draw attention to the vast difficulties they face. Many of the youngsters that we have invited down will not have had the chance to experience live theatre and I urge other venues to set aside some tickets as well.”

The theatre is also launching a drive to attract wider audiences, including a pioneering “pay what you can” optional pricing system will operate for the entire run of the play. The suggested ticket price is £15, but theatregoers will be free to choose how much they pay at the box office in an effort to attract audiences that would otherwise not attend.

Where’s Your Mama Gone? runs until Sunday 28th August 2011. Tickets are available from the theatre.

What’s the role of the press in explaining social care?

If a week’s a long time in politics, it’s enough to induce amnesia in the fourth estate. The changing headlines over the last week – they began with the Dilnot Commission, moved onto phone hacking and returned to social care with the break up of Southern Cross care homes – prove that today’s news really is tomorrow’s fish and chip paper. Find the rest of my post over on the Voluntary Organisations Disability Group (VODG) blog.

Life stories: freeing the minds of dementia sufferers

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.

“I feel privileged to be different; I wouldn’t want to be the same as everyone else.”


Above, a film about the making of a play about Down’s Syndrome at a Camphill Village Trust community, The Grange in Gloucestershire.

Today’s the start of Learning Disability Week. What’s it like living with a learning disability? A few years ago, my sister, who has Fragile X syndrome, spotted the teenager next door embark on her first driving lesson. “I’ll never do that,” she quietly remarked. Quick as a flash, my mother replied: “You might not, but there’s plenty of other things you do brilliantly.”

Another time she asked why she had Fragile X syndrome. A plain, simple question and one that the rest of us asked for some time after her diagnosis (the answer: the genetic lottery). That was a tricky moment – it wasn’t that she required a literal explanation of the genetic make up that set her apart, but she was struggling to make sense of why there were certain things she found difficult to do and certain situations she felt uneasy in.

Unable to avoid some cliches, we explained that everyone’s different – wouldn’t the world be a boring place if we were all the same? – and talked about her amazing achievements which regularly leave us awe-struck, biodynamic farming among them.

If you’ve no experience of learning disability, you might assume that people like my sister potter along aimiably, existing in a smiley, hand-flapping, blissful state of ignorance, unable to articulate or appreciate the extent of their special needs.

The illuminating and moving film, above, about the making of a play about Down’s Syndrome at a Camphill Village Trust community, The Grange in Gloucestershire, lets the actors speak for themselves:

“I can’t be like Robin or Claire; I’m different.”

“It feels weird being with Down’s Syndrome.”

“To be honest, I feel quite privileged to be different; I wouldn’t want to be the same as everyone else really.”

The playwright, whose brother has a learning disability, recalls the days when those with learning disabilities were ushered away from mainstream society: “I was seven and he was nine when we were separated…my brother was tucked away in a sheltered workshop.. he would be a footnote..something to be forgotten.”

While grim institutional care is no longer the only option for people with learning disabilities, the horrific goings-on at the Winterbourne View care home and new Mencap research on disability hate crime are just two reminders of the massive problems that remain.

For me and my family, the awareness week that starts today means not only appreciating the scale of the challenge when it comes to creating a fairer society for the learning disabled – and demanding action – but celebrating the achievements of those we feel proud to call “different”.

“Sometimes I get cross with my parents because we don’t have a normal life.”


Above, young carers talk about their role in a Carers Week film.

Next time you feel fed up with doing the household chores, think about Ryan. At 13, he cooks, cleans, does the laundry and helps both his disabled parents get around the house. His father has Crohn’s disease and his mother is disabled.

Aside from the physical requirements of his role as a young carer, Ryan shoulders a huge amount of emotional stress; life is unpredictable because his parents’ health varies from day to day. Getting ready for school in the morning, for example, is hard because he worries about leaving his parents alone and fears his dad will be in hospital when he gets home. The teenager gets frequent headaches, stomach aches and suffers from irritable bowel syndrome, all of which his GP says is stress-related. It is easy to see how being a young carer can adversely affect education, health and wellbeing and lead to isolation and anxiety.

Ryan, who is lucky enough to be supported by a young carers project run by the charity Action for Children, is one of an estimated 700,000 children and young people who have caring responsibilities. Young carers represent over 10% of the UK’s 6m carers, the group of people highlighted in Carers Week this week.

Action for Children is using Carers Week to demand that the government and councils do not ignore the plight of young carers. The charity has released new figures today which show that, in a survey of 23 Action for Children young carers projects, services supporting 1,192 young carers have had their budgets cut by up to 30%. A further 192 young carers are supported by services that have suffered budget cuts of 40% or more.

As Ryan says, he would be lost without support from his young carers project. “I really rely on that time with my support worker to express my worries. It’s amazing to share my experiences with other young carers who understand what it is like to be me. I love my parents but sometimes I get cross with them because we don’t have a normal life and I can’t do the same things as my friends. I used to feel guilty and bad about those feelings but after talking to other young carers I know that we all have feelings like that sometimes and its okay. The young carers project arranges all sorts of activities for us to help us relax and enjoy our time off from looking after our parents. It’s like having a little holiday away from all the worry.”

Budget cuts to support services for young carers save money now but run the risk of undermining young carers’ futures. As Hugh Thornbery, director of children’s services at Action for Children, says, there is already a huge danger that those who need care start relying on children and young people to support them even more as statutory service provision is decimated. This situation, as the charity stresses, effectively means young carers – many of whom spend up to 50 hours a week looking after a relative – bear the brunt of the country’s deficit and might end up paying for it with their futures.

* To find out more the impact of caring resonsibilities on the young, try also checking out the very good Victoria Cares site, a week-long campaign by children’s charity Spurgeons revealing a week in the life of young carer Victoria.

The cuts: the worst is yet to come

An authoritative analysis in today’s Society Guardian of the deepest spending cuts in a generation, which start from Friday. The special issue inludes some sector by sector breakdowns of savings and job losses, including pieces I contributed to the in-depth coverage.

The cuts – an alternative

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.

It Cuts Both Ways…The Alternatives from Oonagh Cousins on Vimeo.

Growing old gracefully; shelter with style

London's 'best place to live' according to town planners
With 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?

* Images by photographer Lucy Baker

Autism lifelines at risk of unravelling

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.

But the kind of lifeline the Hope family relies on is under threat thanks to funding cuts. Click here to read my Society Guardian piece on how progress on autism is at risk.