Category Archives: Health

“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.

No voice for the vulnerable

Can you imagine being so desperate for affordable legal advice that you go on an eight-hour, 300-mile bus trip just to get help? I came across such a case seven years ago; a Welsh man facing eviction from his council-owned cottage when the area was being redeveloped found that the only housing legal aid lawyer willing to take on his case was in West London. So desperate was the man to stay in the cottage he had been born in and so great was his fear of homelessness, he made the trip.

Although this tale is from 2004, it highlights the vital safety net legal aid (when the state pays all or part of the legal costs for those who cannot afford them) provides to society’s most vulnerable. The number of solicitors who carry out legal aid work have been falling in recent years (hence the Welsh man’s 300-mile journey) thanks to uncompetitive pay rates, hours of unpaid work and red tape. But now, under government plans to cut the legal aid budget by £350m, the situation could get worse for those wanting to access affordable legal help. It is estimated that around 500,000 people could lose out on legal advice amid the planned cuts as the government wants to remove clinical negligence, family law, education, non-asylum immigration and housing cases from legal aid’s scope.

Today is Justice for All day, with marches and petitions planned by a coalition of 3,000 charities campaigning against the cuts and you can also oppose the cuts at social action campaign site 38 Degrees.

The Law Society, which represents solicitors in England and Wales, has also launched Sound Off For Justice, a campaign for alternative reforms that it says will save more than the government’s own proposals and protect legal aid funding. The campaign encourages the public to demand the government reconsider its plans and look at the alternative measures which it says would save £384m in the next 12 months. You can record a voicemail for Justice Secretary Ken Clarke against the cuts here. The campaign is supported by, amongst others, housing charity Shelter, the Refugee Council, lone parent charity Gingerbread and housing association Eaves.

Here’s the campaign’s latest video:

There’s something rotten going on when an endless glut of super-injunctions protect the privacy, reputations and careers of the super-rich but a lone parent, for example, is denied basic access to his children because he simply can’t get the afford the advice.

What no big society?

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…

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.

The reality behind the mental health strategy rhetoric

Carrie Holroyd, writer and mental health activist

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?

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

All in a good cause? Charity cold callers target the vulnerable

Freelance journalist & editor Kate Murray
My 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.

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.