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Why I always had time for George: older people and mental health

I’m walking across the grounds of the psychiatric hospital on a very wet winter evening and a patient, let’s call him George, steps out from behind a bush to talk to me. He needs to tell me something that he feels is important and can’t wait.

We both stand for quite a while talking (he’s a staunch socialist and wants to talk politics) and both get soaked to the skin. I think to myself that it’s more respectful to hear what he wants to say then hurry on and seek shelter. As we eventually walk back to the ward together, he is calmer, seemingly content to have got his feelings off his chest.

This scene took place more than 20 years ago (I mention it in my book, Sticks and Stones) but I believe now what I thought then, that my exchange with George is what real empathy is all about. It’s what being non-judgmental is about, what being human is about, what being a nurse is about.

I have nursed enough people during my time as a mental health nurse to understand that life is a bit of a lottery. I have seen the elderly lose their dignity in nursing homes and in hospitals. This is not always through dementia. This could be depression or psychosis, or other debilitating illnesses depriving them of their confidence, self worth, and esteem.

But as the recent figures about suicide rates rising among the elderly show, mental health issues may be overlooked in older people as society mistakenly presumes dementia is the only condition older people experience. Another assumption is that depression is a normal part of ageing, because the elderly have more of a sense of their own mortality.

I hope that whatever befalls me in my old age I am shown the same respect and compassion as I believe I have shown others. There’s often a failure of respect not just because of deliberate neglect or a lack of compassion, but through ignorance – through not treating people as individuals or not meeting their emotional needs.

So how do we prevent this? Essentially it is around searching for the person behind the illness and stepping back for a second and thinking “how would I like to be treated if this was me?” or “would I like to be looked after in this environment?”

Of course I’m not arguing against the completion of care plans, but I do worry that the increasing onus on form-filling and box-ticking can deny care staff more time to spend with those they support. A care professional might be spending hours on admin, or typing up a care plan – but how does the person in their care know this is part of them being cared for? They’d rather have our face-to-face time I’m sure.

Person-centred care, as the name suggests, is meant to put the client at the heart of the care planning process. This care is collaborative and negotiated with the client (theoretically). However, often when someone is acutely psychotic and lacks all insight, nurses then become the advocate and the care must be planned depending on what is required to get the person well again. As for personalisation and personal budgets, the take up is sadly not as high as it should be; people worry about risk management and general funding pressures that can put people off.

Compared to when I was in a clinical setting, today’s care world involves a far more litigation and risk-averse culture which takes staff away from the client. At the time I knew George, I could spend longer in one to one sessions with clients, so could my colleagues, but more often than not, today’s staff are only allocated a set amount of time each shift to spend in one to one, face to face therapeutic sessions on the wards.

Staff cutbacks on the wards and in the community will also reduce the time staff can spend with clients in face to face interventions. However staff should still show empathy and be non judgmental in all approaches, because this is the essence of their roles.

Clearly, organisations promoting older people’s issues have a role to play in raising awareness and educating. We stigmatise the elderly as much as we stigmatise the young people, so we need more positive promotion of what the elderly can offer society. Countries like China and Japan, for example, revere the elderly and yet in this country I think some people view them as an afterthought, a burden.

The hospital where I met George has long since been converted into a block of expensive flats while the man himself, already in his 80s when we had that long rainy chat, will have passed away many years ago. But the memory of that evening stays with me as a reminder of the underlying principle of care as I see it; listening to, respecting and having the individual – not “the system” – as your main focus.

The next generation of social entrepreneurs?

Amid the talk of troubled families and approaching the anniversary of the 2011 summer riots, it’s tempting for many to pigeonhole young people as feckless and hopeless. A Europe-wide project, however, aims to encourage a new generation of social entrepreneurs into the movement for social change.

There are an estimated 11m EU citizens involved in the social businesses and Brussels-based JA-YE (Junior Achievement Young Enterprise) Europe Social Enterprise Programme aims to motivate young people to find solutions to socio-economic problems, boost their employability and give them practical skills in enterprise and ICT skills.

Teams of young entrepreneurs aged 15-18 from 10 European countries have just competed in JA-YE’s (which is funded by businesses, institutions, foundations and individuals) first competition to create social businesses. with the entries judged different countries.

The winning enterprise Nomeno (“No means no”), from Norway, developed Safe and Sound, a bracelet with a warning whistle that helps summon help in an emergency. The team is donating profits to the to the Norwegian National Association for Victims of Violence. Second place went to Russian young people, for the social enterprise TrustCane to create advanced walking aid canes.

Think Fit, a team from Tre-Gib School, Carmarthenshire, representing the UK, came third. The project, aimed at boosting healthy living, created activity cards in different languages to encourage children to exercise. The social business also produces branded water bottles, T-Shirts, high-visibility tabards and bags. The young people have also created Welsh, French and Spanish versions of the pack.

I suppose the niggling concern I have is how easy it is for kids to access the kind of scheme run by JA-YE- not being an education specialist, I’m not certain how schools would have things like this on their radars. That said, with much focus on the lost generation of n’er do wells, it’s worth nodding anything that aims not only to raise aspirations, but teach practical skills to make young people more employable.

Sticking plasters, surgery and spending reviews

A damp squib of a sticking plaster, or what health secretary Andrew Lansley has said is the “most comprehensive overhaul [of social care] since 1948” and an end to the care lottery?

Most early reaction to today’s long awaited care and support white paper and its associated draft bill is firmly on the side of the former view.

I’ve yet to read all the detail, but while there’s a much-needed focus on elderly care, there’s not enough of a recognition for other sections of society needing care and support, and nothing to plug the funding gap.

As Merrick Cockell, chairman of the Local Government Association, told Radio 4’s Today programme this morning: “We haven’t got time to tinker around…We’ve got to look at radical change.” The LGA has said there is a £1.4bn gap this year between the money available and the cost of maintaining social care services. There’s a good run down of the council perspective on the LGC website and while this post from Ermintrude2 was written before the publication of the white paper, it’s a really good explanation of the issues.

While today’s announcement picks up some from the Dilnot report (Dilnot suggested a system for the elderly where the total cost of care would be capped to £35,000 and support to old people should be extended to those with assets of £100,000), any “victory” for common sense and civil society is bittersweet because it fails to lacks the cash to make real far-sighted change a reality. The proposals might well show good will, but there’s no financial way (this communitycare.co.uk piece relates to the vision for social work, which could be undermined by the lack of cash).

It is, as shadow health secretary is quoted in the Guardian’s politics live blog as saying, “a pick and mix approach to the Dilnot package”. So the government hasn’t taken up the “once in a lifetime opportunity” that Dilnot mentioned when he launched his vision of how to fix the social care system.

Among today’s main points are plans for an optional social insurance scheme under which people pay the government premiums to ensure that their costs for care and accommodation are capped, and a “universal deferred payments” system where councils lend money to those needing care, then recover the cash when the house is sold after death. Sound sensible – perhaps even familiar? That’s because it’s already in use – around 9,000 people already used deferred payments.

Today’s government press statement suggests we watch this space: “The government will continue to work with stakeholders to consider in more detail variants under the principles of the Dilnot commission’s model, before coming to a final view in the next spending review.”

Having already waited with bated breath for today’s long overdue white paper and draft bill, it’s unlikely that many will hold it much longer.

Here’s a flavour (by no means a comprehensive round up) of reaction on Twitter and the web to today’s social care white paper:

Richard Humphries, senior fellow at the King’s Fund: “There is a financial vacuum at the heart of these proposals which undermines the bold and ambitious vision for a reformed system set out in the White Paper.”

Julia Unwin, chief executive of the Joseph Rowntree Foundation: “Successive governments have failed to act. Without a sense of urgency more of us face insecurity and uncertainty as we age. The failure to address social care properly will only mean more pressure on the NHS thereby destroying all hopes of a sustainable and functioning health system in the future.”

Clare Pelham, chief executive of disability charity Leonard Cheshire Disability: “It is a question of fundamental decency that disabled and older people should be able to live their lives with dignity in Britain in the 21st century. We hear a great deal about the need to support older people through dignified social care, but it is important that the needs of younger disabled people are not overlooked.”

Mark Goldring, chief executive of Mencap:”The social care system is in crisis. Years of underinvestment and cuts to services have left one in four adults with a learning disability literally stuck in the home, isolated and at risk, with family carers at breaking point and scared about the future…We are reassured to see that the Government has committed to fund immediate reforms, but this promising blue print will never get off the ground if it fails to address the chronic underfunding in social care. The Government cannot delay any longer, and must now outline an urgent plan of how it intends to fund social care reform in the long term.”

Carers UK chief executive Heléna Herklots: “The measures set out in the draft Care and Support Bill would move from piecemeal carers’ rights legislation to the establishment of carers’ rights in government legislation and, for the first time, equalise carers’ rights with disabled people rights…But to make these rights a reality, what carers also need is a social care system with the resources to overcome years of chronic underfunding and rapidly growing demand. Those who face soaring care bills, service cuts and a daily struggle to access even basic support from the social care system, may see new rights in legislation as empty promises without the funding to back them up.”

David Orr, chief executive of the National Housing Federation: “We’re pleased the White Paper recognises that housing is crucial to the integration of health and social care, and welcome the investment to build more supported housing for older people and younger disabled adults…We need a health service that invests in services that keep people out of hospital, not one that simply treats them when they get there….the Department of Health needs to encourage local government and the NHS to pool budgets, focus on housing-based preventative services and set out its full proposals for the funding of social care – for today and for tomorrow.”

Nick Young, chief executive of the British Red Cross: “That the Government is accused of failing to address the social care crisis is no surprise. The scale of the funding problem is enormous and growing. It will take courage, creativity and tremendous degree of political will to solve. That isn’t going to happen overnight.”

Reaction on Twitter using hashtags #carewhitepaper, #ukcare and #carecantwait (also check out ‏@sim89 Storify‬ compilation of early responses):

@ageuklondon Though it contains some good ideas, the #carewhitepaper doesn’t go far enough. The problem of care will not go away and is getting worse!
‏@Sensetweets Deafblind people continue to be abandoned, as funding fails to materialise – our response to the #carewhitepaper
‏@TonyButcher #carewhitepaper – like excitedly looking forward to your birthday but then only getting a cheap pair of Primark socks – disappointing
‏@gary_rae If this is a “watershed moment” for #ukcare then we’re clearly drowning. #carecantwait #dilnot
‏@Marc_Bush Care crisis demanded decisive action. Today we got a holding statement…’ @scope rspnd 2 @DHgovuk ‪#carewhitepaper‬ http://tiny.cc/scopetocare
‏@WoodClaudia focus on deferred payments in ‪#carewhitepaper‬ due to absence of other funding ideas. It is option for some, not THE solution being proposed
@Ermintrude2 Disappointed that headlines about #carewhitepaper all seem to concentrate on selling houses to pay for care. System about so much more.

“People aren’t cases, they’re individuals”

Debbie Walker is “a guardian angel”, according to Julie Mason, whose 86-year-old mother, Elizabeth, has Alzheimer’s.

Two years ago, when Walker, a Sheffield Council care manager, met them, Elizabeth’s care involved daily agency staff plus Julie and her sister as unpaid carers. The family felt Elizabeth lacked choice and control, spent a lot of time with nothing to do and had little social interaction. Read the rest of my piece on how one council is letting external organisations lead on support planning on the Community Care website.

A support planning session at Sheffield city council (pic: Sheffield city council)

The science of the sofa

Artist Michael Pinsky launches Fidget (pic: Geoff Caddick/PA)
Is there a science to sitting on the sofa? Any benefit to being on your backside? An art to sitting on your arse? An innovative new project by one of the country’s leading artists blends science and art in a bid to persuade the public that there is, sparking debate about obesity, activity, exercise and health along the way.

Comedienne Katy Brand helps launche Fidget (pic: Geoff Caddick/PA)

Launched in King’s Cross yesterday to capitalise on the Olympics (which many of us will sit around watching, doing very little exercise) the pop up Fidget campaign promises an “interactive canopy housing an arts experience”, created by renowned British artist Michael Pinsky.

Six “game zones” under the canopy encourage people to try simple activities for themselves and learn about the difference that moderate movement can make. On average, people spend about four hours a day watching television.

Dr Wilby Williamson, who has been involved in the development of Fidget (pic: Geoff Caddick/PA)

Run by London Arts in Health Forum and funded and supported by the Wellcome Trust, the project runs for a year, touring London before a nationwide tour of festivals, public spaces and other events this summer including Skegness, Edinburgh, Bradford, Bristol, Taunton, Gateshead and London Broadgate (see website for more details). There will also be interactive online communication tools developed by online charity YouthNet, which support young people online.

I never imagined I’d be selling my body for drugs

Vulnerable women are the focus of charity St Mungo's new campaign

“I never imagined in a million years I’d be selling my body for drugs…I’m still doing it now… I’ve nearly been killed three times doing [prostitution]. I’ve been raped doing it.. as a result of that I got HIV doing it. But it’s easy money.”

These words belong to Angela (not her real name), 38, speaking to homelessness charity St Mungo’s (you can hear more from her on the St Mungo’s website here).

Her story highlights some of the particular issues homeless women are known to face more than their vulnerable male counterparts – prostitution and domestic violence, for example – which the charity is focusing on during its action week this week.

The week kick starts St Mungo’s new campaign, Rebuilding Shattered Lives, the aim of which is to give a platform to best practice and innovation relating to supporting homeless and vulnerable women.

Traditionally, homelessness services were designed with men in mind but in England over half of those living in temporary accommodation are women and a quarter of St Mungo’s 1,700 residents are women. Until just three years ago, women fleeing an abusive relationship were deemed intentionally homeless (and so didn’t have housing rights) and encouraged to return home.

Housing and homelessness campaigners have long argued for more attention to be paid to women and homelessness (a 2006 report from housing charity Crisis still makes for stark reading) given there can be additional factors in their lives which might push them into homelessness – domestic violence and abuse, for example. The true nature of women’s housing need can also be hidden as they opt to stay with friends or sofa surf between spells of rough sleeping. While they can access mixed housing, as opposed to female-only hostels, for example, there is an argument to say that that more widespread female-specifc, housing-related support would make recovery easier.

St Mungo’s 18 month-long campaign invites organisations, frontline staff and female service users themselves to contribute ideas on preventing women’s homelessness and supporting recovery. Campaign themes including childhood trauma and domestic violence, as well as educational and employment opportunities, and restoring links with families and children.

A recent survey of St Mungo’s female residents concluded that more than a third who slept rough say their experience of domestic violence directly led to their homelessness while almost half are mothers. More than one in 10 have a history of being in care.

It’s worth noting that, as well as the stories like Angela, there are other examples in the St Mungo’s campaign of how, with the right support, women have started to turn their lives around.

“Mel”, for example, was living and working on the streets for two and a half years before coming in. She told St Mungo’s staff: “I’ve never had any stability. I don’t get on with my family, I’ve always been around drugs and getting clean when you are around other users is difficult. But I’m getting there, slowly…When I moved in here a year and a half ago I was a mess and I just slept, catching up you know. Then I turned things around, turned daytime into time for ‘doing stuff’ and nighttimes for sleeping.”

She added: “To get your benefits and all that you need to get to appointments, you have to get out of bed and you need the right help. That’s what I got here, though it took me a while to adjust, to get my head stable. What you need is people taking you seriously, people listening to what you want. What people need to understand is that just because you don’t comply with their ‘rules’, don’t turn up or whatever doesn’t mean ‘give up on them’.”

As the campaign develops, it will be interesting to see what ideas and services for women like Angela and Mel are showcased and what changes, if any, the charity’s follow up surveys reveal about an issue that has only comparatively recently been given a specific focus.

Dads and disability

Zach and his father Kevin, who took part in research about fathers of disabled children published today, Dad & Me.
Imagine feeling under pressure to keep your child a secret from your employer. Imagine, at the other extreme, being abandoned by your friends for focusing too much on the needs of that child. What about if you felt you didn’t fully understand your son or daughter’s abilities, or felt so isolated and condemned to a life of hopelessness that you worry the stress is affecting your health or relationship?

This is the reality facing many fathers of disabled children, according to new research published today among 500 dads carried out by disability charity Scope and online community Netbuddy.

As one father told researchers during the survey carried out in April: “My friends have abandoned me because they don’t understand why I have to care for my child so much. And I know she won’t ever get better….My career, once promising to put me at number one in the world at my specialist area, is now going nowhere as permanent exhaustion means that talking intelligibly is a major achievement. But I love and care for my child. It isn’t her fault.”

The research, Dad & Me, aims to raise awareness about the role of male carers; while an estimated 5% of the population are carer dads, so far there has been little research into their experiences.

Today’s findings suggest that:
• 15% of dads keep their child a secret from their employers
• 40% do not fully understand their child’s disability (“Medical appointments are usually in the day and I cannot always get time off work to attend…this leaves me with less first-hand knowledge of what my daughter’s autism means and makes me feel inadequate.”)
• 72% say caring for a disabled son or daughter has affected their relationship with the partner with stress and tiredness among the causes
• 61% think mums are treated differently from dads

Deborah Gundle, Netbuddy founder and mum to Zach who has Angelman syndrome (pictured with his dad above), says: “We wanted to highlight the important role that dad carers have, but to realise the extent of the problems dads are facing has been overwhelming. Even I had not considered the extent of dads’ involvement – both emotionally and practically – and it is commonly the case that mothers are assumed to take all the responsibilities of caring on board.”

Dads feel marginalised as carers as the common view is that women cope better in the home, are listened to more and given more support and sympathy while the role of the father is to support the family financially.

As Richard Hawkes, chief executive of Scope, explains: “This survey shows that everyone involved in supporting families’ needs look long and hard at what can be done to support dads to play a part in caring for their children.” Hawkes argues that if the government is truly to create the family-friendly society it wants, it needs to do more to promote flexible working to support family relationships and finances. Scope also has a support group for fathers, which it hopes to expand.

The fathers in the survey suggest improvements which could help support them in their role as dad carers such as appointments outside working hours, specific help and advice sessions for dads and more employer awareness. Like all parents and siblings of disabled children, they also argue that better social integration – more opportunities for children to integrate with others in their age group in “everyday” social situations – would help.

While in theory parents of disabled children have a right to ask their employers for convenient hours and employers must seriously consider this as an option, there is a gap with reality, according to dads who took part in today’s survey.

Netbuddy has also recently launched a new forum for dads.

James’ story
James is a father to eight-year-old twins Thomas and Alice, who both have dystonic quadriplegic cerebral palsy, and to baby India. A PR consultant, he leaves the house at 6am and returns at 8pm, when his carer role kicks in. “Holding down a demanding job and being a carer can be a stretch at times,” he says. “I’m lucky enough to have a very understanding team of colleagues, but I do worry for dads who get held back in their careers because their employers feel they already have enough on their plate. People are sometimes denied opportunities to move up the ladder.”

James says most people assume that because he works, his wife does all the caring. The dual demands of work and the additional needs of his children means there is precious little time is left James and his wife to be together as a couple. “We have very little time to be together on our own and the pressures of caring for our twins and sleeplessness do take their toll. However, it has had a positive effect too – in building a strong bond through the difficult times we face.”

James would like to see more support for dads in terms of out of working day appointments and extra support services. “All support is during the working day so it’s not accessible for working dads. Asking for support as a father can be seen to be a weakness and a sign that we are not coping. There isn’t enough support or help available to us – and this is essential so that we can provide the best possible care when looking after our loved ones.”

Cuts: do the right maths

I had to share the infographic below from learning disability charity United Response which, if you’ve not already seen it, lays bare the impact of cuts to disability living allowance (DLA), the benefit that helps people with care and mobility costs.

Compare these stark sums to Ian Duncan Smith’s much-criticised claims that the number of people claiming DLA had risen by 30% in recent years and its cost will soon soar to around £13bn a year.

Not that a war of figures is the thing here; as shocking as the total numbers below are, the persuasive argument against the cuts is the individual stories of the difference this vital benefit makes to people’s lives and what will happen if it is cut. It’s easy for politicians to bat percentages and pound signs back and forth (and fudge the facts and stats, as the Spartacus report suggested earlier this year); it is harder to ignore the personal stories of how reform will make life even more difficult for those who are already vulnerable.

As Rob, a wheelchair-user who has multiple sclerosis, commented in a blogpost on the Voluntary Organisations Disability Group (VODG) website (I manage the group’s blog), DLA allows him to be more independent: “Whilst it isn’t always easy, I think you have to make the most of life. The DLA enables that life to be a better one.”

Take a look at the figures:

How the cuts to Disability Living Allowance will affect disabled people

Youth film reveals the hidden gems of black theatre

The term black theatre might conjure up images of a niche and very 20th century concept, but from Ira Aldridge playing Othello in Covent Garden in the 1830s to the 1990 production of Amani Napthali’s Ragamuffin and to grime star Bashy in a rap opera a couple of years ago, the genre is historical and diverse – if lesser known than its mainstream counterpart.

A youth-led film being premiered at London’s Royal Court theatre today, Margins to Mainstream, seeks to demystify and tell the story of black theatre in Britain. Made by young people in west London and Birmingham, in a partnership between London’s Octavia Foundation and Nu Century Arts in Birmingham, with funding from the Heritage Lottery Fund, its visual treasures include forgotten plays and landmark performances.

Those who appear in the film include playwright and broadcaster Kwame Kwei-Armah and Pat Cumper, director of the Talawa Arts Centre. The film was shot at locations including Theatre Royal East, London Southbank Centre, Royal Court Theatre, Old Vic and The Tabernacle.

The cross-city project allowed young people in London and Birmingham to learn and develop skills in media, research and film-making and is the latest in a series of innovative community filmmaking initiatives from the charity.

Zakiya, 18, a sixth form student studying photography, media and sociology and a tenant of Octavia Housing, adds that working on the project has inspired her to see more theatre and be more creative: “I didn’t really know anything about black theatre before, or theatre in general but it was really great and we saw some good productions…this project has helped build my experience in the field – I’m studying media, sociology and photography and want to be a photographer when I’m older. Seeing the finished film and knowing I’ve been a part of it is incredible.”

After the premiere in London the film will be screened at venues throughout London, Birmingham and the rest of the country and made available to theatres, arts and community groups and other interested groups later on this year. You can find out more about the screenings here.

Art in aid of disability

Bladerunner, a sculpture of champion sprinter Oscar Pistorius by John Buckley, exhibiting at the Bloomsbury Art Fair
There are 20m people across the world who need a wheelchair and don’t have one, according to the World Health Organisation, and the average life expectancy of a paraplegic in a developing country is far shorter than in the western world.

The charity Motivation designs wheelchairs that can cope with these challenging overseas environments and is among the charities benefitting from the second Bloomsbury Art Fair, which I blogged about last year.

At this year’s event in July there is more than a nod to the Olympics and Paralympics (one of the pieces in the exhibition, Bladerunner by John Buckley, is pictured above). Organisers are hoping to draw bigger crowds and funds than last year with works as diverse as Sophie Morgan’s beautiful drawings and Olympic and Paralympic sculptures from Art At The Edge.

Flowers, by Jo Oakley, showing at the Bloomsbury Art Fair

All profits from the Bloomsbury Art Fair will be donated to three charities, including Motivation, which support people following a life-changing injury. In its inaugural year last year, the event drew more than 3,000 visitors and made more than £60,000 for its chosen disability charities.

Another beneficiary is Southern Spinal Injuries Trust supports the Duke of Cornwall Spinal Treatment Centre in Salisbury and people living with a spinal cord injury in the South and South-West of England. Funding donated from the 2011 Bloomsbury Art Fair is currently being used to build a pioneering rehabilitation garden in the grounds of the centre.

Walking With The Wounded supports young military servicemen and women who have suffered injuries and will also benefit from the art fair. Money raised will finance new qualifications, courses and further education for people who are seriously injured, enabling the blind, burn victims, amputees and people with other long-term injuries to rebuild their lives and to return to work.

This year’s event also features a creative arts programme and live music and sculpture demonstrations in the courtyard of the exhibition venue Goodenough College. Among those returning to this year’s fair are artist Sophie Morgan, photographer David Constantine, sculptor Ian Edwards and The Helium Foundation, which will be showing works from artists such as Nick Walker and Damien Hirst.

With such a diverse range of mediums and pieces (prices range from £50-£25,000) and a huge array of galleries, dealers and artists (and by huge array, I mean established and emerging artists as well as able-bodied and disabled), it promises to be a fascinating event.

* The Bloomsbury Art Fair runs from 6-8 July 2012 at Goodenough College, London House, Mecklenburgh Square, WC1N 2AB. Ticket information is here.