Bums on seats? Not in a “relaxed performance”

Imagine an actor delivering a monologue in the complete opposite of a quiet carriage. Imagine audience members coming and going as they please throughout the show, standing up, sitting down, and making as much noise as they want. Forget bums on seats, this is bums being allowed to wiggle on seats, shuffle, fidget and move. And neither cast nor crew can protest.

It sounds like every actor’s worst nightmare – and every learning disabled theatre-goer’s absolute dream.

The scenario is pretty much what the cast and crew at the National Theatre are expecting on Saturday as the venues holds its first “relaxed performance” of Mark Haddon’s The Curious Incident of the Dog in the Night-Time.

It is the perfect antidote to the treatment meted out to some families – I speak from (unpleasant) experience with my sister and recall the fate that befell 12-year-old Gregor Morris last year and many more besides.

The atmosphere in the auditorium will be relaxed to provide “a more supportive environment”, as the NT says of the laissez-faire attitude to audience behavior. The theatre has provided “visual stories” to anyone coming to the performance – essentially support material to help people know what to expect from the visit.

The Curious Incident of the Dog in the Night-Time, Paul Ritter as Ed, Luke Treadway as Christopher Boone (photo: Manuel Harlan)

Crucially, there is to be no change in the content (why should an audience member be patronised or cheated on the drama simply because he or she has a learning disability?) and the play,
adapted by Simon Stephens, has not been 
specifically adapted for the special performance. As the NT puts it, despite the relaxed atmosphere, “this play is most suitable for those who will enjoy a narrative-driven performance”.

Luke Treadway as Christopher Boone and Niamh Cusack as Siobhan (photo: Manuel Harlan)

The theatre already runs audio-described and captioned performances and free touch tours for the visually impaired, but the new venture is the first of its kind for the venue.

Ros Hayes, the NT’s head of access, explains why it’s been launched: “We’ve watched the pioneering work on relaxed performances done by theatres like the Unicorn and West Yorkshire Playhouse with great interest and admiration and are now taking the opportunity to run a pilot relaxed performance. It’s something we’ve been wanting to introduce for some time and Curious spurred us into action.”

Given that a persistent cough or a rustling sweet wrapper is, in most theatres, an eyebrow-raising offence and not a ringing mobile phone could have you ejected faster than you can say “out damned spot”, how is the cast preparing for the distraction that a relaxed performance will inevitably result in? Hayes adds: “We’ve been working with a consultant with experience in this field and she will fully brief the company about what they might expect and how to handle any interruptions (many of the cast visited schools with pupils on an autistic spectrum in preparation for the play).” Crucially, it’s not just actors who are signed up to the idea: “Our box office and front of house teams have also been fully briefed.”

Hayes explains that the video, sound and lighting teams will adjust the effects for the performance – for example, softening and reducing lighting, sound and other special effects. The cast is rehearsing with these adjusted effects and adjusting some of their moves, so they don’t move too closely among the audience for example.

Interestingly, the NT is keen to encourage more performances for adults along these lines. Comparatively speaking, there is much more provision in the theatre and arts sector for children with special needs or disabilities – the Unicorn and special autism-friendly film screenings, to name but two, and I recently came across a learning disability-friendly panto via East Kent Mencap too.

Hayes says: “Curious Incident, although suitable for 13 years upwards, also very much appeals to an adult audience, so we are really keen to see if we can make this work successfully for an older age group. Put simply, we want as many people as possible to be able to enjoy our shows, whatever their needs.”

Encore. Definitely encore.

* The NT’s next relaxed performance, Hansel and Gretel, will be on Saturday 19 January 2013

Fragile X on film: how Mission to Lars could change attitudes

Meher Salman
“Oh really? But she’s so good at dance” was the response of an acquaintance who misheard my explanation that my daughter Raana has fragile X syndrome – she thought I’d said “fragile legs”.

Amusing though this incident from a few years ago is, it demonstrates how few people know about fragile X, the most common form of inherited learning disability estimated to affect at least 1 in 4000 males and 1 in 6000 females.

It is European fragile X awareness day next week, Wednesday 10 October, and the aim is to raise the profile of the syndrome in 16 countries across Europe.

Above, Kate Spicer and her brother Tom at a concert in the fragile x film Mission to Lars (photo: Mission to Lars)

I recently went to a screening of the film Mission To Lars, which features a man with the syndrome as its central subject, and I didn’t quite know what to expect.

But in fact all of us who are affected by fragile X can identify with this film in so many ways. The main reason I feel it’s such an important film is that it raises awareness of fragile X in a touching and moving way.

Tom’s obsession with Lars reminded me of my daughter’s obsession with the singer Noel Sullivan which began after she watched Popstars, the 2001 reality TV show that he was featured in. Even now she’ll mention him randomly in conversations, imagining what song he’ll be singing, or incorporate him in doodles, and likes to look up his latest show on the internet.

On the plus side, her obsession gives her something to talk about and do (from printing off photos to flicking through show brochures) and it’s definitely sparked an interest in musical theatre and music. The flip side is that she constantly repeats herself when talking about him (“when are we going to see the show?”) and it’s totally removed from reality.

The scenes in the film which show Tom hesitating to meet the drummer he hero-worships reminded me of the time when Raana went to see her own idol in a West End show but then got cold feet and refused to go backstage to meet him. I was left standing opposite him – he’d very kindly come out to say hello to her – holding a mug she’d made for him in a pottery class while Raana ran to the other end of the pavement, waving shyly.

Another striking similarity was when Tom relaxes when, during the filming, he “helps” with sound recording. Raana also feels more comfortable when she has something to do, like helping with cooking when the whole family’s together. She likes to have a role rather than feel like a spare part.

The relationship between the three siblings (the love and support Kate and Will give their brother Tom was very touching) reminded me of the relationship between Raana and her two older sisters.

What moved me most was Tom’s bravery and how he overcame his anxiety. Routine is very important to people with fragile X and for him to leave his familiar surroundings and travel hundreds of miles on this adventure was admirable.

If you see the film, it’ll give you a better understanding of fragile X and of how it affects not only the individual, but the family dynamics and siblings. For people who have a FX member of family, it makes you feel are if you’re not alone. Watching some of Tom’s reactions, I couldn’t help but think “I’ve been there”.

Although I saw Mission to Lars before the Paralympics, the summer’s sporting events did make me hope that more people would be more aware of disability and learning disability issues, and people’s attitudes should change for the long-term. Films like Mission to Lars will help bring about this change.

Who dares, swims…

July 1984, a Sussex school swimming gala; my 12-year-old self is poised above the sunlight-dappled pool, ready to slice through and glide under the surface like an elegant water nymph.

Sneaking a glance at my competitors, I’m surprised to see them positioned to dive rather than bottom-shuffle off the edge (my trademark style). I can’t really dive. Ah well, arms aloft, knees bent – how hard can it be?

Whistle goes and I spring like a bird through the air..and hit the water horizontally – a plank of wood thudding onto a sheet of thin ice. The impact sends globlets of water over the spectators and shots of pain into my middle. Struggling to regain composure I lumber through the water, more walrus than swan, before finishing 10th. Out of 10.

For the first time in 28 years since that belly flop, I’m bracing myself for a competitive swim.

Water good cause: we're swimming for learning disability charity Netbuddy

My friends and I (collectively known as the Merladies) are taking to the water in October, leaving the keyboard and going overboard, making a splash to raise some cash (donate and we’ll stop the crap puns) in aid of a very good cause, a Dares challenge for the learning disability charity Netbuddy

As the sibling of a (very fabulous) sister with a learning disability, the kind of support Netbuddy offers would have been invaluable when we were growing up.

Our aim is to zip through as many lengths as possible in half an hour and improve that total every week this month.

Merladies? Because we’re too mature to be mermaids. Swimming? Apart from the chance to redeem myself, my recent jaw op means my surgeon’s banned me from anything more hardcore than flailing about in a pool. Otherwise we’d be halfway up Everest. Obviously.

We began our splash for cash this week..here’s how it went:

Week one of the big lather household (anyone got a decent water-related Big Brother pun please?) and my fellow fundraiser Dr Ruth Evans, aka Evans the Eel, joins me at the water’s edge.

Eel bemoans the fact she was always in the ‘bottom swimming group’ at school (bottom stroke – new Olympic sport, sounds kinda fun!) but hopes to rise like a phoenix from the flumes, er flames, with the Netbuddy challenge.

I, meanwhile, am looking forward to what will be the most exercise I’ve done in the fortnight since my jaw op (apart from flexing a bicep to mash chocolate cake into easily digestible clumps).

And we’re off! Eel does indeed power through the water and – ah the indignity – swaps from my slow lane into the fast one.

30 minutes later, we’ve totted up 1500m – China’s Sun Yang set a new world record at London 2012, taking 14 minutes to do the same distance so really, by my, um, scientific reckoning, we’re halfway to matching Olympic record! Huzza!

* See our fundraising page for more info and how to donate to our charity challenge, any amount, no matter how small, would be very much appreciated.

Buddies: social skills for children with special needs

Mason Milne takes part in schemes that boost his social skills and confidence (pic: Dimensions)

Making eye contact is difficult for Mason Milne, who has autism, and making friends is even harder. Yet the 11-year-old has met both challenges while at a special needs holiday club near his home in Colchester, Essex, over the last year.

“He’s come out of himself,” says his mother, Mandy. “He’s made a friend at his club and we’ve noticed how he will come up and speak a little more.” Mandy, 47, and husband, Gordon, 48, meanwhile, get some respite from caring, reassured that Mason is enjoying activities like swimming or roller skating.

Read more about how the Buddies programme for youngsters with learning disabilities and autism goes beyond providing respite care on the Guardian website.

Unemployed to enterprising

Maria Ellingham had not worked full-time for a decade after having children. She then became a single parent who had the will to work but lacked the way. She was a qualified reflexologist and wanted to set up her own business, but she needed to find the confidence and to learn the skills of self-employment.

Yet in July, two months after taking part in a council-commissioned scheme, Ellingham launched her own reflexology business. A former account manager at a cosmetics company, she is among 54 people helped into employment or self-employment through Central Bedfordshire and Bedford borough councils’ building enterprising communities scheme.

Read more about the scheme to help people off benefits and into self-employment offers lessons for all service contracts on the Guardian local government network.

Maria with her children in her treatment room

A perspective on the Paralympics

Singer and rapper Dean Rodney, part of the Games Through Our Eyes website
There’s no shortage of media coverage of the Olympics and Paralympics, but one new online platform offers a unique and important perspective on the games.

Games Through Our Eyes is an accessible website for the 2012 Paralympic Games created by young reporters with learning disabilities. The team is supported by arts group Heart n’ Soul and social enterprise communications agency Poached Creative.

Games Through Our Eyes is covering wheelchair rugby, the three Paralympic sports open to people with learning disabilities (swimming, athletics and table tennis) as well as the Cultural Olympiad. This year is first time in 12 years that people with learning disabilities have been allowed to compete after Spain’s basketball team faked their disabilities in the 2000 Sydney games.

The reporting team includes Dean Rodney, a 22-year-old singer and rapper with autism whose audio-visual project, the Dean Rodney Singers, is part of the Cultural Olympiad. Dean, who has honed his performing talents through Heart n’Soul and who I’ve blogged about before, is part of the Unlimited showcase at London’s Southbank Centre starting today. Unlimited is staging cultural events alongside the Paralympic Games, having made major new commissions in disability, arts, culture and sport (for artist Rachel Gadsen’s contribution to the Cultural Olympiad, for example, see this previous post).

As far as the new website goes, Lilly Cook, one member of the reporting team, says the aim is for everyone with disabilities and learning disabilities “to be able to find out about them and all the other amazing things going on around them.” As Lilly adds in a recent blogpost: “Paralympic sports are just as exciting, professional and emotional as the Olympics.”

Alongside Lilly and Dean, the other reporters are Nicola Holley, Poppy Collie, Shalim Ali, and Laura Jarvis.

Expect some good coverage of Dean’s installation; the Dean Rodney Singers is an international digital collaboration of 72 musicians and dancers with and without disabilities from countries including Japan, China, South Africa, Germany, Brazil, Croatia and the UK. Their online interaction results in new music, dance and video and 23 of their pieces will be launched at the Southbank Centre today, with audience participation promised through interactive technology (the idea is viewers and listeners engage with the performers).

As well as the Dean Rodney Singers, other Heart n Soul artists perform in events during the Paralympics – the fabulous Lizzie Emeh at the Trafalgar Square Live Site this Sunday – fresh from accompanying Beverly Knight at the Paralympics opening ceremony – and The Fish Police (which Dean Rodney also fronts) at the Potters Field Live Site on Monday. The arts group’s spectacular multi-media club night The Beautiful Octopus Club (created by and for people with learning disabilities) is on Friday 7th September at Southbank Centre, the final weekend of Southbank’s Paralympic Games celebrations.

Keep up with the news on Twitter by following the Games Through Our Eyes team at @ourparagames

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 riots a year on: “If people see me as bad, I might as well be bad.”

Joe Hayman, author, British Voices
“Even though we’re not involved in gangs,” the young man from Hackney tells me, “the way people look at you just puts you down. No matter what you do, you’ll always have that bad name of a black kid from Hackney, so some people think, ‘if people are going to see me like that anyway, I might as well be bad.’”

Last summer’s riots, which began a year ago today, hardened my resolve to write an uncompromising book, British Voices, about our country from the perspective of its people. The comment above comes from a teenager I met in east London last August, not long after the end of the unrest.

The riots felt like an expression of something we had swept under the carpet. It seemed to me that failing to address the way that people in the country were feeling – including the sense that ordinary people’s voices often went unheard – would simply leave those feelings to fester once again. I wanted to approach the widest range of people possible and no matter they said, would present their opinions faithfully.

I started my research three weeks after the end of the riots. One of the first places I visited was Hackney, the scene of some of the worst trouble, and a lot of discussion focused on stereotypes of young people and a lack of opportunities.

“There’s a lot of talent in Hackney,” one young man suggested, “but there are no opportunities to uplift yourself. We’re left stranded; we have to fend for ourselves; so, if you see people with the nice car, you say, ‘I want some of that’. Our generation, we like fancy stuff but we can’t afford it – the riots were an opportunity to get things you know you couldn’t otherwise get.”

Was it worth the risk of a criminal record? “If there are no opportunities anyway,” he replied, “you might as well risk it.”

There was also anger towards the police. “They racially discriminate,” another young man said. “They search the black kids and leave the whites. They smashed my brother’s head against a windscreen, pushed me up against a wall, all for no reason. That’s why people rioted – they enjoyed having power over the police. They were saying, ‘If we wanted to take over, we could.’”

“It was great how youths were united by the riots,” one young woman said. “Gangs you wouldn’t expect to mix going up against the police together. It was great to see such spirit.” She went on: “It was wrong to burn people’s houses and family businesses, but the big shops all had insurance so what does it matter? I don’t see how it’s different from MPs and their expenses.”

I asked her whether the expenses scandal justified violence and looting. “No,” she said, “but it sets a bad example.”

It was an argument I heard again and again; indeed a sense of disillusionment, and alienation ran throughout the entire three months I spent travelling around England, Scotland, Northern Ireland and Wales. I went as far south as Lizard Point in Cornwall and as far north as the Shetland Isles, talking to over a thousand ordinary people along the way. They were disillusioned with different things and expressed their feelings in different ways, but the feeling remained.

As I travelled, the anger in the wake of the riots seemed to fade. It was replaced by a sadness, a sense that for all the social, economic and technological steps forward the country had made, a lot had been lost along the way: a sense of community, trust and responsibility to one another.

The riots may prove to be a one-off, a few days of violence consigned to history; and even if there is trouble again, the police will be better prepared to respond. But none of the underlying issues have changed since the unrest began a year ago. Indeed, since then the economy has deteriorated and national institutions – the media, the police, the banks and politics – have all continued to take a battering. Surveyed around the Queen’s Jubilee, 75% of respondents to a Yougov poll said that community spirit had got worse in Britain, chiming with my own findings.

I came home determined to use the lessons I learnt to found a new charitable trust, The Community Trust, aiming to address this issue. My confidence comes from the most powerful lesson from my journey: that, in spite of all the changes in our society and the challenges we face, the kindness and decency of the British people lives on.

I also picked up some valuable lessons on the types of initiative that the new trust might support to harness that kindness and decency and to build a stronger society.

First, projects bringing together people from different backgrounds, building social bonds, fostering trust and breaking down barriers between communities. Second, initiatives enabling people to help each other to navigate their way in an increasingly complex, difficult world, building the skills, networks and personal attributes needed to get through and to thrive.

Small but important initiatives such as these – and the willingness of ordinary people to support them – could foster a greater sense of community and citizenship in Britain. That might not solve our problems, but might help us to face them together, rather than turning in on ourselves.

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.

Saba Salman on social affairs