Category Archives: Older people

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.

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.

Storytelling in senility: revealing dynamic personalities beneath the dementia

One of my biggest regrets is that I didn’t take down more of my mother’s stories before her slide into dementia accelerated. I would have liked to know more about her brief engagement to a Vietnamese diplomat, or the time she visited Benidorm when it only had two hotels, or what more she could tell me about her older brother who was killed in the war.

That’s why I was fascinated to meet David Clegg, the man behind an inspirational project dedicated to collecting the life stories of people with dementia. His Trebus Project has collected a huge range of stories, some of which have been published in two books and collected on a record and some of which have formed the basis for a Radio 4 series, produced by Paul Whitehouse and Charlie Higson. He’s now working on a short film.

It is estimated that over the next decade, the number of people with dementia will hit one million and today the prime minister is due to launch a “national challenge” on the illness, describing it as a “scandal” that the UK has not done more to address dementia. The cost to UK society is estimated at £23bn.

The prime minister is due to announce a major funding boost for dementia research, reaching £66m by 2015, from £26.6m 2010. He is due to say that “the quiet crisis” is one that “steals lives and tears at the hearts of families”

David Clegg’s Trebus Project is about revealing the fascinating and rich histories of people with dementia; it is about celebrating the lives that appear to have been lost.

Trebus began after Clegg closed down the art gallery he used to run and began working on art projects with care home residents. The very first person he met happened to be a woman with a fascinating tale to tell: she’d once been the girlfriend of the notorious acid bath murderer John Haigh.

“Nobody knew it,” he recalls. “They saw to her needs – it took two people to get her into a hoist for example, but they didn’t know anything about the fact that she was bohemian beyond belief. She would have given William Burroughs a run for his money – she’d hung around with Princess Margaret and made her way back from the south of France wearing only a fur coat and high heels.”

Sheila, one of the Trebus "storytellers" in her extrovert younger days
Sheila socialising (note she's standing in front of cricketer Fred Truman)
Sheila at her care home, in front of a portrait of her younger self

Clegg is full of anecdotes about the people he’s spoken to. One of my favourites comes from an elderly gay man, who remembered celebrating VE day in London. “I asked him: ‘Did you go to the Palace and see them on the balcony?'”, Clegg says. “He replied: ‘No I was in the toilets – I got off with seven soldiers that day and one more in the tube.’”

It’s a perfect illustration of Clegg’s point that far too often we try to sanitise the lives of people with dementia. “A person with dementia is presented as someone fading away, leached out, who’s a shadow,” he says. “But many of the people I’ve worked with are not shadows – they are trying to make sense of their lives in difficult circumstances. They are not any less as people – they can be as funny, vibrant, passionate and randy as they ever were.”

His is a refreshingly unsentimental view of dementia. “We need a new story on dementia. We either present it as a global epidemic or a tragedy,” he says. “But we have got to get the message across that these are people who were not always old, who have lived lives that were full and eventful. Sometimes we might disagree with what they did or the opinions they held but dementia care needs to grow up and embrace some of the complications.”

Clegg, who did a stint working as a carer to see what it was like, plays down talk of being an agitator for the human rights of people with dementia. “I go in and listen and keep coming back,” he simply says. But his project does shine a light on the appalling way older people can sometimes be treated.

A striking shot from the Trebus Project, this time of Marianne, another storyteller

Take the story of John, a man with no living relatives, who when Clegg first saw him was lying on a bed staring at the ceiling, in a completely bare room without even a clock to mark the passage of time. When care home staff were asked by Clegg to bring him a clock they did – but then fixed it on the wall behind his head.

Clegg says the vast majority of care workers do their best, reserving his ire for the lack of resources to stimulate residents and the managers or directors who only want to fill their beds – and who have sometimes banned him from their premises because they were nervous about what he was doing.

His main motivation, he says is to collect words that would otherwise be lost. In the process, he is putting together something incredibly powerful: stories that are sometimes funny, sometimes moving, sometimes, as he recognises, almost like a Samuel Beckett play in their bleakness.

The Trebus Project provokes you into looking behind dementia stereotypes

It also, says Alison Wray of Cardiff University, has very real benefits for the person with dementia, putting them at the centre of the process and allowing both them and their carers to reconnect with their identity. In Clegg’s recent work, he has been doing less editing to give the stories a traditional narrative structure. Instead they are presented as fragments. Says Clegg: “It can show what dementia is like from the inside.”

To buy the publications or to donate to support the work of the Trebus Project, go to the website or email information@trebusprojects.org

The truth about rough sleeping

The Truth About Stanley trailer from www.thetruthaboutstanley.com on Vimeo.

Think homelessness and film and you can’t fail but think of Cathy Come Home. While the social action that followed Ken Loach’s cinematic call to arms was a one-off, the film project The Truth About Stanley could be a modern take on that artistic tradition; a visually striking and thought-provoking piece of social realism that seeks to raise not only awareness about homelessness, but funding.

Just today the government’s new homelessness figures showed 48,510 households were classed as homeless in 2011, a 14% rise on 2010. The situation has led one charity chief executive, Leslie Morphy, of Crisis, to demand action from the government amid the “perfect storm” – a combination of economic downturn, joblessness, soaring demand for affordable housing, housing benefit reform and cuts to homelessness services.

This is the dire social and economic backdrop to the forthcoming film shot by award-winning director Lucy Tcherniak. The Truth About Stanley tells the story of two rough sleepers who make unlikely friends; Stanley, an elderly Congelese man, and Sam, 10.

Still from The Truth About Stanley
Stanley (Oliver Litondo) in The Truth About Stanley

The non-linear narrative is intriguing, opening as it does with the death of Stanley and developing into questions about Stanley’s past and the reasons for Sam being on the streets.

Sam (Raif Clarke), The Truth About Stanley
Sam, The Truth About Stanley

The lines between reality and fiction are blurred as the pair’s friendship develops and Stanley regales his young runaway companion with stories from his past. Or, as the website neatly puts it: “No home, no belongings, plenty of baggage. A short film about a man, his stories and the boy who listened.”

The project, a twist on more traditional donation campaigns, aims to raise money for two homelessness organisations, social enterprise The Big Issue Foundation and charity Anchor House.

The film offers a much-needed focus on the twin issues of older and younger rough sleepers. Entrenched rough sleeping is common among older rough sleepers but accurate figures on the issue and that of homelessness among older people are hard to come by, partly because of the hidden homelessness and the lack of age breakdown in head counts.

According to Homeless Link, however, the 2010 total of street counts in authorities with a known or suspected rough sleeping problem was 440 and generally around 18% are over 50-years-old.

As for children sleeping rough, again the figures lack accuracy, but according to the charity Railway Children, at least 100,000 children runaway in the UK every year and many are not reported as missing by their parents or carers. According to youth homelessness charity Centrepoint, 80,000 young people experience homeless in the UK each year.

The 20-minute film is being produced in association with Oscar-winning Trademark Films and features songs by Radiohead and Mumford and Sons. Stanley is played by renowened Kenyan actor Oliver Litondo, the lead from the international feature film The First Grader and Sam by 12-year-old Raif Clarke. This Guardian piece from last year tells you a bit more.

The trailer and shots here (photographs by Ben Millar Cole) have been released ahead of the premiere on April 2 at the Rich Mix cinema in Shoreditch. The film will be and released online on April 4th.

*To donate text STANLEY2, 3 or 6 to 70300 to give £2, £3 OR £6 to The Truth About Stanley fund or visit the project’s
Just Giving page.
100% of the donation will go to homeless charities Anchor House and The Big Issue Foundation. Follow the film on Twitter.

12 days of Christmas, Social Issue-style

Season’s greetings from The Social Issue – to mark the jollities, here’s a snapshot of some of the upbeat posts and pictures about people, projects and places featured over the last 12 months. This festive pick is by no means the best of the bunch – the inspiring stories below are included as they’re accompanied by some interestin and images and almost fit with a festive carol, if you allow for a little the poetic and numerical licence…

Very huge thanks to the Social Issue’s small band of regular and guest bloggers, all contributors, supporters, readers and everyone who’s got in touch with story ideas and feedback. See you in January.

On the first day of Christmas, the blogosphere brought to me:

A tiger in an art show

Batik Tiger created by a student at specialist autism college, Beechwood

Two JCBs

The Miller Road project, Banbury, where agencies are tackling youth housing and training. Pic: John Alexander

Three fab grans

Hermi, 85: “I don’t really feel like an older woman.”

Four working teens

From antisocial behaviour to force for social good; Buzz Bikes, Wales.

Five(ish) eco tips

Eco hero Phil uses a “smart plug” to monitor domestic energy use

Six(ty) volunteers

Young volunteer with City Corps, Rodney WIlliams

Seven(teen) pairs of wellies

Abandoned festival rubbish, Wales, gets recycled for the homeless, pic credit: Graham Williams

Eight(een-years-old and over) people campaigning

Participants in the Homeless Games, Liverpool

1950s hall revamping

"The kid who talked of burning down the place is now volunteering to paint it."

10 lads a leaping

11-year-olds integrating

Children's al fresco activiites at the Big Life group summer scheme

12(+) painters painting

View from the Southbank of Tower Bridge, Aaron Pilgrim, CoolTan Arts

Merry Christmas and Happy New Year!

More recognition for the role of carers

Janet Down only realised she was a full-time carer for her disabled husband when she fell ill a few years ago and could not look after him. Suffering back pain from lifting and depression from coping unsupported, her inability to care for 65-year-old Dave exposed just how much she did for him. This prompted her to recognise her role, accept she needed help and find leaflets about caring at her library.

Carer aware, an innovative project that Down subsequently participated in and designed by Dudley borough council, is making it easier for carers like Down to get support. The online mini-training toolkit offers an explanation of carers’ rights, better access to support and reassurance that professionals are recognising carers’ issues. Down now champions the scheme as chair of Dudley Carers Forum. “Knowing how and what the carer is entitled to receive is empowering,” she says. Read the full piece here on the Guardian Social Care Network.

“I remember when she could make herself a cup of tea”

When I asked my kids to tell me how they felt about visiting their grandma, who has dementia, in her care home, they were honest. “It can be a bit spooky because there are a lot of people there who can’t remember things,” said my eight-year-old. “It’s sad sometimes when we see her, especially when she says she thinks you’re her sister. I don’t really like hearing that. I remember when she was in her own house and she could make herself a cup of tea.”

Hard as it was to hear those words, I can’t say I find my daughter’s reaction surprising. I often find a visit to my mum “spooky” too. Although her care home is very good, it’s not somewhere I’d ever wanted her to be. It’s tough seeing her now, so different from the active person she once was, and the behaviour of people with dementia can be disconcerting and at times downright distressing. I initially found the resident who repeatedly cries out: “I feel terrible” very upsetting – and I’m supposed to be the adult.

The children and I have talked about how my mother used to be, why she gets confused now and why it’s so important that we spend the time that we do with her. My five-year-old summed it up well: “If we didn’t go, she’d be upset and she’s your mum.” But although we have often talked about dementia, and how it makes them feel, I’ve sometimes felt I was struggling to explain what was going on.

That’s why I was so impressed to find The Milk’s In The Oven, a booklet published by the Mental Health Foundation, to help children understand a bit more about dementia. Simply written, with practical exercises to encourage children to think about what it might be like to lose their memory, it’s an effective tool both for the classroom and for families affected by dementia.

Toby Williamson, head of development and later life at the Mental Health Foundation, explains that the booklet, originally published more than a decade ago but updated this autumn, is designed to help address some of the stigma surrounding dementia. “What we are trying to do is help young people understand what dementia is and how it affects the person,” he says. “It addresses the fears children might experience and the feelings they might have of being embarrassed or angry. What it is saying is actually you might well have those feelings, it’s understandable and you can talk about it. We want to reduce the fear of going to visit people with dementia. Social relationships are incredibly important for people with dementia – even in the final stages, a bit of contact, just holding hands, can mean so much.”

As Williamson points out, most families in the UK will, at some stage, have a relative or friend with dementia. It’s important, he stresses, that people know more about the disease, both so that they can support the person affected and so that they can encourage relatives to get an early diagnosis, often so valuable in terms of treatment and preparing for what’s ahead. And even for those children who don’t know anyone with dementia, there’s huge value in learning more about it.

Schools are increasingly teaming up with health professionals to build the links which can foster greater understanding. One impressive project is in Doncaster, where pupils from three schools now visit day centres across the town, taking part in activities like baking, sewing, singing and playing dominoes with people with dementia.

Mary Beardsley, the team manager for the local NHS trust’s Doncaster Community Memory Therapy Service says, the youngsters involved, who are aged between nine and 11, usually don’t have any personal experience of dementia. But thanks to the project they have built strong relationships with the service users, gaining a real respect for them as individuals. For the older people too, it’s been an overwhelmingly positive experience.

“Our patients gain so much confidence – it puts them in a position of power being able to teach the children something,” says Beardsley. “When you get dementia, you lose your confidence and you don’t think you are good enough. Seeing the interaction between children and patients is fantastic. The children grow to love them and the patients can’t wait for them to come.”

That recipe for a better understanding of dementia through building new relationships is one I can see developing in my own children. As they talk with some of the residents at my mum’s home, I hope they are seeing that older people with dementia need our support and respect. It’s a lesson that, as the numbers with dementia rise, more of the younger generation will need to learn.

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.

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.

Dilnot: reaction round up

Today the Dilnot commission on social care published its conclusions in its Fairer Care Funding report. Among its findings are that care costs should be capped and the means-tested threshold increased under major changes to the funding of adult social care in England.

The report is a chance to finally fix a shattered system, there will be widespready reaction and analysis later today and beyond to what Dilnot himself calls a once-in-a-lifetime chance to overhaul social care but for now, here’s a selection of today’s responses which I’ll try and update throughout the day.

Sue Brown, Head of Public Policy at the national deafblind charity Sense: “Sense welcomes the Dilnot report, and in particular the key finding that additional public funding for adult social care is urgently required. But we are concerned that the media focus is only on older people which obscures some critical aspects. We believe the report clearly shows that not only can the Government afford to support disabled people of all ages, but crucially as a society we can’t afford not to. It is now up to the Government to fund adult social care so that it gives disabled people of all ages quality of life. For deafblind people social care means communication and mobility support, not just personal care.”

Julia Unwin, the Chief Executive of JRF and the Joseph Rowntree Housing Trust (a non-for-profit provider of housing and care services): “Today marks the most concrete and credible step for years. I believe that the proposed reforms have the potential to bring about a radical step-change in how we value social care, how we think about disability, and how we all – as individuals and as a society – plan and prepare for longer lives.
It is positive to hear commitments from all the main parties to set aside party differences and consider the Dilnot report with the consideration it clearly warrants.
The JRF now urges the Coalition Government to abide by its promises to deliver a White Paper in the next six to nine months. It would be a tragedy for this, one of the most pressing and defining issues of our age, to be kicked, yet again, into the long grass.”

Jeremy Hughes, Chief Executive, Alzheimer’s Society: “Today’s welcome report could bring to an end the scandal of the colossal Dementia Tax where every year tens of thousands of families are left to pay all their care costs whilst other diseases are paid for by the NHS. The government mustn’t miss this opportunity to right a wrong that is destroying lives. In a new system we must end the postcode lottery that gives different support depending on local authority. The Dilnot Commission has given the coalition government the opportunity to show that it is a caring government. Pending implementation they must also show they care, protecting social care spending in the way they are doing for health.”

TUC General Secretary Brendan Barber: “The TUC welcomes the increase in funding for the care of the elderly over the next few years, and the news that social care will be free for those who become disabled before the age of 40.
“The introduction of a national eligibility assessment should avoid a ‘postcode lottery’ and make it possible for those receiving social care to move around the country without losing their care provision.
“The TUC believes that social care should be provided free for those who need it, and funded from general taxation. The Dilnot Commission’s proposals could, however, be transformed into this NHS model by continually reducing the level of the cap on care costs. The government must not set too high a cap – a level above £50,000 per person would mean that families could still face losing their homes to pay for the vital care they need.”

Gordon Morris, managing director of Age UK Enterprises: “The Dilnot commission report delivers a clear call to action to the financial services industry to work with government to develop the innovative products needed to fund long-term care. Existing products, such as equity release and annuities, could present a solution, but far more has to be done to build flexibility into these products to increase access and ensure these products evolve to meet changing financial needs.”

Stephen Burke, founder of social enterprise United for All Ages: “Under the commission’s regressive proposals, the winners would be richer families whose inheritance will be relatively protected, while most families will face a more confusing and potentially costly care system. The proposed cap on care costs will still result in some older people being forced to sell their homes to pay for care and related costs.
“The proposals aim to reform the current inadequate system for funding care. But they would lead to a more complex, fragmented and confusing care system … This could be seen as a care ‘poll tax’ for the so-called squeezed middle.”

An interesting reaction from by social workerSarah Smith“: “It is local authorities that take the hit from policies devised by central government, and we can only hope that all parties are brave enough to act together for the country’s interests rather than consider of their own chances at the ballot box. We deserve much better than that.”

Labour leader Ed Miliband: “The last thing Britain needs is for Andrew Dilnot’s proposals to be put into the long grass. We three party leaders are of similar age and the same ­generation. This is a once-in-a-generation opportunity which our generation must address.”

Which? executive director Richard Lloyd: “Consumers tell us that long-term care is their top health care priority* so we welcome these recommendations and urge the Government to act sooner rather than later. If private insurance is to play a part in funding long-term care, then we need to learn lessons from the past, where products have either failed to meet people’s needs or have been mis-sold. This will be a new market with a clean slate so it’s important that strong consumer protection is in place from the start.”

Michelle Mitchell, charity director at Age UK, tells the Guardian that the report set out “a clear blueprint” for sustainable reform. Production of a white paper by next spring was ambitious but achievable, Mitchell said. But she warned: “Delay beyond Easter would be indefensible.”

Mark Goldring, chief executive of learning disability charity Mencap, said: “Now is the time for monumental change and it is vital that the government does not bury social care reform.”

John Adams, Voluntary Organisations Disability Group (VODG) general secretary: “Today is about more simply demanding more money – vital though additional funding is – it is about urgent reform of a broken system. The Dilnot commission has taken great pains to build cross-party consensus; ministers now need to match the warm rhetoric with which they greeted today’s report with swift action. The government must find the courage to put its money where its mouth is, succeed where previous administrations have failed and exploit what Dilnot himself describes as a “once-in-a-lifetime opportunity” to create a fair and sustainable system of social care.”

Senior Fellow at The King’s Fund, Richard Humphries: “The budget deficit should not be used as a reason for inaction. This is a long-term issue and questions of affordability go beyond the current economic situation. The additional public expenditure needed to fund these proposals is less than 0.25 per cent of gross domestic product – this should not be too high a price to pay for providing a care system fit for the 21st century….Where they have failed in the past, politicians from all parties must now seize the best opportunity in a generation to ensure that people can access the care and support they deserve in later life.”

Su Sayer, learning disability charity United Response’s chief executive: “The report’s recommendations are the first step towards creating a better system which ensures that people in need of care receive it, funded in a way that is not only fair, but seen to be fair….Whether viewing this economically or morally, we cannot afford to ignore these recommendations, which is why we urge all political parties to work together towards a better social care system for all.”

Guy Parckar, acting director of policy, campaigns and communications at Leonard Cheshire Disability: “The system as it stands is creaking at the seams, with more and more people missing out on the care that they need. This report must be seen as a clear call for action. All of the political parties must come together with one agenda and that is to agree a fairer settlement for social care. We cannot go on with disabled and older people missing out on care because of a system that simply cannot cope with the demands placed upon it…Too often disabled people with significant social care needs can be charged into poverty by our social care system. People are unable to work, unable to save, unable to buy a home as any income or assets will simply be taken to cover the costs of care. This is a critically important recommendation that could make an immense difference, and it is absolutely imperative that the Government acts on it.”

Domini Gunn, Chartered Institute of Housing (CIH) Director of Public Health and Vulnerable Communities: “In reforming the funding of social care, we urge the government to follow Dilnot’s recommendation to review the scope for improving the integration of adult social care with wider care and support system. This must include housing, and housing support, providers and could help drive a more preventative approach, incentivised through funding arrangements.”

Sir Stuart Etherington, Chief Executive of NCVO: “This review makes major strides towards identifying how we can achieve an affordable, sustainable and fair funding system for all adults in the UK. The challenge now falls to all parties to resist turning the review into a political football and to prioritise responding swiftly and decisively. It is the most vulnerable who will suffer if we cannot seize this golden opportunity to improve the funding of adult social care.”