Seven years ago, no one could have imagined Martin* living anywhere but in residential care. The then 24-year-old, who is autistic and has a moderate learning disability, was exploited by ‘friends’ who dealt drugs from his housing association flat in London, leading him to lose his tenancy. Head to the Guardian Social Care Network for the rest of my piece on the importance of transition services when supporting the vulnerable to move from residential care towards more independent living.
Given the dire state of funding in the charity and public sector, fundraisers (and by that I mean staff and volunteers – not chuggers) are working overtime with some fantastically inspiring and engaging events, some of which I’ve featured on this blog. One caught my eye, not least because its title sounds like a cross between a very fine record and a throat spray.
The Largactyl Shuffle is a series of regularly-held and increasingly popular guided walks, the brainchild of the brilliantly creative user-led charity CoolTan Arts which clearly has its tongue in its cheek and its feet in its walking boots. The charity’s event is named after the anti-psychotic drug, Largactyl; the medication’s possible side effects can include a distinctive shuffle.
The guided stroll on Saturday October 15th is being held to mark World Mental Health Day, which is on the previous Monday (October 10th). The five-mile guided sponsored hike is from the Maudsley Hospital, Denmark Hill, south London, to Tate Modern, Bankside. The walks are gaining a reputation for being very social, entertaining events that bring together campaigners and raise the profile of mental health issues. The organisation was founded in 1990 by a group of artists who squatted in a suntan factory, which is how Cooltan Arts got its name.
This year’s walk is entitled No Health without Mental Health and explores the history and social impact of the NHS since its inception in 1948. There will be breaks, poetry readings and other events along the route.
Comedian and broadcaster Arthur Smith, whose family and friends have experienced clinical depression, is the event’s patron this year. Smith’s fellow patrons at the charity are artist Maggi Hambling, TV chef Rosemary Shrager sculptor Sokari Douglas Camp, writer Ali Smith and novelist and Guardian columnist Clare Allan.
Advocating that mental wellbeing is enhanced by creativity, the arts and mental health organisation is run by and for people with mental distress. Its numerous workshops at its centre in Southwark’s Walworth Road include visual arts, batik, digital arts, video, poetry, and performing arts. There are also regular exhibitions, public art projects and websites which help break down the stigma of mental distress and the gallery and performance space offers other community projects a place to exhibit. The charity also runs volunteering schemes.
The walk, suitable for people with disabilities and wheel chair users, finishes with a reception and refreshments at Tate Modern.
• If you’re interested in taking part, download a form from www.cooltanarts.org.uk or call 020 7701 2696 or email firstname.lastname@example.org walkers must bring a packed lunch and drinks, wear suitable clothes and sensible footwear. The non-refundable registration fee is £5 unwaged or £10 waged.
Guest blogger Lol Butterfield, a mental health campaigner and qualified mental health nurse, explains his involvement with a national drive to tackle the stigma suffered by people with mental health issues. The campaign is driven by service users. Butterfield, who lives in Teeside, has written an autobiographical book which describes his experience of growing up with a mentally ill parent.
“He must have been insane to have done that!” Sadly, an all too familiar response following reading about a particularly vicious assault or murder, in the newspapers. The reality is usually different though and, statistically, 95% of serious crime is carried out by people who do not have a clinical diagnosis of mental illness, those who are not therefore “insane.” They are “bad not mad”. So why do we discriminate?
People experiencing mental illness are more likely to be the victim, rather than the perpetrator, of a serious crime. This criminalisation, mainly through the media, was one of the reasons I became involved in Time to Change and its Lived Experience Advisory Panel (LEAP).
LEAP is an advisory group of 12 people who shape the Time To Change programme, England’s largest mental health anti-stigma campaign. Time to Change began in 2007 funded through the Big Lottery and Comic Relief with £20 million of investment. Us “Leapsters” have extensive experience and knowledge of mental illness and a passion to put the record straight. We act as campaign ambassadors and spokespeople. With a diverse mix of expertise and good links to service user and carer networks, we work towards ensuring that service user and carers needs are at the heart of the campaign.
Over 30 years I’ve spent time working in mental health services as a qualified nurse. I have seen daily the stigma and discrimination faced by those who experience mental ill health and their families.
I’ve also been on the receiving end of this stigma myself. I experienced mental illness myself when in 2004 I had to take time off work with severe depression. I have worn the shoes of the nurse, and the patient. I can empathise with the one in four of the population who have also found themselves mentally unwell at some point in their lives.
My father also experienced mental illness and as a small child I recall the stigma surrounding this growing up in a small mining village in the north east. As a young boy I did not understand what the word stigma meant but I certainly knew how it felt at that time.
I have spoken to people who have been laughed at on the bus or been called names because people know they have mental health conditions. I know of those who have ever been told to sit in other areas of a pub, who have not applied for jobs because they fear being rejected when they disclose their mental health background. These people are vulnerable to abuse because their mannerisms. Ironically these mannerisms are often caused by their medication rather than the condition itself.
I became involved with LEAP because I saw an opportunity to positively and constructively use my experience, as both a nurse and someone with experience of mental ill-health, to make a difference.
I have presented at conferences telling my story and promoting the campaign message. I’ve taken part in TV and radio interviews, visited schools and colleges to raise awareness. Until recently, I was writing a bimonthly column for the local newspaper where I live in Teesside with the aim of tackling the negative stereotypical coverage we see all too often.
Three years ago, I decided to write Sticks and Stones, my autobiography, as another way of spreading the anti-stigma message. my childhood memories of growing up with a father who experienced mental illness and the stigma my family faced and I myself felt as a child. For me writing the book was also about encouraging others to follow my lead by using myself as a positive role model (ie someone who is trained as a mental health nurse and has experienced mental illness. I am very open about this in order to promote more acceptance from others)
Individually as well as collectively we can and will make a difference no matter how small. With imagination and creativity we can impact in those areas of society that discriminate and stigmatise.
It has not always been easy. The work I do can be stressful because often it is real people with real experiences at the core of what we do as a group, and I do as an individual. I have at times to be mindful of my own limitations and avoid pushing myself into the “dark place” of clinical depression again. That said my work gives me so much satisfaction and pleasure. To know my words and actions have made others think differently around mental health, and act differently in their treatment of those who are unwell, is reward in itself.
The work of LEAP has made a difference in that dedicated time and effort has ensured that the message is being delivered in many creative, diverse ways that otherwise may not have been. As Leapsters we cover all parts of England to touch as many people in as many regions as possible. Touching hearts and minds, promoting tolerance and understanding of mental ill-health. I believe we are teaching the next generation to act and behave differently, changing attitudes for the better.
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 worker “Sarah 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.”
Like most 13-year-olds, Jenny Wilson likes to go shopping with friends. Her athetoid cerebral palsy means that she has used a wheelchair for almost a decade, but she is capable of negotiating busy high streets. Yet Jenny’s independence is under threat – not from her disability per se, but by a legal anomaly that means she breaks the law if she uses the wheelchair that best meets her needs. Read my piece in Society Guardian here.
For those who’ve not already seen it, this powerful film presents an alternative to the government’s devastating cuts agenda. It features community groups and anti-cuts campaigners along with Bill Nighy, Radiohead’s Ed O’Brien and Zac Goldsmith MP. Worth watching ahead of this weekend’s demo in London against the cuts.
When the government revealed its £2m plan to measure national wellbeing in November, the announcement was greeted by at best, bemusement, at worst, derision.
How, asked commentators, can an intangible concept be measured? Amid the public funding cuts, many questioned the £2m allocation. Read my Guardian Public piece on the new 40-strong advisory forum that will explore new models for measuring national wellbeing