Category Archives: Uncategorized

Why did Connor Sparrowhawk die in a specialist NHS unit?

Connor Sparrowhawk (photo: Sara Ryan)
Connor Sparrowhawk (photo: Sara Ryan)
The death of 18-year-old Connor Sparrowhawk at Slade House assessment and treatment unit was avoidable, according to a recently published report. What happened to Connor, who was admitted to the specialist care in Oxfordshire a year ago today, has reignited debate about the use of these units – Winterbourne View was a privately run unit where the abuse of patients with learning disabilities was exposed by BBC’s Panorama in 2011.

The full piece I wrote for today’s Guardian is here – please read it alongside the words of Connor’s mother, Sara Ryan, who describes the fight for justice for her son.

From today for 107 days (the length of time Connor was in Slade House), there is a campaign to raise awareness of what happened to Connor. Building on the palpable sense of anger and injustice, it is hoping to push for action.

You can follow the campaign on Twitter @JusticeforLB #JusticeforLB. Connor’s mother’s blog is here.

I’m posting some additional contributions from a few interviewees here as there wasn’t space in the published piece.

Sandie Keene, president of the Association of the Directors of Adult Social Services, stressed the fact that it’s not just social care commissioners who are responsible for the continued use of units like Slade House:
“Commissioning these days is a complex environment [it’s within] NHS England, clinical commissioning groups, social care commissioning.” Keene adds that the solution is partly “to find better ways of cascading the best practice”.

Mark Neary won a legal fight to get his autistic son, Steven, out of the kind of care Connor was in. He explained what these units are like for individuals and families: “After Steven’s experience in an assessment and treatment unit where he was unlawfully held for the whole of 2010, I question what the purpose of these places is. In our case, the judge remarked about the lack of assessment when Steven was first taken there and there didn’t appear to be any treatment taking place. The unit appeared to me to be a holding container. And a very expensive holding container at that. The other aspect of the unit that shocked me was how much families were excluded. On a major medical document, I wasn’t even mentioned as Steven’s next of kin – his keyworker at the unit was. To have my whole 20 years experience of Steven negated was quite terrifying. And worst of all, it must be awful for the person detained there to be cut off from the people who have cared for them all their life. Steven has autism. Does that need treatment? And even if it does, is it good for a person for whom routine is everything to be kept in one of these places?”
* You can read Mark’s blog and his stories of his son’s time in an assessment and treatment unit

Jenny Morris, an independent consultant who advised the previous government on disability, puts the lack of progress on moving people out of units and into the community down to two things: “There are negative attitudes in society in general toward people with learning disabilities plus ignorance or lack of understanding about how denying people the ability to communicate their needs, and failure to meet their needs, leads to “challenging behaviour. When things go wrong the response is to write new or updated standards and codes of practice etc instead of paying attention to how to recruit, retain and value people who can – because of their values – provide good care and empower people. If we paid more attention to the characteristics of people who provide good care, plus how to support them with training and good working conditions etc, and less to problematising the needs of people with learning disabilities we might not see the kind of institutional disablism that persists in so many services.”

A senior contact, who didn’t wish to be named but who runs a large care organisation, talked about the closure of long-stay hospitals and how what’s developed in their place is almost as bad: “We closed closed them and some pretty similar things have replaced them. The policy context for working with people with challenging behaviour has been clear for over 20 years..the best way to develop servives for people with challenging behaviour is individualised services around the person and it needs to be small scale local and in the community. It has been out there [ie known about and practised by the best care providers] for years, but seldom happens.”

I interviewed Katrina Percy, the chief executive of Southern Health, which ran the now-closed unit that Connor was in. Southern was criticised in an independent report into Connor’s death and is currently being investigated by health regulator Monitor.

Asking why units like Slade House exist, I mentioned the buck passing that families feels goes on between ‘stakeholders’ – with commissioners of services and clinicians complaining about the lack of community-based alternatives, and service providers for people with learning disabilities suggesting commissioners don’t know about, or cannot afford, existing alternatives. Percy replied: “I feel it’s got to be a joint piece of work, so often the experts [who sit on commissioning boards] come from our organisation, but the commissioners need to make the decision that they wish to commission this new [community-based] model of care”.

I asked if concerned the trust is worried about losing its healthcare licence given the critical reports (the report into Connor’s death and inspections by the care sector regulator, as the piece today explains). Percy responded that she did not know about a potential breach of licence, but said the trust had been in discussion with Monitor and “the organisation overall has an awful lot of strengths”. She added: “One of the hardest thing in my job is about enabling focus where things go wrong, but not allowing that to pervade a very big organisation where lots of things go very right [where] in fact we’re seen as leading edge and my job as chief exec is to absolutely make sure that we get that that balance and prioritisation and focus right.”

On the calls for her resignation, Percy replied that she would like to “meet the family and talk to them directly so they actually see what I’m like as an individual and as a chief executive.” She added: “There are many things we are very proud of in this organisation and we provides services to millions of people and therefore I think my best place is to help us continue to improve services for every single person who needs to use them.” Asked to clarify, Percy replied: “I don’t see that it’s approporiate that I would resign, no.”

Responding to what she would say if she met Connor’s family, specifically his mother Sara Ryan, Percy said: “I would apologise unreservedly that her son and her family were let down by our services…I would ask her when she feels ready, if that is what she would like to do, to continue to campaign and work with us to design a set of services where this will never happen again.”

* Seven members of staff who worked at the now-closed Slade House are subject to a “human resources investigation”, with the first disciplinary hearing due to take place this month. In an email after the Guardian piece went to press, Southern Health confirmed “three members of staff have been suspended”.

Which way now for public services in Scotland?

In September, Scottish residents will vote in an independence referendum. I asked experts working in housing, local authorities, social work, charities and public health what impact a yes vote might have on social policy – for the full piece, head over to the Guardian.

The piece looks primarily at social policy, but I’m including two important comments that look at related issues of economic and business impact:

Jeremy Peat, director, David Hume Institute
The referendum campaign to date is characterised by masses of material from the interested parties on both sides, but still an inadequate flow of clear information and evidence-based and objective analysis. On the economic front the key, inter-related, issues are regarding currency and the extent of enhanced freedom on monetary and fiscal policy that independence would bring. The choices on the currency front are fourfold.
If a sterling currency union were agreed – not impossible despite the Chancellor’s protestations – then monetary policy would be set by the Bank of England in the interests solely of the rest of the UK. There would be very severe constraints imposed on the fiscal front, both on the level of deficit and (some) specific taxes and policies. Any ‘sterlingisation’ – unofficial use of the pound – would again mean severe constraints, this time to keep the international markets happy. There would be a host of other risks.
1Adopting a new currency would allow more freedoms in principle, but in practice a really tight policy stance would be required if the currency were to be pegged to sterling (as would make sense) at least until credibility in the markets was achieved. A new Scottish currency is seen by many nationalists as the real route to independence. There is logic to this, but also heavy costs in terms of getting there and staying stable – especially as this would be a petro-currency and liable to high volatility.
2Adopting the euro used to be Plan A, but ‘events’ in recent years have reduced its popularity. If Scotland took up the euro, then monetary policy would be set by Europe and fiscal policy would be mightily constrained.
There is no straightforward solution on currency that also achieves strong policy independence. Another key point to note is the fact that the rest of the UK is far and away Scotland’s strongest trading market. Any outcome that introduced currency uncertainty into that trade and/or heavy transaction costs would be deeply unwelcome. Finally, it is important that a degree of certainty be achieved ‘ere too long, to reduce the risks of corporate and capital flight.

Liz Cameron chief executive of the Scottish Chambers of Commerce
“The full implications of Scottish independence would, of course, not be known until post-referendum negotiations were completed between Scotland and the rest of the UK and between Scotland and international bodies such as the EU. Social policy would not be known until the outcome of elections for the government of an independent Scotland was apparent. Equally, the full implications of a ‘no’ vote are also unknown as the outcome of the 2015 General Election is a variable, as is the result of any future UK-wide referendum on the UK’s continued membership of the EU. What can be said with certainty is that Scottish businesses will continue to adapt to change, from whatever source, just as they have done with the advent of devolution and with the effects of the financial crisis and recession.
“Whatever the outcome of the referendum, Scotland will continue to face major challenges as the economic recovery gains momentum. Skills issues are important for businesses and we are keen to ensure that potential skills gaps are addressed before they result in barriers to growth. Similarly, businesses are keen to ensure that young people do not get left behind as the jobs market continues to improve. Scottish Chambers of Commerce is currently working with businesses across the country to identify new opportunities for young people to gain employment at a suitable skill level within Scotland’s small and micro businesses. Scottish businesses are ambitious for growth and we need to make best use of our most valuable resource: our people. Some of the relevant powers are devolved whilst others currently rest with the UK Government. Either way we must ensure that businesses are supported to grow, to create wealth and jobs and to secure Scotland’s economic success.”

British-Brazilian music project tackles social inclusion

Research from Goldsmiths University recently suggested that wealthier people are more musical. While it’s obvious that higher income families find it easier to stump for private piano lessons and expensive instruments, music has a place in boosting inclusion and there are some great community-based projects that not only make music more accessible, but aim for social impact in the process.

Take the Sage Gateshead, which is halfway through a four-year cultural exchange scheme with a Brazilian government programme called Santa Marcelina Cultura (Santa Marcelina Cultura manages São Paulo state government’s music education and cultural inclusion project – Projeto Guri). The project aims to improve arts education and boost social inclusion in both Sao Paulo and the North East.

The scheme is funded by the British Council’s transform arts and creativity programme. The Sage’s musicians and teachers have travelled to Sao Paulo to find out how music, learning and social inclusion are combined in Brazil, while a Brazilian team came to the North East last year. Below, two participants – one from each country – explain the benefits of their innovative musical scheme:

Kat Davidson from the Sage Gateshead
Kat Davidson from the Sage Gateshead

Kathryn Davidson, 29, from Fenham, Newcastle, folk strand leader, learning and participation, Sage Gateshead
“We’re about to enter the second leg of the second year of the project. Each visit is around two weeks long and involves observing practice, learning from each other, sharing ideas around social pedagogy and music education, and teaching. The two weeks are incredibly intense and informative.

For me, the first leg in 2012 was about getting to know Guri and what they do and weighing that up next to what we do. There are many differences but also many similarities in our own teaching styles but there is always the underlying theme that everyone deserves high quality music education. I was very proud when the Guri team came to Gateshead, I was proud to ‘show off’ the Learning and Participation department. The second trip to Sao Paulo was where I really began to understand my role and understand how the music that I teach and that I love is relevant.

We had a ceilidh for over 200 Guri young people and in the run up, the Guri staff reflected that they don’t use much, if any, Brazilian folk music. Much of it disappeared when the Portuguese invaded, and the post Portuguese music is often full of religion. What some people said is that seeing how British folk music can be used to teach rhythm, pulse, work in choirs, to teach intervals, to be a story for no other reason than to sing a good story, will make them investigate further their own traditions.

The ceilidh was my most favourite moment of both my times in Sao Paulo. My Brazilian colleague Paulo and I co-led this ceilidh even though he has never ‘called’ ceilidh dancing before and I speak minimal Portuguese! We had a ceilidh band made up of Sage Gateshead musicians and we had guest spots from some of the youth groups that we’d been working with… a wind band of young Brazilian musicians on saxophone and horns playing traditional Northumbrian music. Over a cold beer afterwards we all reflected that our own traditions are so close that they are normal, they’re ordinary. Placing the ordinary in an extraordinary context allows it to be fresh again.

The main challenges are in the circumstances that the young people who come to Guri live in. The Guri social team, who are absolutely outstanding, work with each and every young person to enable them to get the best from their learning, to fully engage with the programme. Sometimes that means holding their place for them for a few weeks whilst they have time to deal with the outside world. Sometimes it can take the social team visiting their home and working with their family, and sometimes it can be as simple as making sure they’ve had a good meal in their stomachs so that they can concentrate.

Often these young people will travel three hours to Saturday rehearsals, their transport is paid for and they receive meals and snacks to sustain them. Sao Paulo is a wonderful city but like all cities it is full of contrast, of huge wealth and incomprehensible poverty.

My own personal learning was huge, from trusting the music that I am passionate about to my confidence in my own teaching. Lots of the wider learning is still on-going, ‘what is a democratic music education?’ has become the research question. Both Sage Gateshead and Guri Santa Marcelina promote social inclusion and help people from different background to mix. How many Brazilian teenagers get the chance to work with a group of musicians from the North of England?

How many teenagers from Gateshead get the chance to work with musicians from Brazil? But it’s more than social inclusion, it’s about the promotion of social mobility and the belief that if you seize the opportunities offered to you, and you work hard, then there is no reason that you can’t succeed. If we can instill that within music education, be that in the formal classroom or in an out of school club, then that learning stays with the young person and seeps in to their self belief in English or Maths and they believe that if they set their mind to it and work hard they can accomplish anything.”

Daniele De Almeida
Daniele De Almeida
Santa Marcelina student – Daniele de Almeida, 17
“I am currently enrolled as a music student at Guri Santa Marcelina (GuriSM) education programme and member of GuriSM Youth Choir, an auditioned choir in the institution. The Sage Gateshead team was invited to work with GuriSM Youth Choir in October last year.

The exchange project between GuriSM and Sage Gateshead is focused on “what is a democratic and inclusive music education?” and also involves many diverse activities like workshops, seminars and performances. A real highlight for me was when we held and took part in a Ceilidh dance. There were so many people and so many English tunes. I really felt as if I was over here in a traditional English Ceilidh.

During the exchange I have found the most challenging moments the discussions around democratic and inclusive music education, particularly around the questions of what it is and how to promote it? It is a very emotive subject and you can explore it very deeply. It was also the first times students had participated in discussions about education in Guri Santa Marcelina. The size of both projects (Guri Santa Marcelina and Sage Gateshead) means the subject and the work that goes on is much more complex than I thought. However, this complexity drives both institutions to look for solutions and not give up.

Projects like this foster the contact among people of different backgrounds. With such contact I believe the horizons broaden; and this encourages inclusion to take place.

I believe that this sort of music exchange between great partners brings about knowledge of culture from different places. I think collectively it can better inform citizens than if you are trying to do it by yourself. It is much more than just entertainment!

One of the moments that sticks in my head is that one day Ed Milner, head of music learning at Sage Gateshead, was on the bus with all of us students and we asked him what he had enjoyed the most. He answered “You all!”

It has been an amazing, life-changing experience.”

He should never have died

I launched this blog as a platform for some of the excellent, uplifting, often unsung, good practice in social and public policy.

In contrast, this week I’ve been finding out about some of the worst care possible.

The opposite of “care”, in fact.

A host of very adept, passionate bloggers and campaigners have been demanding not only answers, but action after the death last year of Connor Sparrowhawk. Connor, 18, died while “being cared for” at a Southern Health Trust in-patient unit in Oxfordshire for people with learning disabilities.

As Connor’s mother Sara has said, “He should never have died and the appalling inadequacy of the care he received should not be possible in the NHS.” Sara’s powerful blog includes links to bloggers and commentators whose words are well worth reading.

I had to share Sara’s beautiful and powerful slideshow here; please watch it if you’ve not seen it before. And if you have already seen it, watch it again to remind yourself of the very real people and families behind the astonishing inequalities in care experienced by people with learning disabilities.

Much has been written about Connor, and more will be – although clearly we need more action than words alone – but taken together, Sara’s slideshow and these stark words from the independent report published last week tell you much of what you need to know: “the death of [Connor] was preventable”.

* Follow #JusticeforLB on Twitter @JusticeforLB
* Read more on Sara’s blog and sign up for email updates here

Creative minds drive debate about learning disability art

Gold Run, an opera at Glyndebourne (pic: David Illman)
Gold Run, an opera at Glyndebourne (pic: David Illman)

“People say to me how great it is that I ‘help’ people with learning disabilities to make their own films but I don’t do this out of charity. Far from it. I do what I do because I am excited by the amazing talents of the people I work with. Filmmakers with learning disabilities have an ability to offer a view of the world that I don’t. I couldn’t even dream of the scripts that our members write.” So says Will Sadler from Beacon Hill Arts in Newcastle, reflecting just one view about “learning disability arts”.

It’s the same sentiment expressed by Richard Phoenix, who runs music organisation Constant Flux, and who I’ve quoted elsewhere on this site : “Often when I talk to people about working with people with learning disabilities in music I encounter the “Aww…. That’s so nice” attitude, which isn’t intrinsically wrong in any way but it seems to me to represent a feeling that people with learning disabilities are only capable of emotionally neutered art, of things that are ‘nice’ and ‘happy’ which from my experience is completely off the mark.”

So what does that phrase “learning disability arts” mean to the public? What constitutes “good art” is a notoriously subjective and personal view, but what is the quality of work being produced by people with learning disabilities? How is such art produced, judged, presented or received differently to “mainstream” art? How far do non-learning disabled artists who collaborate with people who have a learning disability lead the project – and what standard of art is produced?

The Brighton-based project, Creative Minds, is hoping to lead a much-needed national debate about these kinds of issues. Funded by the Arts Council, Brighton and Hove city council and the John Ellerman and Paul Hamlyn foundations, Creative Minds is run by a committee of learning disabled artists who want to “challenge perceptions of their work being labeled as ‘good therapy’ and have a national discussion about its quality and how that can be defined”.

Horse, watercolour by Carol Chilcott
Horse, watercolour by Carol Chilcott

Leading arts charity Carousel is facilitating the project with some good food for thought already given a platform via the Creative Minds website and the first in a series of conferences will be held in Brighton a week today, on Monday 10 March.

The aim is for learning disabled artists to showcase their work and lead discussions about it. The conferences are targeted at their peers, arts organisations, critics, funders, venue programmers and anyone interested in learning disability led arts

Performances, art and discussion includes Action Space London, Chris Pavia and Stop Gap Dance Company, Corali Dance Company, Face Front Theatre Company, Oska Bright Film Festival and Rocket Artists.

Laundry Boy, Face Front Theatre
Laundry Boy, Face Front Theatre

The Creative Minds steering committee explains that “as individual artists and performers we have had our work not taken seriously when we have shown it in theatres, galleries and on stage”. The group’s aim is “to change peoples ideas and perceptions and the way they see us”.

Hopefully the project and conferences will lead to a high profile debate that reaches beyond the learning disability arts sector.

As performer Bethan Kendrick writes on the Creative Minds site, “Having a learning disability informs your art and helps you produce work of a high quality. I have found that my confidence has grown because I perform my work to audiences. Thinking about quality will help you develop your skills, especially as you work with your company and your director. I take my performance work very seriously. This gives me great confidence in my art.”

• The Creative Minds conference is on Monday 10 March, 10am to 5pm at the Brighton Dome, Church St, Brighton (the venue is wheel chair accessible)
• Constant Flux presents the Fish Police on tour from next month, see website

Art works explore the world of work

How blurred are the lines between work and leisure, thanks to the impact of technology on our working lives? Does anyone still really work only an eight hour day? And what about the rising numbers of self-employed people in our changing economy?

These are among the questions prompted by a new exhibition about the world of work, Time & Motion: Redefining working life, from FACT (Foundation for Art and Creative Technology) and the Royal College of Art’s Creative Exchange Hub.

The show uses art and archive materials to look at everything from clocking on at the factory gates to remote, online ways of working.

Among the varied works is a piece from Cohen van Balen about mass-manufacturing, 75 Watt. The video commission focuses on a product with no useful purpose (apart from to choreograph a dance performed by the labourers making it).

75 Watt, from Time & Motion
75 Watt, from Time & Motion

Revital Cohen and Tuur Van Balen – 75 Watt from FACT on Vimeo.

Another piece, Electroboutique’s iPaw, shows a dog who passively scrolls through apps on his tablet, reflecting how technology might trap its users.


Electroboutique’s iPaw, from Time & Motion
Electroboutique’s iPaw, from Time & Motion

Irony dictates that I can’t get to the exhibition due to work deadlines, but, fittingly, I’ve checked out the exhibition online. It’s worth a look.

* Time & Motion: Redefining Working Life is at FACT in Liverpool until 9 March.

Seeing dementia through a different lens

Ashwani and Didi laughing, from Love, Loss and Laughter by Cathy Greenblat
Ashwani and Didi laughing, from Love, Loss and Laughter by Cathy Greenblat

I was entranced by some of Cathy Greenblat’s photographs of people with Alzheimer’s, which I came across when researching a recent piece about dementia.

Dementia is a major global challenge – health experts describe it as the next global pandemic. One in three of us will develop it – 135 million people by 2050, according to Alzheimer’s Disease International (ADI), and its annual worldwide health and social-care cost is around £400bn.

Yet Greenblat’s work goes behind the headlines to present the human aspect of the disease.

The images in the book Love, Loss and Laughter present a rare view of the illness, shattering the stereotypical image of people as personality-free empty shells, discarded and forgotten by society.

Marie-Therese at a party (photo: Cathy Greenblat)
Marie-Therese at a party (photo: Cathy Greenblat)

Greenblat’s thought-provoking project to document the lives of people with Alzheimer’s is endorsed by ADI and has taken her all over the world for over a decade (it was published in 2011).

An academic and photographer whose grandparents and mother all developed Alzheimer’s, the sociologist’s work combines a large scale vision and research expertise with a very personal focus on human relationships and societal attitudes. Many of her photographs reveal the characters behind the disease, presenting people with Alzheimer’s in a social or familial context and among friends and carers.

The hundred or so photographs taken in care homes, private houses, clinics and day centres all over the world show how it is possible for people with dementia and their families and carers to experience some joy as they lose their cognitive functions (the “love” and “laughter” in the “loss”). The images show how people can maintain both independence and quality of life.

It is worth pointing out, however, the images do not shirk from touching on the frustration, anxiety and isolation – particularly at the end of life – which Alzheimer’s brings.

As Greenblat, Professor Emerita of Sociology at Rutgers University, writes in the book, “people with dementia retain vital capacities”. She reinforces the notion that our attitudes to dementia must change if the experience of those with the illness is to improve; her book quotes Michael Verde, president of American dementia organisation Memory Bridge, who says People with dementia don’t disappear unless we disappear from them”. It is possible, as Verde has said, “to change what is referred to as ‘the long goodbye’ into ‘a long hello’”.

The photographer tells me that people are often surprised to hear that the subjects of her pictures have the disease, she says: “I’m often struck by the responses of viewers of my photos at exhibits who ask with some astonishment, ‘But does this person really have Alzheimer’s?” They have only seen images that show people who are sad, dispirited, disconnected, and it takes them time to accept that that is not the necessary condition.

“People who are treated as hopeless lose hope; people who are treated as being unable to do things lose confidence. We don’t treat a sense of hopelessness or lack of confidence with medication: we do it by helping them to feel needed, cared about, being stimulated, communicating differently with them.”

Greenblat will be in Australia in late February to photograph more care settings and explore how to create “joy filled residential communities for people with dementia”. She hope this will result in a multimedia project with interviews, photographs and videos. Some more of her work is included in the gallery below:

• I asked Cathy a few more questions about her work, here’s what she said:

“Perceptions of Alzheimer’s are changing in the time since I’ve been photographing.One of the big changes is that there is so much more talk about Alzheimer’s, in the press, in books of all sorts, on the internet in the form of webinars and connections that are global.

Of importance is the greater participation in the dialogue by people living with dementia – people with diagnoses and people who are their care partners. This is no longer just the medical community telling us about what they know, but sharing of experience…Not everyone is listening to these new voices, but those who do have learned that there are ways to continue a quality life for much longer than has generally been believed.

How has my academic background helped me in my work? Probably the most important thing is that I came to this work with a knowledge of doing research… I knew how to go into new situations and places and learn from people about their lives. Now I was adding a camera to my “tool kit”, as I believe that seeing is so important in changing one’s mind… I speak in an early chapter in the book about ‘Changing people’s minds about people’s changing brains’ – that’s what I have been doing. And I think that is crucial.

I thoroughly believe that we need to distinguish between the physiological changes as we become ill, and the primary symptoms brought about by that. But there are many secondary symptoms such as apathy, aggression, social isolation, that are not caused by the disease but by the way people are treated and come to see themselves .

People who are treated as hopeless lose hope; people who are treated as being unable to do things lose confidence. We don’t treat a sense of hopelessness or lack of confidence with medication: we do it by helping them to feel needed, cared about, being stimulated, communicating differently with them… It is what the photos illustrate. This is not a new perspective… it has been discussed by scholars around the world, but the addition of visual evidence in photos that clearly are not posed has given them wider acceptance.

Many people “run away” from dementia. Surely some people run away from family members or friends who begin acting strangely and are difficult to deal with because they are don’t want to deal with the problem. We all know of siblings who fight about the care to be given to a parent, leaving the responsibility on someone else’s shoulders. They say they are too busy, they had poorer relations before, they have other responsibilities..

But many people are not selfish and ill informed – rather, they are frightened, they don’t know what to do they don’t know what they can do, they believe that there is nothing that can be done until a cure is found. That is simply not true. There is so much we know how to do now to engage people in continuing stimulating activities. There is so much to be gained through creating partnerships with professionals and other groups that provide day care activities, memory centers, art and music therapy, etc.

We need to help people know that there is a great deal to do and inspire them to find resources near their homes or on the internet. Many friends and family want to be engaged and helpful but they don’t know how to do that. There are excellent books, pamphlets from the Alzheimer’s associations and other groups. This can not only help the person who is ill, but it makes the friends and family feel more empowered… They can learn what to say and how to act in ways that let the person feel they are understood, which in turn reduces the aggression which so often is the result of feeling they can’t clearly express their needs and desires.”

• You can watch some films on Love, Loss and Laughter here and here or visit the website to find out more about upcoming events related to the book and photography project. You can also follow Cathy on Twitter @CathyGreenblat

Christmas for care leavers

IMG_0610

A groundbreaking support scheme run by care leavers for care leavers is hoping to help vulnerable young people for a second year Christmas running.

478 blur Bilal on right with hat and blue top

Named in memory of a 23-year-old care-leaver, Topé, who took his life several years ago, the Tope Project helps care leavers and held its first festive event last year, allowing those who live alone to enjoy Christmas Day in a safe environment (the pictures here are from last year’s event).

Youth worker, Shalyce Lawrence, 24, who was in care for 10 years and considered Topé “like a brother”, started the volunteer-run project because some of Topé’s friends had nowhere to go. The group is raising £5,000 to make the Christmas event happen for around 80 young people. While the law was recently changed to allow young people in care to be supported beyond 18, Christmas and New Year – times when most people are with family – can be an isolating and difficult experience for many young people in care.

You can follow the project on Twitter: @TheTopeProject or find it on Facebook and help raise the £5,000 needed to run this important event again this year via JustGiving.

We need to prepare for the next global pandemic

It is a disease one in three of us will develop – 135 million people will have it by 2050 and its worldwide health and social-care cost in 2010 was estimated at £400bn…yet no one is ready for the worldwide pandemic that is dementia.

My Guardian interview with leading microbiologist Peter Piot today, coinciding with the G8 Summit on dementia, underlines why international action is vital. Piot, who spent four decades investigating the world’s deadliest diseases and whose pioneering work made HIV/Aids a global priority, is in no doubt that dementia is now the world’s greatest social, economic and moral challenge.

“There’s not enough awareness of how bad the problem is,” warns Piot, a global health expert and director of the London School of Hygiene and Tropical Medicine. Like most of us who know someone who has had or is living with dementia (my grandfather had it), Piot’s father-in-law had the illness, so he knows first hand of the denial and stigma it brings: “It is the most neglected of all the neglected health problems and it’s a hidden problem because people are at home – they’re already written off by society”.You can read the rest of my piece is here.

When Piot argues that the discrimination faced by people with dementia is tantamount to a “human rights violation” and more than just a medical problem, I couldn’t agree more.

Funding and focus on research is essential, but this has to be accompanied by a change in attitudes – and the latter will be an uphill struggle for a society fails to have older people on its radar, regardless of whether or not they have dementia.

Home ownership for vulnerable people

How can someone with learning disabilities or mental health issues possibly own their own home? With a long-established but seldom-used form of housing called shared ownership.

The power of the part-rent, part-buy scheme to transform lives is illustrated in a new report, Space to live, published today by social care and housing provider Advance and Disability Rights UK. I was involved in writing part of the report and met home owners like Xenia Kyriacou, who is non-verbal and has complex needs.

Once asked to leave a restaurant after showing challenging behaviour and overturning a table in frustration (she was overwhelmed), only a few months ago, in another local restaurant near the two-bedroom flat she part-owns in east London, Xenia enjoyed a birthday lunch, was presented with a card from the owners and offered a discount on her return.

The change has happened since she moved out of residential care and into her own place.

Home ownership encourages confidence and independence, as was obvious when I met some of the home owners like Xenia and learned more about their experiences. The increased stability can reduce the costs of social care packages and help people get involved in their local areas. The timely report comes as the government considers funding plans for housing for post-2015, including its home ownership for learning disability (HOLD) programme.

You can read more about the report here on the Voluntary Organisations Disability Group website and on the Advance website.