Category Archives: Social care

The world’s most common – but least known – inherited learning disability

Chances are you’ve never heard of the world’s most common inherited learning disability – it was news to me until my sister was diagnosed with it several years ago.

Today is Fragile X Awareness Day in 16 European countries including the UK. The syndrome affects least one in 4,000 girls or women and one in 6,000 boys or men, as my family discovered in 2003 when my sister was diagnosed at 14.

Late diagnosis of Fragile X, as in my sister’s case, is sadly all too common – but it’s still better than the condition remaining undiagnosed (again, common due to it being misdiagnosed as autism or misunderstood by many professionals).

Recognised just 30 years ago, it is diagnosed by a blood test revealing the abnormal “fragile” site on the X chromosome. Symptoms include social, language and emotional problems, mild to severe learning disabilities, and autism-like behaviour.

Professor Jeremy Turk, who advises the support charity the Fragile X Society on the psychiatric and psychological aspects of the syndrome, is calling for people diagnosed as autistic who also show signs of developmental delay to be tested for Fragile X. “The relatively low levels of diagnosis of Fragile X Syndrome is a matter of extreme concern as it prevents families from receiving the correct support, understanding their condition and restricts their ability to make informed decisions about their lives,” says Turk. “A lack of awareness of Fragile X Syndrome amongst health professionals, and society in general, contributes to this low level of diagnosis and the failure to understand the links with, and important differences from, autism.”

As with any complex need, the symptoms of Fragile X vary hugely, making a single template of care impossible (even if the current drive towards person-centred care would allow it) and “the system” a minefield for parents and families. With children, as we found in my sister’s case, the multi-agency support can include the health visitor, GP, paediatrician, school special educational needs coordinator, social worker, care manager, speech and language therapist, occupational therapist and physiotherapist. That’s if you’re lucky, have the time, energy and the wherewithal to negotiate the system.

And, as is par for the course in social care, just when you think you’ve secured the right tailor-made support, it’s dismantled and you have to start all over again once your child moves from children’s to adult services. All too often the “transition” – a catch-all term that makes it sound like an elegant, seamless move, oh the irony – to adult care is as relentlessly bumpy as that first roller coaster of diagnosis and the initial securing of provision.

I explained my family’s experience in a Guardian piece several years ago, from the furtive glances from strangers at her “inappropriate” behaviour to the fact that family excursions would involve packing a few small towels, just in case Raana got so stressed that she vomited. Since then have described my sister’s Raana’s path to the right care and support on this blog. We have been fortunate; our experience has always been more of a series of battles than full-blown crises, but I know others are not so lucky.

In 2006 Alison Davies jumped from the Humber Bridge with her 12-year-old son, Ryan, who had fragile X. She had complained that Ryan was not receiving his entitlement of respite care, although this was investigated and found not to be the case. The contrast between the chink of optimism my family and I had just started seeing in my sister’s case, with her tentative moves towards independence and finding her own voice, and the total, utter despair and isolation that Alison Davies must have felt was horribly stark.

After that incident on the Humber Bridge, Labour MP Betty Williams went on to table an early day motion in Parliament, criticising the insufficient support for families of children with Fragile X and autistic spectrum disorders that pushes many to “crisis point”. Just recently I read an extremely moving piece by a mother who admitted that “as a parent you feel guilty, and then you feel alone”.

Half a dozen years after Williams tabled her motion, I wonder how much has really changed for families affected by Fragile X, while remaining hopeful about the impact of today’s awareness day.

* read about Fragile X on twitter using the hashtag #fragilexday

The vital role of creative thinking in care

Supporting people to make the most of their community, pic: CareTech

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.

I was in care, now I’m working to improve the system for looked-after children

Guest post by teenager Matt Langsford

Matt Langsford, improving care for looked-after children
I’m Matt Langsford, I’m 19, I was in care for nine years, I lived in over 15 different care placements and I was homeless twice.

I was in care due to my mother’s mental health problems – she is agoraphobic, has bipolar disorder and suffers from alcoholism. I’m back in contact with my twin sister but no one else in my family.

My care experience was poor. I was told by my care workers that I’ve had “bad luck” with carers as two of them were de-registered and a couple resigned with immediate effect. When I was homeless I slept under a bridge, in a shed and in a garage.

My experience at first made me not trust any authority figures and made me lose my confidence, but I’m putting that to good use to help improve services for looked-after children and young people. I work with the LILAC (Leading Improvements for Looked-After Children) project. I understand better what happened with my care, and I want to improve the care system.

LILAC is project funded by the Big Lottery Fund and hosted by the charity A National Voice (ANV) which ensures looked-after children and young people are involved in decisions about their care and in the practices of the services that look after them. I assess how well services involve their looked after young people, deliver participation and LILAC standards of care. I think the standards are important as they are key areas of involvement for young people and children. They help gauge how an organisation involves and includes their young people. I am one of 60 young care experienced people recruited as LILAC assessors and so far we have assessed 18 different care settings from fostering agencies to local authority care homes.

I heard about LILAC in January this year from a role I had with ANV as the West Midlands regional development coordinator. I did some research and applied for the post after thinking what a great opportunity to build on many of my skills and get employment and to meet some like-minded young people. I was then interviewed and selected to become an assessor. Getting to the training course was a race against time for me; I travelled throughout the night on a 12 hour journey to get to the course (half a day late!). The training course took place in Manchester and I was living in Aberdeen at the time.

I think that the hardest part of the course was the role-plays because I’m rubbish at acting. The most rewarding part was gaining my qualification, meeting new young people and meeting the great staff at the project.

I think what we do at LILAC is important because we are going in helping organizations and local authorities improve the services they provide to their looked after children and young people. An example of how important LILAC assessment is that Wigan were assessed at the start of the project and only achieved some of the standards, after the LILAC team fed back their recommendations, Wigan started to implement them. A year on Wigan invited LILAC back to re assess them and they have achieved all of the standards.

My first assessment was in Birmingham – a private fostering agency – I had a briefing meeting before the assessment and it all went great.

LILAC has helped me on personal level as the team has gone out of its way to support me, with advice on attending college and also they have helped me develop my skills. I wouldn’t be where I am today without the hard work and dedication from the LILAC team. It has made me more confident and helped me to trust people again; I can talk to the team whenever I need a chat to keep me sane.

My plans for the future are to finish my level two and three health and social care BTEC and go onto university next September to get my social care degree. I am continuing my voluntary work with the local Children in Care Council which is something I have done for the past three years now, I’ve been the chairperson and co-chair here and I do things from outreach work to managing our team and budget.

For me the general public see looked-after children as trouble-makers or problem children, this is wrong as most of us in care are in care as our parents can’t look after us. The media unfortunately plays a mostly negative role in portraying us, as they only show bad things and don’t promote any good stories of looked-after children and young people; I am trying to change this.

“As a child, I didn’t know what stigma meant – but I certainly knew how it felt”

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.

Lol Butterfield, Social Issue guest blogger, mental health campaigner
“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.

Chaos and capability

It was the sort of toxic mixture of elements and multiple assault on the senses that would until recently have triggered some challenging behaviour in my sister; a bustling crowd, loud music, the company of strangers and – to add insult to injury – an extraordinary day with no familiar routine.

But not only was 22-year-old Raana Salman at the very heart of the carnival throng in my parents’ Sussex hometown during the recent Bank Holiday weekend, she was loving every noisy, overcrowded minute.

Wearing a pink fairy costume and a wide, joyous grin, she was a proud participant in the Ferring Country Centre carnival entry as part of the learning disability charity’s float in the Worthing carnival. She even featured in a photograph in the local newspaper.

My sister, Raana, in her Ferring Country Centre tee-shirt
Raana Salman - carnival queen

The hand elegantly pointing at onlookers with a homemade wand (beautifully fashioned from a battered old Christmas tree star and a cardboard wrapping paper roll) was the same one that would flap incessantly or claw at my mother on fractious days out when something was unfamiliar or overwhelming.

It was the same hand that several years ago would frantically gouge out the skin on her other arm during an anxiety attack. This is what happened the time I mistakenly thought she’d be pleased with a trip to my new place in London; her worry and tears escalated the closer we got to my front door, and failing to placate her, I just drove her back to Sussex.

My extremely biased, unfettered pride at my learning disabled sister’s achievements will be obvious to some regular readers – from her first few faltering steps towards finding her own identity at The Mount, the first Camphill community in East Sussex she joined at 16, to her recent progress at Camphill’s Lantern Community in Ringwood, Hampshire. And the only major problems so far have been other people’s narrow minds.

And I’m delighted to say my shameless promotion of her progress continues apace. This summer, she spent a few days at the Ferring Country Centre, learning social and life skills through activities and enjoying day trips that boosted her independence and widened her horizons enough for her to join in the carnival parade.

The centre has grown since its launch in 1986 by a group of like-minded parents who recognised the need for a workplace-based setting for vulnerable adults. The aim is to boost social inclusion for the learning disabled, supporting them to play a valued role in society through training and work experience.

The scheme’s garden centre grows plants and vegetables for sale to the public with the project’s participants helping in every aspect of production. The riding therapy lessons are taken up by 600 learning and physically disabled adults and children every month. People with disabilities also work in the café and the scheme’s small animals farm while off-site, they get involved in community projects, including newspaper collection and gardening.

When I asked Raana if she’d mind me writing about her latest experience, she nodded: “I loved it. I want to do it again next year.” And when I asked what the best thing about the Ferring centre was, she said proudly “my top”. Her answer didn’t really surprise me; the logoed tee-shirt and matching fleece are badges of honour for my sister as they demonstrate that she belongs to a community and they make her feel – very officially – valued. Do check out the Ferring project’s gallery to see more pictures of what this excellent centre does and to the team there – thank you, you’ve made our summer.

However, as grateful as I am for my sister’s progress, I never take it for granted. While she is currently so well-supported, others are in unhappier situations and the funding future is less than rosy for disability services. As campaigning organisations like the Learning Disability Coalition (LDC) and Voluntary Organisations Disability Group (VODG – note of transparency here as I also manage the group’s blog) have made clear, government cuts are a massive threat to disabled people while current funding rules are in desperate need of an overhaul.

Next week, 13 September, the Welfare Reform Bill has its second reading in the House of Lords and there is a very real fear that people with disabilities will lose out in the changes. Disability Living Allowance (DLA), for example, is used by the disabled for daily living costs but the government plans to replace it with Personal Independence Payment (PIP), which will save it money. But a recent survey of 2,200 people by charity the Papworth Trust, shows that the changes under PIP would mean 86% of disabled people would be forced to cut back on food or transport. There is a growing fear – and now growing evidence to suggest – that cuts are unfairly falling on the disabled.

For how long will young disabled adults be able to access the same activities and support as my sister in such a climate?

This week, Raana is back in Hampshire, getting stuck back into living, learning, socialising and working. Her work in the Lantern Community’s amazing shop, for example, now includes more responsibility for stock pricing, something of which she is very proud. Raana has so far not only achieved more any of us can have hoped for, but there’s a very real sense that there’s much more to come.

And I think for my parents, who know they shouldn’t but can’t help but compare Raana’s development with that of her two older siblings, it’s worth noting that I’ve certainly never been in a carnival parade and now I’m not the only one in my family to make the front page (note the tiny pink and white wand-holding figure in the centre of the throng). The only difference is that while I can write the news, I’ve never actually made it.

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.

Care issues take centre stage

I featured a bold production about special needs at north London’s New End Theatre on this blog recently, and now the same venue is presenting another performance focusing on challenging issues (all pics by Francis Loney).

Where’s Your Mama Gone? is a play about fostering, the vulnerability of children in care and the impact of the care system on the lives of the young. The show ran in Leeds before moving to London. The siblings in the play are in care in West Yorkshire after losing their mother to a serial killer – playwright Brian Daniels was a trainee teacher in the city in 1970s Yorkshire when Peter Sutcliffe was at large and he has drawn on the experience in his writing. Daniels was inspired by Richard McCann’s novel, Just a Boy; McCann’s mother Wilma was Yorkshire Ripper Peter Sutcliffe’s first recorded murder victim in 1975.

The theatre in Hampstead, London, has made over a hundred free tickets available to disadvantaged children in the area for the drama which also highlights issues around such as alcoholism, drug use and questions of identity and heritage.

Daniels wanted to explore issues of care in Camden, home to the New End, Hampstead, whre only 59% of children in care passed a GCSE subject in 2009, compared with 78% nationally. Local foster children also had the highest rate of substance abuse in inner London, with almost one in five reported as having a problem with alcohol or drugs.

The playwright says: “The play was written to offer hope to young people living in care and to draw attention to the vast difficulties they face. Many of the youngsters that we have invited down will not have had the chance to experience live theatre and I urge other venues to set aside some tickets as well.”

The theatre is also launching a drive to attract wider audiences, including a pioneering “pay what you can” optional pricing system will operate for the entire run of the play. The suggested ticket price is £15, but theatregoers will be free to choose how much they pay at the box office in an effort to attract audiences that would otherwise not attend.

Where’s Your Mama Gone? runs until Sunday 28th August 2011. Tickets are available from the theatre.

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.

Life stories: freeing the minds of dementia sufferers

It was only a picture of a gurgling baby. But to one elderly woman with dementia, it meant the world. “She had dementia, was in a care home and was past the stage where she could really have a conversation,” says Helen Bate. “But she just fell in love with that photo. She would try and wipe the baby’s dribble off, or feed it chocolate. It’s just an image – but it had the power to really engage her and she’s been able to talk to it.”

Bate is founder and managing director of Pictures to Share, an innovative social enterprise creating picture books and other resources for people with dementia. She’s a passionate advocate of people with dementia, who she argues shouldn’t be shut off from the world of books and art just because of their condition. “People make too many assumptions about people with dementia,” she says. “There’s often a lack of imagination in their care. If someone liked looking at good painting, they are not going to lose that when they are in a care home. They may not be able to read any more but they can still enjoy looking at the pictures in our books.”

Bate was inspired to start the business after her own mother, a dementia sufferer, enjoyed looking at a scrapbook Bate’s daughter had put together. “There was nothing else out there,” she says. her first three books were published in 2006 and, thanks in part to charitable sponsorship, she has now produced a total of 11, all designed to combat the isolation and depression which can so often be associated with dementia. The organisation has diversified into producing artwork and is now working on dvds.

“If you go into some care homes, it’s almost as if they assume that because people are old and have dementia, all they want to look at on the walls is pictures of the royal family, wartime or old street scenes. It’s pigeonholing everyone into a very narrow category.” The Pictures to Share books cover everything from sport to shopping and from the world of work to travel.

There’s diversity too in the choice of images: colour and black and white photos both old and new are mixed with reproductions of paintings. The key criterion is that all of the images should be powerful and easy to understand to prompt memories, a chat or simply a smile. “Because of their dementia, certain things won’t work if they are too complex,” says Bate. “And we have to be careful about showing pictures people might get worried about. For example, with a picture of children paddling in the sea where you can’t see any adults around, people could get quite distressed because they think the children are in danger.”

I tried out three of the books with my mother, who has multiple dementia. I was unsure how she would react, but I was delighted to find that the pictures inside captured her imagination. She used to be a great traveller, so it was perhaps inevitable that the biggest hit was the travel book. Its shots of the Taj Mahal and train, plane and ship journeys, really got my mum chatting.

The feedback from other users suggests my mum’s response is not unusual. “It opens the channels of communication that are a bit stuck,” she says. “Relatives find them really useful to get a conversation going, which can be tricky for people with dementia.”

For relatives and carers perhaps the most powerful thing about the books is that they remind us all that behind every person with dementia is an individual with their own interests, likes and dislikes and their own life story. They are not all the same, so let’s free our imagination – and theirs – as we care for them.

“I feel privileged to be different; I wouldn’t want to be the same as everyone else.”


Above, a film about the making of a play about Down’s Syndrome at a Camphill Village Trust community, The Grange in Gloucestershire.

Today’s the start of Learning Disability Week. What’s it like living with a learning disability? A few years ago, my sister, who has Fragile X syndrome, spotted the teenager next door embark on her first driving lesson. “I’ll never do that,” she quietly remarked. Quick as a flash, my mother replied: “You might not, but there’s plenty of other things you do brilliantly.”

Another time she asked why she had Fragile X syndrome. A plain, simple question and one that the rest of us asked for some time after her diagnosis (the answer: the genetic lottery). That was a tricky moment – it wasn’t that she required a literal explanation of the genetic make up that set her apart, but she was struggling to make sense of why there were certain things she found difficult to do and certain situations she felt uneasy in.

Unable to avoid some cliches, we explained that everyone’s different – wouldn’t the world be a boring place if we were all the same? – and talked about her amazing achievements which regularly leave us awe-struck, biodynamic farming among them.

If you’ve no experience of learning disability, you might assume that people like my sister potter along aimiably, existing in a smiley, hand-flapping, blissful state of ignorance, unable to articulate or appreciate the extent of their special needs.

The illuminating and moving film, above, about the making of a play about Down’s Syndrome at a Camphill Village Trust community, The Grange in Gloucestershire, lets the actors speak for themselves:

“I can’t be like Robin or Claire; I’m different.”

“It feels weird being with Down’s Syndrome.”

“To be honest, I feel quite privileged to be different; I wouldn’t want to be the same as everyone else really.”

The playwright, whose brother has a learning disability, recalls the days when those with learning disabilities were ushered away from mainstream society: “I was seven and he was nine when we were separated…my brother was tucked away in a sheltered workshop.. he would be a footnote..something to be forgotten.”

While grim institutional care is no longer the only option for people with learning disabilities, the horrific goings-on at the Winterbourne View care home and new Mencap research on disability hate crime are just two reminders of the massive problems that remain.

For me and my family, the awareness week that starts today means not only appreciating the scale of the challenge when it comes to creating a fairer society for the learning disabled – and demanding action – but celebrating the achievements of those we feel proud to call “different”.