Tag Archives: Fragile X

We need to listen to the quieter voices

Weaving, Raana Salman
Weaving, Raana Salman

Today is the start of Learning Disability Week 2014, the annual campaigning and awareness drive run by Mencap.

This year’s campaign week celebrates people overcoming adversity, prejudice and ignorance and it’s a welcome moment to focus on the positive amid the social and political inequity faced by people with learning disabilities (you can follow events and issues on Twitter using the hashtag #LDWeek14).

I’m thinking specifically of just two issues I’ve recently reported on; the needless death of young Connor Sparrowhawk and the consequent #justiceforLB campaign, and the related fact that people with learning disabilities feel ignored by politicians.

So today’s post is linked to something I’ve blogged here before, in a piece on a thought-provoking arts project run by the charity Creative Minds. There is growing – although unfortunately as yet not mainstream – debate about “learning disability arts”, and the quality of work being produced by people with learning disabilities.

Firstly, I want to share some of my sister Raana‘s artwork.

Obvious bias and sibling pride aside, so many friends and family have been genuinely surprised and impressed – and no, not in a patronising way – when I’ve revealed the creation they’re admiring has been crafted by my sister. Seriously – why would I hang crap on my walls (unless from an elephant and painted by Chris Ofili)?

She may not be a conversationalist or a writer, but pictures speak a thousand words and what she’s made is bold and beautiful. That said, Raana still produces her signature lozenge-shaped bullet cars and blobby, squat people (the hair is always spiky – a hangover from her boyband-loving days…these pieces are most definitely not on my walls), but here’s a taster of why I love what she does:

Mosaic collage, Raana Salman
Mosaic collage, Raana Salman
Felt work, Raana Salman
Felt work, Raana Salman
Detail from landscape, Raana Salman
Detail from landscape, Raana Salman
Pottery, Raana Salman
Pottery, Raana Salman
Church, Raana Salman
Church, Raana Salman

Secondly, while thinking about an art-related post, I came across some powerful pieces of work produced by members of Outside In. Based at Pallant House Gallery in Chichester, the project is a platform for artists “who find it difficult to access the art world either because of mental health issues, disability, health, social circumstance or because their work does not conform to what is normally consider as art”.

The pieces here are by artists who happen to have learning disabilities.

Aeroplanes & Spades, by Manuel Bonifacio
Aeroplanes & Spades, by Manuel Bonifacio
Musicians, by Michelle Roberts
Musicians, by Michelle Roberts
Hippo, by Neville  Jermyn
Hippo, by Neville Jermyn
Harry Potter Books, by Josie Goddard
Harry Potter Books, by Josie Goddard

The works should trigger some questions about “outsider art” and the gap between the treatment of and attitudes towards people who have learning disabilities and those who do not. What the Outside In project calls “the idea of there being an ‘us’ and ‘them’”. As one of the project’s award-winning artists, Carlo Keshishian, believes that “Outside In can function as a mouthpiece to project the voices of quieter people.”

That’s what we need – more people listening to and acting on the wishes of those whose voices (and by voice I mean profile, choice, representation, status) are not as loud as those in the “mainstream”.

And finally, take another look at the photographs of the artwork on this page. Ask yourself this, if you didn’t know, how many of the pieces would you genuinely have thought were produced by people with learning disabilities?

* I can’t end this post without signposting you to the colourful creations here by “industrious artist” Connor Sparrowhawk, aka LB, currently being sold in postcard and print form to raise funds for legal representation at the inquest. Connor died in a specialist NHS unit last year and the #JusticeforLB campaign is pushing for answers about his death and raising awareness about learning disability – this letter signed by more than 500 people, explains the issues and necessary action.

Colour, Connor Sparrowhawk
Colour, Connor Sparrowhawk

Raana, a real bread maker

Today is the last day of Real Bread Maker Week, not too high profile as far as awareness weeks go, but it seemed an opportune moment to share a one minute video of the best real bread maker I know – my sister Raana.

Ba

Raana works in the Lantern Bakery at the Camphill community in Hampshire where she lives. You can see and hear her and the other bakers in action in this audio slideshow I did for the Guardian. The video was put together last year as a little token of sunshine for family and friends after we did the slideshow, but following in-depth research and consultation (I asked Raana and our parents), we decided it would be fun to post it here.

Spliced together with not much time (but a lot of warmth and a fair sprinkling of my sister’s sense of humour), we hope it leaves you with at least one of four things:
1. A clear impression that my talents do not lie in shooting video
2. An understanding that my sister – and her fellow bakers – are damn good at what they do (and why shouldn’t they be?)
3. A smile
4. A hunger for (organic, wholesome, additive-free, made with skill) freshly baked bread

The bread maker week that ends today, run by the food and farming charity Sustain, champions “real” bakers’ “rightful place at the hearts of our local communities” and encourages people bake or buy real bread from local, independent bakeries. Just like my sister’s (she bakes a mean chocolate brownie too; if you’re passing by Ringwood, go taste…).

Papers, policies, progress and people

While researching a recent piece about the preventable death of teenager Connor Sparrowhawk in a specialist NHS unit, I re-read a lot of old – very good and still very relevant – policy and reports.

As the piece yesterday stated, an independent report found 18-year-old Connor’s death at a Southern Health NHS Foundation Trust assessment and treatment unit was avoidable – reigniting criticism of care for people with learning disabilities.

But for more than 20 years – from 1993’s influential Mansell Report to its 2007 revised version, to the 2001 report Valuing People and the 2006 Our Health, Our Care, Our Say white paper, it’s been clear what “good looks like”.

I started this blog specifically to look at good projects, people and places, mostly related to social care. I spend some of my time finding out and writing about the good stuff that goes on – it was what I was doing before I turned to “the Connor Report“. It was a cataclysmic shift from one extreme of care to another (that brilliant, easy read version of the report is from Change Peopleby the way).

I know some brilliant folk who support people with learning disabilities and complex needs. I’ve seen first hand some of the excellent and groundbreaking support that exists for autism, learning disability and for people with challenging needs. My sister’s benefitted from the right support (albeit after a bit of a fight).

Yet despite the good practice, great intentions, campaigns, official frameworks and guidelines and reams of evidence, the pace of change for people with complex needs is slow. And poor practice remains.

When you find out about the experience of Connor’s family – his mother Sara Ryan and stepfather Richard Huggins – it is impossible not to compare it with what’s meant to happen.

Below, are just three areas I very quickly plucked from some of the papers I’ve been revisiting:
– commissioning of care services
– the concept of personalisation (tailoring care to the individual rather than a “one size fits all” approach)
– the wider issue of the status of people with learning disabilities in society (something that angers me enormously).

The gap between the rhetoric and the reality – most notably when it comes to people with “challenging behaviour” and complex needs – is clear. Cast your eyes over these “then” and “now” juxtaposed extracts and comments.

Then – commissioning of care services:
Mansell Report 2007 :
“Combining the different elements of services to ensure that people with learning disabilities whose behaviour presents a challenge are served well is the job of commissioning. Models of good practice have been demonstrated and service providing organisations committed to good practice exist. However, in the period since 1993 development has not kept pace with need. Placement breakdown continues to be a widespread problem in community services; people are excluded from services; assessment and treatment facilities cannot move people back to their own home; some of the placements eventually found are low value and high cost. What is it that commissioners need to do to tackle these problems? …Failure to develop local services threatens the policy of community care. Doing nothing locally is not an option. Out-of-area placements will `silt up’ and reinstitutionalisation (through emergency admissions to psychiatric hospitals or via the prisons) will occur. Special institutions and residential homes for people whose behaviour presents a challenge will be expensive but of poor quality and will attract public criticism. Overall, the efficiency of services will decrease because of the widespread lack of competence in working with people who have challenging behaviour. Commissioners will have less control over and choice of services. Individuals, carers and staff will be hurt and some individuals whose behaviour presents a challenge will be at increased risk of abuse. Staff will be at increased risk from the consequences of developing their own strategies and responses and managers will be held accountable where well-intentioned staff operate illegal, dangerous or inappropriate procedures.”

Now – commissioning of care services 2014:
Sara Ryan: “How can the commissioners not do anything [with reference to why assessment and treatment units are still commissioned]…If you commission a young person to staying in a £3,500 a week unit, then it is your duty to go and make sure that is worth it.”
Richard Huggins: “Commissioners commission public services on our behalf..Clinical commissioning group decide between competing NHS provision, so you can’t have model like that [where you buy a service and then when it goes wrong] say ‘well it’s not our fault’.”

Then – being ‘person-centred’
Valuing People, A New Strategy for Learning Disability for the 21st Century (2001) :
“A person-centred approach will be essential to deliver real change in the lives of people with learning disabilities. Person-centred planning provides a single, multi-agency mechanism for achieving this. The Government will issue new guidance on person-centred planning, and provide resources for implementation through the Learning Disability Development Fund.”

Now – being ‘person-centred’ 2014
Sara Ryan: “There is no personalisation in these units…”
Richard Huggins: “We thought they’d say ‘this is what Connor needs this is what we should do’. How that would be achieved, we had no preconception. But we thought he’d come back with a better plan, we wanted an outcome that would suit Connor.”

Then – the status of people with learning disabilities in society
Valuing People (2001) :
“People with learning disabilities are amongst the most vulnerable and socially excluded in our society. Very few have jobs, live in their own homes or have choice over who cares for them. This needs to change: people with learning disabilities must no longer be marginalised or excluded. Valuing People sets out how the Government will provide new opportunities for children and adults with learning disabilities and their families to live full and independent lives as part of their local communities.”

Now – the status of people with learning disabilities in society 2014
Sara Ryan: “There is a prevailing attitude about learning disability that somehow, if you’re born ‘faulty’ you cannot expect to lead a full life. What is really upsetting is fact that Connor and most young people I know are learning disabled have so much to contribute, and so much people can learn from them, but people can’t see any value in them and don’t see them as human beings, I find that really distressing.”
Richard Huggins: “There are three issues here. What happened to Connor – the care he received and how he was treated, which is still not accounted for – the way Southern Health Trust behaved as an organisation, and then there is a more general issues about the status of learning disabled people in British society.”

I could add more examples, but I think the contrast is clear.

There is a strong and growing momentum for action following Connor’s death. There is also anger but, as someone wisely told me yesterday, the anger can be channelled into action. There is also, as one chief executive of a care organisation tweeted about Connor earlier today “an onus on all of us who care to stand together alongside families seeking justice”.

* There is a “Connor Manifesto” which outlines what needs to happen next and you can find out more about the campaign on the 107 Days site and Sara Ryan’s blog.

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