National Gathering of Local Area Co-ordinators

LAC imageWe asked Vicky Nicolson, a Local Area Co-ordinator in Edinburgh, to share her thoughts on the recent National Gathering of LACs…

Local Area Co-ordinators gathered from far and wide for the National Gathering in Edinburgh on the 26th March 2014. I was delighted and excited to connect with colleagues (and friends) who work within the framework the Scottish Consortium for Learning Disability (SCLD) produced in 2010.

The important word here is connect – at the National Gathering Local Area Co-ordinators had a chance to connect with each other.
We have the opportunity to hear from policy makers and researchers about how what we do connects our work with legislation and strategies, how our fellow Local Area Co-ordinators connect with the communities, the families and the individuals they work with and, most importantly, to reflect on our own connections.

The big questions raised at the National Gathering were…

• How can we develop a model of governance and build a coherent identity across the LAC network in Scotland?
• How do we define the outcomes and research programme necessary to underpin a sustainable LAC network?
• How do we define good practice?
• How do we demonstrate and communicate good practice?

So, what do we, as Local Area Co-ordinators, need to help us stay connected? Given that we often work in different roles, with different customers, for different commissioners and in diverse geographical areas, what does connect us?

The people who helped us to reflect on these questions were…

Simon Duffy, who chaired the Gathering. I first encountered Simon when I read a paper he wrote called The Challenge of Co-Production when I studied the Personalisation in Practice course designed by SCLD along with some fellow Local Area Co-ordinators in 2011. Since then I have been inspired by he and his colleagues’ work at the Centre for Welfare Reform.

We heard from the LAC National Reference Group who explained the findings of their reflections on the question ‘What does a healthy life mean to us?’ Mo and Laura shared the work that group had done and it was not surprising for me, a Local Area Co-ordinator, that Mo said the key to being healthy was not physical but emotional. Mo said a healthy life was about friendships and relationships, about rights, about good quality support, accessible information, having meaningful choices and money.

We then heard from Jennifer McLean, Public Health Programme Manager, for the Glasgow Centre for Population Health who discussed projects which are using an asset-based model and the early findings of these. I think everyone in the room agreed that Local Area Co-ordination shares the core values and characteristics of an asset-based approach described by Jennifer. However, for me, this presentation raised the question of how asset-based approaches develop within a public service context? Are they at risk of moving away from some of those core values and characteristics as they expand and grow?

Beth Hall (COSLA) and Pauline MacDonald (Scottish Government) shared their perspectives about Local Area Co-ordination. What does a successful LAC network look like from the perspective of COSLA and the Scottish Government?

Simon challenged us to think about what the future holds for Local Area Co-ordination in Scotland and shared his experiences of recent visits to Western Australia. Simon encouraged us to consider where Local Area Co-ordination will sit when the major cuts to public services are in place and how we can unite and move into the next phase of Local Area Co-ordination – ‘Beyond Sexy’!

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Mother’s Day

Equal_Say_LogoTo celebrate Mother’s Day this Sunday, we asked Amanda Muir, Development Manager at Equal Say Advocacy, to blog about her experience of working with parents with learning disabilities…

This morning, I was listening to a caller on the radio complaining about the commercialisation of Mother’s Day. Personally, I always look forward to Mother’s Day, not because I expect to receive an expensive gift and a shop bought card but because I love the look of pride on my daughter’s face as she presents me with a hand-made card. This year I’m anticipating a luke warm cup of tea brought to me in bed as well, no doubt accompanied by a lengthy explanation of how she made it all by herself. For me, Mother’s Day is a marker in the year when I can look back and marvel at how my baby girl has changed into a beautiful 10 year-old, so full of vitality and enthusiasm for the world around her. I’m also looking forward to afternoon tea with my own mum and some time to reflect on the value of the bonds we share.

Inevitably at some point during the day, my thoughts will turn to the mums I have had Mother_Childthe privilege of meeting as part of my work with Equal Say. They are mums who have a learning disability and for whom raising their children is, perhaps, a bit more of a challenge. How often have you heard a new parent say about “they don’t come with a handbook”…becoming a parent involves learning lots of new skills and learning to adapt to a baby’s ever changing needs. For parents who have a learning disability accessing suitable information and advice about bringing up children might be much more difficult. This can be made even more difficult if it’s hard to ask for help as the fear of being judged by others who might think you are not a good enough parent is very real for many of the mums we work with.

At Equal Say we have been advocating for parents who have a learning disability living in Glasgow for the past four years. During this time, I have seen many parents who clearly love their children have them removed from their care largely because of a lack of appropriate supports that take into account the specific needs of the parent to learn in a manner that works for them.

Over the past couple of years, thanks to Big Lottery funding, we have been working with Mellow Parenting to run parenting groups aimed specifically at parents who have learning group-parentingdisability and their pre-school children. Running in Glasgow, these groups focus on giving parents an opportunity to learn at a pace that suits them. A group will meet one day a week for 14 weeks and each parent who attends is supported by a volunteer who visits them at home in between group meetings to help them put what they have been learning into practice. The group has a particular emphasis on supporting parents to develop a good relationship with their child. Each group is made up of around 6- 8 parents and their children. While the parents are in the workshops, the children are busy in the crèche next door. At lunchtime, parents and children come together to eat and to join in a lunchtime activity. These activities are enjoyable for parents and children alike; it’s a chance to have some special time together, sharing in an activity and learning new ways to have fun together.

If you want to find out more about our Mellow Parenting Groups, whether you think you would like to join a group, become a volunteer, or are just curious to find out more, please get in touch with me by email at amanda@equalsay.org or have a look at our website http://www.equalsay.org Happy Mother’s Day!

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Down’s Syndrome in the political spotlight

Chris Creegan, SCLD Chief Executive blogs on UN World Down’s Syndrome Day about the first ever debate on Down’s Syndrome in the Scottish Parliament…..

UN World Down’s Syndrome Day LogoWe are coming to the end of Down’s Syndrome Awareness Week and today is UN World Down’s Syndrome Day. Down’s Syndrome is the most frequently recognised cause of learning disability and it’s been a busy week for our partners, Down’s Syndrome Scotland.Image

One of the highlights of the week was the first ever debate on Down’s Syndrome in the Scottish Parliament. The motion on the order paper focused on recognising the value of people who have Down’s Syndrome in Scottish society and enabling them to reach their true potential. It had cross party support.

It is easy to be cynical about such set piece debates. In contrast with more high profile parliamentary business they are not eye catching and news grabbing. That’s partly because they are not divisive. They create a moment of consensus. But they do matter.

In the case of people with Down’s Syndrome, the change in attitudes captured in the parliamentary motion is actually quite recent. If Down’s Syndrome directly affects you and your family, you don’t have to have a long memory to understand that those rights have had to be fought for. A resounding commitment from our parliament to respecting those rights and ensuring they are embedded in practice is important – not as an end in itself but as a platform for action.

The debate provided the opportunity to put the lives of some of Scottish society’s most marginalised people in the spotlight. It reminded us that there is a raft of legislative and policy initiatives which have the potential to make a real difference to the quality of Imagethose people’s lives. So there are levers to tackle health inequalities, create employment opportunities and enable people to have more choice and control over their lives. Those levers need to be pulled.

As a number of the contributions from MSPs demonstrated their commitment is underpinned by personal experiences and connections. We need our politicians to have those touchstones. If they are serious about creating opportunities for people who have Down’s Syndrome, our decision makers need to be ambitious for them.

And they need to recognise the real value of self-advocacy and be informed and influenced by this. So talking the talk matters, but only as a platform for walking the walk. Down’s Syndrome Scotland held an information event the day after the debate and more MSPs came to talk about what they could do back in their constituencies. So they are interested and willing.

Take a look at the parliamentary debate. Listen closely to what MSPs had to say. And let’s work together to hold them, and each other, to account.

In 2018 the World Down’s Syndrome Congress comes to Glasgow. That’s just four years away. When we welcome people to Glasgow, what will we have done to turn the fine words we heard this week into real change?

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Review of the Mental Capacity Act 2005 (England and Wales)

Chloe Trew from SCLD’s policy team blogs on how the review of the Mental Capacity Act 2005 (England and Wales), published today, has important messages and lessons for Scotland. Chloë is not a lawyer and would welcome comments and clarifications on this analysis.  Some of the language and concepts in this blogpost are hard to understand.  However, the ideas are so important that we felt we needed to blog on them.  We have included a news story on our website which explains what the review is about in more accessible language.

House of LordsYesterday the House of Lords Select Committee on the Mental Capacity Act 2005 published the findings of its review of how this piece of law was working in practice. You  can read the full report here and the easy read here. Although we have a different suite of legislative provisions around mental health, capacity and adult protection here in Scotland, we should have regard for the Select Committee’s findings, since they go to the heart of important issues in the support and human rights protection of people with learning disabilities.

A key issue raised by the Select Committee relates to deprivation of liberty. All people have the right to liberty and security, which can only be limited in certain circumstances. Freedom from arbitrary and disproportionate state interference with individual liberty is enshrined in Article 5 of the European Convention for Human Rights and Fundamental Freedoms, to which the UK is a party. The mechanism for protecting this right is through the courts here in Scotland and ultimately at the European Court of Human Rights in Strasbourg. Before considering the specific challenges to liberty facing adults who lack capacity today, we should acknowledge that for many years, many people with learning disabilities in Scotland were institutionalised and deprived of this most basic right merely on the basis of having a learning disability. We have a collective responsibility to recognise and remember this most arbitrary, disproportionate and discriminatory of policies and reflect on whether we are still making policy and law in its shadow.

More recently, the issue of deprivation of liberty for people who lack capacity, which includes some people with learning disabilities, was brought sharply into focus by a human rights case brought against the UK in 2004, by HL, a man on the autism spectrum. The case is sometimes known as the Bournewood case, from the name of the hospital to which HL was eventually admitted. HL had a complex home life, which had improved upon his going to live with informal carers, a couple known as Mr and Mrs E. However, one day while attending day services, he began to display behaviours which staff found challenging and he was taken to a local psychiatric unit, where he was treated. He did not object to being there and as such was treated as a voluntary, or informal patient, meaning that he was not detained under mental health law. The unit prohibited visits by Mr and Mrs. E and although he was not detained, nor was he able to leave the unit. He was also treated using anti-psychotic medications. Following his release, HL and his carers brought a case against the UK, alleging that he had been deprived of his liberty and that the common law doctrine of necessity had not been sufficient to authorise this.

The European Court of Human Rights agreed on the basis of a lack of procedural rules governing the circumstances in which HL had been admitted and detained at the hospital, justice blog 4the fact that he had been deprived of contact with his carers, and most importantly that his status as a voluntary patient had meant that he had no access to any legal safeguards, such as review by a competent legal authority.  The judgment in HL v UK triggered a review in England and Wales of the way in which the right to liberty of adults lacking capacity was protected, with the introduction of Deprivation of Liberty Safeguards or DoLS. These were designed to ensure that people who lacked capacity and were deprived of liberty had some legal safeguards in place to protect them, to ensure that their detention was not arbitrary.

 In their review published yesterday, the House of Lords Select Committee’s report found that DoLS are not fit for purpose, describing them as:

‘poorly drafted, overly complex and bear[ing] no relationship to the language and ethos of the Mental Capacity Act.  The safeguards are not well understood and are poorly implemented.  Evidence suggested that thousands if not tens of thousands, of individuals are being deprived of their liberty without the protection of the law, and therefore without the safeguards which Parliament intended. Worse still, far from being used to protect individuals and their rights, they are sometimes used to oppress individuals, and to force upon them decisions made by others without reference to the wishes and feelings of the person concerned.’

justice blog 2One of the critical issues around deprivation of liberty is that there is no fixed definition in law of what this entails. The case law from the European Court of Human Rights has at times been contradictory, making it hard for States Parties to create policy and draw up statute and hard for courts to make decisions in individual cases as to whether a deprivation of liberty has taken place. Furthermore, the domestic courts and appeal courts have also disagreed as to the criteria which should be applied to establish if a deprivation of liberty has taken place.

In England, the definition of deprivation of liberty has recently been tested in a number of cases including that of Stephen Neary, a young man on the autism spectrum placed into local authority care against his wishes and those of his father. At present we also await a decision of the Supreme Court on the Cheshire Case , involving P, a man with learning disabilities, who was considered to lack capacity and whose movements were subject to restrictions, including being restrained through the use of a body suit to prevent him from ingesting his incontinence pads (for more on this and other cases, see the excellent blog by Dr Lucy Series)

These are highly complex issues.  We should remember that in as much as public authorities are under duties not to interfere with human rights, such as justice blog 3the right to liberty and security, they also have positive duties to protect them. As people with learning disabilities frequently find themselves caught on the knife edge of these conflicting duties, these are questions which we must ensure our public authorities are well-supported to answer. In Ps case, it would have been a dereliction of duty for health and social care providers not to take steps to prevent him from engaging in a practice which so clearly endangered his own health. The critical question is, was their set of solutions one which was proportionate, person-centred, respectful of his human dignity and one which acknowledged his human rights, as set out in the ECHR and the UNCRPD?

So what is the situation regarding deprivation of liberty of people with learning disabilities who lack capacity in Scotland? At present there is no scheme like DoLS which provides legal safeguards against what may amount to deprivations of liberty for adults who lack capacity. So for example, a person in Scotland may well be being deprived of their liberty unlawfully if they

  • lack capacity to make a choice about where they live;
  • live in a care home because they need specific support or health interventions and;
  • are subject to measures which might have the effect of restricting their liberty in that care home.

This means that there are likely to be a significant number of people in Scotland who are subject to what could amount to deprivations of liberty in human rights law, a fact which the Mental Welfare Commission for Scotland has alerted on a number of occasions.

The Scottish Law Commission is keenly aware of the gap in legal protection and has been undertaking a review of this question as part of their 8th programme of law reform. This has included a consultation ‘Discussion Paper on Adults with Incapacity’ and meetings with organisations representing people who may be affected, including SCLD, People First Scotland and the SIAA. They have been drawing up some recommendations which are likely to be made into a Bill which will be available for public consultation. SCLD has provided initial thoughts on draft suggestions and we are looking forward to continuing to support this important area of work.

justice blog 5It is clear from the report by the House of Lords Select Committee that following the DoLS model is unlikely to prove fruitful for Scotland.  One advantage that the Scottish suite of mental health and capacity law holds over English law in deciding the best approach is a common set of guiding principles with regard to the way we intend that people should be treated (even if this may not always be borne out in practice).  The conclusion of one of the submissions received by the House of Lords in their review from the Cambridge Intellectual and Developmental Disabilities Group is that this was not the case in England at the time DoLS were developed:

‘The principles and scope of, and criteria for the Mental Health Act and the Mental Capacity Act are fundamentally different….the MCA is based around principles of autonomy, empowerment and the importance of supporting decision-making capacity as far as possible; the MHA is not.’

These are not easy issues.  Even if in Scotland we manage to come to an appropriate, workable and human rights based conclusion on the issue of authorising significant restrictions on liberty and providing legal safeguards here in Scotland, we must still draw the distinction between the issue of whether the deprivation of a person’s liberty has been legally authorised and whether that person is receiving the support they want and need in the setting that they choose. Is their life the way they want it to be?  We should not be satisfied until people with learning disabilities get the lives they want, lives which are meaningful to them, where their choice and control is maximised and where their human rights are respected.

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International Women’s Day

Saturday the 8th of March is International Women’s Day. In celebration of this, Angela Henderson from our policy and performance team blogs about women and learning disability… 

IWD logoThis year’s theme for International Women’s Day is ‘Inspiring change’. It recognises that there has been positive change towards equality for women but that there is still some way to go. It is a call for women’s advancement ‘everywhere in every way’.

What better day than this to reflect on the lives of women who remain the most excluded and marginalised within our society? Women with learning disabilities are mothers, friends, carers, lovers, wives, daughters, workers and citizens. But how far are these diverse roles and contributions recognised in the media, in policy and politics or in campaigns for social change?

Whilst it is widely acknowledged that there has been major progress globally for women and girls it is also recognised that we still have much further to go in addressing gender inequality. It is challenging if not impossible to find data about how gender inequality has been experienced by women with learning disabilities over time, from their perspective. By excluding women with learning disabilities from our analysis and discussion of gender based discrimination, are we saying that their experiences of inequality and discrimination are only defined by their disability?

The ‘global hub’ for International Women’s Day says there are opportunities for everyone Ethics-Balance-Wrong to be an advocate inspiring change for women’s advancement. Yes, within our ‘specialist fields’ we can advocate for change alongside people with learning disabilities. But how does the ‘global feminist movement’ (OK so this isn’t really a thing) incorporate these most marginalised of voices into a broader analysis of gender inequality?

During the ‘second wave’ of feminism ‘third world’ feminists argued that western feminist discourses could not speak for them, and that race and class were just as important in defining their experiences as being a women. As we have progressed, new voices have demanded that their experiences, cultures and values are at the heart of our analysis of gender inequality. This has led to an enriched understanding of gender inequality and how it intersects with race, class, disability and sexuality. But the voices and experiences of women with learning disabilities are at best still on the periphery and at worst, remain invisible

The challenge for global feminists is to welcome women with learning disabilities into the heart of the conversation about gender equality. We need to start by asking if our campaigncampaigns for equality proactively include the voices and experiences of women with learning disabilities. To achieve this, we can do some practical things. We can make sure that women with learning disabilities are always present and we can make our conversations more accessible and jargon free. And we can enable women with learning disabilities to tell their stories and create spaces for those stories to be heard. We can revisit history and ask some different questions of it in order to truly understand their experiences.

As a society we have a duty to recognise collectively the experiences of people with learning disability if we are to address the stark inequalities faced by people with learning disabilities in Scotland today. And as advocates “inspiring change for women’s advancement” we need to ensure that the gendered nature of those inequalities in Scotland today is understood.

Happy International Women’s Day!

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The books that made me

WBD2014_teal_leftMarch 6th is World Book Day! Jan Murdoch from our Communications Team celebrates it by talking about some brilliant books.

I LOVE books and have done since I was a wee girl. Reading is one of my very favourite things to do, so whenever World Book Day comes round it gets me thinking about books that have made me think about things differently or stayed with me long after I’ve read the final page.

Sometimes this is because it was a cracking story, when you can’t wait to turn the next page and you wonder what you will do with your time when it’s finished. And sometimes it’s because the book has changed the way you look at things or opened your eyes to something you hadn’t thought about before. And sometimes you get books that manage to be both.

crossing boundariesCrossing Boundaries’ and ‘Forgotten Lives’ areforgotten lives two such books. Both explore the history of people with learning disabilities in Britain, especially the lives of people who have lived in big institutions like Lennox Castle and the Royal Scottish National Hospital in Larbert. What’s more, up until books like ‘Crossing Boundaries’ and ‘Forgotten Lives’ people with learning disabilities were largely excluded from Britain’s social history and also denied the opportunity to write this history for themselves.

These books, more than any other I have read about learning disability, exposed me to the systematic, longstanding discrimination faced by people with learning disabilities in our society. For me there can be no better place to start in understanding the social model of disability than through the experiences of people with learning disabilities.

As well as a thought-provoking read, I did promise there were fascinating stories too. One of the stories from ‘Crossing OLYMPUS DIGITAL CAMERABoundaries’ that has particularly stayed with me long after I’d closed the book, was that of Mabel Cooper. Mabel’s mum was sent to an institution because she was an unmarried, pregnant young woman. As a result Mabel was born in an institution and continued to live in one for all of her childhood and early adult life. Sadly Mabel’s mum never left institutional life and died in a long-stay hospital that Mabel would one day live in herself. A circumstance made all the more tragic given Mabel and her mum never met.

For Mabel the story did take a different turn of events to her mum; she lived through a time when there was a programme of closing the long-stay institutions that many people with learning OLYMPUS DIGITAL CAMERAdisabilities called home for many years. She left institutional life and became one of the most well-known voices in the self-advocacy movement for people with learning disabilities. She broke new ground by researching her past alongside her friend and colleague, Dorothy Atkinson, who was then a Senior Lecturer at the Open University. Above all she inspired other people with learning disabilities to tell their stories too and challenged everyone else to hear those stories; acknowledging what these tell us about the discrimination of people with learning disabilities. In 2010 she was awarded an honorary degree by the Open University in recognition of her considerable contribution to researching the social history of learning disability.

I had the great pleasure of meeting Mabel, and Dorothy, when they spoke at the Forgotten Citizens event we ran in partnership with the Open University and IRISS. One of those rare moments in life when you get to meet in real life someone you’ve read about on the page.

What was most powerful about Mabel’s contribution to our event, terrific keynote aside, was her incredible ability to connect her story to the lived experiences of other people with learning disabilities. Reflecting upon Mabel’s life and her contribution brought to mind another book that made me see things differently – Paulo Freire’s ‘The Pedagogy of the Oppressed’. In this book he says:

“Washing one’s hands of the conflict between the powerful and the powerless means to side with the powerful, not to be neutral.”

The power of Mabel’s words, among those of many other writers, through books like ‘Crossing Boundaries’ and ‘Forgotten Lives’ is that she chose her side and in doing so challenges us to “not be neutral”.

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Happy St Valentine’s Day from dates-n-mates!

Dates-n-mates logoDates-n-mates is a friendship and relationship agency run by and for people with learning difficulties in Glasgow. Ahead of Valentine’s day we asked Joyce Innes from dates-n-mates to write today’s blog…

What do you think of when you think of Valentine’s Day? That may depend on whether you’re male, female, single or attached but it will usually have something to do with romantic love. That’s not new in the UK, in fact the modern cliché Valentine’s Day poem can be found in the collection of English nursery rhymes ‘Gammer Gurton’s Garland’ (1784):

The rose is red, the violet’s blue,
The honey’s sweet, and so are you

The origins of St Valentine reach back even further. The most widespread and romantic version says that in third century Rome, when Catholics were persecuted and soldiers were forbidden to marry, a priest named Valentine was inspired to marry couples in secret. Emperor Claudius II found out about this priest and sentenced him to death. While waiting for his execution, the priest gave classes to Julia, his jailer’s daughter and fell in love with her. On the day of his execution, he wrote her a message and signed, ‘From your Valentine’, a phrase that’s still used.

While the custom of sending cards, flowers, chocolates and other gifts on the 14th of February may have started in the UK and spread to some other countries, other parts of the world take a slightly different slant on the meaning of St Valentine. In some Latin American countries Valentine’s Day is known as “Día del Amor y la Amistad” (Day of Love and Friendship) when the emphasis can be on the friend rather than the lover. Often there’s an ‘Amigo Secreto’ which is like our Secret Santa, names are put in a hat and you buy a gift for the person whose name you draw out.

We love romance at dates-and-mates and so will have lots of hearts and flowers at our Valentine’s Ball on the 13th of February but we also value friendship and like the idea of celebrating a Day of Love and Friendship.

valentines-day-2014-facebook-wallpapers

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Growing Up Down’s – a tale of life less ordinary

Chris Creegan, SCLD Chief Executive, reflects on a memorable hour of television…

No one who saw Growing Up Down’s on BBC 3 on Monday could fail to have been moved and inspired. The programme followed the story of a group of young actors from Winchester who are members of the Blue Apple Theatre, a company for people with learning disabilities.

The story centred on the actors’ experience of rehearsing and touring a production of Hamlet. They were mostly, but not exclusively, young people with Down’s Syndrome. They were young women and men in their late teens to mid 20s, some of whom had known each other for a number of years.

hamlet 1

I studied Hamlet as an English A Level student back in the late 70s and the programme reminded me what a difficult play it was to understand and appreciate. The plot is dark and profound. It’s not for the faint hearted.

I was also lucky enough to be part of Manchester Youth Theatre, playing Shakespeare and other things to paying audiences at large commercial theatres. It was a privilege and it was serious stuff as I’m sure some of my contemporaries, like Lesley Sharp, who made it big would tell you.

Like MYT, this was serious drama. This wasn’t a pantomime production at a local venue with audiences dominated by parents and friends. This was a full on touring production; seventeen nights, countrywide to paying audiences of hundreds.

The programme explored the actors’ experience of rehearsing the play, working with the director to make big decisions about what shape the production should take and how their characters should develop. Their deliberations were informed and impassioned; judgements of head and heart.

And the director, though clearly skilled at working with the young people, pulled no punches. This needs much more energy, much more passion, he implored. And especially from you Tommy, he said to the young man playing Hamlet. There were no excuses. The pressure was clearly intense.

Tommy Jessop will know all about that pressure. You may remember him from the brilliant BAFTA nominated Coming Down the Mountain in 2007.

The programme also went, literally, behind the scenes. It explored the dynamics of the relationships between members of the cast. There were struggles in love and the pain of unrequited love. There were tensions at the boundaries between different sexualities and loves; gay and straight, romantic and platonic. There was looking out for your friends when things are tough.

There was also the complexity of unravelling the on stage experiences of the characters and the day to day lives of the actors when they became intertwined. And against the backdrop of the big question at the heart of Hamlet’s most famous soliloquy, to be or not to be, the young people grappled with the effect of Down’s Syndrome on their own life experiences and identities.

At times it was hard to remember that these were young people with learning disabilities. At others it was impossible not to be moved by the fact that they were. These were young people whose parents had been told they would do nothing, that their lives would in effect be unlived. Yet here they were, large as life and twice as bold. If you want a lesson in ambition, you need look no further.

Growing Up Down’s is unmissable. Catch it on iPlayer while you can.

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No Excuses for Second Rate Care and Treatment

Our Chief Executive, Chris Creegan, blogs about two investigations by the Mental Welfare Commission for Scotland that found that people with learning disability are still not being treated equally…

unfairThe publication of two new investigation reports by the Mental Welfare Commission is a timely reminder of the inequalities faced by people with learning disabilities in Scotland and the dire, sometimes tragic, consequences that they can have.

‘The keys to life’, Scotland’s learning disability strategy published last year rightly celebrates the progress we have made in improving the quality of life for people with learning disabilities. But it leaves us in no doubt that there is much more to be done.

The strategy reminds us too that people with learning disabilities have some of the poorest health of any group in Scotland. This includes the fact that they may die up to 20 years younger and that those deaths are sometimes preventable.

Mr S and Mr EF

The Mental Welfare Commission’s reports concerning Mr S and Mr EF provide food for thought for those of us who are signed up to changing those stark realities.

For Mr S, things have fortunately improved since the events which prompted the investigation occurred. And he has a better quality of life because things have been put right.cross

Mr EF on the other hand sadly died. And while his death resulted from a pre-existing condition, the Mental Welfare Commission feel strongly that, like Mr S, he did not receive the care and treatment he had a right to expect.

The cases of Mr EF and Mr S are different. But some of the lessons we can learn from their experiences are the same.

Interagency working

Both reports underline the critical importance of effective joint working between statutory agencies including the NHS, local authorities and those in the criminal justice system. Where agencies cannot or do not agree, the consequences for some of the most vulnerable people in our society can be appalling.

PoliceIn Mr S’s case the effect of poor inter agency working was that he ended up in custody rather than in hospital. Failing to join up the dots between agencies can be damaging for any of us. But can you imagine if the result was a prison sentence?

Effective communication

Good communication within and between agencies is vital too. In Mr S’s case it was communication between agencies, the NHS and local authority practitioners, and in turn their relationship with the police, that was under the spotlight. In Mr EF’s case it was communication within the NHS that fell short of the standards it should have.

communicationAnd there should be no excuse for not ensuring good communication with people with learning disabilities. In Mr EF’s case medical practitioners failed to communicate properly with him for fear of causing distress which may have led to a ‘deterioration in his behaviour’. In whose interests is such a judgement made?

Appropriate care and treatment

Both reports also throw into sharp relief the need for appropriate care and treatment. Sadly, they underline the fact that it quite simply doesn’t always happen. The reports demonstrate that poor coordination, lack of information sharing and a failure to work together can have a profound effect on people with learning disabilities.

Getting it right

Policies, procedures and legislation can always be improved. And regulatory frameworks have their place to flag up poor practice when things don’t work as they should and ensure we learn from it.

Code_of_ConductBut in reality there is no shortage of policy and legislative frameworks designed to ensure that people receive the care and treatment they are entitled to. Getting it right is about the culture that underpins those frameworks and putting the choice and control of the individual at the heart of professional practice.

It requires seeing the person at the centre, having high expectations for the standard of care that person has the right to receive and, above all, not making assumptions about the lives of people with learning disabilities.

We must get it right first time. If we don’t, people who have few enough chances to start with will continue to be the losers.

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Feartie, Smug or Paranoid?

Fiona Horton, our Events and Marketing Co-ordinator, asks ‘What does Scotland think so far’?

white paperOk. I am not what you might call an ‘election anorak’ but there is something about the Referendum that provokes an obsession within me to find out how fellow Scots feel about it all and how they might vote come 18th September. It was therefore with excitement and anticipation that I attended the ScotCen Social Research Scotland’s conference on What Scotland Thinks So Far on 22nd January. Chaired by Brian Taylor, (BBC Scotland) the conference explored the attitudes of Scottish people, based on the opinions of 1500 Scots, looking at the independence referendum, considering how well the key issues have been identified and addressed and how effective the two campaigns have been at advancing their respective causes, and what the public have made of the arguments to date.

Are you with me so far?

VotersThe conference covered issues too detailed to go into right now, but you must check out the What Scotland Thinks website. Although don’t blame me if you lose an afternoon checking out all the fascinating info on there! Among the many issues discussed on the day, the one which grabbed me most, was how the campaigns seem to be failing to engage with voters.

Firstly, despite lively topical debate in most households throughout Scotland, I do feel we lack a more detailed insight as to how independence affects each and every one of us economically. Speakers on the day called this the Savings‘bread and butter argument’ and this does seem to be the killer question in making that informed decision: will we be better or worse off? Having such uncertainty is certainly impacting on the voters as the conference highlighted that many people have still to make up their mind – around 1/3 according to the Scottish Social Attitudes Survey. The Survey also allows us to look at whether people’s views on independence have changed over time. Disappointingly for the campaigns, the data shows that there has been no significant shift in opinion on independence since 1999.

This takes me to my second point…

Is it me or is this campaign simply dull? No catch phrases, no great surprises, no va va voom! Is the best yet to come? Hope so. Getting a group of minor celebrities to debate on TV with no idea of basic issues can be entertaining, if only for the blank “help” look on their faces! There is nothing memorable to take away from the debate. Hopefully we will see something pulled out the bag in the near future. There is an acute disenchantment with all to play for and any new motion could sway the vote.

Lastly there is a section of future voters which, I believe, have been overlooked. However easyread-greenso far it is obvious that there has been little thought to the accessibility of the campaigns or even the process of engaging with the vote. At SCLD we’re working towards achieving an inclusive Scotland where people with learning disabilities take their place as valued citizens. To do this people with learning disabilities in Scotland need information which supports them to make an informed choice –we want to work with others to develop and promote these materials. Watch this space!

Ballot_BoxProfessor Lindsay Paterson of the University of Edinburgh, spoke at the event and offered some interesting thoughts on the groups that seem to be emerging. There are the “Fearties”, who are hooked into the debate but are still weighing it all up before making up their mind. Then there’s the “Smugs”, who feel well informed and have a clear idea of how they will vote. And finally the “Paranoids”, who think the debate is being distorted so that we’re not getting the full picture. So..which are you? …I’m a feartie!

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