Tag Archives: service users

More autistic people should be able to volunteer

David Braunsberg
David Braunsberg
My experience proves the benefits of volunteering for people with autism. I was born in 1959 and diagnosed with autism in 1963, at age four. I was one of Sybil Elgar’s first pupils at her progressive school. She was a pioneer in autism and helped develop my language and communication skills.

I then attended a local primary school in Edinburgh, where my mother and I moved, and a mainstream secondary school in London when we moved back to England in 1972. Art was my strongest subject (I passed several O Levels) and I studied furnishing design and textiles at the London College of Furniture. I got a diploma in art and design. I took more courses after that at a local art college and learned things like etching and print making. My most recent works are computer generated greetings cards (see the website).

Following a traumatic event in 2008, I developed severe depression and anxiety . After some time attending a psychiatric unit, social services support and help from my GP, a social worker suggested volunteering and I was put in touch with Volunteer Centre Camden.

It was through the volunteer centre that I started working at the Holy Cross Centre Trust in July 2011. It is a secular organisation in King’s Cross, London, which supports mental health recovery as well as homeless people, refugees and asylum seekers.

I hadn’t volunteered before although I’d had some experience of work. The place where I worked previously was a company providing unpaid employment for people with mental health issues and was run as a social service. The aim was to manufacture and distribute large volumes of greeting cards to the mass market but I wasn’t happy there. The tasks I was involved in were printing and packing greeting cards and using Photoshop on a computer for designing cards for later use and batch production.

I did not get satisfaction there as I was mostly restricted to printing other people’s designs and this did not allow me to express my own ideas. Their bias was to produce Christmas cards and my inspiration for designs comes from many sources which are irrelevant for Christmas. The repetitive tasks were soul-destroying.

But at the Holy Cross where I am now, my role is to help and encourage people to draw and paint, also to set up and tidy the art materials. I work noon to 3pm. Everyone is kind and friendly and there is a positive buzz to the place. Not only is helping out so satisfying and rewarding, it helps me to gain significantly in confidence and the thrill of feeling respected and valued as part of a team is fantastically liberating. I have made many friends and can see myself thriving there well in the future.

Suitable volunteering should be open to more autistic people as the skills required such as attention to detail, reliability or some special talents are well suited to the autistic trait and may prove to be great assets for the workplace. On their part autistic people can benefit from mixing and socialising with people of different nationalities and backgrounds and feeling respected and valued. To me the regular routines, the structure to the week and the sense of purpose in society are most satisfying.

Autistic people may encounter some difficulties. For example, travelling on public transport, especially long distances, or unintentional and misinterpreted challenging behaviour may cause problems. But with foresight, awareness about autism, guidance and the right support I see no reason why autistic people should not be accepted and be very successful doing voluntary work. I am quite sure that, giving the right conditions, volunteering can be “autism friendly”.

The fact I am high functioning autistic has presented no problems in my volunteering. One of the benefits of working there is that it has a knock-on effect on my closeness, love and affection towards members of the family. I now feel so optimistic about the future. Socialising now comes with ease. I am thrilled with life!

* See more of David’s work on his website

Fetes, fundraising and firsts

Raffle ticket seller Raana Salman at the Lantern Community open day
Raffle ticket seller Raana Salman at the Lantern Community open day
I’ve never thought of my sister, above, as a saleswoman – she can be engaging, encouraging, persuasive and talkative, but she’s never actually sold me anything other than an idea (usually about what film to watch; invariably a Bond movie).

So my family and I were impressed – and proud – to see Raana in marketing mode (above, resplendent with pot for raffle ticket cash) for the first time on Saturday (scroll down for a gallery of snapshots).

We spent the day with Raana at a fundraising fete and open day at the Lantern Community in Ringwood, Hampshire, where she lives and works.

Raana, along with some of her peers, formed a veritable raffle mafia – but not only was parting with cash in a good cause, it was impossible to say no when the ticket sellers assured you “this one’s a winner!” (this was clearly a sales spiel – neither I nor anyone in my family won a single thing…).

The open day in the Lantern’s grounds – with flowers, plants and fruit and veg in early autumnal bloom, stalls, food and live music – marked the opening of a new house, Silver Birches, for adults with learning disabilities. The day was also a celebration of the charity merger between the Lantern and Seahorses. Seahorses is four-star holiday accommodation on the Isle of Wight run by, with and for people with disabilities (as well as for those without) – a B&B with a bonus, as I explained in a recent Guardian piece.

From the fruit, vegetables and plants on sale and display to the bakery produce and the range of arts and crafts including pottery and woodwork, the day showcased the talents of a creative and inspiring group of people. And one of them, running from stall to stall with a book of pink tickets and a broad smile, refusing to stop to chat to me (“I’m busy! I’m working!”), was my saleswoman of a sister.

Talking to my eight-year-old daughter about the fact I was going to blog about our day with Raana, she immediately suggested a title for the story. It’s so neat and accurate, I think it rounds off the post and sums up the event perfectly: The Lantern Stars.

Here’s a small taster of a very successful day:

The man dreaming of being ordinary – and the campaign to help him

An awareness-raising postcard by Cameron, 18: "Each fruit on my tree of life displays a message for me to follow. This helps me to mature and develop".
A postcard designed for a new disability awareness campaign launched today. “Each fruit on my tree of life displays a message for me to follow. This helps me to mature and develop”, says its creator Cameron, 18.

How many people aspire to be ordinary? Success is usually defined success as standing out from the crowd, being the focus of attention or doing something extraordinary.

But Shairaz’s wish is different.

Shairaz wants to be regarded as ordinary because, as he says, he and his peers are usually regarded as scroungers or superheroes.

Shiraz, who has a learning disability, says of the stereotypical perception of disabled people: “We shouldn’t only be portrayed when we do something amazing or something bad. We should also be portrayed when we are doing ordinary things. Most of us are not scroungers. It’s the government that has decided to offer us support, it’s not us begging. Many people can’t work and that’s not their fault, we shouldn’t be called scroungers.”

Shiraz is taking part in a new campaign launched today by the social care charity United Response. Along with a survey and a new report on attitudes to disability, there is an art project and exhibition from next week, Postcards From The Edges which focuses on the everyday lives and achievements of disabled people (see the examples on this page, view more on the charity’s dedicated project site and via this Guardian gallery).

The survey, report and artworks coincide with National Paralympic Day on Saturday, marking a year since the Paralympics – but the event’s impact may be fading, according to United Response’s survey. The aim of the survey, report and art project is to transform how the public sees disabled people.

For example, two thirds of the 1000 people surveyed say they see more disabled people in the real world than in the media, while four out of five say that the public does not know enough about disability.

While the research shows the Paralympics was a memorable event – Ellie Simmonds’ four gold medals is named as the best memory by 31% of respondents – less than one in five of respondents could name a disabled person who has become well-known in the year since the Paralympics. Meanwhile, 40% found it difficult to name a well known physically disabled person and only one in five could name a person with a learning disability.

The postcards, many of which will be showcased in an exhibition at Bankside Gallery in London, complements this research. The charity asked people – well-known or “ordinary”, with or without disabilities – to write or draw cards in any creative style. The only proviso was that the card design in some way responded to the question: “What do you want to tell the world?”.

United Response has collated the cards over the last eight months and the results – more than 550 pieces of art – are a snapshot of thoughts, hopes, fears, ambitions and everyday experiences of a wide range of people. There are submissions from older people with mental health needs, parents of children with autism, people with physical disabilities, children and social workers. Among the postcard designers are Paralympians Hannah Cockroft and Dame Sarah Storey, Olympian Sally Gunnell, Suede singer Brett Anderson and actor Emma Thompson.

An awareness-raising postcard by Scott, 19, from Staffordshire: "“My postcard is to try and educate people about autism and how others can be ignorant towards the condition”.
An awareness-raising postcard by Scott, 19, from Staffordshire: ““My postcard is to try and educate people about autism and how others can be ignorant towards the condition”.

The report from the charity’s campaigns panel (which Shairaz is a member of) underlines the messages from the survey and the art project. The publication, Superhumans or Scroungers, reveals the gap between the portrayal of the superhuman Paralympians and media coverage of disabled people.

“We shouldn’t be portrayed in just one light, as superheroes or scroungers,” says Shairaz about the report. “People should know more about our lives overall… I would just like to see us portrayed more as ordinary people. Yes we’re special in some ways, but so is everyone. It would be good to see television not just concentrating on our disability but on who we are and what matters to us, like the place we live. That would give everyone a chance to learn from different experiences and that might help everyone to stop generalising.”

The aim of the report and panel, Shairaz adds, is “to make people more aware of what disability is about…A lot of people have the wrong impression of people with disabilities. They think disabled people are all the same and should be classed under one branch. They don’t understand hidden disabilities, like my mental disability. A lot of people think that people with mental disabilities are crazy or stupid, but that’s not true.

“People make assumptions because they don’t understand. So I think the panel is about helping people understand and also telling them that we have rights and views and opinions. Our opinions count as much as able people’s opinions.”

The report stresses that media coverage of disability tends to focus on people with physical disabilities, meaning that people with learning disabilities, autism, mental
health needs and other hidden disabilities are “almost invisible”.

Shairaz and his fellow campaigns panel members also worry about the growth in news stories about welfare with, as the report states, a simplistic representation of disability creating “a polarisation of who is ‘deserving’ or ‘undeserving’ of support”. The report explains, “it means there is very little attention given to ordinary disabled people or the positive contributions that they make”.

The postcards project ties into this, says Shairaz, because it offers people a wider vision of disability and of the achievements of disabled people in a positive, creative way. He adds: “It’s also good to tell people your experience, but nice to do it in a fun way… Life isn’t always serious and spilling your heart out. When people ask about my life I don’t say “Oh, I just mope about and feel sorry for myself”, I say I have fun too.”

Su Sayer, United Response’s chief executive co-founded the organisation 40 years ago when it was the norm for people with learning disabilities to be hidden away in large institutions. She adds: “While the last four decades have seen huge changes for many people with learning disabilities, there is still widespread prejudice and lack of understanding from the broader public. Many people still don’t understand much about disability or the lives of disabled people, let alone their achievements.”

A postcard by Yvonne J Foster, an artist living with depression: “I have depression and sometimes I am so overwhelmed with strong emotions that my body collapses."
A postcard by Yvonne J Foster, an artist living with depression: “I have depression and sometimes I am so overwhelmed with strong emotions that my body collapses.”
Postcard by artist Yvonne J Foster: "Sometimes I cannot cope with reality. It’s not safe for me to remember things that have happened so I create a safe place for myself in my head.”
Postcard by artist Yvonne J Foster: “Sometimes I cannot cope with reality. It’s not safe for me to remember things that have happened so I create a safe place for myself in my head.”
Postcard by artist Yvonne J Foster: “Psychiatric hospital shouldn’t have such a stigma. I was admitted twice last year and it was the safest place I could have been at the time”.
Postcard by artist Yvonne J Foster: “Psychiatric hospital shouldn’t have such a stigma. I was admitted twice last year and it was the safest place I could have been at the time”.

Sayer adds that the two extremes of how disabled people are portrayed – lionised as superhuman or criticised as scroungers – is “far, far from the reality of the overwhelming majority of disabled people today…’ordinary’ disabled people are still very absent from public life”.

Shairaz agrees. “It’s important to know that it’s not just the people who can do great things at sport who are important,” he says. “Everyone is a hero in themselves. My girlfriend says I can be a hero sometimes, because of the support I give her.”

* The Postcards from the Edges exhibition opens at Bankside Gallery in London on Tuesday 10 September and runs until Sunday 15 September. It will be followed by a showcase at the Sage in Gateshead (1- 4 October), the Grant Bradley Gallery in Bristol (private view on the evening of 23 September) and the Camp and Furnace Gallery in Liverpool (4-10 November).
* Find out more about the project by visiting the Postcards website.

Public transport should be for all members of the public

Kevin Preen and Michael Edwards embark on their campaign to raise awareness about travel and learning disability
Kevin Preen and Michael Edwards embark on their campaign to raise awareness about travel and learning disability

Public transport – by definition involves “buses, trains, and other forms of transport that are available to the public, charge set fares, and run on fixed routes”. While the network is meant to be for the use of the general public, a significant section of that population – people with a learning disability – faces challenges when using the system.

While people with a physical disability are often literally unable to get onto vehicles, someone with a learning disability might be physically capable of stepping onto a train, but might find the system as a whole impossible to negotiate.

My sister, for example, likes using buses, trains or Tubes but it would be impossible for her to safely work her way round any of those modes of transport alone; her anxiety would leave her rooted to the spot and she’d be unable to cope with making sense of the numerous changes and confusing timetables..multiple folded leaflets, tiny print, lots of abbreviations..forget it, it’s difficult enough for the rest of us, let alone someone with Fragile X syndrome. So her journeys are accompanied or she’s driven from A to B by us but for other people with learning disabilities, there are not many other options for getting about.

Take Kevin Preen, without public transport, he says he would be “stuck in doors all day”. Kevin, 52, has a learning disability and Perthes’ disease, which led to a hip replacement when he was seven-years-old.

Kevin is supported by and is a peer-advocate for Oxford-based learning disability charity My Life My Choice (he has also represented Oxfordshire’s learning disabled community at the National Forum). He is now spearheading a travel and transport campaign for My Life My Choice during Learning Disability Week, which starts today.

The 52-year-old, who is currently awaiting an Atos assessment for work capacity, adds”: “Without public transport…I could make a few short journeys a week by taxi but I couldn’t afford to do much.”

His awareness-raising mission, known as the End to End trip, involves Kevin and a fellow peer advocate, Michael Edwards, travelling by train from John O’Groats to Lands End to highlight the importance of public transport to learning disabled people amid the cuts.The social exclusion often faced by people with learning disabilities is being exacerbated by the cuts as day services close and public transport becomes even more important in boosting people’s independence.

End To End Infographic

Kevin adds: “It will be a new experience. I’m getting excited about meeting people on the train and raising awareness of how important public transport is to people with learning disabilities”

Kevin and his fellow “transport champion” Michael will stay in B&B’s and hotels along the route with travel passes issued by train firm First Great Western. Accompanied by the charity’s champions coordinator Dan Harris – who will be capturing their journey online – the aim is to record the good and bad aspects of the trip. Dan adds that even if the experience involves getting on the wrong train, “as long as it isn’t going to seriously impact our journey, it would be good to capture that and explore the challenges that led to the mistake”.

Michael, 59, who has very limited vision, epilepsy and a learning disability. He lives with his brother who acts as his carer. Michael helped found the self-help charity and is a trustee of My Life My Choice. He says: “Trains bring me a lot of pleasure. I have been planning my own routes and taking trips as far away as Devon for 15 years. I’ve been watching trains on platforms since 1967…I like trains, I’ve got myself a hobby.”

According to the charity, among the main travel issues faced by the people it supports is the difficulty in being unable to understand timetables and dealing with confusing platform changes. Kevin, for example, once ended up getting on a train heading for Penzance instead of his home area of Oxford because of making a wrong platform change. Another major problem is that of bullying on public transport.

Bus and train drivers are also not always aware of the needs of disabled passengers. Just last month, for example, Jackie, who is also supported by My Life My Choice was travelling independently on a bus. On boarding, the driver asked her to reverse her wheel chair into the disabled space, but didn’t give her time to reverse before moving off. The jolt as he pulled away meant Jackie’s jacket got caught and tore. She pressed the bell well in advance of her stop but the bus driver didn’t stop until she was past where she wanted to get off (he told her she hadn’t pressed the bell well enough in advance).

The End to End trip schedule takes in Glasgow, Manchester, Swansea and Paddington before arriving in Land’s End on Sunday August 25th. In each place, the travel champions will meet local learning disability organisations.

My Life My Choice hopes to publish an easy read document about learning disability and public transport as a result of the End to End campaign and you can follow the trip on Twitter.

* More information about the trip can be found on the charity’s website and you can view a gallery of photographs about the trip here here.

An invisible population: older people with autism

A resident of Hinnerup Kollegiet, a Danish community of older people with autism (pic: Hinnerup Kollegiet)
A resident of Hinnerup Kollegiet, a Danish community of older people with autism (pic: Hinnerup Kollegiet)

Timothy Baron was among the first children in the UK to be diagnosed with autism just over 50 years ago. Timothy was in need of specialist education but autistic children then had no right to schooling, so his father, Michael, opened his own school, the movement became the Society for Autistic Children – now the National Autistic Society (NAS).

That was the 1960s; today, Timothy, who lives in residential care, is nearing 60. The first generation of children to be diagnosed with autism is now moving into older age. Ageing with autism brings not only the particular challenges of the condition – communication, social interaction or sensory issues – but the social, physical and mental health issues often experienced in old age.

Policymakers are aware of the impact on society of the ageing population, but the same focus has not been given to people with learning disabilities and autism.

Read the rest of my piece about the need for more work on autism and growing older in the Guardian’s social care pages.

“Ah the whiff of that bread!”: my sister the baker

Raana (left, centre) and her fellow bakers hard at work in the Lantern Bakery
Raana (left, centre) and her fellow bakers hard at work in the Lantern Bakery

My talented sister and her colleagues allowed us to document a day in their working lives at the Lantern Bakery based at the Camphill community where she lives. The bakery offers work and training to people with learning disabilities. You can watch and listen to the talented team of bakers in this Guardian audio slideshow we created after our visit.

There’ll be more from the bakers of Camphill on this blog in the next week or so – they really are an inspiring, welcoming and talented bunch of people and work in what has to be one of the buzziest bakeries I’ve ever been to (listen to the audio slideshow – especially my sister’s numerous interjections – and you’ll see what I mean..).

For now, however, the slideshow photographs and the words of the bakers themselves speak volumes and do a better job than I could in a long piece of writing to reflect the bakery’s ethos and prove why schemes like this are so vital. Plus they make the most amazing things so, I’d like leave the last word to my sister, “ahhh the whiff of that bread!”

Tailor-made technology: systems and support in social care

Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.

I came across Julie and Thomas’ story while researching a new report published today by the Voluntary Organisations Disability Group and the National Care Forum.

Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.

Julie and Thomas with his older siblings
Julie and Thomas with his older siblings

Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.

As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.

As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.

Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”

* Read more on the VODG website and download the report Using assistive technology to support personalisation in social care

“It’s important that while I’m having fun, Stanley is having a great time too”

Stanley Holes is, says his little brother Albie in the brief video diary above, simply “the best brother I could ever have.” Albie’s love for his 16-year-old brother is reflected in this short film which I just watched and wanted to share. Produced for Autism Wessex, the charity that supports Stanley, it stands out for me because it’s presented from a sibling’s perspective: “I love him very much,” says 11-year-old Albie of his teenage brother, “and he is very important to me and my family.”

Diagnosed with autism at three, with no speech and, as Albie says, “little understanding of the world that surrounds him”, Stanley hadn’t been to an autism-specifc setting until last year when he started Autism Wessex’s Portfield School in Dorset. Underlining the vital need for autism-specific support, only now is Stanley receiving proper speech and language therapy – and he’s thriving on the specialist care and education. In one of the previous schools he was at, his family was told that as Stanley was autistic, there was no point in him getting speech therapy since his condition made communication impossible.

Stanley was regarded as a child whose behaviour challenges, his complex needs mean he is prone to anger and violent outbursts (“episodes”, as Albie explains in the film). Yet his story shows that even in complex cases, positive outcomes are possible.

Stanley has started to shows more awareness of his surroundings, and is becoming more independent, using signing with more confidence. Younger brother Albie, meanwhile, is more assured about talking to people about his older brother and how autism affects him and his family’s life.

Stanley’s family realised after a few short months that he seemed much happier at his new school compared to previous special needs environments; as Albie says in the film, “It’s important for me to know that while I’m having fun, Stanley is having a great time too.”

Stanley is a weekly boarder at Portfield, coming home for the weekend, where Albie his parents, plus fellow siblings Mabel, 15, and Elsie, 7, are keen to spend time with him. Before starting at the school, as their father Paul says, Stanley’s behaviour was having an adverse impact on his siblings. Now, says Paul, the change in the family dynamic and in Stanley is “the difference between living and existing”.

A different perspective on learning disability

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A stereotype-shattering art project, which uses photography to counter negative mainstream attitudes towards people with Down’s syndrome, is showcasing the last eight years of its work.

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Shifting Perspectives Photographic Exhibition 2005 – 2013 is at the South Bank in London until Sunday (31 March) and aims to portray people with the learning disability as individuals, rather than people with a specific syndrome. Carol Boys, chief executive of the Down’s Syndrome Association, believe that the project has shown how people with Down’s syndrome have “the same hopes and dreams as everyone else”.

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Down’s syndrome is a genetic condition caused by the presence of an extra chromosome and affects one in every 1,000 babies; there are around 60,000 people with the condition in the UK.

The small group of photographers whose work forms the exhibition all have experience of having had children with Down’s syndrome; the collective came together 10 years ago to create a series of works for Down’s Syndrome Awareness Week (this year’s awareness week ended yesterday).

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Among the photographers involved in the ongoing project is Kayte Brimacombe, who documents social issues and whose previous images for the awareness week can be viewed here.

The art and awareness project has toured the UK and Ireland since then, visiting seven different countries. This week’s show reflects the body of work created so far and coincides with a special book marking the work created so far.

A wider range of images can be seen on the project website and admission to the show is free. It’s open from 11am – 6pm until Sunday 31 at the gallery@oxo and Bargehouse.

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“People who have a learning disability have the right to good services, choices and a good life”

If only more people had the chance to develop in confidence like Laura Minett.

Laura, who I interviewed for a Guardian social care piece today, works as an expert by experience. Her part-time role through the charity which supports her, Choice Support, means monitoring and inspecting social care services on behalf of social care watchdog the Care Quality Commission. The self-assurance she has developed thanks to the job means that when I misspelt her surname during our interview, she politely – but firmly – asked for my pen so that she could write it out for me herself.

Laura, who has a learning disability, told me she is driven by helping improve support for people who may be less independent than her. As she says in today’s piece in the Guardian: “I like getting out and about meeting people and thinking ‘maybe that’s good maybe that’s bad’. I like having a job and talking to the service users – it’s about their quality of life.”

The views of people who use social and health care services are so often not taken into account, something which a major inquiry into health treatment of people with learning disabilities found this week. Involving people who use services in improving the health and social care sector is vital, but so often consultation is nothing more than lip service.

Not so with the experts programme it seems. Another expert I met, Laura Broughton, stressed that paid work and the recognition that her opinion is valuable has made a huge difference to her life. Both the experts explained they have spotted things that could be improved in residential care (simple things, even, like offering people a better choice of food and drink) and told me that individuals in care tell them their concerns or wishes much more freely than they would a professional or full-time inspector without their personal experience.

Laura Broughton volunteering at London 2012
Laura Broughton volunteering at London 2012

She has been an expert for just two years, but already speaks in public and to social care professionals about her role. She walked into our meeting relaxed and confident. “I was quite different before doing this,” Laura told me. “I’d never had job before, certainly not in offices, I was more shy. Now I’ve done the experts work, Choice Support is getting me involved in slightly different things as well. I’m training [Choice Support staff and CQC inspectors] and have done presentations and workshops. It’s exciting…I’m travelling quite a lot and getting to know the country.”

Here is some more from the two experts in their own words, which both women previously shared on the CQC and Choice Support websites.

Laura Minett
Laura Minett
Laura Minett: “If someone said, “What is an expert by experience?” I would answer that I am a person who has a disability and who has first hand experience of using services provided by both health providers and social care providers. I use my experience to talk to others to find out what they think about the care they are getting and if it is good enough for each individual using the service.
I work with different inspectors and have already visited lots of different services like hospitals, a residential college, care homes, assessment and treatment units and secure units. I have recently been part of inspection teams involved in the National Review of Learning Disability services.
My main job is to find out about people’s experiences of the care they receive. The inspector tells me which of the 16 outcomes I need to prepare questions on to ask on the inspection. We arrange a meeting time for the day and go to the service unannounced. This means the provider doesn’t know we are coming. I use my experience to find out what they think about the care they are getting and if it is good enough for each individual using the service.”

Laura Broughton
Laura Broughton
Laura Broughton: “Being part of this review was a good experience for me. It gave me the experience of what it is really like for other people who have a learning disability. What happened at Winterbourne View was terrible and should have never happened.
Working as part of a team with inspectors was exciting. The work was exciting but difficult too. Sometimes some of the places I visited were not pleasing , they were challenging.
Some of the people I met should have more help in getting a better life. They were often bored and distressed and staff talked to them not as adults but as though they were children. Some of the people weren’t treated as individuals and certainly not in a person centred way. I felt some people didn’t get the opportunities they should have because they couldn’t speak or because others felt their behaviour was challenging.
It was good for me because I’m now a lot more confident, I’ve got a paid job as an Expert by Experience. Having a paid job is new for me as it is with a lot of people who have a learning difficulty.
I have a voice and I was able to help other people living in these services to have a voice.
I hope things will change. All people who have a learning disability have the right to good safe services, choices and a good life.”