22/02/2016 Inside Out South West


22/02/2016

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Transcript


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Hello and welcome to Inside Out South West -

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stories and investigations from where you live.

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Tonight - the drug giving hope to people with dementia

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and the patients helping to put it to the test.

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Sky-high hopes, which are probably not wise, but there you are.

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I am really pleased we are part of it.

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But I want it to make a difference. I want it to slow the disease down.

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I want it to give us longer.

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Watch your head.

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Also tonight - we investigate the garden furniture companx

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which seems to make a habit of taking its customers to court.

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Definitely, definitely don't buy one.

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Just keep walking.

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Sausages. Sausages.

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And celebrating Natty, one mum's emotional battle to change

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ideas about Down's syndrome.

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Natty, I'm so sorry I got it wrong, before I knew you.

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Thank you.

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APPLAUSE

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I'm Jemma Woodman and this is Inside Out South West.

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First tonight, - what's it like to be part of the fight

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against one of life's cruellest diseases?

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We have had exclusive access to patients in Plymouth tri`lling

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a new drug aimed at slowing the progress of Alzheimer's.

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She is such an intelligent woman and worked so hard to becomd

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a lawyer, to really achieve something with her life.

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And this is a nightmare for her

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It was the worst thing for xou?

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The worst thing for me to lose mental faculty,

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if you like, to a degree.

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It was just... Couldn't tell you.

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Thanks to Carol...

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You are making me cry now, get off!

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Sorry!

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It is, it is the worst thing...

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The worst thing, my worst nhghtmare would be this disease.

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Diane Grey developed Alzheimer's at the age of 54.

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She and her partner Carol are heading to an appointment

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at Derriford Hospital, an appointment which could give them

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something that in the past five years has been in short

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supply - hope.

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Sky-high hopes, which are probably not wise but there we are.

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I mean, it would just be fantastic. It would make a difference.

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I mean, it would just be fantastic. It would make a difference.

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The drug under scrutiny is called Solanezumab.

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Studies have suggested it mhght slow progression in the early

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stages of Alzheimer's.

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If it is proved to work, it would be the first real

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breakthrough in the fight against this devastating condition.

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Dr Stephen Pearson is leading the work in Plymouth.

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I find it exciting and the research is very meaningful to our p`tients

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and it does give them hope.

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It is like a voyage of discovery to try and understand and ddvelop

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treatments and better treatlents.

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So, what is the theory behind this drug?

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The onset of Alzheimer's is partly triggered by the build-up of rogue

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proteins called amyloids around neurons in the brain.

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This can start a decade before symptoms of dementia show.

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As the amyloids stick together, in clumps known as plaques,

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they block the connections between neurons, causing

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them to die.

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Solanezumab appears to mop tp some of the proteins,

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before they start to form plaques, so preserving brain function.

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But the potential of Solanezumab is not clear-cut.

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An 18-month trial ended in disappointment in 2012.

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But when pharmaceutical company Eli Lilly looked closely at data

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from that trial, they found indications that the drug

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was helping some patients in the early stages of Alzhdimer's

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and so created a trial focusing on those patients.

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Patients like Dave Woods.

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Anything to help others and help me of course,

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it's got Sue worrying.

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So it is good, you are doing something rather than just sitting

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around, watching the birds in the garden.

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And waiting for the next stdp, yes.

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It is a way of being proactive, isn't it?

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We feel as though it is not just for us...

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Potentially, it would be for everybody.

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I noticed other things...

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Little things really, Dave was getting slightly

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disoriented, not recognising places he had been to before and also

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that his immediate memory was not that good.

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There is no hiding from this. It is there.

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It is a fact. It is scary.

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Hopefully, we are doing the right thing and we can hold it at bay

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There is a feature of this research, as in many drugs trials.

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Only some patients get the drug

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Others get what is called a placebo, an infusion with no drug in it.

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This way, the result can be compared.

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Because this is a clinical trial, we have a placebo control

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for the drug, as part of the scientific validity so that

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means in this trial, half the patients get a placebo

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and half get the drug.

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It is a blinded mechanism for scientific research.

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Now I am blinded, the patients are blinded, so I cannot sw`y

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results in any way, because we all want patients to improve.

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So we are going to complete a number of tasks today.

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I will explain each one as we go through.

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Today, Dave's brain function is being tested.

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He does not know whether or not he has been getting the drug.

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He also doesn't know to what extent his brain has

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deteriorated in that time. Today's tests may shed some light.

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So, I am going to show you some words printed on these whitd cards.

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Please read each word out loud and try to remember it.

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This is the difficult bit.

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Blood.

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Club.

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Cotton.

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Theme.

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Steam.

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OK, tell me all the words you can remember from the list.

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Plant. Toy.

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It is a struggle. That's about it.

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OK.

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The results will be fed into the overall trial data.

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There is another reason this is a big day for Dave.

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He has reached the end of the trial and will be given the drug `s long

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as it is in development, as a sort of thank you.

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Today is the big day, isn't it?

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It is what they call open label day and today,

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Dave has the drug.

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Obviously, it is brilliant, so we will wait and see.

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The result of the brain function tests are not shared

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with the patients but brain scans are.

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Good to see you again.

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I have got your scan images up here, we can have a quick look at it.

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The brightness of the scans show that the proteins in Dave's

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brain have increased.

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No one knows if Dave was receiving the drug or the placebo

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but a disappointed Sue cannot help but draw her own conclusions.

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It was a huge shock when I saw those scans the other day because for me,

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it was almost the realisation that it seemed as though Dave had

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been on the placebo for the last two years.

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Sue is drawing comfort from Dave now being on the drug for sure.

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It is not going to cure it.

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There is possibly nothing ott there that will but if it c`n hold

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it at this level where I can cope, Dave can cope, we are OK.

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Diane's trial period has also ended so now,

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she too is knowingly receiving the drug.

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Today, she is getting her scan results and she feeling upbdat.

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We are really looking forward to looking at the ones from a couple

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We are really looking forward to looking at the ones from a couple

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of years ago before we started all this, and the latest onds.

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Diane, here is your MRI scan, this is the most recent one.

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But it is fairly clear that is a bigger glow in thhs scan

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than on the one a year ago.

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This is not the news they had hoped for.

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Diane's brain has deteriorated.

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However, she knows she is now definitely on the drug and they can

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see the positive side.

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Now you are, hopefully it will get better.

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It is a weird disease. It does horrible things to xou.

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Oh, dear. Never mind, will be all right.

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Yes, we are together, that is the thing.

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I am really pleased we are part of it but I want it to make

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a difference, to us, to Diane, I want it to slow the disease down.

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I want it to give us longer.

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Preliminary results from thd trial will be available in Decembdr

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so it is a waiting game unthl then.

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Next tonight - one woman from Cornwall and her very

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mischievous daughter, in their battle to win hearts

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and minds in the understandhng of Down's syndrome.

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This time, we are going to say sausages.

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Sausages.

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The world of child modelling has a new star.

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Natty Goleniowska from Cornwall is nine.

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She has Down's syndrome, her starring role here an indication

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that old attitudes and prejudices are changing.

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And something else is changhng too - the ability of doctors to ddtect

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Down's syndrome before birth.

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A new test has been developdd, much more accurate than

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what is available now, but for some, that is not good news,

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it is potentially a step backwards.

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Big smile. That's lovely.

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Natty's mum Hayley writes an award-winning blog

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about Down's syndrome.

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She remembers how shocked she was when doctors told hdr Natty

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had the condition.

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I had absolutely no idea wh`t Down's syndrome really meant.

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I had very outdated images that came to the fore in my mind,

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people that were hidden awax, hidden away from view, institution`lised.

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I couldn't have been more wrong

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And you must have wanted to actively bust those myths.

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How did you do that?

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The modelling came about because I had found so very much

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support in seeing other children doing ordinary, everyday thhngs

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But many parents still fear Down's syndrome.

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When it is detected before birth, nine out of ten

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pregnancies are terminated.

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Hayley believes that would change if parents were given a mord

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balanced picture when they were told their baby has the condition.

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No one can predict what an tnborn baby with Down's syndrome...

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What their needs will be, intellectually or physicallx

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or medically.

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But the full set of information needs to be given to the parents

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and that includes the possibilities for children these days with early

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intervention and the absolute wonderment of individuals

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with Down's syndrome.

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Natty has changed our lives beyond measure.

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In Cornwall, this support group prepares welcome packs and ` book

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for parents of new babies with Down's syndrome.

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It is one of the few places in the country where this h`ppens.

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Here too, there is concern.

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If the diagnosis was receivdd and parents are being made to feel

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that the natural choice is to abort their child

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because of the Down's syndrome diagnosis, then that is a rdal worry

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because there is a whole section of society that will get

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screened out of existence.

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There is a whole, rich, diverse population of the world

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that is not going to be herd anymore and that would be a shame.

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When Bonnie Davies was pregnant with her daughter, test restlts

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showed Down's syndrome.

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She says she was repeatedly offered an abortion.

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The immediate reaction was to book me in for a terlination,

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and that was just over the phone and it was kind of just an `utomatic

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response to what my result was.

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And I said, it took me back a little bit and I said I don't

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that is necessary.

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Bonnie says the advice she was given about the condition

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was simply too negative.

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It is just not as bad as yot think.

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Obviously, your life does change, it is obvious that happens,

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but you get there.

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These parents' concerns about screening are being ftelled

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by the new test which is expected to be offered on the NHS soon.

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It is more accurate than what is used now.

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Hayley fears that without the right advice and support for parents,

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it could all but eradicate children with Down's syndrome.

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That has prompted her to step up her fight.

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She and Natty are travelling to Edinburgh where she will talk

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at an important conference of student nurses.

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She wants to challenge the negative messages about Down's syndrome.

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Shall we put it in the case, do you want to put it in for me

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Pop it in there, good girl.

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To be given the privilege of being able to speak at this

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conference, to hundreds of these students and to make a diffdrence

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right now at the beginning of their medical careers, hopefully,

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will help other families that they encounter along the way.

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We will catch up with Haylex and Natty later.

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Thanks, girls.

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But first, I'm going to Great Ormond Street Hosphtal

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in London to find out more about the new test.

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It is called noninvasive pre-natal testing or NIPT.

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If you are expecting, you can already have an ultrasound

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scan and a blood test to sed if there is a likelihood of Down's

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syndrome but it is not very accurate.

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If signs of the condition are spotted, you will be offered

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another test to be sure. It is called amniocentesis.

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Doctors use a needle to takd some fluid from around the foetus.

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It is accurate but there is a small risk of losing the baby.

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NIPT involves testing the mother's blood for traces of the babx's DNA

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so the extra genetic materi`l which children with Down's syndrome

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have can be spotted.

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How is it going, OK?

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Professor Lyn Chitty led a lajor study looking at whether NIPT should

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be offered on the NHS.

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The current test will identhfy about 85% of the babies with Down's

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syndrome whereas this test identifies over 99%,

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so it is more sensitive.

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And that means that fewer women will end up being offered

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an invasive test to see whether or not the baby does indeed

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have Down's syndrome.

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Could this test wipe out people with Down's syndrome

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from our society altogether?

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This isn't going to happen, there will still be people

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who do not want to have any Down's syndrome screening and even those

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that are identified by being at an increased chance of h`ving

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Down's syndrome, some still declined because they wouldn't do anxthing.

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And we have shown that women with the diagnosis made safdly

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still feel that is what thex want, they want the information

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and they do not want to terminate the pregnancy.

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So I think these fears are ungrounded.

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But for Hayley, those fears are real.

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She and Natty have arrived at the student nurses conference,

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more determined than ever to press home their message.

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Hayley, how are you feeling, are you all prepped?

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I am prepped, I am ready to go, I think.

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Just a few last-minute nervds and wiping doughnut off

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Natty's face.

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LAUGHTER

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APPLAUSE

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Just that you are all here,

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and some of you have travelled so far to come to such an event

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fills me with hope and thank you all.

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Parents must be given time to process and think.

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All too often, the only opthon given to families is an appointment to end

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this perceived suffering before it begins.

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A kind of early euthanasia, if you like.

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Even if you students think that you are not making a differdnce

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please know that you are.

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You are showing by shining dxample that all lives are precious

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and worthy of respect and your words count.

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The speech is going well but then Hayley is overcome by emotion

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as she accepts that some of her own preconceptions

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about Down's syndrome were wrong.

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Bless you, Natty.

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It is quite hard when she is in the room.

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Natty, I'm so sorry I got it wrong, before I knew you.

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Thank you.

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APPLAUSE

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I love you, I love my family.

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APPLAUSE

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It looked as if Hayley is winning some powerful allies

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She is talking to some of the most senior people hdre.

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The health professional rulds about helping the family

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and individual have objective information and make

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their own mind up.

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It is really positive, practical advice that I will take

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into my practice and share with my fellow student midwhves

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Hayley and other parents say their fight to have thehr voices

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heard, whatever the future over the testing of Down's syndrome

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and as medical advances makd it easier to detect the condithon

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before birth, they will makd sure the lives of people living

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with Down's syndrome are accepted and respected.

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A decision on whether to offer the new test on the NHS

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is expected shortly.

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Next tonight, John Cuthill has the story of how one takes people

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to court despite loads of complaints of incomplete deliveries and faulty

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products costing thousands of pounds.

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Mind your head.

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I am on the trail of a man who makes a habit of taking his

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customers to court.

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That is Richard Wood and his business partner

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Valerie Bailey from Basingstoke

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Never oiled it, never greasdd it, never done anything to it.

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They have been making thous`nds of pounds from families

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and businesses across the country and it is all down

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to garden furniture.

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You can spend ?1 million and you will never get another one

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you can barbecue on.

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Richard and Valerie's company, Hampshire Garden Furniture,

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sells high-end summerhouses and giant parasols.

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With one hand, not two hands, with one.

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Scores of customers have bedn summoned to court by Mr Wood.

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And some say that is for orders they never even made.

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It starts at around ?2,000.

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We bought the cafe in December 009 and we opened in the spring of 010.

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Jayne Gray runs a beach cafe in Falmouth.

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She went to a trade show and ordered two large

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parasols, or jumbrollies.

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A signature item from Hampshire Garden Furniture's collection.

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She paid a ?600 deposit and ordered her cafe logos to be

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printed on the fabric.

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The first arrived damaged and was taken away.

0:21:550:21:58

The second was not much better.

0:21:580:22:01

So this is it, this is the jumbrolly.

0:22:010:22:03

So, this is it.

0:22:030:22:06

Has this ever been used in `nger?

0:22:060:22:10

No, we can't use it because there is a square top missing at the top

0:22:100:22:13

so the rain would just come through the middle.

0:22:130:22:15

Right.

0:22:150:22:17

Can we try and see if we can get it up?

0:22:170:22:21

The other thing is, this was meant to be white.

0:22:210:22:27

If you notice, that has gone through the canvas.

0:22:270:22:31

That has gone right through. Right through, yes.

0:22:310:22:33

Meanwhile, the people who are sitting here

0:22:330:22:36

are getting wet.

0:22:360:22:38

Marie Burgess from Hatton in Cambridge found Mr Wood

0:22:380:22:41

at the Norwich Garden Show.

0:22:410:22:44

She ordered a brand-new oct`gonal summerhouse for her wedding day

0:22:440:22:47

and paid a ?2,000 deposit.

0:22:470:22:51

It was made, the weather was nice, we were looking forward

0:22:510:22:54

to on the Saturday afternoon, friends, family were going to be out

0:22:540:22:57

on the lawn in the gazebo.

0:22:570:23:00

That was going to be part of the celebrations.

0:23:000:23:03

Mr Wood took another ?6,000 from Marie's account and a week

0:23:030:23:07

before the big day, a gazebo arrived.

0:23:070:23:11

It was really substandard.

0:23:110:23:13

It was supposed to be hardwood and my son picked one

0:23:130:23:17

of the legs up with one hand.

0:23:170:23:21

It was all scratched and dented and I think it probably had

0:23:210:23:25

been used before.

0:23:250:23:28

Mr Wood agreed to replace the damaged gazebo and 24 hours

0:23:280:23:31

before the wedding, some workmen arrived with a different model.

0:23:310:23:35

Then, his excuse was, he hadn't got any octagonal shaped

0:23:350:23:38

ones, so would we have this round one?

0:23:380:23:42

They worked most of Thursdax and then realised they had only got

0:23:420:23:46

half of the roof here.

0:23:460:23:49

They had got a bit of the roof missing and some other

0:23:490:23:51

bits and pieces.

0:23:520:23:54

The heater, the fridge, bits and pieces were missing.

0:23:540:23:57

So they went away, left all the tools, things scattdred

0:23:570:24:00

all over the lawn, and said they would be back first thhng

0:24:000:24:03

Friday morning.

0:24:030:24:04

Bear in mind, we were getting married Friday afternoon.

0:24:040:24:08

No one did ever turn up. We went off and got married.

0:24:080:24:12

We didn't have a gazebo for the wedding and at that point,

0:24:120:24:15

we were thinking, we are ?8,500 out of pocket.

0:24:150:24:20

Many months later, they eventually did get their money back -

0:24:200:24:23

from the credit card companx.

0:24:230:24:27

Mr Wood said to us that Marhe was clearly unhappy and he offered

0:24:270:24:30

to replace the original delhvery and that he had found

0:24:300:24:34

her a replacement.

0:24:340:24:38

He said she then wanted to cancel the whole order and that he has

0:24:380:24:41

heard nothing since.

0:24:410:24:44

So, plenty of allegations of poor quality goods for loads of loney.

0:24:440:24:47

Some people don't get any ftrniture and they still end up in cotrt.

0:24:470:24:53

Mrs Lewis is having this carpet

0:24:540:24:58

Cheryl Squibb runs a home ftrnishing and carpet business.

0:24:590:25:05

She wanted to spend her hard earned cash on a nice summerhouse

0:25:080:25:11

for the whole family to rel`x in.

0:25:110:25:16

She was looking for something like this but the ones being offered

0:25:170:25:20

by Hampshire Garden Furniture came with a big discount.

0:25:200:25:24

I just wanted to know a little bit more about them, I was advised

0:25:240:25:28

a site survey would be done to confirm that I could havd one.

0:25:280:25:32

I was asked to sign the doctment to have the survey and to sdcure

0:25:320:25:35

the ?4,000 discount.

0:25:350:25:39

After the show, there was b`d news.

0:25:390:25:42

Cheryl's grandson was taken seriously ill with meningiths.

0:25:420:25:45

Understandably, her priorithes changed.

0:25:450:25:49

I cancelled the appointment on the proviso that I would re-book.

0:25:490:25:52

But in all honesty, my brain was all over the place,

0:25:520:25:56

we were in turmoil with the news we had been given.

0:25:560:25:59

I didn't think any more of ht.

0:25:590:26:01

What happened next?

0:26:010:26:04

I received a letter from Mr Wood saying that I had signed a contract,

0:26:040:26:07

I was liable for the summerhouse, it was on its way and he

0:26:070:26:10

wanted his payment.

0:26:100:26:15

But despite her protests, Cheryl ended up in court,

0:26:150:26:19

where Mr Wood produced a full ordered document apparently

0:26:190:26:22

signed by Cheryl.

0:26:220:26:26

How do you think your signature is on an order and invoice document?

0:26:260:26:29

I don't know how it has been done but it was done without

0:26:290:26:32

my knowledge at all.

0:26:320:26:34

I have done nothing wrong, I work for every penny I have got.

0:26:340:26:37

I built my own business over ten years and have

0:26:370:26:40

gone without everything. Now I am having to pay this man

0:26:400:26:45

We have spoken to a number of people who told us the same story,

0:26:460:26:50

that they thought they were signing up to guarantee a trade show

0:26:500:26:53

discount, only to discover it was a contract they

0:26:530:26:56

couldn't get out of.

0:26:560:26:59

Mr Wood told us he didn't bdlieve anyone would sign an order

0:26:590:27:02

by mistake and said he was obliged to take people to court

0:27:020:27:05

because these were bespoke htems, difficult to resell.

0:27:050:27:09

This is our first day and this is the only one for 4,000 anywhere.

0:27:090:27:14

Actually, he offers this discount at every show.

0:27:150:27:20

Mr Wood didn't want to be interviewed for the programle

0:27:200:27:24

about the unhappy customers left in his wake who claimed

0:27:240:27:27

they were either misled about what they were signing up for,

0:27:270:27:31

or who had received the wrong items, damaged goods or nothing at all

0:27:310:27:35

Mr Wood claims he has only taken 90 people to court over the last ten

0:27:350:27:39

years and had good reason to do so.

0:27:390:27:43

We have talked to similar businesses, the same size

0:27:430:27:47

as Mr Wood's who say they h`ve never taken legal action against `nyone.

0:27:470:27:51

As for Mr Wood's customers, they say they have lost thotsands

0:27:510:27:56

of pounds and regret ever doing business with Hampshire

0:27:560:27:58

Garden Furniture.

0:27:580:28:01

This worked out lovely, chedrs!

0:28:010:28:06

It is the injustice of it all, he's still going to these trade

0:28:070:28:10

shows and that is where he meets people.

0:28:100:28:13

Definitely, definitely don't buy one, keep walking.

0:28:130:28:15

Just really keep walking.

0:28:150:28:18

And yes, I would probably floor him if I saw him now.

0:28:180:28:22

And that is it from all of ts on Inside Out.

0:28:250:28:28

We will be back next Monday at 7.30pm.

0:28:280:28:30

I will see you then. Goodbye.

0:28:300:28:35

Hello, I'm Riz Lateef with your 90 second update.

0:29:040:29:06

A leap in the dark.

0:29:060:29:07

That's what David Cameron says leaving the European Union would be.

0:29:070:29:11

He made his case to stay to MPs today.

0:29:110:29:13

But the pound suffered its biggest drop against the dollar

0:29:130:29:16

since he became Prime Minister.

0:29:160:29:18

Details at Ten.

0:29:180:29:19

Adam Johnson began giving evidence at his trial today.

0:29:190:29:22

The footballer denied doing anything more than kissing

0:29:220:29:24

a 15-year-old girl.

0:29:240:29:26

But he admitted exchanging hundreds of texts with her

0:29:260:29:28

was flirty and inappropiate.

0:29:280:29:30

He denies sexual activity with a child.

0:29:300:29:33

200 mile an hour winds.

0:29:330:29:35

At least 20 people killed.

0:29:350:29:37

Fiji is struggling to get back on its feet after being flattened

0:29:370:29:40

by Cyclone Winston.

0:29:400:29:41

Changed energy supplier in the last year?

0:29:410:29:44

Well, you're not alone.

0:29:440:29:45

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