06/01/2014 Inside Out East Midlands

This programme contains pictures some viewers may find disturbing.

Hello, I'm Marie Ashby. Tonight, are patients with anorexia being let

down? We have tried, we have looked everywhere, but we cannot find

anywhere to support her. To others, the National Health Service has

failed. One father believes, with the right treatment, his daughter

would still be alive. We investigate whether the NHS is

failing the families who ask for help.

Also tonight, how DNA from the Elephant Man's bones may offer new

hope to scientists researching cancer.

And remembering Ray Gosling... I think at this juncture we should

pause for a moment. It is sometimes called the slimmer's

disease, but for the 160,000 people in the UK who have severe anorexia,

this sort of weight loss is not about losing a few pounds ` it can

be life threatening. Sufferers see themselves as overweight even when,

to everyone else, it is clear they are severely malnourished. Imagine

being a parent watching your daughter starve herself. Her health

declined rapidly. It really did spiral out of control. She would

lose for ?5 in a week. It has torn her as a part. To look

at her, you would not think there was anything wrong but living

day`to`day with it was absolutely horrendous.

I am beginning my investigation by hearing the story of one teenager

who lost her life to a mental illness that is often misunderstood,

even by health professionals. Emma Carpenter was 17 and weighed

only four stone. What kind of girl was she? A

fantastic pool. Very outgoing, she had a lot of friends. She was very

intelligent. What do you think triggered the anorexia? I am not

100% sure. It is believed maybe someone made a comment to her at

school when she was about 13. Other family members claim Emma's

mental health problems were the result of her mother's problems with

alcohol. She died six years after her daughter.

For seven years, Noel Hand has been fighting a battle with the NHS in

Nottinghamshire. He is convinced Emma's death was preventable and the

NHS treatment she received was inadequate. Here you are, look at

your mum. You feel Emma 's treatment was flawed. Why? It was flawed

because I do not think the people caring for her had the experience to

deal with the type of mental illness she had. She had what it what of

young girls have today, they need to be dealt with quickly. There is the

need for specialist help. I think if she had had that one year earlier

even, I firmly believe she would be alive today.

Emma was one of five people who died while being treated for anorexia in

Nottinghamshire in 2006. In the UK, anorexia is responsible

for more deaths than any other psychiatric illness in the UK, but

for so many young women to die in one seven`month period raised

serious questions about anorexia treatment in the county.

As her weight continued to drop, Emma was admitted as an in`patient

to an adolescent unit in Nottingham called Thorneywood. It treats

teenagers with a variety of mental health problems.

I wanted to hear first`hand the type of treatment on offer there for

anorexia, so I tracked down Emma's roommate Katie McKenzie. She has

since given up on the NHS and, seven years on, is still battling her own

eating disorder, with only her family for support. What was it like

going through the doors for the first time? It was just horrendous.

All the key workers there, a lot of them were not trained regarding

eating disorders. But the treated me as if I was a two`year`old child,

like a piece of duct on the floor. My dad tried to get information

about my care plan and made progress, because at the time I was

an adolescent, so he had every right, but they would not give any

information across at all. He felt as if he was on the B`side, this was

his 15`year`old daughter dying. To me, there, every time the name is

mentioned, it just feels like a nightmare.

Katie's father says the NHS has failed them. There is no discipline,

there is no structure, there is no forward path. There is nothing. We

have looked everywhere, we cannot find anything. To others, the

National Health Service has failed. That was only to Brighton. I

remember that. What I was hearing from both

families were similar criticisms. They claimed there was an absence of

specialist support for anorexia and that care plans lacked a clear

structure. Is this a bigger issue across the National Health Service.

I arranged to meet consultant Doctor Dee Dawson, one of the country's

leading experts on anorexia. Dee opened the country's first dedicated

eating disorder clinic in 1991. There is nothing out there for them

and they are less troubling and alone. What is the answer? The

answer is that the National Health Service needs to treat an exec

anorexia a lot more seriously. They also need to set up units for people

solely for the treatment of anorexia and not on paediatric wards or

general wards. After the five deaths,

Nottinghamshire Health Care Trust launched an urgent review of

anorexia treatment. So have things improved for anorexia

suffers in the county? Emma Carpenter and four other sufferers

died in 2006. I want to talk to a family who have received care in the

county much more recently. There is support and help out there, but it

is so drastically lacking. There are not the facilities or resources out

there. I am meeting Scott and Sarah

Robinson from Edwinstowe. Their daughter Amelia received out`patient

care in Nottinghamshire, but her condition got worse and she needed

to be admitted. They looked at Thorneywood, but after a day visit

there they refused to let her go there.

Instead, they opted for private treatment in Sheffield. Having been

thrown in as we wear, I was quite shocked. I was not happy with the

facilities for my daughter. It is a crying shame that we have two travel

to another county to get the help that is needed for Amelia. The unit

she is known as a specialist unit which is just for eating disorders

and there is no place like that in Nottinghamshire at all. Other

facilities to treat people with anorexia in Nottinghamshire

inadequate? Absolutely. We filmed Amelia soon after she was

discharged from the private eating disorder hospital in Yorkshire.

Scott and Sarah say they battled the NHS to fund her treatment there.

Amelia did not feel well enough to speak on camera, but wanted to

highlight her family's struggle. I want to put all three families'

concerns to the head of Nottinghamshire health care Trust.

He told me lessons had been learned from what happened in 2006. He also

said they 0 from what happened in 2006. He also

said they regretted the death of Emma. The loss of a young person

like this is the most tragic of events. My deepest sympathies really

do go to the family. We are the trust has any mistakes or

shortcomings in the care system that may have contributed, we are truly

sorry. In 2006, there were a cluster of deaths from anorexia. Hope can we

be sure that under your care this will not happen again? What I will

say is that anorexia is one condition that carries a high level

of mortality. What I can say is we have put into place specialist

staff, with a considerable amount of training and the provision of

sufficient supervision, so that we can provide the best care. That is

what we are doing. In December, Thorneywood passed an

inspection by the Care Quality Commission. Nottinghamshire Police

completed a four`year investigation into Emma Carpenter's death and it

concluded no criminal proceedings could 0

concluded no criminal proceedings could take place. The police thought

is serious enough to count it an investigation. We will continue

until certain individuals come under scrutiny. Joseph Carey Merrick,

better known as the elephant man, was born in Leicester a century and

a half ago. A film made him famous but we still know so little about

the terrible condition that caused his deformities. But now,

cutting`edge research could shed new light not just on his disease but on

the causes of cancer. Joseph Carey Merrick was

intelligent, articulate and likeable but because of his appearance, he

has gone down in history as the elephant man, Shand and avoided,

attacked and abused. These are his bones. Stored at Queen

Mary University of London. Inside out has been granted rare access to

film them and the casts taken from his body. Merrick left his remains

to science but previous attempts to extract DNA failed because the

skeleton was bleached to clean it. Now, 125 years after his death, new

techniques mean these bones may finally yield their secrets. He

suffered from a very severe form of overgrowth. The tissues in certain

portions and parts of his body were massively overgrown, hence the

reference to an elephant. Other parts of his body actually had quite

a normal appearance. This tells us that whatever the underlying genetic

problem was, it is one that is relevant to the fundamentals of the

way in which a cell grows and knows when to stop growing. The research

has barely begun but already, there is huge excitement about what may be

uncovered. Whilst I wouldn't predict that Merrick is sitting on the cure

for cancer, it is through studies of this nature we will have a better

understanding of what it is that determines how a sale moves from a

normal state into this abnormal process of discredited cell growth.

His story fascinates people across the world. Jeannette and may have

been researching why he continues to intrigue us. He was such a brave

individual and it makes us feel, well, if joseph could be brave like

that and in the face of everything that is going wrong, perhaps that

will give inspiration for me to cope with my own lot in life. There have

been many theories about his condition. We still cannot be sure

what it was that it may have been Proteus syndrome, an overgrowth of

skin and bones, named after a Greek sea god who changed shape. There are

several related illnesses and despite changes in our attitudes,

they are hard to endure. We have unfortunately hard one suicide of a

young man in his 20s because of the difficulties he had living with this

condition. We have 0 difficulties he had living with this

condition. We have dealt also with a couple of teenagers who were finding

it difficult and had suicidal thoughts. It is not something that

goes away. It can get more difficult as the years go on and 0

goes away. It can get more difficult as the years go on and equally into

middle life. This is where joseph Merrick was born but thousands walk

through without knowing it and its history. `` Joseph. We've asked to

historians to devise a tour. And the first person to experience it is

John Merrick, a descendant of joseph. People come from all over

the world to see the birthplace of Joseph Merrick. It was here, outside

what would have been the last house on the street. He was born in the

last but one. No street, no plaque, Bauhaus. How would he have been

treated in those early days? He was treated very badly. His stepmother

threw him out of the house. What with doors slammed in his face,

being jeered at in the street, stones thrown at him, he made no

money. One day, he came home having made nothing. His father beaten

savagely. And that decided it. He left home and voluntarily went to

the workhouse. This is the entrance to the

workhouse. Imagine a building up there behind. One of these small

gates is where he would have walked into the workhouse, when he gave

himself up to the workhouse. You can imagine 900 other people inside

there, orphans, the disabled, the infirm. That is what he went into.

Would there have been much sympathy for him in the workhouse? Yes, there

was. We know the authorities organised for him to have an

operation at the Leicester Royal Infirmary, to remove the trunk that

was growing from his lip. It appears to have been successful but then it

grew again. In 1884, he left the workhouse and this is where he came.

This is 0 0 0 workhouse and this is where he came.

This is the famous theatre of variety, the gaiety Theatre, the

Gladstone vaults. There is not a lot left here now. It must have been a

bit like King Kong, only instead of a gorilla, it was Joseph Merrick.

The audience would be warned that behind the curtain, there was a

terrible creature and he couldn't currently the safety of the

audience. Then the drums would roll. For poor Joseph on it was a living.

Joseph has left us to legacies. One is his remains, which hopefully will

lead to people being chewable relieved of various 0

lead to people being chewable relieved of various conditions. ``

being keyboard or relieved. He also leaves us a story which helps us

break down prejudice, break down the fear 0 0

break down prejudice, break down the fear of people that are different or

not normal. Because of disfigurement, because of race or

creed or whatever the reason is. Where there is bigotry and

prejudice, he helps break that down because he is a common denominator.

I am not an animal! I am a human being!

When broadcaster Ray Gosling died last November, there was a big

reaction, and not just in Nottingham where he lives, but across the

country. He has left behind a huge archive which is being curated by

Nottingham Trent University. He will be remembered for the controversial

last film he made, a film which ended a long and. As he edited this,

it felt right that raise should tell his own story in his... `` Ray.

Hello, can I have some money please? No?

I think at this juncture, we should pause for 0

I think at this juncture, we should pause for a moment.

These private sculptures are there to make us smile and that is fine by

me. Ray was a hoarder who kept

everything but it is good that he did. We see Ray also as a writer.

People know him as a broadcaster, a talking head, but we know him as a

writer, someone who wrote a huge amount.

I had 40 years of work, made 100 documentary films for television.

And I 0 documentary films for television.

And I championed stuff. I made 1000 radio programmes, of length and

substance and quality. Radio 4, and had it dumbed down. Then I wrote

when I was want to. We had one here from Gosling's travels, 1975. This

is a cancelled draft which shows he was a perfectionist. They are

portraits of places. I've not ticked over the big issues but I've not

dwelt on them. I've gone for the Smalltalk, the detail of day`to`day

lives. You know, as literary types would 0 0

lives. You know, as literary types would call that alliteration. It is

almost poetical the way he compiled those little pieces to talk to

Camara. What happened was instead of books, I went into verse more

collaborative form of writing for radio 0

collaborative form of writing for radio and the telly. To begin with,

about myself. I was born in 1939 and I spent all

of my childhood in Northampton. The East Midlands is my country.

Leicester and Nottingham, the two times I've grown around. But I've

got mad about, that I go home to. Leicester still is the best city.

It's more friendly than any other city in England. We knew what we

were doing. We knew we were the first ones breaking the whole thing

about telling `` being told what to do, what the boss tells you to do,

what the Church tells you to do. We were the first to do what we want to

do. I had to leave Leicester in the end 0

do. I had to leave Leicester in the end and I suppose I could have moved

anywhere but there still was the first time I really fell for. I got

mad about it. I got so attached to that time, I didn't want to be too

far away. Nottingham seemed to suit. 26 miles away, nor. That is where I

went. 0 26 miles away, nor. That is where I

went. It is such a different city. It's a metropolitan time. Greater

Nottingham sprawls towards I fought to keep loads of Saint Anne's. This

cabinet has got all the kind of community materials that Ray was

involved in so heavily in the 60s and 70s. There is the community

newspaper. There were some little bits we saved. There were some small

victories. This is one of them. I have come back now, after all those

years and I am really proud. A person who talked to everybody and

took an interest in people around him. Nobody was an important. You

get these people talking very softly. He has got to be a

professor, 0 softly. He has got to be a

professor, hasn't 0 softly. He has got to be a

professor, hasn't it? He looks like a professor. This is a livid cafe,

this. You look up. Look at the heavens. Full of daft ideas. Look

halfway up on public buildings. You will see there, two griffins. Full

statues. Dear diary... The BBC have definitely now said they want to

make a documentary about my fall. It is the first work I have had. It's

the best fig `` big scale work for two, three, four years. I want to

keep working, till my toes turn up and hopefully not paying too much in

taxes. Still, this one is quite a good 0

taxes. Still, this one is quite a good fit for me, you know. It is

ready. It's rather good. Not yet excavation mark I've got a lot more

work I want to try and do. Oh, right. Doctor came back! I said, he

has gone. Nothing more was ever said.

Tonight, the mercy killing which was all made up.

Ray Gosling admits he wasted police time but claims it was

well`intentioned. I did it because... I spoke to Ray before he

died and people thought he would not be bothered about that. We've got to

forget about that. We've got to remember his talent. Two decades, he

came out with stunning interviews of a level which most of us were not

capable of. Seeing them move and reach out and touch. It feels good.

Yes. It's what it's about. It's life, its spirit. It is a daunting

prospect because there is a lot of material but what we would like to

do is make what I am calling trails, really, that represent each

of his projects. We would like it very much to be made available for

people to see and to look at. It is very nice when you have been in one

place for so long. I'm glad I never went to London. I've done so much in

Nottingham. Ray Gosling's words on his own life

story. He will be missed. That is where we leave it this week.

Next time, rogue dealers and second`hand cars. We speak to a

driver who feels lucky to be alive. Hello, I'm Ellie Crisell with your

90 second update. There are more spending cuts on the

way. The Chancellor says ?25 billion worth of savings need to be made

after the next election. At least half of it is likely to come from

the welfare budget. Full details at ten.

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was caught doing near Whitby. He was banned from driving for a year and

ordered to do community