A cystic fibrosis sufferer from Kent who had a double lung transplant just after Christmas following a four-year wait has died at the age of 20.

Jessica Wales, from Westgate-on-Sea, received the donated organs in an “11th hour” operation through the night at Harefield Hospital on 27 December.

Her fight for life had touched many people, including the Prime Minister’s wife and pop singer Natalie Imbruglia.

She died on Tuesday night after her condition deteriorated.

A statement from the charity Live Life then Give Life said she had shown “great courage and determination, inspiring people across the country through her relentless campaigning and upbeat attitude”.

Twitter campaign

“Jess was not only a valued Live Life then Give Life advocate but also a great friend to many and we offer her family our sincere condolences at this sad time,” the statement added.

“We will continue to campaign for all those who wait for an organ transplant and, whilst not every outcome will be what we would wish, we hope that one day all those who need a transplant will get it when they are fittest and it is most likely to have a good long-term outcome.”

A campaign to raise awareness of the need for organ donation coupled with Ms Wales’ fight for life won the support of Sarah Brown, the Prime Minister’s wife, in a Twitter campaign as well as the pop star Natalie Imbruglia, who headlined a concert for her last October.

Speaking in the days following her double lung transplant, Ms Wales’ friend Sarah Milne said: “Jess’s story has touched everyone who knows her.”

The 10 years that Anna Rayner spent on incap­acity benefit (IB) passed in a haze. Signed off work by her doctor after a nervous breakdown, she was under no pressure to think about returning to employment, and she says she felt her self-confidence shrivelling away.

“I tended to avoid mentioning that I was on incapacity benefit to people I didn’t know well,” she recalls. “It is something that’s very hard to admit to. It makes you feel like you’re a failure. I think people see claimants as lazy. I was going nowhere, and I felt guilty about it.”

Rayner, 41, was eased back into the job market two years ago, when she set up her own business as a complementary ­therapist. It was a progression made possible only with the intensive assistance of her local job centre, a community support centre and a welfare-to-work organisation.

Policymakers should take note of her experiences, because Rayner represents a new breed of modern IB claimants far removed from the stereo­typical image of middle-aged, male, ex-industrial workers. If officials are to ­succeed in their drive to reduce the numbers of people claiming these ­benefits, they will need to tailor their strategies more directly towards the needs of women such as Rayner.

A study from Sheffield Hallam University, published this week, shows that the number of women on IB has soared since the early 1980s, rising more than threefold from 350,000 to 1.1 million, so that there are now almost as many working-age women on incapacity benefits as men.

The findings of the Women on ­Incapacity Benefits report will make essential reading for those in this and future governments charged with cutting the ballooning IB bill, which the Department for Work and Pensions (DWP) places at about £6.5bn annually, but which academics estimate rises as high as £14bn when all the associated benefits, such as housing benefit, are factored in.

Employees in the benefits advice ­sector have been aware of the changing profile of this group for many years, but the trend has been little understood. The ­researchers – led by Steve Fothergill, a professor in Sheffield Hallam’s centre for regional economic and social research – provide for the first time detailed analysis of the reasons behind the shift.

Female factor

Fothergill says: “It has long been accepted that in the 80s and 90s, job losses from industries such as coal, steel and ­engineering pushed many men on to ­incapacity benefits. This was characterised as a male problem. The high numbers of women claiming incapacity benefits in the same places had been a puzzle because job opportunities for women have mostly been increasing.”

Like men, the majority of women who claim IB (60%) tend not to have any ­qualifications and their previous work experience is primarily in low-grade ­manual jobs; some 40% have been out of work for more than 10 years.

The researchers found no evidence that women across the country were becoming sicker as a whole, and therefore more in need of IB. The increase was in part the consequence of growing numbers of women in the workforce as a whole, and in part a manifestation of “hidden ­unemployment”, they concluded. Where jobs are relatively readily available – in the south-east, for example – the number of claimants is lower. Where there are few jobs to be found, more people are directed towards this benefit. The researchers ­estimate that 430,000 of those women on IB could be expected to be in employment in a genuinely fully employed economy.

The rise is also attributed to a new ­blurring of the lines between typically male and female employment sectors. “Miners and steelworkers who were made redundant in the 80s and 90s were often reluctant to take what they considered to be ‘women’s jobs’,” Fothergill says. However, their sons have not had the same choice, and more men are now ­competing for the same jobs as women. “One of the long-term consequences of job losses among men has been to push more women out of the labour market and on to benefits,” Fothergill says. “Unemployed women with poor skills and poor health have ended up on incapacity benefits.”

Only a quarter of these women say they would be unable to do any sort of work, the report found, but just one in 20 are actively looking for work.

Historically, Fothergill argues, IB has been an attractive concept from almost everyone’s perspective. It suited the government, because it acted as a convenient way of hiding unemployment, and suited employers “because it has absolved them of the responsibility of hiring people who are less than totally in the best health”.

It has also suited claimants, Fothergill adds, because it is not means-tested, and so recipients who have working partners have been better off than they would be under jobseeker’s allowance.

The sickness benefits system is currently undergoing radical reform, as claimants are gradually shifted on to the new employment and support allowance (ESA), which was launched in 2008. A DWP spokeswoman, says it introduced ESA “to ensure that no one – man or woman – gets left behind to a life on benefits”. IB claimants are still not required to go through as many hoops to receive their money as people claiming income support.

The study recommends a two-pronged response from the government: ­”sustained and intensive” support to help these women back to work, as well as physical and often mental rehabilitation. “These numbers will not be brought down just by hauling people in for work-focused interviews,” Fothergill argues.

The report also points out that since claimants are concentrated in areas of high unemployment, there is an urgent need for economic regeneration. “Unless there are jobs for these people to go to, we are not going to see a decrease in the numbers of people on incapacity benefit,” Fothergill says.

Given the harsh economic climate, the report questions the wisdom of extending compulsory back-to-work ­preparation schemes, in the light of the “often ­formidable obstacles to re-employment”.

Abi Levitt, marketing director of Tomorrow’s People, a charity that works with long-term unemployed people to get them back to work, says staff are seeing equal numbers of men and women on sickness benefit joining their motivation and confidence-building sessions. “We don’t take a different approach for women, she says. “The key issue for both women and men is loss of confidence.”

Rayner believes that she would never have had the courage to move off these benefits and into work without the support of a disability adviser at her local job centre, Milun Women’s Centre in Leeds, and assistance from welfare-to-work organisation A4e. “It’s quite a scary step to take, particularly when you don’t feel very confident, and there is a temptation to stay safe by doing nothing and remaining on benefits,” she says.

The decision to set up her Ray of Light holistic therapies company has improved her finances only modestly, but the step has given her a new sense of fulfilment. She says: “I feel that I have a sense of purpose in my life.”

A man has pleaded guilty to murdering a disabled 62-year-old Essex woman as she sat in a car outside her home.

Jennifer North, also known as Jennifer Macaree, was stabbed in her Vauxhall Corsa in Hadley Grange, Harlow, in the early hours of 28 February 2009.

Scott Riley, 26, from Parsonage Leys in Harlow, admitted her murder at Chelmsford Crown Court earlier.

Riley was remanded in custody and will be sentenced at a later date, which has not yet been fixed.

Ms North was found in the car and taken to Princess Alexandra Hospital where she died a short time later.

Det Supt Tracy Hawkings said: “To this day Scott Riley has not given any reason why he stabbed Jennifer North.

“She was a disabled woman who would have been completely incapable of defending herself against such a frenzied attack.

“Her murder has left her family with many unanswered questions and without a much-loved mother, nan and great-nan.”

Six members of a Tyneside syndicate are celebrating after winning a £10m double rollover National Lottery jackpot.

The group, made up of friends who used to meet at the Irish Centre in Newcastle, bought five lucky dip tickets for the New Year’s Eve draw.

They include partially-sighted Julie McGregor, 40, who hopes to spend some of her winnings on an operation to improve her vision.

Vodpod videos no longer available.

Two genes that have a strong connection to a spine-fusing type of arthritis have been identified by scientists.

Ankylosing Spondylitis (AS) can lead to people becoming fixed in a bent position looking at their feet.

The two genes are involved in inflammatory processes in the body and could help the development of a treatment for the condition.

A charity said the findings of the experts at Oxford, the US and Australia were “a long-awaited breakthrough”.

Current treatments only relieve the symptoms of the disease with physiotherapy and painkillers although some patients are being given an antibody treatment which costs £10,000 a year.

An international consortium of scientists led by Oxford University, the University of Queensland and the University of Texas, carried out a genome-wide study of 2,053 people with AS and 5,140 matched controls.

Inflammatory pathways

The study, published in Nature Genetics, found six regions of the genome that were associated with AS – the two strongest associations were with genes called ERAP1 and IL23R.

There are many theories as to what triggers this condition but understanding which genes are involved is a major step forward which could lead both to new treatments but especially earlier diagnosis which is badly needed in ankylosing spondylitis Professor Alan Silman Arthritis Research Campaign

ERAP1 is involved in important pathways in the body that are thought to have roles in controlling inflammation.

IL23R has also been implicated in psoriasis and inflammatory bowel disease, other conditions that also involve inappropriate inflammatory responses.

Lead researcher Professor Paul Wordsworth said: “We knew there was a strong genetic component to this disease, and we now have the foundation we need for future research to pin down the genetic causes of this condition.

“Cheaper or curative alternatives are a pressing need for this debilitating disease.”

ANKYLOSING SPONDYLITIS AS is an inflammatory type of arthritis that affects up to 200,000 people in the UK and is a significant cause of work-related disability It typically starts to cause problems for people in their 20s It affects the spine, resulting in progressive stiffness, loss of movement and pain as the disease develops It affects the spine, resulting in progressive stiffness, loss of movement and pain as the disease develops. Treatment involves physiotherapy and pain killers and some sufferers are being given new antibody therapies that are effective in suppressing the symptoms but cost around £10,000 per year

Professor Alan Silman, medical director of the Arthritis Research Campaign, which co-funded the research, said the discovery of the six new genetic regions in AS was a long-awaited breakthrough in genetics research.

He said: “There are many theories as to what triggers this condition but understanding which genes are involved is a major step forward which could lead both to new treatments but especially earlier diagnosis, which is badly needed in ankylosing spondylitis.

“Some patients can wait up to a decade to be properly diagnosed.”

Professor Silman said the research had only been enabled by available new technology which had allowed the investigation of such a large number of genes.

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UK scientists say they can find no proof that a particular virus is the cause of chronic fatigue syndrome (CFS) or ME, contrary to recent claims.

The Imperial College London team say they want to share the findings as some patients are pinning their hopes on drugs to fight the virus called XMRV.

They analysed blood samples from 186 patients with CFS and found none had the virus, PLoS One journal reports.

Experts said the latest findings would be a bitter disappointment to many.

They said more trials were under way and when these report in coming months, scientists will be able to draw more firm conclusions.

Work in the US, published in Science, had found the retrovirus in 68 of 101 CFS patients.

The UK team say the conflict between the two studies might be down to differences between the patients enrolled or the way the research was conducted.

We need to be extremely cautious until we know more Dr Charles Shepherd The ME Association

Or there might be different geographical types or strains of XMRV.

Regardless, they say potent antiretroviral drugs should not be used to treat CFS because there is not enough evidence that this is necessary or helpful.

The drugs may do more harm than good, they say.

Professor Myra McClure, one of the Imperial College London investigators, said: “We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK.”

She said they had used extremely sensitive DNA testing methods, called polymerase chain reaction, to look for the virus.

“If it had been there, we would have found it.”

‘Disappointing’

Co-author Professor Simon Wessely said the findings did not invalidate all previous research, some of which has shown that CFS can be triggered by other infectious agents, such as Epstein Barr Virus.

ME FACTS Causes chronic fatigue and muscle pain Impairs immune system Does not improve with sleep Affects more women than men A controversial condition that some have doubted as a genuine physical illness

The charity Action for ME said it was disappointing to hear about these findings, but said no single small-scale study could be conclusive.

Dr Charles Shepherd, of The ME Association, said it was important to remain open-minded.

“We need to be extremely cautious until we know more. There has been enormous interest in this from patients.

“Some have been led into believing the cause and a test has been discovered and that treatment is just round the corner and that is not the case.

“Over the next few weeks and months we will have more results and then we can come to a conclusion.

“If it turns out that XMRV is important, we will have to start looking at whether it is worthwhile testing for it and treating it.”

In a statement, the charity Invest in ME said the original study was of the “highest quality”, and that much more work was required before any firm conclusions could be drawn.

My congratulations to, among many others, these special people who have recieved New Years Honours for reasons related to disability and DisAbility:

Susan Banton, who founded the charity Steps in 1980, which now offers help and support to thousands of families and individuals with lower limb disorders, recieves an MBE.

There is a CBE for Christopher Cohen, former Chairman of the Athletics Sports Assembly Executive Committee at the International Paralympic Committee and the recognised world authority in disability athletics.

Robert Douglas Greig, Chief executive of the National Development Team for Inclusion, also recieves a CBE for services to People with Special Needs.

The list is long and complicated, so I’m sure, and I hope, that there are some others who have recieved honours for similar reasons. If you know of anyone I’ve missed, please name them in the comments below.

The number of people having a limb amputated because of type-two diabetes has risen dramatically in England, a study shows.

Between 1996 and 2005, the number of below-ankle amputations doubled.

But, at the same time, the number of amputations in people with type-one diabetes dropped, Imperial College London researchers found.

A charity said more early diagnosis was needed, as type-one diabetes could go undetected for more than 10 years.

The number of people diagnosed with type-two diabetes had increased greatly in the past decade, which could partly explain the findings, the researchers said.

In the UK, 2.35 million people have type-two diabetes, which is caused by the body not properly responding to the insulin it produces, and is often a result of lifestyle factors such as obesity.

DIABETES AND AMPUTATION Type-one diabetes is caused by the body failing to produce insulin Type-two diabetes accounts for 90% of cases and is caused by the body not responding properly to insulin or not producing enough Both types can impair blood flow to the feet People with diabetes can also suffer nerve damage and might not immediately notice a problem If left unattended a small injury could develop into a hard-to-treat ulcer that could become infected, leading to the need for amputation

Along with complications such as heart attacks and strokes, people with diabetes are far more likely to develop foot problems, including ulcers, which can become infected and lead to gangrene.

Writing in the journal Diabetes Research and Clinical Practice, the researchers said the number of the most major amputations, above the ankle joint, had risen by 43%.

And the average age of those having above-ankle amputations fell from 71 to 69 years, which followed the pattern of people being diagnosed younger, they said.

More men underwent amputations than women, a gap that widened during the 10-year period.

Study leader Dr Eszter Vamos said they had expected to see long-term complications of diabetes rising to some extent because the number of people diagnosed with the condition had increased.

“But at the same time there is very strong evidence that with a multidisciplinary team approach you can prevent up to 80% of the amputations.

The findings of this study are especially interesting because they indicate a particular rise in the number of type-two diabetes related amputations Sara Spiers Diabetes UK

“It highlights the importance of frequent foot checks and that it is very important to get glycaemic control and blood pressure and cholesterol control.”

Diabetes UK care manager Sara Spiers said there were about 100 diabetes-related amputations each week in the UK.

“The findings of this study are especially interesting because they indicate a particular rise in the number of type-two diabetes related amputations,” she said.

“This rise could be for a number of reasons, including type-two diabetes not being diagnosed early enough, people not getting the education they need to manage their condition effectively, and swifter treatment of foot problems, meaning people are more likely to have an amputation than die because of foot ulcers.”

She added more early diagnosis was needed, as the condition could go undetected for more than 10 years and most people already had complications when they were diagnosed.

Scientists have produced evidence that self-awareness is a big problem for people with autism.

Sophisticated scans showed the brains of people with autism are less active when engaged in self-reflective thought.

The findings provide a neurological insight into why people with autism tend to struggle in social situations.

The study, by the University of Cambridge, appears in the journal Brain.

Navigating social interactions with others requires keeping track of the relationship between oneself and others Michael Lombardo University of Cambridge

Autism has long been considered a condition of extreme egocentrism.

But research has shown the problem is people with the condition have trouble thinking about, and making sense of, themselves.

The researchers used functional magnetic resonance scans to measure brain activity in 66 male volunteers, half of whom had been diagnosed with an autistic spectrum disorder.

The volunteers were asked to make judgements either about their own thoughts, opinions, preferences, or physical characteristics, or about someone else’s, in this case the Queen.

By scanning the volunteers’ brains as they responded to these questions, the researchers were able to visualise differences in brain activity between those with and without autism.

They were particularly interested in part of the brain called the ventromedial pre-frontal cortex (vMPFC) – known to be active when people think about themselves.

The researchers found this area of the brain was more active when typical volunteers were asked questions about themselves compared with when they were thinking about the Queen.

However, in autism this brain region responded equally, irrespective of whether they were thinking about themselves or the Queen.

Researcher Michael Lombardo said the study showed that the autistic brain struggled to to process information about the self.

He said: “Navigating social interactions with others requires keeping track of the relationship between oneself and others.

“In some social situations it is important to notice that ‘I am similar to you’, while in other situations it might be important to notice that ‘I am different to you’.

“The atypical way the autistic brain treats self-relevant information as equivalent to information about others could derail a child’s social development, particularly in understanding how they relate to the social world around them.”

Dr. Gina Gómez de la Cuesta, of the National Autistic Society, described the study as “interesting”.

“We know many people with autism do want to interact with others and make friends but have difficulty recognising or understanding other people’s thoughts and feelings.

“This research has shown that people with autism may also have difficulty understanding their own thoughts and feelings and the brain mechanisms underlying this.”

When Sam Blyth lost his eyesight his mother felt her worst fears were confirmed.

For weeks she had been going backwards and forwards to the GP saying he was ill.

Sam complained almost constantly that his head hurt, but Sandra said no-one seemed to think he was as ill as she feared and put his increasingly distressing symptoms down to a heavy cold.

“He had a cold but as soon as that went he started complaining of headaches and was always pointing to the same place,” she said.

Painful headaches

“Being a mum I knew straight away there was something wrong.

“He had never complained of a headache before and they just seemed so severe.

The specialist did say he has time on his side and if they get him started on the treatment then hopefully they can try to keep the MS at bay Sandra Blyth

“The pain was so bad the headaches would wake him up during the night.

“I went to the doctor about four to five times and they said it was just his cold and sent him away.

“I said it was not normal.”

On 3 March this year Sam became much worse.

“He started screaming that he could not see,” said his mother.

“I took him to casualty, burst into tears and said: ‘I think he has a brain tumour’.

“I said I was not leaving until I saw a paediatrician.”

MS causes damage to nerve cells

The doctors took bloods and a CT scan and decided that an MRI (magnetic resonance imaging) scan was needed.

Sam was then sent from his home in Dumfries and Galloway to Edinburgh where doctors diagnosed a condition called acute disseminated encephalomyelitis (ADEM).

It is an inflammatory disorder, similar to multiple sclerosis (MS), but only strikes once, and up to 75% of patients make a full recovery.

“We were jumping for joy, it was a miracle, our darling boy was going to be OK and he would be with us forever,” said Sandra.

Relapsed again

He was given steroids and recovered, but within months started showing worrying symptoms again.

At the age of just five the Blyths were told Sam had MS.

Dr Evangeline Wassmer, consultant paediatric neurologist at Birmingham Children’s Hospital said a lengthy delay for a diagnosis, like that experienced by Sam’s family, was not unusual.

“It is quite common that a diagnosis should take so long and that is because there are lots of other things that the MS can look like in children,” she said.

“The criterion used in adults is not always as helpful in paediatrics.

“Paediatric MS is rare: we don’t know the exact number of cases, but there could be about 45-300 children a year in the UK diagnosed with MS, probably on the lower side.”

Dr Wassmer said delivering a diagnosis to the parents of children like Sam was always distressing.

MULTIPLE SCLEROSIS It is thought that 100,000 people in the UK – about one in 600 – have been diagnosed with MS MS affects more women than men (by a ratio of 3:2) with symptoms usually becoming apparent in young adults (between the ages of 20 and 40) even though a firm diagnosis might not be made for many years The youngest known cases of MS are just five years old but it is relatively rare for children to be diagnosed, although this is increasing year on year

“We think the disability is a slower process for those diagnosed as children,” she said.

“About 50% will need help with walking by the time they are 40.

“I find it devastating to tell them at 12 that by the time they are 40 they will have mobility problems.”

Sandra said the whole experience had been bewildering.

“I never thought children got MS,” said Sandra.

“I always thought it just affected adults in their 40s. I never thought he would have MS so soon or young, maybe when he was an adult but not at five.

“They don’t know what his future is – we have to take each day as it comes.

“He is on beta interferon injections three times a week and he is on steroids.

“It is just a case of time will tell. The specialist did say he has time on his side and if they get him started on the treatment then hopefully they can try to keep the MS at bay.”

A disabled man choked to death after becoming trapped in a mechanical hoist which failed as he was using it to get into bed, an inquest has heard.

Michael Powell, 54, who was paralysed in a motorbike crash, became tangled in the hoist at his home in Newport and had no way of calling for help.

The hoist should have been inspected a month before his death on 2008. The council said a review was under way.

The jury at Newport coroner’s court returned a verdict of accidental death.

A post-mortem examination showed Mr Powell died from positional asphyxia and the effects of drinking alcohol. He was two-and-a-half times the drink-drive limit.

Mr Powell was trying to lower himself into bed when the hoist failed, either because of a loose connection or when a handheld controller became loose and fell to the floor.

He had no way of calling for help, and was forced to try to pick the controller up himself.

Mr Powell would have been panicking and goodness knows what was going through his mind David Bowen, coroner

Jeremy Ferraira from the Health and Safety Executive (HSE) said Mr Powell became trapped in the sling while trying to retrieve the controller.

He gave evidence that the controller was in a “poor condition” and fell from the flex attaching it to the system.

He added: “There was a significant risk the hand controller could inadvertently drop to the floor while Mr Powell was in the hoist.

“It’s most likely the hoist malfunctioned because the controller was dropped.”

Mr Powell’s brother Nicholas found the body suspended in the frame when he went to his home the following day after being unable to make contact on the phone.

Coroner David Bowen promised to write to Newport council asking for lone users of similar hoists to be given neck pendants so they could call for help in an emergency.

He said: “Newport Council should carry out an immediate assessment of all disabled patients who have use of hoists such as this without the assistance of carers to ensure they are supplied with some emergency means of summoning help.

“It seems to me that if Mr Powell had one of these emergency buttons he could have summoned help. He had no means of such help at all.”

He added: “Mr Powell would have been panicking and goodness knows what was going through his mind.”

Stress

The inquest heard Mr Powell, a former carpenter, was left in a wheelchair after a speedway crash in Weymouth in 1975.

He was a “fiercely independent” man who preferred to live alone in a bungalow following his divorce in 2002.

He had track hoists installed in 2000 to help him get in and out of bed after 25 years of moving himself manually put too much stress on his shoulder.

The model he used was supposed to be operated by a carer, the court heard.

In a statement, occupational therapist Sarah Williams said: “Mr Powell refused all offers of care.

“He was very happy with the hoists when they were installed as they allowed him to remain as independent as possible and, most importantly, remain in his own home without carers.

“He was assessed as independent and safe in his ability to use the slings and hoists.”

A Newport Council spokeswoman said: “A review is already under way relating to people who live alone and are supplied with equipment such as hoists or bath lifts.

“We will await the coroner’s recommendations and consider any further action required.”