Bursledon House Rehabilitation adolescent unit in Southampton
In January 2006 the shocking programme produced by Meridian ITV, showing the true story of severely affected people with ME, was publicised by Invest in ME. The response was phenomenal and IiME are hoping to work with Meridian to bring this to the UK, and the world.

And yet this wasn't an isolated case.

Read the following -

We made it to Dawn’s party yesterday,
We have only ever met Dawn’s Mum, Jo once before.

When we first met Jo, Dawn was being tube fed & weighed five stone.
Someone there mentioned yesterday that she no longer has the tube & it was obvious she weighed more now.
Jo took us in to Dawn’s darkened room to meet her, this gorgeous girl was lying perfectly still on a hospital type bed.
She whispered hello but couldn't raise her hand to accept a present, she whispered "not lying"
& Jo explained, Dawn thinks people must think Jo lies about having a daughter as no one ever see hers.
That was it; the poor kid closed her eyes so we came out.

This girl had been an in-patient at Bursledon House – an adolescent psychiatric unit where they “treated” kids with ME by sending them to the gym.

It is tempting to add comment to this state of affairs. But there is no need to add any comment.
Just read what was already in the public domain, about Bursledon House, and comments from their lead consultant a while back which were published on Co-Cure and elsewhere.

Bursledon  House -

NHS Combined Paediatric and Psychiatric Child and Adolescent Ward

Lead consultant: Dr Josie Brown

Charge nurse: Sister Davina Dean

Age range: 0 to 16

Days open: 5

Accept emergency admissions (i.e. within 24 hours): No

Day/out-patient facilities: Yes

From Southampton NHS -

Bursledon House is a residential and day unit for children or young people who have persistent and sometimes severe or complex physical and psychological problems.

Bursledon House is part of the Trust's Child Health Unit and is located on the Southampton General Hospital site in Tremona Road. It is open Monday to Friday, with inpatient facilities for 12 residential children and adolescents and six who attend daily. The age of those attending ranges from 0 -16 year olds.

Aims

The aim of Bursledon House is to provide a homely environment to allow suitable management of physical, psychological, educational and social needs, allowing children and young people to live suitably in a normal environment.

With support from Bursledon House staff, children, young people and their families are encouraged to become involved in their own or their child's care.

In working together, we recognise that adolescents, children and their families are unique individuals with a variety of different needs.

A key part of the assessment or treatment programme is keeping parents and children informed. Bursledon House team members are available to speak to parents either at a specific appointment time or when children are brought to the unit on Monday morning or before going home on a Friday afternoon

 

10 July 2004 - a story from News-Medical as reported in Co-cure

 

Children with chronic fatigue syndrome (CFS) who leave their beds, start to exercise and are supported by parents who acknowledge the psychological dimension of this debilitating condition, recover faster than children who are encouraged to give way to their symptoms.

Dr Josie Brown, a consultant child and adolescent psychiatrist with Southampton Primary Healthcare Trust, told delegates that a daily timetable, with regular exercise, and structured sleeping times for children with chronic fatigue syndrome was vital to recovery.

Dr Brown works at Bursledon House, a unit for young people up to the age of 17 run by psychiatrists and paediatricians and with a school on site.

"We discourage daytime napping, give them a graded exercise programme and introduce some time at school," said Dr Brown. "This is crucial to success and enables young people to get some kind of sense that they are in control of their lives, which would have spun out of control when they were admitted to hospital."

Children with CFS often woke at midday, snacked and cat-napped through the day, and went to bed late. They had little or no structure to their day, and this, said Dr Brown, compounded their symptoms.

Sleeping and resting only made matters worse, as with backache,. With each day spent in bed, 3 per cent of muscle bulk was lost, bones thinned and joints stiffened. Children fell behind in their schoolwork and lost both their friends and their confidence.

"It's important to break the link between the symptoms of chronic fatigue syndrome and fear of activity," said Dr Brown. "It can be a slow process - sometimes taking weeks or months - but there will be improvement."

While there are no randomised controlled trials that this graded exercise therapy works with children, there are two studies which show that it substantially improves measures of fatigue and physical functioning in adults with chronic fatigue syndrome.

Between 50-100 children per 100,000- two thirds girls to a third boys - come to the attention of doctors suffering from chronic fatigue syndrome, but experts believe many more are not seen by the medical profession.

Many parents believe that their child's condition was caused by a virus and that rest was the answer, Dr Harvey Marcovitch, a consultant paediatrician and a member of the government's working party on CFS told delegates. This rigid belief, and the idea that their child would get better only when a "cure" was discovered, was a barrier to recovery, he said. Children whose parents felt that the cause of their child's illness has a psychological element had a greater chance of recovery.

Professor Elena Garralda, a child and adolescent psychiatrist at Imperial College, London, agreed. She said it was important to give parents a clear diagnosis that underlined the fact that CFS had real physical symptoms and that it was not depression, anxiety, anorexia nervosa, school phobia, or psychosis.

Nevertheless, it did have a psychological dimension, and children with the condition were often perfectionists, setting themselves higher than normal standards for academic attainments and physical activity. She regarded it as a stress-related disorder, coupled with a real fear of activity. 

Invest in ME wrote to Dr. Josie Brown to clarify a few things. We received no response.

Meanwhile if any readers have any experiences please contact us.