'Our children have been let down'

By Jane Elliott
Health reporter, BBC News

Their parents feel more could be done to help them

Julie and Steven Bangham feel they have been seriously let down by the services meant to provide care for their two sick children.

Both their children, Steven and Danielle, have congenital muscular dystrophy - a genetic muscle wasting condition present from birth.

They need 24 hour care and high-tech equipment to keep them alive.

But their parents say they only get a small respite package and provide most of the care themselves - Julie says her health is suffering under the strain.

At times it has felt like banging your head against a brick wall Stephen Bangham

"We have been badly let down by the system. A lot more can be done. Unless you say you are cracking up - nothing is done to help you," she said.

Husband Steven agreed: "At times it has felt like banging your head against a brick wall.

'More can be done'

"The powers that be always seem to talk the talk, but never seem to provide the care they say they will."

A survey by the Muscular Dystrophy Campaign of 900 of its members has found that the Banghams are not alone.

It reveals that families of children with rare illnesses are experiencing severe financial hardship and many are seeing lives drastically shortened due to a lack of specialist care.

The charity. claims patients are losing out in a postcode lottery and are being denied essential health and social care services.

Because of their care commitments, Steven and Julie Bangham who live in Edinburgh are both unable to work and say they find it difficult to pay the bills.

The couple also feel their children are being denied services that would make their lives more bearable such as physiotherapy and a suitable education.

"They have been let down by the system there has been a complete lack of support for them over the years," said their father.

"They don't get physiotherapy even though they both have muscular symptoms. The physio would keep their bones working and their muscles stretching," said Julie.

Steven added: "There is no neuromuscular centre in Scotland and the only time we see anyone with neuromuscular experience is during each child's annual review at hospital."

'Written off'

For a whole year the Banghams had to care every day and night for Danielle, aged 20, and Steven, aged 15, with one parent doing the day shift and one the night.

At night someone always needs to be awake to turn their children and to ensure that they are not sick which could result in suffocation.

Danielle is studying new media

Now the family has a care package, which provides four nights respite a week, but Julie and Steven say they had to fight hard to get this.

"Even when we have the care package at night one of us will need to get up if the carer needs help.

"We have to do everything for the children even opening a packet of crisps for them," said Julie.

Julie would love to go back to her old job making kilts but knows this is impossible because she is a main carer.

"We have no free time at all," said her husband.

"The only time we do get is the four nights when we have a carer and then we are on duty during the day," he said.

Survey results

Half of the families quizzed by the Muscular Dystrophy Campaign said that they had to provide their own wheelchairs and three out of four carers said they had no access to respite care.

Half did not see a specialist neuromuscular consultant.

The results come three years after the introduction of the government's national service framework for long term conditions in England, which promised to improve quality of life and independence for people living with chronic conditions.

Lord John Walton founder of the Muscular Dystrophy Campaign, said there needs to be better access to services across the country.

"Although there are some centres of excellence in Newcastle, London and Oswestry in other parts of the country the pictures is regrettably very different indeed, since services for patients with neuromuscular diseases are extremely different."

Essential services

Dr Michelle Eagle, consultant physiotherapist at the Newcastle Muscle Centre, said that services such as physiotherapy are vital for patients like Danielle and Steven.

"It is essential that we provide timely and ongoing physiotherapy for patients with neuromuscular conditions."

And she said the problem was particularly acute for older children transferring to adult services.

"Adults with an acute chest infection or who require acute rapid intervention, for example following a fracture, may not be seen quickly enough or for long enough to ensure that they regain their ability."

A spokesperson for the Department of Health said the national service framework had a 10-year implementation programme, with flexibility for NHS organisations to set the pace of change locally to take account of local priorities.

"The Department has been working with a range of key stakeholders to identify and develop practical tools and advice that can help local services and organisations to deliver the NSF.

"This means that services for people with muscular dystrophy will progressively improve."