Tony meets Tony for a Big Conversation

FOR THE past 19 years, Tony Camp-Bell has cared for his wife Sue after she was cruelly struck down by Multiple Sclerosis. He knows first-hand how difficult it is to strike a balance in life between his responsibility for his disabled wife and his need to earn a living.

Sue is confined to a wheelchair and relies on Tony to help in every aspect of her care.

For the 61-year-old former legal executive, the so-called work/life balance has a particular resonance.

His experience led to Tony being picked as one of only six carers from around the country to take part in Tony Blair's 'Big Conversation' at 10 Downing Street.

Billed as part of the "biggest consultation known to mankind", the aim of the session was to capture the experiences and opinions of ordinary people who are trying to maintain a work-life balance and to discuss the many issues surrounding flexible working.

Tony said: "I was delighted to be given the opportunity to be part of the "Big Conversation" as I cannot stress enough the importance of flexibility when you are a carer. Many carers have vast amounts of experience that could be put to good use in a business environment and many companies are just not recognising this!

"I have absolutely no doubt in my mind that if I did not have such an understanding and supportive employer, I would not be able to have a regular job.

"It was really great to visit Downing Street. We were given lunch and then we broke into smaller groups to discuss the issue - while we did this Tony Blair came round and listened to what we had to say.

"They told us the information they gather during these sessions will help them put together their manifesto for the next election."

Working as a legal executive, Tony was made redundant seven years ago after 27 years in the business.

Faced with the prospect of finding a new job at an age where some businesses might consider that he should be retiring, he also had to contend with his wife's condition.

To his relief, Tony secured a job working at British Gas. Initially, he didn't feel any need to make a point of telling people that he was a carer.

"It's something that you just get on with really. It's a normal part of your everyday life," he said.

But as Sue's condition worsened Tony realised he could no longer work a nine to five day and he needed to have more flexible hours.

"My employer was very understanding. As a carer there is nothing worse than worrying about whether or not you will be able to keep job because of your responsibilities at home.

"I have been very lucky. I have flexible hours and if I am late getting in, I just make it up at the end of the day," he said.

Tony is one of approximately 150,000 people in Hampshire who is a carer - somebody who cares for a sick or disabled partner or relative.

Imelda Redmond, chief executive of Carers UK, said, "Every year, 2.3 million people become carers, around 80 per cent of whom will be of working age.

"Our research has shown that every year, carers have to give up work in order to care, at times because support is not organised in a way that enables carers to juggle work and care.

"We also know from our research that as soon as carers give up work, their income plummets."

Although the Camp-Bells do get some outside help, they have found it a battle to get support from social services, as resources for this type of help are limited.

The day would start with Tony getting Sue out of bed, helping her with her special health and hygiene requirements and giving her some breakfast. At lunchtimes, a home help would call to their home to prepare a snack for Sue while Tony was at work.

As a carer, Social Services had assessed that Tony needed three evenings 'off' each week. However, due to lack of resources/staff, Tony only actually gets two nights off each week.

Every night after they have eaten the meal that Tony has prepared, the couple start the expedition up the stairs to put Sue to bed.

From the moment Sue decides it's time for bed to the moment she actually gets into bed, it can take in the region of one hour 15 minutes. Unlike more able-bodied people, Sue cannot turn herself around in bed, so Tony needs to ensure that she is propped up and in the most comfortable position possible.

It is not unusual for Tony to snatch just five hours' sleep during the night.

This is always broken when he is woken in the early hours to tend to Sue and to ensure she is comfortable. Functioning at work the next day is no mean feat after very little sleep.

"Looking after Sue seven days a week can be extremely tiring both physically and emotionally. I was finding that I had very little time for 'me'.

"To try to ease this, British Gas agreed to altering my hours - I started working three days a week.

"On the Thursday and Friday, which I have off, Sue tries to give me some time to do my own thing and to recuperate.

"However, another plus point of having this extra time off is that I can also spend some quality time together with Sue," added Tony.