A Carers Payment Scheme should be set up urgently so that carers can choose for themselves the type of help they need, says a report for the Carers National Association.

Almost one million people in the UK are full-time carers, providing at least 50 hours of free care a week and saving the NHS a lot of money.

"'We're in this together" gives first-person accounts of 27 families' experience of caring.

It is launched on Monday 7 June to mark the beginning of National Carers' Week.

Disabled children

In seven of the families parents looked after a disabled child.

Some children had been disabled from birth. The report says their parents said caring came as a "profound shock" to them as most were only in their 20s at the time.

Others had children who had developed a disability, such as multiple sclerosis, later in life.

Parents with more severely disabled children had to carry out intimate tasks like toileting.

Most families had established a routine which helped them deal with the pressures of caring.

But it also meant their days were fairly similar.

None of the parents thought about the future much and, if they did, it was usually with fear at what would happen to their child if they died or became ill.

Many spoke of their feelings of regret at lost opportunities for themselves and their children.

Some of the adult children said they resented having to rely on their parents.

Caring often had a big impact on the parents' relationship. In some cases, their relationship had become severely strained and in two cases it had totally broken down.

Partners

In 15 families a partner was caring for another partner. The average age of both was 54.

Most couples recalled with fondness and some sadness their lives before the caring relationship began.

Some carers had given up full-time work to do caring.

Carers whose partners were severely disabled and, for example, needed lifting, often suffered physical injuries as a result.

Carers of people with memory problems or dementia expressed intense loneliness.

Many people felt isolated from friends and some said they were exhausted from their responsibilities, which often involved night-time as well as day care.

Some couples said their relationship was based on love, while others spoke of their sense of duty and said they had thought about leaving their partner but would never do so.

Some relationships included a fulfilling and active sex life. In others, sex had been replaced by other forms of intimacy, such as holding hands.

Carers who were not able to be intimate with their partner expressed despair, loss and depression.

Parents

In five families, grown-up children were looking after parents.

Children were either unmarried or married daughters trying to balance a caring role with their relationship with their husband.

Some carers were proud they had not put their parent into a home.

In general, carers said support from health and social services was vital, but added that hospital discharge programmes sometimes ignored their role.

They said some health workers lacked awareness of what the caring role meant.

Carers need legislation to ensure they get the support they require, says the CNA

Experiences of social services departments varied. Carers most appreciated practical support which made their life easier, such as short-term breaks and disability aids.

They tended to express reservations about day centres and long-term breaks and found the benefits system too complicated.

The report says the National Carers Strategy, launched by the government earlier this year, will help give carers more support, but "it is only a start".

The researchers want regular assessments of carers' needs, more investment in short-term and emergency break schemes, one-stop shops for information and benefits advice and legislation to ensure carers receive support.

Co-author Saul Becker from Loughborough University said: "Supporting caring relationships is highly cost effective as well as a mark of a civilised and decent society.

"Adequate cash benefits and reliable, good quality health and social care, and housing services must go hand in hand if carers and their families are to be able to live their lives with dignity, security and freedom from poverty and social exclusion.