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A new report from Mencap calls for an overhaul of support services for carers. Ruth Winchester reports.

(A full copy of the report is available online - see below)

"At the end of the day, people thought my sons were worthless, utterly worthless," said Ron Turnbull, after his wife was convicted of the manslaughter of their two profoundly disabled sons last year. "I thought they were very special."

His words will strike a chord with many parents looking after children who have profound and multiple learning difficulties. A new report from Mencap, 'No Ordinary Life', suggests that these families are having to deal with the multiple burdens of severe disability, public ignorance and hostility, and professional disregard for the value and individuality of their children.

Mencap figures suggest that the number of people with profound and multiple learning difficulties has increased during the past two decades from approximately 25,000 in 1985 to nearly 40,000 now - predominantly as a result of improved care for premature babies and better life expectancy for people with profound disabilities. The majority of these people are living at home with parents who provide most of the support they need. Many need round-the-clock care with basic tasks such as toileting and feeding, and may be reliant on technology such as tube feeding and oxygen.

But while parents offer this support unstintingly, the report's findings suggest that services for these families need an urgent overhaul. Carers routinely spend more than 18 hours a day caring, yet receive an average of just 20 minutes a day of outside help - help that they are sometimes expected to pay for. This is particularly galling for families whose caring may be saving the state £50,000 to £150,000 per year.

The report does highlight some very good practice. But it also highlights recurrent problems. Families are sometimes wary of using services outside the home because of bad experiences, including their children returning from respite or day care with dehydration and pressure sores. Others are desperate for help but are blocked by a lack of staff, an absence of essential equipment or unworkable hours. Many more have been assessed as needing a service but are still waiting for it to be provided.

Parents also report significant difficulties during the transition from children's services to adult services. One parent explains: "On the last day of Jodie's 17th year she was a highly dependent child needing a high level of input - respite, home care, social workers, equipment. The next day, her 18th birthday, she had nothing. Everything was withdrawn. She did not exist."

The report argues that services are rationed according to who is "at risk" - and that because neither those being cared for full-time by parents, nor the carers themselves, are regarded as at risk, other priorities dominate. And even when appropriate services do exist, families say it is an effort to find out about them, despite legislation requiring local authorities to provide information.

Unfortunately for this minority within a minority, things may not improve with the implementation of a white paper, published in March. While Valuing People: A New Strategy for Learning Disability for the 21st Century has been warmly welcomed, there are concerns that its emphasis on independence, autonomy and choice for the majority may focus attention away from those with the most severe disabilities, and result in the closure of some of the services these families value most.

Key findings of 'No Ordinary Life' report

- 60 per cent of parents spend more than 10 hours per day on basic physical care.

- Parents are woken up three times per night on average.

- 48 per cent receive no support from outside the family to help with their care.

- 78 per cent receive either no support or less than two hours per week to help them care at home.

- 48 per cent are dissatisfied overall with the services they receive.

- 80 per cent think the professionals are poorly or very poorly co-ordinated.

- 37 per cent have contact with eight or more professionals.

- 54 per cent of parents would like to see their grown-up son or daughter move from the family home to a high-quality alternative.

- 61 per cent have received no support in planning for that possibility.

A full copy of the 'No Ordinary Life' report can be downloaded by clicking here

Or from 020 7696 6900.