Families in Cornwall tell Maria Ahmed about cuts to services.
"Oggy Oggy Oggy, Oi Oi Oi!" Carol Blakey sings, touching hands in a high five with her son Ryan. "We used to play this game before Ryan went into hospital. When he came out and he could still respond, I cried with relief," she says. Ryan, who is 24 and over six feet tall, drops his gaze to the wooden puzzles that he and Carol spend hours playing in their living room at their home in Cornwall. He holds a comfort blanket and sucks his thumb.
Ryan has tuberous sclerosis, a condition that causes internal tumours. His brain has so many tumours that it looks "like a grapevine." He also has epilepsy, severe autism and a mental age of around two years old. His epilepsy is so severe that he could die from a fit. Ryan is unable to speak. When he was born, he was given two years to live. "Every day is a bonus," Carol says.
Ryan was admitted to Budock hospital, near Falmouth, in Cornwall, twice for changes to his medication. His case is one of five that sparked an investigation that revealed widespread abuse of people with learning difficulties at Budock and supported accommodation run by Cornwall Partnership NHS Trust. The investigation by the Healthcare Commission and Commission for Social Care Inspection, caused outrage that is still reverberating among families like Ryan's.
"At Budock, Ryan's teeth were not cleaned and there was dried food on his face. His toenails were overgrown and he was slapping himself, rocking backwards and forwards, like a bear in a cage," Carol says. "Nobody did anything for him. The saddest part is that it could have been prevented."
Ryan also sustained a serious injury to his finger while in the hospital, but Carol has not been satisfied with the explanations given by the NHS Trust. She says she wants the truth about what happened to Ryan. "Although he can't speak, he has nightmares. I can tell from his face when something is wrong."
When Ryan came home after his second admission to Budock in 2002, he "shied away" from Carol, her husband Tom, and his sisters. Four years on, he still can't sleep alone. "Our personal life is non-existent because one of us has to sleep in his room with him. It can take four hours to get him to use the bathroom. I have to keep saying 'Ryan, it's only mum'," Carol says.
Carol, 61, and Tom, 64, do not go out except to take Ryan to hospital. A community nurse and a "brilliant" social worker help the family, but Carol says she has been unable to find the right services for Ryan. "He can't get on the bus to go to the day centre, because he gets worked up when he sees the bus. I think it reminds him of a time he went to hospital by bus."
She also believes local day centre provision does not suit Ryan. "They don't give people anything to do," Carol says. "In one centre Ryan went to, he was just left to walk around in circles." A residential home refused to take Ryan "because they said he was violent, although he would not hurt anyone." Carol has also been unable to obtain respite care for Ryan.
Her anger at the lack of support has been further compounded by Cornwall Council cutting some learning difficulties services. The council, which was criticised in the abuse inquiry for failing to manage procedures to protect vulnerable adults, is to make £3.6m cuts in adult social care (see panel).
Carol says: "It's appalling they want to cut services, when 99 out of a 100 families like ours in Cornwall are desperate."
At a coffee morning in St Austell, other carers are angered by the council's proposals and point to increasing problems in getting services.
Allister Walker and his wife Margaret, both in their sixties, say their daughter Fiona, 31, is totally dependent on other people, and worry that there are no plans drawn up for her future. "There is always the question of who is going to pay," Walker says.
He is also points out that when carers reach a pensionable age, they are no longer entitled to statutory carer's allowance, leaving many struggling. "Most parents over 60 don't get a farthing for what they do."
Such cases are not unusual, says Reg Broad, chair of East Cornwall Mencap, who has recently started the coffee morning to provide carers with support. "I know a woman in her nineties looking after her 45-year-old son with cerebral palsy at home who receives care just two hours a day. Respite care is rationed and new people are being put on a waiting list," he says.
Broad says there is insufficient care home provision in Cornwall. "In one home, four people whose parents died last Christmas are blocking beds, but there is nowhere to move them." He believes residential places available are totally unsuitable, while day centres are unable to cope with demand.
Walker says funding problems in Cornwall are linked to a failure of the NHS to transfer money into community services for people with learning difficulties. The abuse inquiry found that while the last long-stay hospital in Cornwall closed in 1995, people were not moved into the community but remained under the care of the NHS. As a result, the transfer of money from hospital budgets to community services for former long-stay patients did not happen.
"People have been deprived of money they were entitled to," Walker says.
Families are also concerned over a recent decision by Cornwall College to cut courses for people with learning difficulties who are over the age of 19.
Penny Blythe, who is a full-time carer for her sister Kathy, 45, who has Down's syndrome, says Kathy has lost her college place. "This is the third blow she has had in the space of a month, along with the threats to charge for day centre transport and remove services for people with low-level needs."
Kathy currently attends a day centre for five days a week. "If Kathy is assessed as having low-level needs she could lose the place. If she gets to keep it, she won't be able to afford the transport charge," Penny says.
"The only time I get for myself is when she is at the centre. I love Kathy, but we'll be like Siamese twins if she is at home all the time. It's disgraceful that the council has not considered the effect of these proposals."
Penny says she was not surprised when she heard about the abuse inquiry. "The level of care in Cornwall is not what it should be. My concern is what's going to happen to families like ours in the future."
When asked if she has heard of the government's Valuing People white paper for people with learning difficulties published in 2001, with its buzzwords of rights, independence, choice and inclusion, Penny looks blank. "So what if there is a government white paper?" she says. "It doesn't mean anything to us. I can't see that anybody values us in the slightest."
The Council's view
Cornwall Council says that the shortfall in its budget is because of inadequate government funding and pressures from an rising numbers of people requiring services.
Nigel Walker, Cornwall's executive member for adults, says that the council carried out an extensive consultation before coming up with the proposals. "We have done our best to come up with changes that will not put people at unnecessary risk or lead us to abandon our commitment to help people retain their dignity and independence."
The council says the changes mean that it has adopted the same criteria as most authorities in the country. For example, the introduction of a daily charge of £1.50 to cover transport to and from centres was in line with other authorities, and the £2.30 charge for meals is still among the lowest charges in the South West.
Learning difficulties: Cornwall families speak out': more interviews with families on how cuts to learning difficulties services in Cornwall are affecting their lives.