normanlambThe government has launched a consultation on strengthening the rights of people with learning disabilities, autism and mental health conditions to ensure that they get the best care possible.

‘No voice unheard, no right ignored’ will ask for people's views on a rage of proposed measures, such as the right to challenge decisions about their care, the right to be treated close to their home and family and the right to design and control their care and support.

The consultation, which will run for 12 weeks, aims to help people live independently with greater input, more rights and more control over their own lives.

Measures up for discussion include:

• Having a named professional in charge of sharing information with an individual and their family or carers, including information about their rights to challenge decisions about them and about their care

• Ensuring that local authorities and clinical commissioning groups provide enough community-based support and treatment services to keep people with autism and learning disabilities out of institutions

• Requiring a care plan, including a plan for discharge, within a number of weeks of admission to hospital

• Preventing people from falling through the gaps between services offered by the health system, for example, by making mental health hospitals responsible for patients' physical health as well

• Potential changes to the way the Mental Health Act applies to people with learning disabilities and autism

• Establishing shared funding to help people get out of the hospital system and expanding rights to personal health budgets to more people with learning disabilities or autism.

“Everyone must have access to the right care in the right place, in or close to their community,” said Care Services Minister, Norman Lamb. “They must be involved in the decisions affecting them and not ‘prisoners’ of a system, as they so often feel they are.

“That is why I have launched ‘No voice unheard, no right ignored’ to look at what legislative changes are needed to make sure people with learning disabilities, autism and mental health conditions are listened to and treated fairly.”

Change still may take years

However, in a joint statement Jan Tregelles, chief executive of Mencap, and Viv Cooper, chief executive of the Challenging Behaviour Foundation, warned that any change may still take years to be implemented: “We welcome the government’s recognition that a serious imbalance of power exists within the system, leading to the voices of individuals and their families often being ignored, with devastating consequences. We welcome the government’s commitment to address serious legal issues, such as whether autism and learning disability should constitute grounds for section, when neither are a mental illness. It is also welcome that the consultation seeks to clarify and strengthen the legal rights of people with a learning disability to challenge admissions and be supported to live independently in their local community. 

“However, whilst this consultation is important, where changes in the law are needed to deliver new rights, this could take years and is not guaranteed.

“And we must remember that on their own laws are only part of the solution, of making change happen. To ensure that the thousands of people with a learning disability and behaviour that challenges who remain trapped in the system of out-dated institutional care like Winterbourne View can return to their communities we must see – alongside the green paper – the development of local support and services and delivery of the closure programme promised by Simon Stevens when he gave evidence to the Public Accounts Select Committee.”

Professor Sir Simon Wessely, president of the Royal College of Psychiatrists (RCPsych), also welcomed the government’s consultation. “We have long been calling for an end to the excessive reliance on inappropriate institutional care, and it is vital that a clear strategy is now put in place to build up the capability and capacity of staff in community services to ensure people with learning disabilities can live as close to home as possible,” he said. 

“We also recognise the need to modernise the Mental Health Act with regards to the rights of people with learning disabilities and autism. The Mental Health Act – whether in relation to autism or any other condition – should only be used as a last resort and when there is absolutely no less restrictive alternative. In those extreme circumstances where people with autistic spectrum conditions do need to be detained under the Act, it is crucial that they are treated in a setting appropriate to their social and communication needs as well as being able to treat their mental condition due to the nature of autism.

“Given the scale of the task in improving services for people with learning disabilities and autism, there are still a number of obstacles that need to be overcome, including inadequate funding sources, deficient information systems, poor organisational structures and work practices, and ineffective local commissioning arrangements. RCPsych and its Intellectual Disability Faculty are committed to working closely with NHS England, as well as with patients and carers, to ensure long term, sustainable improvements to the care for people with learning disabilities and autism are delivered.”