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Long term illness

Millions of people with long term neurological conditions have been promised improved care and treatment in a plan unveiled by ministers.

The framework focuses on illnesses such as Parkinson's, motor neurone disease and epilepsy, but will apply to other chronic conditions.

The national service framework (NSF) for long term conditions, published on Thursday, will be used as a benchmark on which to judge services, and outlines a range of "quality requirements" for NHS agencies.

Government Response: Department of Health

John Reid, secretary of state for health, said: "This NSF will make a real difference to the many millions of people living with painful and often debilitating long term neurological conditions by giving them choice in how their care is delivered with services that are planned around their needs.

"We recently launched the long term conditions model which will provide the structured care that will keep people out of hospital and in some cases, prevent premature death.

"This NSF goes even further by spreading best practice that responds directly to the needs of this group of people."

Stakeholder Response: NHS Confederation

Jo Webber, policy manager of the NHS Confederation, said: "This long term conditions framework will be specific to neurological conditions, and for too long they haven't received the attention they deserve.

"However, we hope that the NHS will also be able to use this framework as a blueprint for better treatment for all long term conditions.

"The most successful approach to tackling long term conditions is for all relevant organisations to work together, whether they are based in primary, secondary or social care, to ensure that patients receive smooth continuous care irrespective of who it is being provided by."

Stakeholder Response: Commission for Social Care Inspection

David Behan, chief inspector of the Commission for Social Care Inspection, said: "The commission gives a warm welcome to this new framework because it will provide the stimulus for developing better services to those with long term conditions and disabilities - a group that has not been a priority for service development up to now.

"The framework challenges health and social care organisations to change the nature of their relationships with people using the services - and their families and carers - who need as much choice and control as possible over the services that are there to support and help them.

"It is critical to the successful delivery of the framework that individuals receive care which is tailored to their individual needs."

Stakeholder Response: Disabilities Trust

A spokesman for the Disabilities Trust said: "The Disabilities Trust welcomes the publication of a national framework for long term conditions. Too often there is a tendency by the media and policymakers to focus almost exclusively on illnesses such as cancer, strokes or heart attacks.

"While this is obviously vitally important to those with such diseases, a great many people who use health and social services have long term illnesses or conditions, some acute, others more manageable and these needs can sometimes be marginalised within the healthcare debate.

"The trust itself manages a number of services across the country for people with post-acute acquired brain injury resulting from a wide range of causes that include road or workplace accidents, violent assaults or strokes.

"While the new NSF does not specifically deal with these conditions it is a welcome step forward in that it acknowledges the importance of tailored, joined-up services to tackle the needs of people with long term neurological conditions. We hope that this approach might be extended in due course to specifically include acquired brain injury.

"The emphasis within the NSF on genuinely joined-up services is crucial. In the case of people with brain injury it is essential that they are transferred quickly and smoothly from hospital settings to intensive post-acute rehabilitation provision where they can re-acquire fundamental life skills and then perhaps, in due course, move on to community or supported housing, regaining some valued independence.

"We believe, based on research we have conducted, that if such provision is on hand within a year of the initial injury it can make a huge difference to the future life chances and support needs of someone with this devastating condition.

"So health and social services need to work hand in hand to provide the structures and processes that enable such seamless transition to happen. This is of course far from easy.

"The government is also to be applauded for recognising the importance of individual self-management. Many people with long term illness become experts in managing their own conditions and its important that both the government and professionals are able to acknowledge this and integrate it within service planning."

Stakeholder Response: Help the Aged

Rachael Childs, policy officer at Help the Aged, said: "With an increasingly ageing population we can expect to see a rise in the number of older people living with debilitating long term conditions. The new NSF has the potential to make a real difference in enabling older people to live as full and independent lives as possible.

"We welcome the Department of Health's emphasis upon multi-disciplinary working and its focus on preventative services.

"However the test will be in the implementation of the NSF and ensuring that support and services are needs led, easily accessible and that older people have greater choice on how their care is delivered."

Stakeholder Response: Alzheimer's Society

Julia Cream, head of public affairs, said: "We welcome the development of a framework for people with long term conditions as people with dementia face a range of barriers in accessing good quality services.

"We would like to see the government commit adequate funding to the NSF so that the aspiration of better services can be realised.

"However, the Department of Health must also urgently tackle policies which discriminate against people with dementia.

"We are staging a mass lobby of parliament on March 16 to tell the government that we need to work harder to end discrimination. For example, we would like to see the National Institute for Clinical Excellence draft guidance on Alzheimer drugs overturned.

"The NHS can afford drug treatments which cost £2.50 a day and which significantly improve the quality of life of people with Alzheimer's disease.

"Secondly we would like to see the government end the appalling practice of charging people with dementia for help with eating, washing and using the toilet."

Published: Thu, 10 Mar 2005 15:51:11 GMT+00