Campaigners warn over ‘invisible’ patients

Patients suffering from serious illnesses including Parkinson’s disease, multiple sclerosis and epilepsy are “invisible”, campaigners have claimed.

In a report which surveyed nearly 7,000 people, the Neurological Alliance, representing 80 charities and other groups, uncovered a lack of provision and quality of care for millions of patients in England.

It found nearly three in five had experienced problems accessing services or treatment. It warned outcomes will “never be as good as they should be” until patients had quick routine access to care including specialist expertise.

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Arlene Wilkie, chief executive of the alliance, said there was too much variation in services.

She said: “For too long, people living with neurological conditions have been the ‘invisible patients’, often marginalised by a system that doesn’t understand their conditions or their needs. This has to change.

“Until commissioners give proper attention to neurology, taking a strategic approach to designing the best possible care pathways, too many people will miss out on the care they need.”

Sarah Vibert, of the Epilepsy Society, said the report had uncovered “significant problems”.

“The system must not fall apart; patients are being failed,” she said.