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Neurological care ‘not good enough’

Charity says 250,000 people with ME ignored in official statistics

Mark Gould

Monday, 19 March 2012

As experts get set to present evidence on long-term neurological health care to an influential committee of MPs this week, the government was today warned that the numbers of people suffering from neurological conditions has been grossly underestimated.

Action for ME – the UK’s leading charity for supporting people with ME (myalgic encephalomyelitis) – warned that the figures for individuals suffering from long term neurological conditions have been grossly under estimated as people with ME have not been included.

The Neurological Alliance - which represents seventy health groups – warned the care minister that there were already more than 200,000 people suffering from long term neurological conditions. This week the NA will present evidence to the influential House of Commons Public Accounts Committee.

A study published last month by the National Audit Office highlighted delayed diagnosis, poor information, uncoordinated follow-up care and variable access to services regionally as all contributing to burgeoning problems for the NHS’s future care of neurological conditions.

“ME currently affects 250,000 adults and children in the UK,” said Sir Peter Spencer KCB - chief executive of Action for ME, “and no other illness has such a devastating impact on so many people but has so little money spent on scientific research or the provision of specialist healthcare.”

Care services minister Paul Burstow agrees that more must be done” "We know that care for people with neurological conditions is not good enough and we must do more”.

"It is clear that too many people are not getting personalised support to suit their needs."

The Minister added that government was considering in investing in services like Telehealth to individualise long-term care.

Action for ME has advised Mr Burstow on the problems encountered by ME patients but were told that the decisions on providing their healthcare had been delegated to local healthcare commissioners.

Sir Peter Spencer said: “During my 38 years in the Royal Navy I had a very clear understanding that delegation of a task did not ever relieve me of the responsibility for seeing that it had been properly executed. The same principle must be applied to Ministers. Otherwise it becomes what is known in all three armed services as ‘sloping shoulders’ or simply passing the buck.”

“ME is a neurological illness that has been neglected for far too long. It must be included in the government’s plans for a general improvement in the care of people with long term conditions and this will require much more than investment in Telehealth,” he said. 

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