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Understanding of Parkinson’s in hospitals ‘woefully inadequate’

Almost half of inpatients with the condition not getting regular access to drugs they need, warns charity

Caroline White

Tuesday, 08 April 2014

The understanding of the medication needs of patients with Parkinson’s disease is “woefully inadequate” among hospital staff, warns a leading charity.

Almost half of people with the condition are being denied regular access to the drugs they need to keep their condition under control while in hospital, says Parkinson’s UK.

The findings are based on an online YouGov survey of 3,630 people, commissioned by the charity in March. Some 2,028 respondents had Parkinson’s disease; 1,602 were family and friends of those with the condition.

Understanding of Parkinson’s among hospital staff is “woefully inadequate,” says the charity, which points out that some people with the condition need to take more than 10 daily tablets at specified times of the day just to be able to move or communicate with those around them.

Over a third (35%) of survey respondents said that hospital staff didn’t understand the importance of giving/taking medication for the condition on time.

Almost 6 out of 10 (59%) of those who experienced these problems said this had had a significant impact on their health.

"Our research confirms that hospital – where people with Parkinson's should feel safest – can actually be the most dangerous place for them to be,” explained Steve Ford, the charity’s chief executive.

"Being admitted to hospital can be difficult enough, but when that is coupled with the fear and uncertainty of being deprived of your drugs – it can become unbearable,” he added. "Time and again people tell us that they leave hospital with their Parkinson's in a far worse state than when they went in.”

Over two thirds of respondents said they felt increasingly anxious while in hospital because of the difficulties they faced getting their medication.

Almost 4 in 10 (37%) of those who were unable to take their own medication found hospital staff were unhelpful in making sure medication was given on time, resulting in nearly three quarters of respondents (71%) saying they felt more anxious at the prospect of having to go into hospital again.

"Nurses tell us they receive an hour, at most, of specialised Parkinson's training and this fundamental lack of education has resulted in people with the condition being so terrified by their previous experiences in hospital that they smuggle in their medication," said Ford.

"One of the ways for the NHS to tackle this is to allow people with Parkinson's to take their medication themselves – in fact around 70% of hospitals and health boards across the UK have a system in place that would allow people with Parkinson's to do just that, yet it is clear that these processes simply aren’t being implemented,” warned Ford.

Information obtained by the charity through a Freedom of Information Request in October 2013 to 186 NHS trusts and health boards, showed that 130 out of the 163 who responded, said they had a policy in place to enable Parkinson’s patients to take their own medication.

"Contrary to popular belief, Parkinson's doesn't just makes a person's hands or arms shake, there are a myriad other severe symptoms,” he added. “For people with Parkinson's to continue to fight such titanic battles just to get their medication in hospital is plainly wrong.”

The charity is urging hospitals across the UK to work with them to find out about the importance of timely medication and to take advantage of the free education and resources readily available to them.

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