People with Parkinson's are being subjected to 'frustrating and scandalous' standards of care in hospital new research from Parkinson's UK reveals.
From being forced to smuggle in medication to being subjected to shocking levels of drug deprivation by hospital staff, data commissioned to time with the launch of Parkinson's Awareness Week paints a deeply disturbing picture of life in hospital for those with the degenerative condition - with almost half (47 per cent) of people with Parkinson's denied regular access to the medication they need to keep their Parkinson's under control.
Medication is a lifeline for people with Parkinson's, with some people taking in excess of ten tablets a day as part of a strict regime just to be able to move or communicate with those around them. Almost six in ten (59 per cent) of those who did not have regular access to medication in hospital felt there was a significant impact on their health.
Far from being isolated incidents, almost seven in ten (69 per cent) people with Parkinson's reported experiencing increased levels of anxiety whilst in hospital because of the difficulties around getting their medication.
Understanding of hospital staff about the condition remains woefully inadequate; with over a third (35 per cent) of people with Parkinson's reporting that hospital staff had a poor understanding of the importance of giving medication for the condition on time - which can lead to catastrophic consequences.
Steve Ford, Chief Executive at Parkinson's UK, explains: "Our research confirms that hospital - where people with Parkinson's should feel safest - can actually be the most dangerous place for them to be.
"Being admitted in 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.
"Time and again people tell us that they leave hospital with their Parkinson's in a far worse state than when they went in. 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 use their wash bags to smuggle in their medication."
Worryingly, the research also revealed that almost four in ten (37 per cent) 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 seven in ten (71 per cent) people feeling more anxious at the prospect of having to go into hospital again in the future.
Bob Young, 66, from Blackpool was diagnosed with Parkinson's eight years ago. He takes medication four times a day to keep his Parkinson's symptoms under control. In November 2012 he went into hospital to have a growth on his kidney removed but had numerous difficulties getting the medication he needed on time.
"I deteriorated really quickly and after a week I was begging to come out. In the end I had to discharge myself. I just felt that no one understood how important it was for me to get my medication on time, if it didn't fit in with their system - tough luck.
"It was a nightmare situation - a real nightmare, especially when the hallucinations started. I still haven't really recovered from it at all, and things still trigger me now into reliving what an awful experience it was. I never made a complaint to the hospital just because I found it difficult to write down what happened, and just wanted to forget all about it."
Steve Ford continued: "One of the ways for the NHS to tackle this growing problem is to allow people with Parkinson's to take their medication themselves - in fact around 70 per cent 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.
"Taking medication on time can often feel like the last bit of control that people with Parkinson's have over their condition. Contrary to popular belief Parkinson's doesn't just makes a person's hands or arms shake, there are a myriad of other severe symptoms that leave people feeling powerless over their own bodies and, ultimately, their lives.
"For people with Parkinson's to continue to fight such titanic battles just to get their medication in hospital is plainly wrong. We hope that our campaign will equip all hospital staff with the right knowledge to deliver the improvements in care people with Parkinson's so desperately need."
Throughout Parkinson's Awareness Week (7-13 April), Parkinson's UK are urging hospitals across the UK to work with them to help put people with Parkinson's back in control of their condition, by arming themselves with basic information about the importance of timely medication and taking advantage of the free education and resources open to them.