Annie urges NHS Scotland to act on the shocking findings which have been published in a report by Parkinson's UK Scotland.
If people with Parkinson’s don’t get their essential medication on time, they can become very ill, very quickly. In some cases it can be fatal. But when we looked at what is happening to people with Parkinson’s when they go into hospital in Scotland, we discovered systematic failures that mean that more than half of all doses of Parkinson’s medication are not administered within half an hour of the prescribed times.
People with Parkinson’s and their families tell us about the consequences – including people fearing that they are going to die, and being left unable to speak, move or swallow. People tell us about feeling powerless and terrified, in pain, confused and hallucinating. It can take weeks to regain control of Parkinson’s symptoms, and some people never recover fully.
Not surprisingly, our community has told us that this must change. We need NHS Boards to take action – and our recent report (this link will take you away from our website) calls for each and every NHS Board to commit to changing its systems to make sure that people with Parkinson’s get it on time, every time, when they are in hospital.
There are around 12,400 people with Parkinson’s in Scotland – a number which is set to increase by 20% over the next decade. And because the condition is complex, hospital admissions are common. About a quarter of people with Parkinson’s will be admitted to hospital at least once each year, some of them more than once. Typically people with Parkinson’s need to be in hospital longer than those without the condition – and poor medication management means people need even more direct nursing care, such as support with eating and drinking, turning and going to the toilet.
Once in hospital, systems are simply not in place to make sure that people with Parkinson’s get their medication on time. Many ward staff do not understand that Parkinson’s medicines are time-critical, and fail to identify that medication errors may be the cause of someone’s worsening symptoms. Astonishingly, medication timing errors are rarely reported or recorded – which means that learning opportunities that would enable Boards to develop better safeguards are routinely missed. These medication errors are causing real harm to people with Parkinson’s under hospital care, but are not being identified as adverse events.
People with Parkinson’s and their families tell us repeatedly about how hospital stays have made their symptoms worse, leading to longer hospital stays. In some cases, the consequences are devastating.
Here are just a few of the many comments that we’ve had from people with Parkinson’s:
- “I’m utterly dependent on getting my Parkinson’s medication on time but the hospital’s systems couldn’t accommodate this.”
- “Some staff had never been trained to understand the importance of timely medication.”
- “Health Boards and staff really need to realise the devastating impact that their failure to do a simple task has on patients and their families.”
NHS boards must act when people are harmed in Scotland’s hospitals. That includes making sure that ward staff understand that Parkinson’s medicines timings are crucial, and have systems in place to support administering medication on time.
NHS Scotland is rightly proud of the way that the Scottish Patient Safety Programme has implemented systems to protect patients from preventable harm – and we believe that Parkinson’s medication issues errors must be tackled in the same way. Parkinson’s UK Scotland calls on Health boards to adopt our report’s recommendations, and support their frontline staff to deliver safe care for people with Parkinson’s in hospital.
The solutions to this life-threatening problem already exist. They’ve been developed by hardworking and under-resourced Parkinson’s nurse specialists, doctors and pharmacists across Scotland. With around 215 people with Parkinson’s in hospital in Scotland on any given day, our overstretched nurse specialists can’t be on the ward every time someone with Parkinson’s needs their medication, and they shouldn’t need to be. Responsibility for ensuring that ward staff have the resources and systems they need to deliver drugs on time rests with Health boards. I call on those boards to take action and end this malpractice now. Parkinson’s UK Scotland will be glad to offer our expertise and support to help them to do so.
We know that medication timing is critical for some other conditions. We’d love to hear from any organisation who is interested in working in partnership with us to bring about change.
For advice, information and support, visit www.parkinsons.org.uk (this link will take you away from our website) or call our free, confidential helpline on 0808 800 0303.