Parkinson’s is a much misunderstood condition, with 40 different symptoms including bradykinesia/slowness of movement, sleeping problems, hallucinations and loss of smell.
Every person with Parkinson’s has a different experience, but all have a strict medicine regime that is vital for keeping them healthy.
Aware of the need for more knowledge of the complex nature of the condition, the Parkinson’s Excellence Network from Parkinson’s UK set up a free learning hub for health and care professionals to help improve the quality of care for those with the condition. The Parkinson’s Excellence Network has just added to its suite of information with the launch of a new collection of courses.
The courses, which range from bite-sized to longer programmes, are job-specific for the health and care sectors, and include modules for care staff, nurses, doctors, speech and language therapists and pharmacists.
Helen Haggertay, a trainer from Consultus Care Training Centre, uses the courses to teach nurses and carers about the condition.
She said: “There are lots of reflections from people with Parkinson’s. It affects people so differently so that’s important to get across. When we get talking, carers say “I can see that in my client, but not that”.
“It’s the classic, preconceived idea that everyone with Parkinson’s has a tremor. Parkinson’s is not like dementia, which everyone seems to know more about. If people don’t have any experience with it, it opens their eyes to the condition.
“It’s also looking at the changes in the individual. A person may be able to do something one minute but may not the next day. It’s getting the carer to understand this and how it changes.”
Dr Rowan Wathes, associate director of the Parkinson’s Excellence Network, said: “These training courses are so important as it is the fastest growing neurological condition in the world. In the UK alone, two people are diagnosed every hour.
“We appreciate the hard work of everyone in the healthcare sector as they are so vital for people with Parkinson’s, who often need a lot of support. In turn, we want to support those working with people with Parkinson’s and help them to understand this very complex condition.”
Awareness campaigns from Parkinson’s UK to educate healthcare staff include Get It On Time, which calls on hospitals and care homes to ensure patients with the condition get their time-critical medications on time, every time.
Yet almost 20 years since the campaign first launched, research has shown that not all staff are aware that failure to give Parkinson’s patients their medication at set times can lead to harrowing consequences – with some left unable to walk and talk.
Professor Annette Hand, a Parkinson’s nurse and the Excellence Network clinical lead for nursing, said: “As a nurse, there is so much to learn and understand about Parkinson’s to ensure we provide the best care possible to people living with Parkinson’s, their friends, families and carers.
“Another important role we provide is delivering education and training to other health and care professionals. Keeping up to date and accessing training ourselves can be a challenge, no matter how experienced you are.
“The new improved Learning Hub is an invaluable resource to all Parkinson’s health and care staff, providing a central point of access to education and training opportunities for all Parkinson’s nurses, at any stage of their career.”
Having a tremor is a common symptom of Parkinson’s, but not everyone has one. Everyone’s symptoms are different.
Because the condition affects everyone differently, everyone’s medication regimes are different too.
In hospital, it’s really important that people with Parkinson’s get their medication on time. If they don’t, it can seriously impact their health. They may not be able to move, get out of bed or swallow. Some people may never recover and may permanently lose their ability to walk, talk or worse.
The lack of dopamine in the brain can stop people’s facial muscles working as well as they used to, causing a ‘masked’ expression. This doesn’t mean someone with the condition is feeling low or depressed – they just can’t use their facial muscles to express themselves as easily anymore.
People with the condition can often ‘freeze’. This can happen at any time and cause them to become ‘stuck’ in difficult places. Using cueing techniques such as counting, singing a song with a rhythm or using a metronome can help to restart walking.
People with Parkinson’s are often mistaken for being drunk by other members of the public, which can cause embarrassment.
Some people with Parkinson’s may feel sick after taking medication, especially if they take it on an empty stomach. Having a snack, such as a plain cracker or biscuit, at the same time as taking medication can help ease this side-effect. Or taking medication with plenty of water can help to reduce nausea.
Being active for two and a half hours a week can help manage Parkinson’s symptoms, and has a positive impact both physically and mentally. The more physically active someone is, the easier it is to live well with Parkinson’s.