We hear from Jonny Acheson and Clare Addison, two healthcare professionals based in England who have decided to step back from their hospital roles during the Covid-19 pandemic, about why the UK’s National Health Service (NHS) will “never be the same again”
How has the Covid-19 pandemic affected you as NHS workers who are living with Parkinson’s?
Clare Addison, surgical matron: It’s changed my role completely. Having Parkinson’s doesn’t mean you have an increased risk of getting Covid-19 but if you do get it, you will likely have a slower recovery path, meaning you could deprive someone else of valuable medical attention. We need to be socially responsible to enable resources for those who need it. So, after hard conversations with my managers, it was clear that I needed to work from home.
It has been challenging for me to accept that I need to step aside from being a healthcare professional and be at home. Being in a senior position, people look up to me for guidance and leadership – so to take myself away from that has been difficult.
Jonny Acheson, A&E consultant: When the guidance came out about people with Parkinson’s having an increased risk, I had to decide what’s best for me as a person with Parkinson’s versus as a trained healthcare professional. Whatever your role is in the NHS, if you are living with Parkinson’s or any high-risk condition, you are torn between what your heart says and what your mind says because you’re trained to deliver a service.
I told my team that someone needs to make this decision for me and that’s what they did.
I’m currently trying to give support from a distance, such as offering telephone support for staff. Team members can ring me whenever they are struggling at work or need to talk. Although we are self-isolating, we’re not cut off from the service and our colleagues. I’ve been drawing some NHS sketches for my team to show my support through pictures as a way of raising morale.
Can you give an insight into how the pandemic is affecting NHS workers?
Jonny: It is unprecedented. We’ve had SARS, swine flu and bird flu, but we’ve never had anything like this before and I don’t think we ever will. There’s anxiety about how quickly this disease gets people and it will unfortunately cause many deaths.
The NHS has gone into a different gear and barriers that were once there are suddenly disappearing. Everyone has gone into the mode of ‘we can do this, we have to do this, and we will do this’. I went to Sainsbury’s supermarket this morning and people were clapping for me. In times of crisis, people really do get behind the NHS.
Clare: There has been a lot of staff refresher training, staff moving to different areas that are in need and adjusting to the new ways of working. What has been incredible is people’s willingness to adapt – you can see they are frightened and anxious but they’re just getting on with it. Covid-19 will change the NHS forever, some of our old and convoluted processes have gone and I don’t see how they will come back. People’s skillsets are going to have been refreshed and broadened.
What would you say to people in the Parkinson’s community that may be struggling physically or emotionally?
Jonny: There is currently an information overload, so if you want to keep up-to-date with coronavirus news, look at vetted sources. I’ve turned notifications off on my devices to give myself some headspace. I don’t think it is helpful to try and predict what is going to happen with Covid-19, instead take each day as it comes and try to live the best you can. Also, keep exercising and make sure you are finding other ways to socialise while socially distancing.
Clare: My mum has Parkinson’s and she told me on a Skype call, “I need you to know that I don’t want to go to hospital, and I am happy to die alone”. That’s a really hard conversation to have with your mother but actually it’s a helpful conversation in some respects because it shows she’s thinking about it.
How does it make you feel to be part of the NHS during this period?
Clare: Massively proud. Although it is frustrating not being in the hospital, we are both doing our bit in other ways. It’s amazing seeing everyone coming together – those who are just starting out, people coming back from retirement and those volunteering. There are definitely struggles to come but there are some positives too.
Jonny: It’s brilliant. This is showing talent and skillsets in workers that we have never seen before, coming out of their shells and becoming leaders. Every time you pick up the badge and see NHS, it feels very symbolic – the NHS won’t be the same again.
Jonny Acheson is an A&E consultant at the University Hospitals of Leicester and works in University of Leicester Medical School in Leicester, UK. Since his Parkinson’s diagnosis in 2016, his role changed from working on the frontline to working mainly in observation wards in the hospital.
Clare Addison is a matron for surgery at Surrey and Sussex Healthcare NHS Trust and is the co-lead of the Parkinson’s UK Excellence Network for the south east of England. Clare was diagnosed with Parkinson’s in 2016 and has a clinical background as a neuroscience specialist nurse.
How have you been affected by the coronavirus?
We will be doing all we can to share useful information about Covid-19 with you as the situation develops – and we need your help. To share your experience or tell us the topics you want Parkinson’s Life to cover during the pandemic, please leave a comment or email firstname.lastname@example.org.
For more information about Parkinson’s and coronavirus please visit the EPDA website.
Podcast: How do women experience Parkinson’s differently from men?
Three women with Parkinson’s discuss the challenges they face
2 days ago
Turmeric oil may offer new ways of treating Parkinson’s disease
Turmeric oil may be beneficial in treating Parkinson’s disease, according to researchers from Kumamoto University in Japan. Their findings support the known properties of aromatic turmerone (ar-turmerone), a compound found in turmeric essential oil, which reduces inflammatory responses caused by cells associated with Parkinson’s-related neurodegeneration. Using midbrain slice cultures – laboratory cellular models that mimic brain activity – the team analysed the effects of a natural form of aromatic turmerone and eight structurally similar derivatives. They tested the derivatives’ anti-inflammatory effects, as well as their ability to protect dopamine-producing neurons. Those with the strongest anti-inflammatory effects were found to prevent the loss of dopamine-producing neurons. Among these were aromatic turmerone and its derivatives, suggesting their role as a “potential candidate for treating Parkinson’s disease”. In a press release, lead author Takahiro Seki said: “Our study elucidated a new mechanism by which ar-turmerone and its derivatives directly protect … [dopamine-producing] neurons.”
Research offers new insights on a cause of Parkinson’s disease
Researchers in Denmark have shared insights on a cause of up to 95% of Parkinson’s disease cases. Using data on gene patterns and three mouse models, scientists at the University of Copenhagen found that a blockage to a pathway regulating mitochondria (‘powerhouses’ that generate energy for reactions in cells) causes a form of the condition known as ‘sporadic Parkinson’s disease’. When the pathway becomes blocked by a protein, damaged mitochondria accumulate, unable to produce enough energy – which in turn causes nerve cells to die. “Just like when people eat, cells take what they need and get rid of … waste products,” explained corresponding study author Professor Shohreh Issazadeh-Navikas. “But if our brain cells have this specific kind of signalling blockage, it means that the powerhouse of the cell – mitochondria – cannot get cleaned up after being damaged.” The team now plan to investigate the pathway’s role in neuronal…
Dance training with music could help slow the progression of mild-to-moderate Parkinson’s disease, researchers at York University in Canada have found. As part of the study, the researchers followed 16 participants with Parkinson’s disease who attended weekly dance classes between 2014 and 2017. The research team compared them to 16 people with Parkinson’s who did not take part in the classes. The research team found that the motor and non-motor symptoms of those who took part in the dance classes improved or did not progress over time – while those who did not participate showed a continual decline. “Dance is so complex,” said study author, PhD candidate Karolina Bearss. “It’s a multi-sensory type of environment. It incorporates and stimulates your auditory, tactile, visual and kinaesthetic senses and adds an interactive social aspect. Regular exercise does not offer these aspects. There’s so much more to dance.”