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 email@example.com.
For more information about Parkinson’s and coronavirus please visit the EPDA website.
“Helping women with Parkinson’s know they are not alone”
Francisca Ruiz González on making women with Parkinson’s visible
23 hours ago
Sir Billy Connolly: Parkinson’s disease is “like a strange animal”
Scottish comedian, actor and musician Sir Billy Connolly has recently discussed his experience of Parkinson’s disease while promoting his new autobiography, ‘Windswept & Interesting’. In an appearance on UK talk show, ‘The Graham Norton Show’, the comedian explained that he had lost the ability to write. He said: “It breaks my heart as I used to love writing letters to people.” Speaking to UK newspaper The Guardian, Connolly added that he thinks the condition is “like a strange animal. One that sits beside you and says, ‘How will you get on without this?’ – before it takes away something else.” Despite these adjustments, Connolly told Norton he has “good days and bad days” with the condition. “It’s creeping up on me and it never lets go,” he said. “I walk like a drunk man and have to have help. So, life is different, but it is good.” Lead image credit:…
New insights on immune cell process and Parkinson’s disease
Insoluble clumps of the protein alpha-synuclein, which can cause damage to brain cells, have been previously linked to Parkinson’s. Now, scientists in Germany, France and the US have uncovered new details on how brain cells respond to these clusters. The researchers discovered that the brain’s immune cells may be able to join together to break down the protein clumps. According to a press release, this was previously unknown. They also found that these neighbouring cells share mitochondria – structures that generate energy for chemical reactions – to help one another. In certain mutations associated with Parkinson’s, this process may be impaired. The researchers hope this insight could inform the development of new therapies. “We have opened the door to a field that will certainly engage researchers for many years to come,” said Professor Dr Michael Heneka, director of the Department of Neurodegenerative Diseases and Geriatric Psychiatry at the University Hospital…
Could analysing skin oil help diagnose Parkinson’s disease?
Parkinson’s disease patients tend to have high levels of oil, known as sebum, on their skin’s surface. Now, a study has suggested that analysing this substance may help when diagnosing the condition. The study revealed that sebum contains significant amounts of genetic material, specifically the molecule ribonucleic acid (RNA). Analysis of RNA contained in sebum – that is, skin surface lipids RNA, or SSL-RNA – could offer insights into a person’s health. Researchers in Japan examined SSL-RNA in men and women with and without Parkinson’s. The results suggested that the SSL-RNA profiles of those with Parkinson’s had “different characteristics” than those without. The researchers then tested whether examining these profiles with machine learning could reveal those who had Parkinson’s – and who didn’t. The team’s algorithm indicated a “relatively robust discriminatory ability,” supporting the further use of SSL-RNA as part of a future “non-invasive” method for diagnosis.