Care worker with Parkinson's turns his 'real-life insight' into training for Caremark staff

When Mark Bailey from Ramsgate, Kent was diagnosed with Parkinson’s in May 2019, his employer not only backed him to provide training to other staff but has now incorporated his course into the Caremark intense training programme.

After Mr Bailey was diagnosed with Parkinson’s, he wondered how he could turn his knowledge and expertise into something “positive for me and others.” Since then, his training has given staff a real-life insight into what it is like to live with Parkinson’s.

Mr Bailey, 56, told homecare.co.uk: “After I was diagnosed with Parkinson’s, one of the things I noticed was the lack of understanding of the symptoms and medication. It helps that the training given is coming from someone who has Parkinson’s and understands it.

“Not many carers knew about this but when you go and see someone who is diagnosed with Parkinson’s, it is so important you give them their tablet first and do the tasks after as it can prevent muscles seizing up. It’s amazing how many people did not know about that side effect because not many people know about Parkinson’s.”

There are around 145,000 people living with Parkinson’s in the UK

Mr Bailey’s training has proven to be very beneficial and feedback from the staff has been extremely positive. “People have said it was one of the best training session they had been given because it was done by someone who has Parkinson’s and knows how it affects the care they give.”

Caremark Thanet recently sent Mr Bailey to a lady who has been diagnosed with Parkinson’s. “When I first met her, she couldn’t hold a knife and fork. I gave her some simple exercises to do and now she is eating with her knife and fork and she can even weight-bear and stand up on her own now and is teaching herself to walk again.”

According to the Parkinson’s UK website, there are around 145,000 people living with Parkinson’s in the UK. Parkinson's is a progressive neurological condition which gets worse over time.

Parkinson's develops when cells in the brain stop working properly and are lost over time. These brain cells produce a chemical called dopamine.

Symptoms such as tremor (shaking), slowness of movement and rigidity (muscle stiffness) start to appear when the brain can’t make enough dopamine to control movement properly.

Before his diagnosis in 2017, Mr Bailey noticed a tremor in his left hand and sometimes in his left leg. He went to his doctor who thought it was due to an old sports injury and said to monitor it.

A few months later, Mr Bailey went back to his doctor when the tremors became more frequent.

The doctor watched Mr Bailey walk and noticed his movement was not as it should be and was sent to see a neurologist, who in turn arranged for some scans.

’There is a lot of misinformation out there’

Once Mr Bailey received the test results stating he did have Parkinson’s, he told his family and friends. He said: “After I spoke to my family and friends about Parkinson’s, some went online."

Mr Bailey was shocked by some of the sites his friends and family had gone to find out more information. "There is a lot of misinformation out there and it can take them to breaking point. If family and friends don't understand what Parkinson's is and what it can do then there is a lot of other people out there who are in the same boat."

Mr Bailey had a variety of responses from his friends and family after they had read false information from different websites. He said: "Some were calm and wanting to know more, some really upset and worried that the end was near. We had to sit down and say to them go to Parkinson’s UK website and they will tell you what is likely to happen.”

Mr Bailey was also apprehensive about telling his line manager at work. “I had been working with the company for about a year before I got diagnosed and although they are a good company to work for, I wasn’t entirely sure how they would react.

“I went in and spoke to my line manager and she was absolutely brilliant. I have now been told by my doctor not to work more than three days and to have some respite in-between as it attacks my body too much. I spoke to Caremark about that. They have been very supportive.

“I can’t fault Caremark in terms of the way they have looked after me.”

’With his positive attitude, he has set out to help others including the wider community’

In his spare time, Mr Bailey has become an active volunteer with Parkinson’s UK and has been involved in setting up an online group to help raise funds for research and raise awareness. The group talks to researchers and doctors at the meetings as part of the ongoing support network and is developing the use of social media.

“There is a south-east group where we are advising people who have Parkinson’s. We also have researchers who come online and talk about what they are doing to help and ask if people want to be part of their research. There is lots out there that can help people who have Parkinson’s.”

Currently, the group gets together virtually but Mr Bailey is looking forward to face-to-face meetings where people with Parkinson’s can chat and support each other.

Once restrictions lift, Mr Bailey and his Parkinson’s nurse Lizzie hope to get out and about in the community to talk to care homes and hospital staff about Parkinson’s.

“Once Covid restrictions have eased off Lizzie and myself can hopefully go round and start talking to nurses and other care workers about how Parkinson’s affects the body. A lot of people do not have that understanding with what it can do to a person’s body.”

Jemma Nimmo director of business development and marketing for Caremark Thanet, Dover and Canterbury said: “Mark’s dedication, commitment and reliability to his role as a carer is inspiring.

"With his positive attitude he has set out to help others including our customers, our carers and the wider community, with his energy and drive Mark has excelled in this area. We (Caremark Thanet) are truly proud to have Mark on our team. Well done Mark.”

Next year, Mr Bailey is planning to walk to London Parkinson’s HQ from his home in Ramsgate to raise money for Parkinson’s UK. “I am going to start training soon as it is a 70-mile walk from where I live.

"I’m looking to do seven days of 10-mile walking next April/May time so it’s not too hot. I am hoping other people will join me just for a day including friends and two of my stepsons are going to do a couple of days with me as well.”

To read about Parkinson's disease and understand the symptoms and early signs click here

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