Lorraine reveals some of the hidden costs of Parkinson's

September 04 2017

A HANHAM woman has spoken out about the hidden price tag of Parkinson’s after she had to reduce her hours at work and rely on her parents to pay for treatments.

A HANHAM woman has spoken out about the hidden price tag of Parkinson’s after she had to reduce her hours at work and rely on her parents to pay for treatments.

Lorraine Shearing, 53, was diagnosed with Parkinson’s in her 40s, six years after first noticing a slight tremor in her right arm. 

Since 2000, she has worked part-time as an administrator in a doctor’s surgery, but had to drastically cut her hours as a result of her symptoms.

Despite working hard all her life, Lorraine found out that there was no income supplement available from the government.

She said: “Working is extremely important to me, and not just for its financial benefit. It gives me a sense of self-worth and purpose. Unfortunately in the last year I’ve had to half my working hours to just 10 hours a week because of Parkinson’s.

“I just get so tired and can get very bad anxiety when I overwork myself or become too stressed. For years I tried to maintain my lifestyle – doing the housework, taking care of my family and working at the surgery – but it was too much and my health was deteriorating. My nurse told me I had to slow down and listen to my body."

Lorraine has chosen to speak out after new research revealed that thousands of people affected by Parkinson’s are struggling with financial losses of more than £16,000 every year.

The Cost of Parkinson’s report, published by Sheffield Hallam University and charity Parkinson’s UK, shows that a household where a person is living with the condition loses around £319 per week on average, due to a combination of reduced income and increased costs.

The findings reveal that half of those diagnosed with Parkinson’s, and one third of family members, have reduced their working hours, looked for more flexible roles or given up work entirely. 

About 127,000 people in the UK are living with Parkinson’s, an incurable, degenerative neurological condition which leaves people struggling to walk, talk and sleep.

Lorraine said: “Thankfully, my employer is very supportive and now I only work two days a week, which I do enjoy, but I have noticed the impact on my bank balance every month. As well as losing money, I’m having to pay out more each month too. I have to pay for all my medication and I also have regular complimentary therapies, like acupuncture, that really help ease my symptoms but are not on the NHS.

“Luckily, I have a brilliant family that helps support me financially. As well as everyday help from my husband, my parents pay for my therapies - otherwise I wouldn’t be able to afford them. My mother also helps me with some housework and ironing, which I’m incredibly grateful for because we would really struggle to employ a regular cleaner and I can’t manage it all anymore.

“The most upsetting thing is that there doesn’t seem to be much support for people like me. I’ve worked hard all my life - and desperately want to continue - but because of my symptoms I’m simply not able to anymore. Despite losing half my salary in a year, I don’t get any supplement or replacement income. I was advised to apply for Personal Independence Payments (PIP), but when I tried, I was told I wasn’t eligible. At the moment, we are making ends meet. But as my Parkinson’s progresses and I need to give up work completely, I am worried about what support I will be able to get.” 

Steve Ford, chief executive at Parkinson’s UK, described the report's findings as "shocking".  

“People are being penalised by heavily reduced incomes and forced to pay for a lifetime of mobility aids, home alterations and care costs - all while battling a debilitating progressive condition, for which there is no cure."

The charity is calling on governments across England, Wales, Scotland and Northern Ireland to make changes to welfare support and increase social care investment, as well as proposing new policies and practices for employers.

"With a stretched NHS and social care services, and changes to welfare support, it is crucial that the government works with us, and people affected by Parkinson’s, to develop solutions and improve the public services we all rely on," Mr Ford said.

 

To find out more about Cost of Parkinson’s report visit parkinsons.org.uk