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Quarter of Parkinson’s sufferers were wrongly diagnosed, says charity.
Poll of more than 2,000 people found 26% of respondents were told they had something else.
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More than a quarter of people with Parkinson’s disease were initially misdiagnosed, new research has found.
The poll of more than 2,000 people found 26% were first told they had something else, while 21% saw their GP three or more times before being referred to a specialist.
Of those who were misdiagnosed, 48% were given treatment for their nonexistent condition, with 36% receiving medication, 6% undergoing operations or procedures and a further 6% given both medication and operations or procedures.
Of those who received unnecessary treatment, 34% said their health had got worse as a result.
The poll, for the charity Parkinson’s UK, also found that women were more likely to be misdiagnosed than men, and errors were most common in people aged 51 to 60.
Katie Goates of Parkinson’s UK said: “Parkinson’s is an incredibly complex condition with more than 40 symptoms, and it affects everyone differently.
“One of the biggest challenges for Parkinson’s research is that there is no definitive test for Parkinson’s, and as a result we’ve heard of people being misdiagnosed with anything from a frozen shoulder or anxiety to a stroke.
“Our survey has shown that because of this, people are being left in limbo and seeing their health deteriorate, which is unacceptable.
“We are investing in vital research to find a much-needed diagnostic test, but we also recognise the key role that health professionals have in helping people with Parkinson’s get the right diagnosis and treatment as soon as possible.”
About 145,000 people in the UK are diagnosed with Parkinson’s every year.
Katy Dickinson was diagnosed with the disease in May 2018 at the age of 27 but had suffered symptoms for years.
She said: “I’ve always had a tremor but about four years ago it got worse. I also noticed that my left foot was dragging and my voice started to be affected.
“I went to the doctors but no one could understand what was wrong with me.
“It took four years of appointments and being told that I was ‘doing it to myself’ before I got my diagnosis.
“In that time I was wrongly diagnosed with a functional neurological disorder and told that the way I was walking was ‘learned behaviour’.
“My uncle had Parkinson’s and my mum was saying all along that it could be Parkinson’s for me too, but it wasn’t considered because of my age.
“At the worst point I couldn’t eat and went from eight stone [50kg] to under six stone.
“Eventually, in early 2018, I went to A&E because I kept falling. The doctors wanted to send me home the next day but the nurses insisted I stayed in because I was really dehydrated.
“I was admitted to hospital and had every test going – ultrasounds, ECGs and drug tests and still the doctors were stumped until I finally saw a neurologist and he diagnosed Parkinson’s. In total, I was in hospital for six months.
“It was a relief to finally be believed after years of being made to feel it was all in my head.”
Signs of Parkinson’s can include:
Handwriting getting smaller.
Tremors, especially in fingers, hands or feet.
Uncontrollable movements during sleep.
Limb stiffness or slow movement.
Changes to voice or posture.
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**Hospitals too often unsafe for Parkinson’s patients, says charity.
Some patients left unable to walk or talk because they do not get drugs on time.**
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Many patients with Parkinson’s disease say they are not always given their drugs on time when in hospital, leaving some unable to walk or talk, according to a charity.
Parkinson’s UK said hospitals were too often unsafe for people with the disease, leaving them scared of ending up there.
Almost two in three people with Parkinson’s do not always get their medication on time while receiving inpatient care, according to the charity’s research.
Of the 700 patients questioned between May and July this year, 78% said their health had suffered as a result of poor medication management in hospital. Setbacks included tremors, anxiety and losing the ability to walk or talk.
Lloyd Tingley, the charity’s senior policy and campaigns adviser, said: “Our new report highlights the devastating consequences of when people with Parkinson’s don’t get their medication on time in hospital, resulting in people leaving in a worse state than when they went in.
“It’s clear that hospitals aren’t always the safest places for people with Parkinson’s, with many sharing with us that they’re terrified of ever having to be admitted.”
The charity claimed too many hospital staff did not properly understand Parkinson’s, a serious and incurable neurological condition that it is estimated 145,000 Britons may have. It has launched a campaign, Get It On Time, to ensure reliable access to drugs in hospital.
Mistakes in managing Parkinson’s patients’ drug needs can contribute to them staying in hospital longer than necessary. NHS figures cited by Parkinson’s UK suggest patients spent 28,860 nights a year in hospital as a result, at a cost of £10m.
Freedom of information requests by the charity found that staff at less than half of hospitals had undergone mandatory training in how to care for and manage Parkinson’s patients.
The Patients Association said the intense and growing pressures on hospitals could be to blame. Rachel Power, its chief executive, said: “People with Parkinson’s have always encountered difficulties in hospital, with non-specialist staff simply not understanding how important it is for them to get their medication strictly on time. The ongoing crisis conditions in our hospitals are almost certainly making this problem substantially worse.”
Carole Buckingham, a Parkinson’s patient from Cheshire, told the charity she felt hospital staff ignored her pleas about her drugs. “I have to take 36 tablets a day at five different times. But whilst I was in hospital I was never given my medication at the time I needed it, even though I was always asking staff and explaining to them how urgent it was,” she said.
“It was like banging my head against a brick wall. I felt ignored and like the staff didn’t understand Parkinson’s and the severity of the situation. Because of this my Parkinson’s symptoms got so much worse. One time I was given the wrong drugs but felt I had no choice but to take them because it was the only thing on offer to me. I ended up passing out. I could still hear everything going on around me and alarms going off and the staff rushing around trying to help me, but I couldn’t move or talk. It was terrifying.”
An NHS England spokesperson said: “Patients with Parkinson’s and other neurological conditions are among the most vulnerable in our society and all parts of the NHS strive to provide them with the best care possible. This summer we published guidance, in partnership with charities such as Parkinson’s UK, to help local NHS staff take practical steps to improve the care for these patients in our hospitals.” >
