Parkinson’s: Caregivers in need are “always on alert”

According to a report by Parkinson’s UK, carers of Parkinson’s patients find it difficult to provide adequate care for their loved ones.

The report, Parkinson’s: Who Cares?, found that caregivers are “swimming against the tide” and are “mentally and physically exhausted.”

Maureen Crossan, who cares for her husband Patrick, told BBC News NI that working as a carer meant “always being on guard”.

The Department of Health said it recognised the “critical role” of unpaid carers and acknowledged the “importance of supporting carers to maintain their mental health and wellbeing”.

The report, ‘Parkinson’s: Who Cares?’, was published at Stormont to mark the start of Carers Week.

Parkinson’s UK said the report was “difficult to read” and the scale of the difficulties faced by care workers on a daily basis was “enormous”.

Maureen Crossan has cared for her husband Patrick since he was diagnosed with Parkinson’s disease at the age of 50.

She told BBC News NI: “Being a carer is not something I imagined at such a young age.”

She believes that what is needed in Northern Ireland is “more flexibility and education around Parkinson’s” and “understanding from the Minister for Health”.

“As a caregiver, you are constantly looking for new symptoms, as the disease progresses very differently in each person and that can be stressful.”

She told the BBC that Patrick has not been able to see his doctor this year and that while there are Parkinson’s nurses across Northern Ireland, it “can be difficult to get an appointment with them”.

Parkinson’s is a degenerative disease that affects how your brain communicates with your body’s muscles.

The three main symptoms of Parkinson’s disease are tremors, slow movements and muscle stiffness.

A person with Parkinson’s disease can also experience numerous psychological problems.

There are already around 153,000 people living with the disease in Great Britain.

Sarah McCully Russell, Policy and Campaigns Manager at Parkinson’s UK in Northern Ireland, moderated and delivered the report ‘Parkinson’s: Who Cares?’.

“We have heard time and again that caregivers want to provide Parkinson’s patients with access to an improved health care system,” she said.

“This would help the person they are caring for to live well with their illness, which in turn would reduce the stress and pressure faced by the carers.”

“Despite their daily responsibilities and frustrations, it was their loved ones who were firmly anchored in their thoughts.”

Parkinson’s UK has requested the provision of a delivery plan to support the implementation of the review’s recommendations and the required financial commitment.

The charity also called on the Northern Ireland Executive to ensure that the regional neurology review is completed as soon as possible.

The Department of Health said the consultation on adult social care reform highlighted a “wide range of issues relating to carers” and “proposed a number of measures to address these issues”.

The ministry added that mental health services in Northern Ireland are provided “in line with the regional stepped care model” and are “available to everyone”.

“All those requiring care and treatment, including carers, receive services that are clinically appropriate.”

Maureen said it would be helpful in the future to make it easier to contact GPs.

“You have to call before 10 a.m. to get an appointment,” she said.

“With Parkinson’s patients, it’s often the case that you wake them up, get their medication, take care of them and then sit there with the phone trying to reach a doctor.”

She also has difficulty getting prescriptions and said the lack of medication is “stressful” and “mentally exhausting.”

“You actually have to go to the pharmacist four times now because the medication is out of stock, and you’re constantly wandering around.

“If a Parkinson’s patient’s medication is stopped, it harms his condition and therefore also the person caring for him.”

More flexibility, more education about Parkinson’s and understanding from the (health) minister are needed, she said.

“It’s no longer enough to say there are delays in drug administration. Why are there delays? What are they going to do about it?”