Months of reduced and cancelled care having devastating impact on abandoned Parkinson’s and MS communities

People with two of the most prevalent neurodegenerative conditions in England are suffering the consequences of having their vital social care slashed during the Covid-19 lockdown. 

In a survey of more than 2000 people affected by Parkinson’s, nearly half (48%) who received formal care from a local authority before the pandemic said they were now receiving a reduced amount of care. A separate survey of people living with multiple sclerosis (MS) during the peak of the pandemic, meanwhile, revealed that nearly 1 in 5 (19%) had their care and support reduced or cancelled.

Furthermore, more than two-thirds (68%) of families, friends and unpaid carers of people with Parkinson’s said they have taken on more caring responsibilities since the Covid-19 restrictions started. Of those, 42% said the coronavirus restrictions were negatively affecting their mental health, while more than a third said at least one of their debilitating symptoms got worse. 

Claire Hovey and her husband Chris have moved in with Chris’s mother, Denise, in Winchester for the duration of lock down.

Claire said: “Denise has been shielding since the Covid crisis hit and we didn’t think it would be fair to ask her carers to shield as well, to avoid infection risk, so they haven’t been coming. My husband and I have taken on her 24-hour care, and while Denise is a dream of a mother-in-law, we are mentally and physically exhausted. Denise’s worst Parkinson’s symptom is severe cramping, which can happen at any time, day or night. It can cause her to choke - she’s bitten through her tongue before, and even her cheeks. So we really need to be on alert at all times. It’s been emotionally devastating, to see her decline.”

During the lockdown, a quarter (23%) of people living with MS said they had received help from volunteers with food, medicine delivery and social interaction to reduce the isolation caused by the pandemic. However, 18% said they needed help but simply weren’t getting any. In addition, the Neurological Alliance recently surveyed 1600 people affected by neurological conditions, including Parkinson’s and MS, and found 30% of respondents said the support they needed to maintain their independence was provided by friends or family.

Steve Ford, Chief Executive of Parkinson’s UK, said: “This pandemic has revealed an under-funded social care system, with staff trying to deliver care. However it has fallen short at a time when people need it most.

“Some of our supporters did not feel comfortable receiving their usual care, due to concerns about the risk of being infected and poor supply of Personal Protective Equipment, but more must be done to support everyone during a crisis.

“To ensure no one is forgotten, the Government needs to establish a post-lockdown recovery plan, as it has done for health services.”

Nick Moberly, Chief Executive of the MS Society, said: “More than 130,000 people live with MS in the UK, and many rely on care and support to get dressed in the morning, prepare meals and help them to leave the house. But during the pandemic, reduced and cancelled care has meant they have been denied the vital support they need to live full and independent lives.
 
“For years people with long-term health conditions have been forced to bear the brunt of a broken social care system – the Government cannot let this continue. Without a concrete plan to fix it, more strain will be put on the already overstretched NHS, and the hundreds of thousands that depend on social care in the UK will remain an afterthought."

ENDS

Media enquiries

For more information please contact: 

Parkinson’s UK: Molly Horsburgh, Senior Media and PR Officer, on 0207 963 9351 or [email protected] 

Out of hours: 07961 460248

MS Society: Lizzie Dowell, MS Society PR Manager, [email protected] or 07702150404

Parkinson’s UK’s survey was conducted during April and May 2020.

Parkinson’s UK’s survey sample was of 2,031 people, made up of 1,491 people with the condition and 540 family members, friends and carers. 

For the full methodology and copy of Parkinson’s UK’s full report, see the Parkinson's UK website.

The MS Society and the UK MS Register surveyed 2387 people with MS between 24/04/20 and 11/05/20. A follow up survey was completed by 1137 people between 08/06/20 and 22/06/20. The survey was only able to be completed online on the UK MS Register. The study was promoted via MS Society social media and direct mail, UK MS register direct mail and via professional contacts. Data taken from May results. To see all results visit: https://www.mssociety.org.uk/what-we-do/our-work/our-evidence/ms-in-the-uk

The Neurological Alliance surveyed 1672 people affected by neurological conditions from across the UK between 9 and 20 June 2020. Respondents were asked questions about their experiences of treatment, care and support, and how these had been impacted during the pandemic.

About Parkinson’s

Anyone can get Parkinson’s, young or old. In England, around 121,000 people are already living with Parkinson’s.

Parkinson’s is what happens when the brain cells that make dopamine start to die. There are over 40 symptoms, from tremor and pain to anxiety. Some are treatable, but the drugs can have serious side effects. It gets worse over time and there’s no cure. Yet.

We’re the largest charitable funder of Parkinson’s research in Europe. We know we’re close to major breakthroughs. By funding the right research into the most promising treatments, we get closer to a cure every day.

Until then, we're here for everyone affected by Parkinson’s. Fighting for fair treatment and better services. Making everyone see its real impact. 

We are Parkinson's UK. Powered by people. Funded by you. Together we'll find a cure.

Advice, information and support is available via our website, www.parkinsons.org.uk, or our free, confidential helpline on 0808 800 0303.

About MS

Multiple sclerosis (MS) affects more than 89,000 people in England. The condition is often painful and exhausting and can cause problems with how we walk, move, see, think and feel. It’s unpredictable and different for everyone.

About the MS Society

The MS Society is here for people with MS, through the highs, lows and everything in between.

In addition to campaigning on issues including social care, welfare, and treatment options, we invest millions of pounds in ground-breaking research.

We have a free helpline – 0808 800 8000 – and information can be found on our website at www.mssociety.org.uk.