Former Wakefield councillor with primary lateral sclerosis backs Neurological Alliance's call on Government

Every part of 59-year-old Susan’s life was turned on its head when she was diagnosed with primary lateral sclerosis (PLS) in 2012 and placed in palliative care.

PLS is a rare form of motor neurone disease (MND) which causes muscle weakness and loss of movement control and it has “changed everything” for Susan.

Her lower body, arms, voice and breathing have all been affected and she now depends on friends and family to help her with all aspects of daily life.

She can no longer do things she once loved, such going out for meals or dancing with her husband of 38 years, Steven, and has even been unable to perform everyday tasks like making a cup of tea.

She said: “People used to comment on how I walked and carried myself confidently. I used to love dressing nicely because I had a thing for shoes and handbags, but I can’t even shop for them anymore.

“PLS has changed everything but the thing I miss the most is dancing. I used to dance around the kitchen with Steven. Now, I have to dance from my chair.”

The former Conservative councillor for Crofton, Ryhill and Walton first noticed something was wrong in 2009, when she suddenly began losing her strength and balance and started falling over at meetings.

She underwent numerous tests for other conditions such as multiple sclerosis and Parkinson’s and even received a misdiagnosis of fluid on the brain before being told she had PLS in 2012.

Susan wants to raise awareness of neurological conditions and is supporting The Neurological Alliance campaign to bring about much needed change for people affected by them.

Susan said: “When I was diagnosed, they just told me to go away, do as I wanted and to make sure my family knew my wishes.

“I wish people understood more about PLS and that it is a terminal illness. It has turned my whole life on its head and many healthcare professionals aren’t even aware it.”

The Neurological Alliance handed over a 19,000-strong petition to the Department of Health and Social Care on Monday last week.

It called on the Government to back the one in six people affected by neurological conditions in the UK and calls for a UK-wide Neuro Taskforce to spearhead vital improvements in care and support.

The petition was a result of the Alliance’s 2022 ‘My Neuro Survey’, completed by more than 8,500 people, which exposed significant shortfalls in mental wellbeing support, delays to accessing vital treatment and care and a lack of information and support at diagnosis.

Georgina Carr, chief executive of the Alliance, said: “Despite affecting millions of people and costing billions of pounds, neurological conditions are too often at the back of the queue.

"More than half of people who shared their experiences had experienced delays to routine specialist appointments in the last year and a majority hadn’t been asked about their mental wellbeing by a healthcare professional in the past three years.

"The message from people affected by neurological conditions is clear - this must change.”

Together with the petition, the Alliance exhibited a new artwork in Parliament, which featured pictures from hundreds of people affected by neurological conditions across the country. It is hoped the artwork will help to raise awareness amongst MPs of the realities of living with a neurological condition.

Georgina added: “We must not ignore the fact that one in six people live with a neurological condition and many are not receiving the care and support they need.

“We stand united with over 100 organisations and 19,000 people to take immediate action.

"We urge governments across the UK to establish a Neuro Taskforce to address these unacceptable gaps in care and support for people with neurological conditions and deliver real change.”

The Department of Health and Social Care has been contacted for a comment.