'We must support Mia, 18, and the one in six in Scotland with a neuro condition' - Alice Struthers

“I have had several visits to doctors and hospitals, and we have been left feeling totally lost and devastated. There has never been any empathy or help.”

It is six years since 18-year-old Mia Granger from Aberdeen was diagnosed with ME.

Before then, she was healthy and fit – even winning medals as part of the Scottish Rhythmic Gymnastics Squad.

But her neurological condition has left her frequently bedridden, unable to go to school, and missing out on her teenage years.

“Throughout the years, we have found that there is no help or understanding for people suffering with ME,” she said.

Sadly, Mia’s experience is far from isolated.

Lengthy waiting times and a devastating mental health impact are highlighted in new reports which have been published by neurological alliances across the UK.

In Scotland, this is the first report of its kind, and is part of a UK-wide effort to improve the care and support for those with conditions such as cerebral palsy, MS, ME, dementia and epilepsy.

Mia Granger, 18, from Aberdeen, is a former gymnast who was diagnosed with ME 12 years ago. She says she has little empathy of help in dealing with her condition with calls made for greater support for the one in six people in Scotland who live with a neurological condition. PIC: Contributed.

They are the “one in six”, because that’s the proportion of the population who live with such a condition.

That translates to almost one million Scots, but this report exposes the desperately poor state of the services on which they rely, and how those have steadily worsened because of the pandemic.

The problem is neither exclusive to Scotland, nor new – many people have raised concerns about facilities and resources for years.

But our report, which analysed the responses of 8,500 people across the UK, including more than 800 in Scotland, highlights the urgent need for change.

Alice Struthers is programme director of the Neurological Alliance of Scotland, an umbrella body of organisations that represent people with a neurological condition and those who support them. PIC: Contributed.

Nearly half of those in Scotland with a neurology condition have faced delays to routine appointments; a figure which rises higher still among children.

This is deeply worrying because a lag in getting treatment and support can change someone’s life forever.

It’s a few months from which they may struggle to recover from, with devastating consequences not just for quality of life, but for some neurological conditions, for life expectancy itself.

Our respondents spoke of how being left in the dark meant they were unsure of how to manage their condition. They didn’t even know which activities would worsen their condition, so sparse was the information they were receiving.

A lack of knowledge of neurological conditions among GPs and general health and care is one of many problems currently being experienced.

Others talk of being abandoned during the pandemic, with some nursing teams too busy even to respond to calls or emails.

These unacceptable delays occur at all stages of the process.

It’s bad enough for those who have been living with these debilitating conditions for much of their lives, some of whom now have not seen the specialists they need face-to-face for years.

But what of those who are newly diagnosed?

Our report, ‘Together for the One in Six: Findings from the My Neuro Survey in Scotland’, shows that more than a fifth of adults in Scotland are forced to wait more than a year between seeing a GP and the first appointment with a specialist.

Yet the Waiting Times Standard in Scotland states that 95 per cent of patients across all conditions should receive an outpatient appointment within 12 weeks, and 100 per cent of patients should receive treatment within 12 weeks.

Being diagnosed with a neurological condition is scary and confusing, especially for the many young people across Scotland.

Yet upon diagnosis, only 36 per cent of adults and 26 per cent of children in Scotland said they ‘completely understood’ the explanation of their condition given at diagnosis. One in five weren’t even offered an explanation from medics.

The impact this has on people’s mental health is severe.

The vast majority of those with a neurological condition say the illness in itself worsens their mental health.

But, according to this research, 55 per cent of adults in Scotland have not been asked about their mental wellbeing in the last three years. All of these issues existed before the pandemic and have been exacerbated by it, and it’s not just patients who are suffering.

Our report also discusses how the staff tasked with dealing with this crisis are coping.

Specialists “routinely report being at capacity and struggling to cope with demand”.

We are urging the Scottish Government, along with all the governments in the UK to establish a ‘Neuro Taskforce’ to address the problems and create real change, and to better prepare for the future care and support of people with neurological conditions.

A petition has also been launched across the UK calling on the UK’s health ministers to take action.

We need to deliver care seamlessly between different parts of the system – improving communication and information sharing between primary, secondary and community care so that GPs are able to refer when needed and be able to offer expert advice.

Meanwhile, the current Strategic Framework for Action on Neurological Care and Support in Scotland will run out in 2025, and work must get underway on developing a new strategy.

Unfortunately, people with neurology conditions have never been further away from accessing the help and support they need.

As Mia says, “we have had to try find alternative treatments and pay for them ourselves with just a little bit of hope each time that at that point it would ease my symptoms and pain even if just for a little while”.

For Mia, and for the one in six people across Scotland with a neurological condition, the crisis needs to be dealt with now.

Alice Struthers is programme director of the Neurological Alliance of Scotland, an umbrella body of organisations that represent people with a neurological condition and those who support them.

Alice Struthers is programme director of the Neurological Alliance of Scotland, an umbrella body of organisations that represent people with a neurological condition and those who support them.