Falling asleep in front of the Queen and other wake-up calls
The surprise survivors' stories spurring the roll-out of our new service, Neuro Logical.
There was controversy in 2019 after Prince Charles apparently dozed off as The Queen gave her speech at the opening of Parliament.
But there was deep concern when Penny's wife, George, did the same in front of HRH Queen Elizabeth at a service at Westminster Abbey.
Three weeks earlier, George, then aged in his fifties, had been unwell with an infection that made him unsteady on his feet.
And he had fallen, hitting his head on newly laid bathroom floor tiles.
However, it was only after he fell asleep in front of the Queen – to his own and Penny's bewilderment - that the full extent of his head injury was discovered.
George had sustained a significant bleed in the brain.
His diagnosis required specialist neurorehabilitation, including neuro occupational therapy – which is where Krysalis stepped in.
And among the many positive outcomes achieved, Penny agreed to share the couple's eye-opening story to illustrate neuro occupational therapy's life-changing impact.
Telling tales
The lived experiences of George and Penny and hundreds of other UK families affected by neurological conditions have now culminated in another positive outcome.
Their stories - often including prolonged struggles to find experienced professionals offering the right care - set our Clinical Director, Jo Throp, on a mission to widen access to neuro occupational therapy.
And the result is her brainchild, Neuro Logical, a service offering tailored guidance to people facing the challenges of:
- Parkinson's disease
- Motor neurone disease
- A stroke diagnosis
- Brain, spinal cord, or central nervous system injury
Neuro Logical is now being offered as a specialist service by multi-award-winning insurance brand Guardian as part of its additional claims support service, HALO.
Neuro Logical gives tailored guidance to critical illness claimants navigating the challenges of a neurological diagnosis.
It was tales of these types of challenges, after all, that helped carve Neuro Logical's niche among HALO's specialist services.
Announcing the partnership's launch at the 2021 Protection Review Conference, Jo explained her 24-year career had introduced her to "a broad range of diverse individuals and families".
She said that many were doing their best to live with "immense trauma", often without specialist help.
And not all of them were as fortunate as the people Krysalis supports.
But Jo added, "It is important to me that the voices of the people we work with should be heard loud and clear in this room today.
Their voices will highlight why services like this one are so desperately needed. 
Break the glass
So how many voices were heard in that room that day? And what did they say?
Well, here are some of the survivors' words plus other sources Jo cited as she threw open windows into the world of the UK's neuro community:
For about three weeks, we did nothing because the symptoms were intermittent - dragging one leg, confusion and terrible headaches. […] But they weren't continuous, so every time we got ready to go to the doctor, he said he was alright.
George's wife, Penny, in the aftermath of his brain injury. [1]
Chris's accident happened in an instant and it changed everyone's lives from that moment. You just don't know. That can happen to any of us.
Denise, mother of brain injury survivor, Chris. [2]
My injuries have wiped out everything I used to love doing; my hobbies and my work.
Spinal injury survivor, 24.
My roles at home are important to me. I feel responsible for helping my family. Now I feel worthless and reliant on my wife which isn't something I've felt before.
Brain injury survivor, 57.
Coping with people's reaction to me has been hard. In general, I think people coping with neuro conditions is hard. I think they are afraid.
Brain injury survivor, 45.
A colleague at work said to me, 'Andrew, I just wish you'd rock up or rock off.' That was hard as he was basically telling me to 'f' off.
Stroke survivor, 51
We are absolutely brilliant at saving people's lives from stroke, but we are not good at saving' people's quality of life after stroke. I realised that if I was going to make any improvements, I needed more therapy than the NHS system was going to provide.
BBC journalist and stroke survivor Andrew Marr, 53.
When asked about what illnesses people feared getting most, 45% said neurological disorders were at the top of the list.
UK survey by the Sue Ryder charity, 2016
A Survey on stigma and neurological disorder from the European Federation of Neurological Associations in 2020 found:
- Seventy-four per cent felt they did not receive adequate treatment because a medical professional did not believe the severity of their symptoms.
- Thirty-five per cent have avoided seeking medical advice because they felt embarrassed.
- 92 per cent of those living with a neurological disorder feel affected by stigma
Bring it home
How, then, will Neuro Logical help address some of the challenging lived experiences of people with neurological conditions?
Well, in summary, it will:
- Focus on challenges faced at home
- Aid understanding of how neuro symptoms can impact wellbeing, relationships and valued everyday activities.
- Offer assessment and time-limited treatment and support.
- Create specialist reports with tailored advice, strategies, and insights to empower individuals to feel more in control.
- Provide bespoke therapeutic support sessions to develop an understanding of a diagnosis and help individuals improve, adjust and plan.
- Point the way to experts at the right time according to needs and diagnosis to avoid deterioration in health or crisis situations.
- Outline other support services and how to access them.
- Gather data to assess the service's impact and ensure continual improvement.
- Provide a portal to a trusted provider for those choosing to pursue ongoing, self-funded rehabilitation, reassured that they are working with experts.
Circle of support
Guardian's additional specialist service, HALO, provides a circle of support in which the policyholder and their family are central.
The circle is made up of a broad range of specialists providing bespoke medical, legal and financial support.
In most cases, the cost of the help is covered in full by the policy. Find out more here: Guardian1821: HALO claims support service.
References
[1] Penny and George - a unique journey (krysalisconsultancy.co.uk)
[2] Chris and Denise - a unique journey (krysalisconsultancy.co.uk)
