Andrew Bateman

Professor, School of Health and Social Care, University of Essex

Government leadership can join up data, raise awareness and transform quality of care for the millions living with acquired brain injuries.

Acquired brain injuries (ABIs) are a shrouded spectre in public health. These ‘hidden’ disabilities affect the lives of millions of Britons, but the public and responsible professionals alike are broadly ignorant of their pervasiveness and effects. A drive to join up available information and address data gaps can shed light on the realities of living with ABI and bring better outcomes for all affected.

ABI realities: complex care needs and disjointed services

The conditions of people with ABI are typically complex and individualised. As well as a latent risk of complications, emotional regulation, behaviour, cognition and physical capabilities are varyingly affected.

Care models can be disjointed. Care requires the input of multiple specialities on top of a bedrock of social support, but providers can have limited visibility of one another’s work. Neurologists hold data from scans but can lack social workers’ information on behaviour or an occupational therapist’s data on recuperation.

Social services meanwhile often have poor understanding of ABI. These problems of impersonal, disintegrated and deficient ABI care lie in limited information.

Care requires the input of multiple
specialities on top of a bedrock of
social support, but providers can have
limited visibility of one another’s work.

A strategy to plug data gaps and streamline services

It would be reasonable for all people with ABI to have a community care plan that meets their needs. To deliver this, coordinated comprehensive action needs to be built into a new strategic goal that brings together the many systems involved.

There is a need and opportunity to build on the sustained work of the national charity UKABIF (United Kingdom Acquired Brain Injury Forum) and organisations linked with ABI to achieve this. The Heads Together project for example brought together academics and practitioners to develop a toolkit for social workers to better understand ABI following the 2019 tragedy. Building on such guidance can ensure the consistent delivery of services and collection of data.

Assistive technology and data-driven strategy

To best identify what works, when and for whom, services should also provide the latest technologies. Assistive technology (ATech) offers a window into the invisible effects of ABIs: cognitive aids, communication devices and smart wearables gather continuous data streams for key indicators such as sleep and activity levels. A technology prescription framework can ensure authorities collect critical daily data.

A data-driven strategy can unlock the insights of assistive technologies and the value of all services. To transform the lives of millions, the Government must ensure its sweeping upcoming NHS reforms lay the groundwork for concerted action on acquired brain injury.

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Neurology-focused pharmaceutical company accelerates research into neurological treatments with equitable access.

Medical innovation is accelerating at an unprecedented scale. Harnessing the full ecosystem of patients, caregivers, clinicians and payors is quickly becoming an essential component in the development of treatments that are not only effective but practical and accessible.

Ecosystem of neurological product development

Stefan König, CEO of Merz Therapeutics, discusses the importance of this for product development. “The patient is our north star, meaning our approach to innovation is always guided by the question: what does this bring to the patient?”

He cites the example of a Parkinson’s disease product, where patients often struggle with fine motor skills.

“With this in mind, we developed easy-peel packaging that allows medication to be accessed more easily,” explains König. “We develop solutions with a 360-degree approach, consulting clinician and patient advisory boards before moving into practical development while collaborating with payors to ensure broad access and quick delivery to patients.” This approach aims to centre each step of design with real patient challenges in mind.

We develop solutions with a 3
60-degree approach, consulting
clinician and patient advisory boards
before moving into practical development.

Balancing heritage with driving innovation

Merz Therapeutics is a company of the Merz Group, a privately held, family-owned German company founded by Friedrich Merz. Grounded in more than 115 years of health and innovation expertise, the company has evolved to become a global leader in neurological solutions and therapy.

“Our heritage provides a strong foundation for continued adaptation and growth,” explains König.

“We combine innovation, patient centricity, agile long-term decision-making and a strategic investment approach to ensure our company is future-proofed and well-positioned for sustainable growth.”

Beyond product development, they offer a number of digital health solutions, with nurse-led patient support programmes guiding patients in the management of complex neurological conditions.

The role of strategic partnerships

With an array of global partnerships, including esteemed research institutions and universities, the company continues to lead the development of patient-led solutions. “Being a mid-sized organisation allows us to stay close to patients and better understand disease areas that may be too small for big pharma companies to address while maintaining the ability to propel neurological innovation on a global scale,” explains König.

“Our research centre in Frankfurt has over 160 research scientists from approximately 12 different nationalities. By combining in-house expertise with innovative ideas from smaller biotech companies, we help bring personalised therapies to market,” he adds. “We hope to continue partnering with clinicians, patient organisations and biotech companies to drive neurological innovation for many generations to come.”

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Life after a stroke is a lifelong journey. With the right care and support, survivors can rebuild their lives and regain independence.

Stroke is one of the leading causes of death and disability worldwide. Each year, nearly 1.5 million people suffer a stroke in Europe. It can be devastating and deeply affects survivors and their families. Today, more than 9 million people across Europe are living with the long-term health, social and financial impacts of stroke.

Stroke prevention and early action save lives

Fortunately, many strokes are preventable. Common risk factors like high blood pressure, smoking, obesity and lack of exercise all contribute to stroke risk. The Stroke Alliance for Europe (SAFE) recently launched StrokePrevention.org, which highlights the power of healthy lifestyle changes, regular health checks and early intervention to reduce the chances of a first or second stroke. It also outlines what governments should be doing to create healthier environments that protect brain health.

Acting quickly when a stroke happens can save lives and improve recovery. The F.A.S.T. test — Face (drooping), Arms (weakness), Speech (slurred), Time (act fast) — helps people spot the signs and seek urgent medical attention. Fast treatment in a specialist stroke unit gives people the best chance of survival and reduces the risk of long-term disability.

For many, the effects of stroke
continue long after leaving hospital.

Stroke rehabilitation and support

For many, the effects of stroke continue long after leaving hospital. Survivors often face ongoing physical, emotional and mental health challenges. Access to rehabilitation services, peer support and strong networks are essential to recovery and rebuilding independence.

The European Life After Stroke Forum, led by SAFE, brings together healthcare professionals, researchers and stroke survivors to improve post-stroke care. Patient organisations also play a vital role, providing peer support, counselling and rehabilitation services to help reduce isolation and support mental wellbeing.

Long-term management for stroke survivors and carers

The Stroke Action Plan for Europe, developed by SAFE and the European Stroke Organisation, aims to improve prevention, care and long-term support. It aims to ensure all stroke survivors — and their carers — have access to high-quality rehabilitation and ongoing support. Stroke is not just a medical emergency; it is a lifelong journey. With the right support, survivors can rebuild their futures.

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Global neuroendovascular innovation leader urges, ‘Time is brain,’ developing groundbreaking ischemic stroke and brain aneurysm medical device technology deeply rooted in clinical evidence and physician collaboration. 

Amplified by the American Stroke Association, the globally recognised acronym F.A.S.T. (Face drooping, Arm weakness, Slurred speech, Time to call emergency services) was created to ensure a speedy and effective response for people experiencing a stroke. While the tool is widely used to facilitate the identification of stroke symptoms, it also underscores the urgency of seeking immediate treatment. T = Time, and ‘Time is brain,’ explains Nagesh Uppuluri, Senior VP of Global Clinical and Medical Affairs at Terumo Neuro. “Millions of neurons die every minute during stroke, which could result in irreversible damage; every minute counts.” 

Development of neurovascular technology

This race against time is not only facilitating speedy access to primary care, but it is driving the development of quick, effective and minimally invasive devices designed to enhance treatment outcomes. Terumo Neuro is globally known for medical device innovations that redefine what is possible in neuroendovascular treatment to meaningfully advance both physician practice and patient outcomes. 

“Over the last 15–20 years, we have seen a rapid rate of technological innovation within the neurovascular space. Devices used to treat aneurysm and stroke are becoming more precise, minimally invasive, less traumatic, safe and improving outcomes,” says Uppuluri. “In the past, coils were the primary method for treating brain aneurysms, but with the introduction of devices like the FRED X flow  diverter, we are now able to treat the underlying disease mechanism — not just the rupture risk.” 

Terumo Neuro’s FRED X flow diverter sits within a wide portfolio of products that continue to set the standard for neuroendovascular care, including the SOFIA catheter and the Woven EndoBridge (WEB) device. 

We are now able to treat the
underlying disease mechanism
— not just the rupture risk.

Evidence-based innovation

Setting themselves apart through evidence-based innovation, Terumo Neuro is dedicated to generating the clinical data needed to bring neuroendovascular products to market. Uppuluri says: “Clinical evidence instils trust in both physicians and patients, ensuring that devices are not only safe but also effective at improving outcomes.” Working alongside clinicians to accurately address real-world clinical needs, the company’s commitment to innovation in neurovascular technology is contributing to the improvement of global patient outcomes. 

“Stroke was once one of the leading causes of death and disability, but thanks to this improved technology and clinical advancements, we’re seeing a slight reduction in its burden. However, there is far more work to be done to make a significant impact, thus our continued commitment to innovation in this area,” he explains. “The clinical evidence we have today shows that many patients can live disability-free lives after stroke treatment, which is an incredible achievement that is giving people back their pre-stroke quality of life.” 

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Incorporating physician feedback into the stroke and brain aneurysm device innovation process can more accurately address clinical needs, explains Carsten Schroeder, President and CEO of Terumo Neuro. 

Can you provide an overview of the company and the conditions you treat?

Our neuroendovascular business originated as MicroVention, a California-based company acquired by Terumo in 2006. We specialise in innovative stroke and aneurysm treatment devices, offering a full portfolio of ischemic and haemorrhagic stroke solutions. Alongside our commitment to best-in-class products, we are leveraging our global infrastructure to advance neuroendovascular innovation. 

How has stroke and aneurysm treatment evolved over the past 15–20 years?

In the early 2000s, the primary treatment options for brain aneurysms were surgical clipping or coiling. Over the last two decades, we’ve pioneered the development of catheter-based, minimally invasive, neuroendovascular technologies that provide therapeutic advantages for neurovascular disorders. The evolution of these minimally invasive techniques has resulted in safer, more effective treatments with fewer complications. 

Our braided devices offer superior visualisation and manoeuvrability in complex anatomy for aneurysms, otherwise known as a haemorrhagic stroke. Meanwhile, innovations like the SOFIA catheter provide safer and more efficient treatment options for ischemic stroke. 

The SOFIA catheter has set the
standard in ischemic stroke
treatment for over 11 years.

Why are physician partnerships and innovation part of your DNA?

Physician collaboration is central to our innovation process. We work closely with neurovascular specialists to understand the real-world challenges they face. By integrating physician feedback into our design process, we develop devices which accurately address clinical needs. We actively partner with physicians to provide training and education, to ensure that our products and solutions are used both safely and effectively.

Can you highlight an innovative product and its impact on patient outcomes?

The SOFIA catheter has set the standard in ischemic stroke treatment for over 11 years. Designed for aspiration thrombectomy, it efficiently removes clots from brain arteries, restoring blood flow quickly. The SOFIA catheter is now recognised globally as the gold standard in aspiration catheters. 

The Woven EndoBridge (WEB) device, a novel intrasaccular implant, has simplified the treatment of intracranial and bifurcated brain aneurysms in haemorrhagic stroke care. By eliminating the need for adjunctive devices and open brain surgery, the device has a proven track record of low complication and rebleed rates. 

What are the future priorities for your company in neurological health?

We are constantly evolving with our innovations. We are expanding into new areas, including middle meningeal artery embolisation and liquid embolics for chronic subdural haeomatomas. Additionally, research explores venous stenting for conditions like tinnitus and hydrocephalus treatment through endovascular approaches. In neuro-oncology, we are developing embolic solutions to improve tumour treatment. We continue to focus on generating clinical data to advance neurointervention and are open to working with external companies to develop new neuroendovascular technologies using our global infrastructure. 

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Cerebral palsy (CP) is a lifelong condition affecting movement and muscle control. Despite its prevalence, it remains overlooked and misunderstood.

Cerebral palsy (CP) is caused by an issue with the brain that develops before, during or soon after birth. It is a condition that affects muscle control and movement. It is the most common lifelong motor disability in the world.

With numbers in the UK similar to that of people living with multiple sclerosis and Parkinson’s, CP does not receive the same attention and is only just being seen as a life-long condition. Some of the main challenges are the archaic and pejorative attitudes attached to CP.

Lack of cerebral palsy support harms adulthood

Combating negative attitudes is difficult, even within the healthcare system. Adults with CP live on a precipice. While many of us receive extensive care as children, that support abruptly ends at 18. The narrative is often “this is as good as it gets.” This leaves individuals to navigate adulthood without the care or resources they need.

Scope’s CP Network and Online Community seek to provide that support. Without adequate care, people with CP can experience premature ageing. This can lead to experiencing an increase in pain and a decline in mobility, which can then restrict life choices and social participation.

CP does not receive the same
attention and is only just being
seen as a life-long condition.

Disabling societal prejudices

We are far more disabled by society’s attitudes than by our condition itself. Being denied access simply because we ‘look drunk’ — judged not for who we are, but for how we move or sound. Plus, there’s the constant disbelief: ‘You can’t have CP; you look fine.’ Since when did appearance determine diagnosis? It may surprise some to learn that a large percentage of people with CP can walk unaided. Our community is diverse, with a wide range of needs, and it’s time that was properly recognised.

Growing cerebral palsy representation

Despite the challenges I witness daily in my work with Scope’s CP Network, I remain optimistic. There is a positive shift occurring within the CP community. Representation of CP is becoming more visible in mainstream media, from shows like The Traitors to Sex Education. These portrayals help dismantle misconceptions and highlight the diverse experiences of those living with CP.

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Cervical dystonia affects daily life in significant ways. Understanding the patient journey helps improve care, support and awareness of this condition.

Living with dystonia presents unique challenges, making it essential to understand the patient’s journey for better care and support. In collaboration with the European Reference Network for Neurological Diseases (ERN-RND) and with support from Ipsen, Dystonia Europe has developed the Cervical Dystonia Patient Journey to highlight the experiences of individuals affected by this condition.

What is cervical dystonia?

Dystonia is a movement disorder characterised by sustained or intermittent muscle contractions, leading to abnormal, often repetitive movements or postures. Cervical dystonia (CD) is the most common form of focal dystonia in adults, typically beginning between ages 30 and 50 and progressively worsening over five years. This painful condition causes involuntary neck muscle contractions, leading to the head twisting, tilting or turning uncontrollably.

The role of patient journeys

Patient Journeys serve as infographic tools that visualise patients’ needs throughout their rare disease care. Designed from the patient’s perspective, these journeys help clinicians address care gaps effectively. The Cervical Dystonia Patient Journey Map (CDPJM) provides a comprehensive view of the patient experience, spanning pre-diagnosis to long-term treatment.

Designed from the patient’s
perspective, these journeys help
clinicians address care gaps effectively.

Development of the patient journey map

To develop the CDPJM, a survey was conducted with 15 individuals affected by cervical dystonia, followed by validation through an expert-patient focus group. Qualitative analysis identified five key stages of the patient journey: (1) symptom onset; (2) diagnosis and therapeutic relationship with healthcare professionals (HCPs); (3) initiation of care for cervical dystonia; (4) start of treatment; (5) living with treated cervical dystonia

Within these stages, gaps in care and barriers to treatment were identified. The Patient Journey Map highlights critical updates needed in healthcare systems, including improved communication, accessible high-quality information and clear treatment pathways.

Emphasising needs of the dystonia community

By understanding the dystonia patient journey, we can enhance early detection, improve access to specialised care and optimise treatment approaches. Our goal is to empower individuals with dystonia, equip healthcare providers with valuable insights and advocate for policies that prioritise the needs of the dystonia community.

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Dystonia is a neurological movement disorder affecting over 100,000 people in the UK, yet so few have heard of it. We aim to change that.

What is dystonia?

Dystonia is a neurological movement disorder. However, there is so much more to this often misunderstood condition. Dystonia causes uncontrollable muscle spasms, triggered by incorrect signals from the brain. These spasms can be painful and debilitating. Dystonia is the third most common movement disorder in the UK, yet awareness remains low. It can affect any region of the body — including the eyelids, face, jaw, vocal cords, torso, limbs, hands and feet — and presents differently depending on the area affected.

Each type of dystonia has its own clinical name, making diagnosis and treatment even more complex.

Sadly, long waiting times and frequent misdiagnoses mean people can go years without answers, often enduring an immense emotional toll alongside their physical symptoms.

We know the struggle of living with
dystonia goes far beyond the physical.

Providing support and understanding

At Dystonia UK, we know the struggle of living with dystonia goes far beyond the physical. When you’re facing a condition so few understand, it can feel incredibly isolating. That’s why we’re dedicated to creating a community where no one feels alone.

Our nationwide support groups provide a safe space to share experiences, receive practical advice and connect with others who truly understand the challenges of dystonia. We also host community events across the UK, bringing people together in solidarity while raising awareness and offering opportunities to meet healthcare professionals and experts.

Raising awareness through creativity

Education is key to understanding dystonia. That’s why we’ve developed animations to help explain the condition in clear, engaging ways, making it easier for patients, families and professionals to grasp the complexities of dystonia. Our podcast also shares personal stories from those living with the condition, reminding listeners that they are never alone.

Join the community

On our website, explore FAQs, webinars, podcasts, animations and more. Together, we aim to build a future where no one has to ask, ‘What is dystonia?’ — because everyone will already know.

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The Health Secretary has ambitious plans to fix the NHS. Transforming dementia care must be on his agenda.

All eyes are on Wes Streeting, Secretary of State for Health and Social Care, as he prepares to unveil a plan to reshape the NHS over the next decade. With nearly 1 million people living with dementia in the UK,¹ and 77% of them experiencing other long-term conditions,² it’s vital they are at the heart of the plan if it’s to succeed.

Dementia care is falling short

When the Government launched its ‘biggest ever national conversation on the future of the NHS’ last autumn, we surveyed over 4,700 people with dementia, their families and specialist dementia nurses about their experiences of NHS dementia care in England.

Nearly three-quarters (73%) of respondents³ revealed a sad truth: people affected by dementia feel they don’t receive the care they need to manage the complex challenges of the condition. As a result, they feel ‘abandoned,’ ‘alone’ and ‘frightened.’ With one in two people set to be affected by dementia in their lifetime,¹ and no cure in sight, many will have to cope with its devastating effects alone unless immediate action is taken.

Improving dementia care will not only
enhance lives but also lead to cost savings
and benefits across the health system.

Dementia care can be fixed

When people get the right support at the right time, it can be life-changing. However, with dementia removed from this year’s NHS planning, the upcoming NHS 10-year plan is a crucial opportunity to integrate the structures and resources needed for an effective dementia care pathway. Essential steps the Government must take include:

• Increasing the number of specialist dementia nurses, especially in hospitals, to improve outcomes and reduce hospital stays
• Improving support for unpaid carers
• Removing barriers to care, including  introducing an age-appropriate pathway for people with young onset dementia, where symptoms occur before the age of 65

Now is the time for action on dementia care

Improving dementia care will not only enhance lives but also lead to cost savings and benefits across the health system. As Wes Streeting prepares to publish the NHS 10-year plan, we urge him to put dementia care on his agenda.

[1] Alzheimer’s Research UK. 2024. Prevalence and incidence of dementia.
[2] Gov.uk. 2019. Dementia: comorbidities in patients – data briefing.
[3] Dementia UK carried out a survey of 4,792 people affected by dementia between 14th and 25th November 2024.

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Parkinson’s is the fastest-growing neurological condition, affecting 153,000 people in the UK. With over 40 symptoms that evolve, each person’s experience is unique, and there is currently no cure.

Receiving the right care from health professionals following a diagnosis is important to ensure symptoms are well managed.

Types of Parkinson’s professionals

A Parkinson’s healthcare team comprises a variety of healthcare professionals from GPs and Parkinson’s nurses to pharmacists and specialist therapists, such as physiotherapists. Each expert will have a different role to play in helping someone with the condition manage their symptoms.

However, understanding which services could benefit you, and navigating the system can be challenging for many people. Below are three ways people with Parkinson’s and their loved ones can help manage symptoms and access healthcare.

1. Do your research

Knowing the condition and how it affects you will help you better understand and manage your symptoms and healthcare. Whether you have Parkinson’s or support someone with the condition, Parkinson’s UK offers a number of resources on its website and in printed guides. Find out more about who can help and what is available at parkinsons.org.uk/health-team.

A Parkinson’s healthcare team comprises
a variety of healthcare professionals.

2. Reach out for support

Parkinson’s UK offers in-person, online and helpline support for people living with Parkinson’s, their loved ones and carers. It has a team of 90 local advisers who can offer support wherever you live in the UK. It also has a confidential helpline (0808 800 0303), which is free to call. 

You can speak to an expert about which health professionals can help, the type of healthcare and support you should be getting and what to do if you’re having problems in your area. 

3. Managing your condition

There are lots of things you can do to help manage your Parkinson’s — from doing regular physical activity and maintaining a healthy, well-balanced diet to joining local groups and connecting with others. Remember, no matter what stage you are at in your Parkinson’s journey, Parkinson’s UK has people and services to help you.

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