Neurology - Q4 2020 by Mediaplanet UK&IE

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Q4 / 2020

NEUROLOGY

Full campaign on www.healthawareness.co.uk

“Innovation in the brain space is crucial.” ~ Frédéric Destrebecq, Executive Director, European Brain Council

“People with life limiting neurological conditions can require intensive support from many healthcare professionals due to the complexity of the disease.”

“MS: It is the most common progressive neurological condition in young people today.” ~ Ayad Marhoon, 23 – living with MS

~ Debbie Quinn, Chair, The Royal College of Nursing’s Neuroscience Forum ©W I G G LE STI C K

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IN THIS ISSUE

Disrupt and rewire: innovating in neuroscience Collaboration and engagement within the brain community is needed to foster investment in innovation and address the growing burden in brain disorders.

“The disruptive and interruptive nature of epilepsy.”

he brain is undoubtedly the most important organ in the human body, as it controls all aspects of our lives. There is no health without brain health. However, the brain remains one of the most mysterious organs.

~ Maxine Smeaton, Chief Executive, Epilepsy Research UK

06 “There’s growing evidence COVID-19 itself has serious direct and indirect effects on the nervous system, including encephalopathy, stroke, and neuropsychiatric disorders.” ~ Dr Anne Cooke, Chief Executive, British Neuroscience Association (BNA)

06 “Our limited understanding of the human brain means we still have no cure for most neurological disorders and limited treatment for many.” ~ Donna Walsh, Executive Director, European Federation of Neurological Associations

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WRITTEN BY

Frédéric Destrebecq Executive Director, European Brain Council

The beauty and burdens of the brain Recent studies on the Global Burden of Disease1 showed that neurological disorders were the leading cause of disability-adjusted life years globally and the second cause of deaths after cardiovascular diseases2. In comparison to other non-communicable diseases, brain disorders constitute the most burdensome disease group. The growing number of citizens being diagnosed with brain conditions makes it clear that this burden will not change its course. The value of innovation It is estimated that brain disorders account for up to 45% of total healthcare budgets and this burden grows with the ageing population. Yet, compared to other disease areas, the pace of innovation in this field has traditionally been hindered by multiple factors, starting with the complexity of the brain itself. Innovation in the brain space is crucial. Despite considerable advances in basic neuroscience, our understanding of the brain’s function and the mechanisms behind brain disorders remains limited. Failure rates in drug development are higher in neuroscience than in other areas and new treatments often take longer to reach the market than in other disease areas. We are still striving to find cures or truly effective means

Collaboration and engagement within the brain community are needed to create an enabling environment to foster investment in innovation and to remove existing barriers. of delaying or reducing the burdens placed on individuals and society by brain disorders. Collaboration is the key The complexity of brain disorders is a testament to the need for a multistakeholder approach to tackling them. Collaboration and engagement within the brain community are needed to create an enabling environment to foster investment in innovation and to remove existing barriers. The launch of the Brain Innovation Days3 is the answer from the brain community to address these urgent needs for investment in innovation and fostering collaboration in the brain ecosystem. We need to disrupt and rewire; we need to turn the research and innovation process in neuroscience around. We need to invest in the future of citizens before we reach a burden we can no longer fix. One innovation at a time, we can create a better future without the burden of brain disorders. References 1. GBD 2015 Neurological Disorders Collaborator Group. Global, regional, and national burden of neurological disorders during 1990–2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Neurol 2017; 16: 877–97. 2. https://doi.org/10.1016/S1474-4422(19)30029-8 3. Brain Innovation Days, https://www.braininnovationdays.eu

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I try not to think about negative scenarios with my MS Nurses are pivotal in enabling people to manage their conditions.

Nursing and neurology People with long-term neurological conditions can live active and fulfilling lives. However they can experience ‘flare-ups’ or relapses and a deterioration in both physical health and mental health.

T WRITTEN BY

Debbie Quinn Chair, The Royal College of Nursing’s Neuroscience Forum

he unpredictability of neurological conditions can prove very frustrating to people and no two people will follow the same course, though many will have similar symptoms. Some may remain at home with support and others may require hospital admission during the course of their life. Innovations in technology and specialist medication In all of these circumstances however, nurses are pivotal in enabling people to manage their conditions. This may involve nurses with specialist skills in neuroscience as well as nursing staff with a range of other skills. In recent years there have been many technologies and specialist medication which can help to prevent deterioration and improve the lives of people with long term neurological conditions. Timely access and specialist knowledge are crucial to gain the maximum effect of these treatments and innovations. The role of the specialist nurse There is a common thread through all of this, the specialist nurse role. These nurses, like all nurses, are highly skilled professionals and can provide support throughout someone’s disease trajectory. They have an in-depth knowledge of their area of expertise and are often the key figure for people to contact for advice and support. They

can also support and offer training to other healthcare professionals as well as carers and family members. People with life limiting neurological conditions can require intensive support from many healthcare professionals due to the complexity of the disease. Again specialist support is critical to understand individual needs. Symptom management and control is crucial.

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In the last year alone, more than 1,250 people under 30 have been diagnosed with multiple sclerosis (MS). It is the most common progressive neurological condition in young people today. Ayad Marhoon, 23, lives in Moortown in Leeds. He was diagnosed with MS in 2019. Although I was diagnosed with relapsing MS there’s still an uncertainty about it because my condition seems to be progressing. I didn’t need a walking stick back then but now I do. I also get a lot of brain fog, which can be tough when studying. We had a phone call recently about exploring new medications to see if any of them might work better, but I don’t know if they will. Generally, MS does kind of knock your confidence. Before I would have been happy to jump straight into anything but there are a lot of things now where I just can’t. For example, we went on a hike recently and in my mind, I was still able to climb up a mountain – I didn’t realise how much less able I’ve become. There’s a lot of planning ahead and making adaptations to everyday life with MS, and I’m learning to understand what I can and can’t do within my abilities. Thinking about the future I’m still trying to get a better idea of how my future is going to look. I’m an optimistic person and I try not to think about negative scenarios but naturally they’re always there. I hope to work as a clinical psychologist one day, but with the rate I’m changing I don’t know what things will be like in five years time. If I didn’t have to worry about MS getting worse that would be a massive weight off my shoulders. It’s difficult to plan ahead with that uncertainty.

There’s a lot of planning ahead and making adaptations to everyday life with MS, and I’m learning to understand what I can and can’t do within my abilities.

Helping use experience to make complex decisions To become a specialist in this area can take a number of years. This is traditionally in addition to three years of the nursing degree course to become a Registered Nurse. The experience I have gained from my many years in practice has enabled me to be proactive and make complex decisions in people’s homes, liaising with multiple agencies including GP’s, district nurses and carers to name a few. As people live longer and diagnostic testing continues to improve, we will undoubtedly see more patients with neurological conditions. Treatment advances and future developments offer some real innovation and positive outcomes for patients. What is evident is the need for specialists in this area to ensure the best care and outcomes for those with neurological conditions.

Tens of thousands of people with MS still have no treatment to help them as their condition advances. The Stop MS Appeal needs to raise £100 million to find new treatments, so no one needs to worry about their MS getting worse. By 2025, the charity hopes to be in the final stages of testing a range of treatments for everyone with MS. Text FUTURE8 to 70800 to donate £5 and support the Stop MS Appeal. Messages cost £5 plus your standard network rate. 100% of your text donation will be received by the MS Society. To opt-out of future text messages from us, please text NOSMS MSS to 88008. For full terms and conditions visit: www.mssociety. org.uk/privacy

WRITTEN BY

Ayad Marhoon MS Society Read more at healthawareness.co.uk

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Paid for by both Epilepsy Research UK and Arvelle Therapeutics

The disruptive and interruptive nature of epilepsy The numbers associated with epilepsy are staggering. As one of the most common serious neurological conditions, it affects around 65 million people worldwide.1

Patient story

r Anne Coxon’s daughter Katherine, 32, has a severe form of epilepsy which is resistant to existing treatment. Anne says: “At Katherine’s 18th birthday party I was told by a nurse from her specialist boarding school that she never thought she’d see her reach 18. To be honest neither did I. “The fact that Katherine is now 32 is undoubtedly due to research into the causes and treatment of epilepsy. As parents, we’ve never accepted that Katherine’s epilepsy could not be improved. We were lucky to have a paediatric consultant who involved Katherine in early research, whether novel medication, the ketogenic diet, neuropsychological assessments, psychiatric referrals or sleep studies.

It’s unacceptable that up to 30% of people with epilepsy continue to have their lives dominated by seizures. Continuous support from health professionals “We have regular conversations with health professionals about treatments for seizures, behaviour and mood. Sometimes it’s difficult to weigh up whether to trial a new drug or decrease an existing medication in case an improvement in seizure control is offset by a deterioration in behaviour or cognition. “It’s unacceptable that up to 30% of people with epilepsy continue to have their lives dominated by seizures. Research into epilepsy, gives us hope that our daughter Katherine may one day have a life without seizures.”

References 1. Moshe, SL, Perruca E, Ryvlin P, Tomson T. Epilepsy: New Advances. Lancet. Mar 7;385(9971):884-98. doi: 10.1016/S01406736(14)60456-6. Epub 2014 Sep 24. 2. Epilepsy Statistics https://epilepsyresearch. org.uk/about-epilepsy/ epilepsy-statistics/ 3. UK Health Research Analysis, 2018 ( // hrcsonline.net/reports/ analysis-reports/uk-healthresearch-analysis-2018/)

ere in the UK, there are currently 600,000 people with a known diagnosis of epilepsy - that’s more than multiple sclerosis, motor neurone disease and Parkinson’s disease combined. An astounding 100,000 emergency admissions are due to epilepsy each year, costing the NHS an estimated £1.5 billion annually.2 Lack of investment into epilepsy research Despite the high prevalence of this devastating condition, the only small number associated with epilepsy, is the amount of research funding it receives. Research funding into epilepsy lags behind other, less prevalent conditions. This alarming research funding gap has impeded progress, meaning a third of people continue to live with uncontrolled seizures that do not respond to treatment. This equates to over 180,000 people for whom research into treatments has not yet delivered. Impact of seizures on daily life For those living with the constant threat of seizures, virtually every life choice from education, careers to starting a family is affected. Perhaps unsurprisingly, people with epilepsy are also at increased risk of depression, social isolation and unemployment. Tragically, there are 21 epilepsy-related deaths every week in the UK. As the only UK charity exclusively dedicated to driving and enabling research into the condition, Epilepsy Research UK is working to correct this unbalanced equation. Earlier this year we launched a campaign to highlight the disruptive, interruptive impact of epilepsy. Our #ALifeInterrupted campaign aimed to draw attention to

the stark lack of funding into epilepsy and call for more investment to accelerate the pace of new discoveries. Research into epilepsy receives only 7% of neurological research funding and just 0.3% of the £4.8 billion3 total spent on health-related research in the UK. At a time when the need to make savings is paramount, there is a compelling case to invest more in epilepsy research. The return on investment could lead to substantial cost savings for the NHS and will make a life changing difference to those affected.

WRITTEN BY

Maxine Smeaton Chief Executive, Epilepsy Research UK

An astounding 100,000 emergency admissions are due to epilepsy each year, costing the NHS an estimated £1.5 billion annually.2 Helping to deliver new epilepsy medicines While this lack of funding has delayed progress, the investment that has been made epilepsy research has delivered important breakthroughs. Researchers have made enormous gains in the scientific understanding of how and why epilepsy occurs, thanks largely to technologies that allow for a deeper view of the brain’s activity, such as the electroencephalogram (EEG) and magnetic resonance imaging (MRI). Research into epilepsy has a strong track record of delivering new medicines. There has never been a better time to harness the recent, unprecedented advances in science, medicine and technology for the benefit of people living with this life changing condition. If we don’t, epilepsy will continue to interrupt the lives of those affected.

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What you need to know about drug-resistant epilepsy Epilepsy is a devastating disease which causes recurrent and often frequent seizures. Treatments are available, but even here there are challenges if a patient’s condition does not respond to medication.

Mark Altmeyer CEO, Arvelle Therapeutics International

Ilise Lombardo MD CMO, Arvelle Therapeutics International

Stuart Mulheron General Manager UK and Ireland , Arvelle Therapeutics UK

Written by: Tony Greenway

Paid for by Arvelle Therapeutics

pilepsy is a serious and debilitating neurological disease. It’s also a frightening one, because it can result in frequent seizures which can cause loss of body control and/or consciousness in patients. Anyone whose seizures are poorly controlled faces an increased risk or danger from accidents, or even death. It’s the thought of losing control unpredictably which makes epilepsy so alarming. Where might you be and what might you be doing when a seizure occurs? Crossing a road? Driving? Patients have to face this kind of worry on a day-to-day basis. Plus, many fear social stigmatisation if they have a seizure in public. How epilepsy impacts the lives of patients Epilepsy disrupts the normal balance between excitation and inhibition in the brain, and it’s this which causes seizures. It can start at any age and is usually lifelong and, shockingly, there are more people with the disease than you might think and it’s thought to affect around six million europeans.1 “This is a condition which can have a significantly negative impact on the lives of patients and their caregivers,” says Mark Altmeyer, CEO of Arvelle Therapeutics International, a biopharmaceutical company focused on bringing innovative treatments to patients suffering from central nervous system disorders. “Because the seizures are so unpredictable, they can disrupt a patient’s ability to drive, work, or live a ‘normal’ life. As it carries a high risk of mortality, its effects cannot be underestimated.” A number of anti-seizure medications are available and work effectively for many patients. But even here there are challenges because they don’t work for everybody, notes Ilise Lombardo MD, CMO of Arvelle. “Unfortunately, at least 30%2 of patients don’t respond to current medications,” she says. “We have to do more to find solutions that can help patients with the drug-resistant form of the disease.”

There is still a high unmet need for patients with drug-resistant focal onset seizures.

INTERVIEW WITH

Reducing seizure severity and becoming seizure-free So, what can drug-resistant epilepsy patients do to try to help their condition? There are actions they can take such as changing their diet and avoiding environmental triggers; but these may not have significant impact. At this point, invasive options, such as surgery, may be a possibility. However, not all patients will be suitable for this type of intervention. “I believe the goal for any patient with epilepsy — and particularly those who are treatment-resistant — is to reduce their seizure severity,” says Lombardo. “And, ultimately, their goal is to be seizure-free for an extended period of time which will enhance their quality of life. Any innovative medications to help patients get to that point will be welcomed as a big advance.” Arvelle is focused on finding innovative solutions so that patients with unmet needs are better able to manage their disease. References 1. Baulac M, de Boer H, Elger C, et al. Epilepsia. 2015;56(11):1687-1695 2. Chen Z, Brodie MJ, Liew D, Kwan P. JAMA Neurol. 2018;75(3):279-286;

The power of partnerships Why a joined-up approach is the best way to achieve better outcomes for people with epilepsy (PWE).

f key stakeholders in the epilepsy field work in partnership, they can achieve great things for patients, says Stuart Mulheron, General Manager of Arvelle. “A partnership doesn’t have to be a major agreement,” he stresses. “It can be as simple as working locally with clinicians, nurse teams and pharmacists; or, on a larger scale, with patient and professional associations. By working collectively, everyone in the partnership has a chance to make a positive impact on epilepsy awareness, and highlight the challenges faced by patients, such as stigma and exclusion whilst working together on practical solutions to improve patient outcomes.” “As a young company, we’re in the process of developing relationships with different stakeholders in the epilepsy field,” says Mulheron. “After all, we all want the same thing: to make patients’ lives better.”

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Time to make neurology our top priority

We need to bring the neuroscience community together It’s even more crucial in these testing times, with Brexit on the horizon and COVID-19 causing unprecedented, ongoing challenges to research, that the neuroscience community comes together to share advice and offer support to each another.

We must bring hope and solutions to people with neurological disorders, by prioritising neurological health and developing action plans to future-proof our healthcare systems.

arlier in the pandemic, the British Neuroscience Association held a consultation with neuroscientists to ascertain the impact of COVID-19 on neuroscience research, both at that time and looking ahead to the future. The findings – from over 400 researchers across a range of research settings and career stages – showed around 88% had seen a negative impact on the progress of their research. Nearly a third of respondents stated they may need to leave neuroscience as a direct result of COVID-19 disruptions. Findings like these raise serious concerns over the future of research into the nervous system and its disorders. Neuroscience research advances our understanding of conditions that contribute to disease worldwide such as dementia and epilepsy. Moreover there’s growing evidence COVID-19 itself has serious direct and indirect effects on the nervous system, including encephalopathy, stroke, and neuropsychiatric disorders.

The British Neuroscience Association (BNA) will be hosting its fifth Festival of Neuroscience remotely for the first time on 12-15th April 2021. Visit our BNA2021 for more information and to register: meetings.bna.org.uk/bna2021/

WRITTEN BY

Dr Anne Cooke Chief Executive, British Neuroscience Association

Donna Walsh Executive Director, European Federation of Neurological Associations

Decision makers have been looking away More worryingly, neurological disorders also caused almost a quarter of deaths associated with NCDs in Europe in 2017, at over 1.1 million. These figures are soaring and will continue to grow as environmental risk factors increase and as we see an increase in life expectancy. However, our limited understanding of the human brain means we still have no cure for most neurological disorders and limited treatment for many.