Brain disorders can be highly disabling and they are also remarkably common, affecting one in three European citizens during their lifetime.¹ The big question for policy makers trying to minimize disability from brain disorders is where to focus their limited resources.

The Value of Treatment for Brain Disorders policy white paper was launched by the European Brain Council (EBC) in Brussels on Thursday 22 June 2017.² It makes policy recommendations based on in-depth case studies in nine disease areas: schizophrenia, Alzheimer’s disease, epilepsy, headache, multiple sclerosis, normal pressure hydrocephalus, Parkinson’s disease, restless leg syndrome and stroke.

Professor David Nutt, President of the EBC, introduced the document and highlighted examples of best practice which demonstrate that interventions can be cost-effective and lead to better outcomes.

Speakers representing a cross-section of disease areas highlighted the importance of:

• prevention and screening
• timely diagnosis
• early intervention
• patient education and empowerment
• seamless and coordinated care.

In his closing remarks, Professor Nutt reminded delegates that the “brain is still a bit of a mystery”. He urged those responsible for budgets to invest as much as possible into basic research to complement translational and clinical trials.

This policy white paper represents the culmination of a 2-year collaborative research project by the EBC, and brings us a step closer to improving the standards of care for people with brain disorders across Europe.

References

1. Wittchen HU, Jacobi F, Rehm J et al. The size and burden of mental disorders and other disorders of the brain in Europe. Eur Neuropsychopharmacol 2011;21:655–79. doi: 10.1016/j.euroneuro.2011.07.018.

2. European Brain Council. The Value of Treatment for Brain Disorders, June 2017. Available from: https://www.braincouncil.eu/wp-content/uploads/2017/06/EBC-VoT-White-Policy-Paper.pdf (Accessed 3 July 2017).

Many people with multiple sclerosis (MS) wait for years for an accurate diagnosis, a time described by some as ‘overwhelming’, according to the results of a survey published this week by the MS Society.¹ MS leads to irreversible disability if left untreated and although there is no cure, early diagnosis and treatment play a vital role in preventing disability from accumulating.² The disease can be diagnosed by a neurologist – sometimes from a clinical examination and initial brain scans³ – but significant delays often occur before this point. The survey of over 1500 people with MS found that:¹

• a fifth had to wait between 1 and 3 years for a diagnosis after visiting their general practitioner (GP) with symptoms
• a quarter saw their GP more than four times before being referred to a neurologist
• approximately half were initially diagnosed with a trapped nerve, stroke, depression, anxiety or stress.

Michelle Mitchell, Chief Executive of the MS Society, stated that “Our findings highlight the struggle people go through for years before they get an MS diagnosis. Being misdiagnosed or experiencing symptoms that can’t be explained can put a considerable strain on people’s emotions and health ... While we are aware that MS is a complex condition that isn’t easy to diagnose, we don’t want thousands of people to be left in ‘limbo’ suffering needlessly.”¹

The survey illustrates how symptoms of the disease are often mistaken for other conditions. In MS, the body’s own immune system damages tissue in the brain and spinal cord, and the initial symptoms can vary widely depending on the locations of damaged areas. The most common types of symptoms are sensory (numbness, tingling, burning pain), motor (weakness, stiffness, clumsiness, difficulty walking), visual and fatigue (a feeling of lacking physical or mental energy that interferes with usual or desired activities).⁴

Mitchell commented, “It’s important for GPs to recognize the warning signs and refer people promptly to a consultant neurologist who can then make an accurate diagnosis. Most people who experience MS-like symptoms won’t have the condition, but if you’re concerned for any reason, your GP should still be your first port of call.”¹ 

1. MS Society. Symptoms of MS are mistaken for other conditions, survey reveals. Available from: https://www.mssociety.org.uk/ms-news/2015/05/symptoms-ms-are-mistaken-other-conditions-survey-reveals (Accessed 28 May 2015).

2. Costello K, Halper J, Kalb R et al. The use of disease-modifying therapies in multiple sclerosis: principles and current evidence. Multiple Sclerosis Coalition, 2014. Available from: https://c.ymcdn.com/sites/www.mscare.org/resource/resmgr/PDF/DMT_ConsensusMSC_color.pdf (Accessed 28 May 2015).

3. Runia TF, Jafari N, Hintzen RQ. Application of the 2010 revised criteria for the diagnosis of multiple sclerosis to patients with clinically isolated syndromes. Eur J Neurol 2013;20:1510–16. doi:10.1111/ene.12243

4. Multiple Sclerosis International Federation. Atlas of MS 2013: mapping multiple sclerosis around the world. Multiple Sclerosis International Federation, 2013. Available from: https://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf (Accessed 28 May 2015).

People with mental health needs, autism and learning disability should be given greater rights so they can live independently, be included in their community and make choices about their own lives.

That’s the vision of a new government consultation, No voice unheard, no right ignored, that aims to ensure everyone with a learning disability, autism or with mental health needs has a right to lead their life with the same opportunities and responsibilities as anyone else, and is treated with the same dignity and respect.

“We are not just a label,” states Gavin Harding, MBE, Co-Chair of the Transforming Care Assurance Board, in the Foreword to the consultation. “We are not someone you can treat differently. We are human beings. We have an entitlement to a life just like you.”

The consultation proposals are based around four key principles:

• People should be able to take charge of decisions about their care, supported by family and friends
• People should have the ability to live as independently as possible with support and to have access to community, to family and to opportunities like anyone else
• There should be real person-centred planning, with the individual themselves at the heart
• Services need to have greater integration and work together to give people what they need, together with clear accountability

These proposals echo recommendations outlined in Schizophrenia: Time to commit to Policy Change that call for greater support for people with schizophrenia to remain in their community; an integrated approach by healthcare professionals that addresses both mental and physical health needs; and greater support for families and carers of those living with schizophrenia.

People with mental health needs, autism and learning disability, along with their families, carers, health and social care professionals, are being encouraged to take part in the consultation which runs until 29 May 2015. The consultation is by the Department of Health in England. The Mental Health Act applies across England and Wales. Any legislative changes in Wales would have to be agreed by the Welsh Assembly.

Today’s World Mental Health Day highlights the 26 million people around the world who are living with schizophrenia – and millions more who are impacted by it.¹

It not only affects individuals who have the illness, but also family members, carers, healthcare professionals, employers, organizations and policy makers looking to improve the day-to-day lives of people with schizophrenia. It includes society – you and me.

Dr Patt Franciosi, World Mental Health Day Chair, writes in the World Federation for Mental Health’s report Living with Schizophrenia, “a challenge facing the mental health advocacy community is to create public pressure to change national mental health policies around the world, so that they take into consideration the scientific, clinical and social advances of recent decades. It is our aim to improve public understanding of schizophrenia and draw attention to ways in which better care can be provided.”

News that the UK’s deputy Prime Minister Nick Clegg has pledged to make more money available for mental health in the next Parliament if the Liberal Democrats are in government, is welcomed. Also welcome is the flurry of articles, reports, tweets and Facebook postings this week, raising public awareness of living with schizophrenia. It’s a step in the right direction, but there is still a long way to go.

“Society has moved a long way in attitudes towards all kinds of things over recent decades, but the way people tend to respond to schizophrenia hasn’t changed much,” says David Crepaz-Keay, head of empowerment and social inclusion at the Mental Health Foundation, who himself has been living with the diagnosis of schizophrenia for 35 years. “Being more aware of the people with schizophrenia, who are leading successful or even ordinary lives … would be very useful for increasing awareness, reducing isolation after diagnosis and helping to move us away from that stigma.”

This chimes with recommendations in the report Schizophrenia: Time to commit to Policy Change, which includes calls for:

• development and implementation of guidelines and education programmes to support the inclusion of people living with schizophrenia to enter and remain in their community, workplace or school
• consultation between healthcare professionals, stakeholders, families and carers, in order to regularly revise, update and improve policy on the management of schizophrenia
• provision of information, educational programmes and concrete support to families and carers on how to enhance care for an individual living with schizophrenia
• ongoing and regular awareness-raising campaigns

Let’s hope the world’s spotlight on living with schizophrenia doesn’t go out at midnight tonight; with time, lives can be changed.

1. World Health Organization. The global burden of disease: 2004 update. Available from: https://www.who.int/healthinfo/global_burden_disease/2004_report_update/en/ 

If you’ve ever had that feeling of doing something different without quite knowing why, welcome to the world of ‘nudge’. The principles of nudge were popularized by Thaler and Sunstein in the book Nudge published in 2008.¹ Since then a range of professionals have applied these principles to the goal of changing specific human behaviours. Examples of this technique to bring about behavioural change as an alternative to the threat of sanctions  include the provision of information about how many fellow citizens pay their taxes on time and auto-enrolment in company-based pension schemes.

An early application of the nudge approach in public health is represented by the idea of providing mothers with vouchers to encourage breast feeding. Could healthcare professionals also be ’nudged’ into changing their clinical practice? One example is the use of checklists in surgical theatres and intensive care, an idea borrowed from the aviation industry to meet the need to reduce human error as aircraft became more complex machines to operate.² The introduction of surgical checklists has been documented to reduce mortality, however, adoption of checklists does not occur overnight. In the meantime, it could be argued that ‘unnecessary’ surgical complications and deaths have occurred.

The emergence of evidence-based medicine has been associated with the development of policies and consensus guidelines. As with checklists, the application of new recommendations in routine clinical practice can be delayed. Research into identifying techniques to reduce this delay exist.³ An important step in the process seems to be the identification of barriers to the adoption of specific sets of clinical guidelines. With this in mind, the development of new health policy and guidelines, although an arduous task in itself, should be seen as just one part of the process to improve patient care. Without at the same time researching possible objections to implementation and to make recommendations for the best way to change clinical practice is missing a crucial step.

Now, how do we nudge policy makers into doing this?

1. Nudge. Thaler RH, Sunstein CR. 2008. Available from: https://yalepress.yale.edu/book.asp?isbn=9780300122237.

2. Walker IA, Reshamwalla S, Wilson IH. Surgical safety checklists: do they improve outcomes? Br J Anaesth 2012;109:47-54.

3. Shaw EJ, Thornton J, Chamberlain K and Ayiku L. Factors influencing implementation of clinical practice guidelines: what do users think? GIN poster presentation, Berlin, 2012. Available from: https://www.decide-collaboration.eu/sites/www.decide-collaboration.eu/files/uploads/FINAL-Shaw2-%20poster%202014.pdf.