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:
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.
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).
More people will start to die from surgical procedures and cancer treatments unless urgent global action is taken to tackle antimicrobial resistance.
The call follows the publication of a new study in The Lancet that has investigated the potential consequences of increases in antibiotic resistance on the 10 most common surgical procedures and immunosuppressing cancer chemotherapies in the USA that rely on antibiotic prophylaxis.1
The findings estimate that up to half of infections after surgery and over a quarter of infections after chemotherapy in the USA are caused by organisms resistant to standard antibiotics. The study predicts that if antibiotics become 30% less effective in the USA, it could lead to 120 000 more infections in patients undergoing surgery or chemotherapy, and 6300 infection-related deaths each year.
“It really does show how urgent the situation is, how we now need global action if we are not to approach a post-antibiotic era where common infections will be untreatable,” said Dr Liz Tayler (of the World Health Organization’s Antimicrobial Resistance Secretariat) on BBC Radio 4’s Today programme.
Concern continues to grow worldwide. President Obama launched a 5-year plan earlier this year to fight the threat posed by antibiotic-resistant bacteria.2 In the UK, the Review on Antimicrobial Resistance, commissioned by Prime Minister David Cameron, is due to present its final report with recommendations for global solutions in spring 2016.3
1. Teillant A et al. Potential burden of antibiotic resistance on surgery and cancer chemotherapy antibiotic prophylaxis in the USA: a literature review and modelling study. Lancet Infect Dis 2015;doi:10.1016/S1473-3099(15)00270-4
2. National action plan for combating antibiotic-resistant bacteria (NAP). Available from: https://www.whitehouse.gov/sites/default/files/docs/national_action_plan_for_combating_antibotic-resistant_bacteria.pdf
3. Review on Antimicrobial Resistance. Available from: https://amr-review.org/home
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
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).
For the first time, antimicrobial resistance (AMR) is highlighted as a serious long-term challenge in the government’s National Risk Register of Civil Emergencies.1
According to the report, around 200 000 people in the UK could be affected by a bacterial blood infection that might not be treated effectively with existing drugs. Of those, 80 000 people could die.
The Cabinet Office document reflects the serious issue faced in Britain by the development and spread of antimicrobial resistance. It says: “the numbers of infections complicated by AMR are expected to increase markedly over the next 20 years”. High numbers of deaths could also be expected from other forms of antimicrobial resistant infection.
Whilst sobering news, it reflects the importance that is being placed in a coordinated approach to tackling AMR at national and global levels. The UK launched a five-year Antimicrobial Resistance Strategy in 2013 and published its progress report in December 2014.2
In July 2014, the Prime Minister commissioned a review of AMR, chaired by Jim O’Neill, which will recommend a package of actions by summer 2016. Its most recent report calls for targeted funding to support the development of new drugs, alternative approaches to the use of antimicrobials (e.g. better diagnostics), as well as the establishment of research centres of excellence.3 If this initiative provides the impetus for senior decision-makers in governments, philanthropic agencies and industry to collaborate and agree how best to tackle the problem of AMR, that will indeed be a great step forward.
1. National Risk Register of Civil Emergencies. 2015 Edition.
2. UK 5 Year Antimicrobial Resistance (AMR) Strategy 2013-2015. Annual progress report and implementation plan, 2014.
3. Tackling a global health crisis: initial steps. February 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:
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.
The charity, Genetic Alliance in the UK, launched its second Patient Charter at Great Ormond Street Hospital, London, this week (22 October). The emergence of specific treatments for rare, usually monogenetic conditions has been one of the most prominent developments in health care during the past decade. Payers are still adapting existing policy apparatus and organization designed for common diseases to cope with the rising number of new rare disease treatments.
The aim of the charter is to provide systematic input of patient evidence into the appraisal of new treatments. Compared to common diseases, the special value of the patients’ evidence arises from the often limited data available on the total impact of a rare disease on the individual and their family.
Another important objective is to clarify and simplify the current complex processes by which patients gain access to the treatment they need. The UK currently lacks a developed and streamlined process for evaluating rare disease treatments for reimbursement. This means that an increasing number of patients are likely to be forced to make individual applications to secure access to a licensed medication. As one patient representative at the London meeting noted, the patients are often the least able to campaign for treatment access due to the severity of their medical condition.
One of the influential agencies responsible for appraising these treatments in the UK, NICE, will be limited to evaluating three rare disease treatments per year even once their process is finalized. There is an adage that justice delayed is justice denied. The same could be said about the implementation of health policy.
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:
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/
One in four people experiences mental distress in any one year,1 and this number is due to rise. Psychological therapies are widely recognized as effective treatments for a range of mental health problems, including schizophrenia. The National Institute for Health and Care Excellence (NICE) recommends many forms of psychological therapy as first-line interventions, yet a new report by the ‘We Need to Talk’ coalition reveals there are huge variations in referral rates and waiting times around the country, and mental health services are unable to cope with demand.
According to the coalition, one in ten people wait over 1 year between referral and assessment, while 41% wait more than 3 months. These long waiting times can have a negative impact on patients’ lives, leading to greater stress, family breakdown, social isolation, financial problems, job losses and, in extreme cases, suicide attempts. The report also highlights that most people accessing psychological therapies have minimal choice in what treatment they have and when and where they receive it.
Psychological therapies have been shown to improve social functioning, reduce positive and negative symptoms, and decrease mood disturbances in people with schizophrenia. As discussed in the report Schizophrenia: Time to Commit to Policy Change, substantial evidence already supports the use of psychosocial therapies in schizophrenia, including cognitive remediation, social skills training and cognitive behavioural therapy (CBT), which has been shown by NICE to be cost-effective when used alongside medication.2
Despite this evidence and investment in Improving Access to Psychological Therapies (IAPT), it appears that psychotherapy services are being cut. A joint survey by the the UK Council for Psychotherapy (UKCP) and the British Psychoanalytic Council (BPC) reveals that 46% of therapists report an increase in waiting times over the last year and 56% report shorter courses of treatment.3
The We Need to Talk coalition is calling on the next government to make access to talking therapies an immediate priority after the election, ensuring the NHS in England offers a full range of evidence-based psychological therapies to everyone who needs them within 28 days of requesting a referral.
“We know that in some parts of the country investment in IAPT and other models has transformed lives as people have been able to access the help they need when they need it,” said Paul Farmer, Chair of the We Need to Talk coalition. “But far too many are facing unacceptably long waits or are struggling to even get a referral. This simply isn’t good enough.”
1. Goldberg D, Huxley P. Common mental disorders: a bio-social model. Routledge, 1992.
2. National Institute for Health and Care Excellence. 2014. Psychosis and schizophrenia in adults: treatment and management. Available from: https://www.nice.org.uk/Guidance/CG178 (Accessed 17 September 2014).
3. Summary findings from the UK Council for Psychotherapy and British Psychoanalytic Council members’ survey, February 2013. Available from: https://www.bpc.org.uk/sites/psychoanalytic-council.org/files/Summary%20findings%20from%20NHS%20survey.pdf (Accessed 17 September 2014).
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.
The rising number of working days lost to mental illness creates huge personal suffering and huge costs to the economy. About 70 million working days were lost to mental illness last year – an increase of 24% since 2009. Sickness leave, benefit payments and lost productivity cost the UK economy between £70 and £100 billion each year.
In her annual report, published today, Chief Medical Officer Dame Sally Davies says more must be done to help people with mental illness stay in work. “One of the stark issues highlighted in this report is that 60 to 70% of people with common mental disorders such as depression and anxiety are in work, so it is crucial that we take action to help those people stay in employment to benefit their own health as well as the economy.”
People with a history of mental illness are at greater risk of unemployment, job insecurity, early retirement, absenteeism and low salaries, while stress, bullying and other negative experiences at work can exacerbate mental disorders. Employment generates income, brings social status, shapes social roles and is a major factor in self-image and self-esteem.1
Dame Sally recommends employers offering flexible working hours and encouraging early and regular contact from managers during sick leave, to help people with mental illness stay in work.
This echoes recommendations in the policy report Schizophrenia: Time to commit to Policy Change. Unemployment is high among people with schizophrenia but supported employment interventions can produce substantial savings and reduce the risk of hospitalization.
“We endorse the CMO’s call for employment becoming a routine outcome indicator for mental health services,” said Professor Sir Simon Wessely, President of the Royal College of Psychiatrists. “We agree that more support is needed to keep those who are at risk of losing their jobs from joining the ranks of the long term sick.”
1. Annual Report of the Chief Medical Officer 2013, Public Mental Health Priorities: Investing in the Evidence, p152.
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