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The value of treatment for brain disorders – new report

3 July 2017 Lucy Eberhard

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).

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Delays in diagnosis are overwhelming for many people with multiple sclerosis

28 May 2015 Heather Lang

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).

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Government consultation launched to improve the lives of people with mental health needs, learning disability and autism

12 March 2015 Sue Radford

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.

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New Patient Charter for rare diseases launched

22 October 2014 David Bennett

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.

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World spotlight on living with schizophrenia

10 October 2014 Sue Radford

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/

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Policy by stealth

17 September 2014 David Bennett

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.

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More must to be done to help people with mental illness stay in work

9 September 2014 Sue Radford

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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A fair policy on antibiotic prescribing

20 August 2014 David Bennett

The threat posed by antibiotic resistance continues to feature prominently in the UK media. The recent news angle is that general practitioners stand accused of giving into patient pressure to prescribe an antibiotic even though the patient’s infection is most likely viral rather than bacterial in origin. This patient demand is considered irrational. But is it?

As a medical representative for Beecham Laboratories, the reality of local ‘policy’ at the level of individual GPs was an eye opener. In off-guard moments some GPs would confess to prescribing an antibiotic to selected classes of patient likely to be suffering a viral infection but with important occupations. This was on the basis that their condition might be caused, or complicated by, bacteria. Typical groups of professionals deemed eligible for the privilege of an antibiotic prescription included police officers, fire fighters and healthcare professionals!

For those patients with more ‘menial’ occupations, the insurance value of an antibiotic to them as an individual still holds. It’s at the societal level that such behaviour can be questioned. In this case, the conflict between the individual and the needs of the group parallels the case for maintaining herd protection through mass immunization.

Until the promise of the new Longitude Prize to develop a point of care test for bacterial infection is realized, we are left with a messy arrangement of custom and practice rather than a policy which balances the needs of individuals and society.

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Making headway in schizophrenia genetics

23 July 2014 Liz Eltham

A momentous step has been made in the research of the biology of schizophrenia. It has been known for some time that genetic factors are involved in the development of schizophrenia, but previous studies have not been large enough to pinpoint the specific variations responsible.¹ A study published in Nature this week has discovered 108 genes which may increase a person’s risk of developing the disease, 83 of which were previously unknown.²

The study, led by Michael O’Donovan, Cardiff University, UK, pooled genetic samples from 36 989 people with schizophrenia and 113 075 controls, mainly from northern Europe. This huge sample size allowed an algorithm to be devised that can calculate risk scores for the contribution of each variant gene to schizophrenia. This exciting discovery could eventually be used to predict whether an individual might develop the disorder. Knowing more about the genetic risk of schizophrenia provides new insights into the causes of the disease. Many of the genes identified are expressed in the brain, but others are expressed in the immune system; this supports the theory that an immune trigger is involved.

The research was funded by multiple governments and charities; with more funding, follow-up studies can be conducted, the results of which could make way for a new class of therapies for the treatment of schizophrenia. Will some people with schizophrenia be happier to comply with treatment if they understand that their illness has a physical component?

There is still much to learn about the illness, and we must not forget the importance of an integrated, multidisciplinary approach to managing people with schizophrenia, as recommended in the policy report Schizophrenia: Time to Commit to Policy Change. “Today’s research provides an interesting and promising step in the search for more suitable treatment options than currently available,” remarked Beth Murphy from the charity Mind, “but it is vital that health professionals recognize the need for a holistic approach.”

1. Riley B, Kendler KS. Molecular genetic studies of schizophrenia. Eur J Hum Gen 2006;14:669–80.

2. Schizophrenia Working Group of the Psychiatric Genomics Consortium. Biological insights from 108 schizophrenia-associated genetic loci. Nature 2014; doi:10.1038/nature13595.

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Better health care through state/industry partnership

20 June 2014 David Bennett

The announcement this week (https://www.gov.uk/government/news/uk-commits-to-new-action-to-find-breakthrough-on-dementia) of a joint UK Medical Research Council/industry partnership to tackle dementia – UK Dementias Research Platform – is not only good news for that particular disorder but more generally for health care. The budget impact of inadequate treatment for dementia is huge. According to work by Professor Martin Knapp at the London School of Economics, the cost to the UK economy is £21 billion. Delaying the progression of dementia by even 3 years could reduce this cost burden significantly, possibly by up to £5 billion per year.

Traditionally, the government has been responsible for dealing with public health problems. Cases of dementia are not only attributed to genetic factors, but environmental/lifestyle causes are clearly implicated. On this basis, dementia is as much a public health issue as AIDS, diabetes or cardiovascular disease (CVD). In the case of CVD, the landmark initiative in North Karelia, Finland, in the 1970s showed the power of an integrated approach to reducing the impact of this disorder (https://www.who.int/chp/about/integrated_cd/index2.html).

When new therapies are part of the solution to a major chronic and debilitating illness, a partnership involving industry has to be the basis for improving the outlook for patients. The recent history in the development of effective and approvable treatments for dementia has been disappointing. The new initiative on dementia is to be welcomed as a policy model for improving health care. Other areas of medicine could equally benefit from this approach, not least focusing on the urgent need to develop new antibiotics.

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