Rare Disease Day!

 

February 29^th is Rare Disease Day, an annual event co-ordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the national level.

The main purpose of the day is to highlight and raise awareness to the public and decision makers about rare diseases and their impact on patients’ lives

Rare Disease Day was first launched by EURORDIS and its councils of National Alliances in 2008.  With more than 1000 events taking place over the past four years, the publicity and media attention that has been generated, has enabled information to reach hundreds of thousands of people, including patients and patient representatives, as well as targeting policy makers, politicians, public authorities, researchers and anyone who is interested in rare diseases. 

The political momentum resulting from the day has also served for advocacy purposes and consequently has led to the advancements of national plans and policies for rare diseases in a number of countries where health inequalities may also be prevalent. 

What is a rare disease?

Information from the EURORDIS website describes a rare disease, also referred to as an orphan disease, as a disease which affects a small proportion of the population, that is less than 1 in 2000 citizens (Orphan Drug Regulation 141/2000). 

Most rare diseases are known to be genetic, chronic, degenerative, life threatening and where there is no existing effective cure.

It is estimated that there are between 6,000 and 8,000 rare diseases and each disease can be so broad and diverse that even symptoms and suffering levels for the same disease can vary from patient to patient.  In many cases, where symptoms are not always immediately evident, or where symptoms are common, can often lead to misdiagnosis and further pain.

For many rare diseases, there is often a lack of scientific and quality knowledge of the disease, which not only delays access to the appropriate diagnosis and medical procedures, but it is also detrimental for the patients’ health and wellbeing.    

The evidence shows that around 75% of rare diseases affect children and that 30% of rare disease patients die before the age of five.

Bring About Change

Advocates believe that by developing appropriate public health policies and implementing a comprehensive approach to rare disease, will help to eradicate many of the existing hurdles experienced by patients and their families.  Similarly by increasing international cooperation in scientific knowledge, and the sharing of knowledge of rare diseases, will subsequently lead to faster and new diagnosis as well as therapeutic procedures.      

Undeniably people with rare diseases often experience high level of pain and suffering, which impacts on their surrounding family and friends.  It is hoped that with worldwide growing interest in rare diseases and the need for further research and awareness, one of the objectives of the day is for WHO to recognise the last day of February as the official Rare Disease Day.  For further information on the events and the day please visit the official RareDiseaseDay website and the EURORDIS homepage 

Sporting Advice

Today the Department of Health launched new advice on how to maintain fitness levels and stay or get healthy, for people of all ages.  The UK-wide physical activity guidelines by the four nations’ Chief Medical Officers, is intended to help people understand the benefits of physical activity and also promote the simple steps that people can take to incorporate activity into their everyday lives.

Although the guidelines build on previous advice about the positive outcomes of physical activity, they also highlight that being more active can dramatically reduce the risk of serious diseases such as heart disease, stroke and diabetes.

Key New Elements of the Guidelines Include:

How to incorporate physical activity into busy lives.  Adults can get their 150 minutes of activity a week in sessions of ten minutes or more and should aim to be active every day. 30 minutes five times a week is just one way this can be achieved.

·         Greater emphasis on vigorous activity and muscle strengthening through, heavy gardening, group sports, such as volleyball and basketball or swimming. There is good evidence this stimulates bone formation and maintains muscle mass;

·         Advice tailored to every age group including - for the first time - guidance for parents for under-fives;

·         Reducing and minimising periods of sedentary behaviour.

·         The guidance has a renewed focus on being active everyday and spells out the recommended minimum levels of activity for each age group:

The Recommendations:

Under Fives

180 minutes - three hours - each day, once a child is able to walk

Children and young people (5-18 year olds)
60 minutes and up to several hours every day of moderate to vigorous intensity physical activity. Three days a week should include vigorous intensity activities that strengthen muscle and bone. Adults (19-64 years old) and older people (65+) 150mins - two and half hours - each week of moderate to vigorous intensity physical activity (and adults should aim to do some physical activity every day). Muscle strengthening activity should also be included twice a week.

England's Chief Medical Officer Sally Davies said:

"Being active has enormous health and well being benefits. It protects against many of the biggest causes of early death like heart disease, and stroke, and can promote good mental health.
"The latest figures show that almost a quarter of adults are obese and on current trends by 2050 it means 9 in 10 adults will be overweight or obese. We know that more than 60 per cent of adults are not active enough which is why today the UK Chief Medical Officers are launching the first UK-wide guidelines that draw on the latest science to inform weekly levels of physical activity - whatever your age. "But it's not just about health. Cycling and walking more can save on transport costs, reduce congestion and pollution."

Robin Gargrave, Director of Innovation and Development at Central YMCA said:
"In terms of health benefits, we know that the duration, intensity and type of physical activity for a young person is very different to that required for an older adult. Most people know they can improve their health by being more active, but face barriers, which prevent them from doing so.

"This advice addresses these barriers by recognising the limitations of a 'one size fits all' approach to physical activity - it speaks directly to people at different stages of their lives and is flexible in its approach. For providers such as Central YMCA, this advice will enable us to develop and target physical activity interventions more effectively."

To access the guidelines, click here and to view the press release, click here

RSPH – Sport for Health: Bringing Sport into People’s Lives.

Sport for Health is a two part programme specifically for people who work in sport, either in a professional or voluntary role. It is designed to help them increase the level of physical activity amongst people who do not normally take part in sport.  It provides an understanding of how an active lifestyle promotes good health, and a practical approach to understanding the barriers people face and ways to overcome them.

Through the Mayor’s Legacy Fund, applicants can attend the courses at a 75% discount on the normal rate (ie the trainee fee is £50 per day as opposed to the normal £200).   In order to qualify for the discount applicants need to commit to 20 hours of voluntary work in the London area – either in sports or in encouraging others to take part in physical activity.
To find out more about this course, available funding and other programmes offered by RSPH, please click here call Nicolette Boustaoui on 020 7265 7325 or email sportforhealth@rsph.org.uk. 

Planning for healthy communities: Joint Strategic Needs Assessment

Reforms to our health and social care services are rarely out of the news, but one common theme is the importance of a local approach to healthcare provision, which takes into account the needs of the whole community. The framework for planning the future healthcare provision for our communities is known as the Joint Strategic Needs Assessment (JSNA), and a new step by step briefing on this process has just been launched. 

The Royal Society for Public Health (www.rsph.org.uk) has been working with the NHS Confederation and Local Government Improvement and Development to develop this briefing, so that all the parties involved in the new health and wellbeing boards will have a common understanding of how to identify their community’s needs.

The JSNA pulls together all the relevant information about a community, including population data, levels of smoking, housing quality, and importantly, the views of its residents. This picture is then used to plan future provision, to ensure that the community has the health and social care services which it needs.

Professor Richard Parish, Chief Executive of RSPH, comments “The importance of effective planning for local communities cannot be overstated, and it is vital that a strong partnership is developed between the health and social care professionals, and the representatives of hard to reach groups. The JSNA process provides a vital tool which will allow everyone to contribute effectively to the development of healthy communities.”

PCTs have been using the JSNA process since 2007, but in future, health and wellbeing boards will have responsibility for providing the health and social care services for their communities. These groups will include members of the health professions, locally elected representatives and the Local Authority Directors of Children’s Services and Social Care. And the Directors of Public Health will play a vital role in providing technical advice.

It is particularly important that the voluntary sector and local community groups take an active part in the JSNA process, because they often have the best understanding of what their community needs, and can provide specialist services to support particular groups of people. By making contact with their local health and wellbeing board, and taking an active part in the JSNA, the third sector can ensure that the needs of every part of the community are considered.

According to John Wilderspin, the National Director, Health and Wellbeing Board Implementation, "JSNAs should not be seen as dry documents to sit on your shelf gathering dust - they should provide a comprehensive "picture of place" for all decision makers to use to prioritise action, and evaluate what they have achieved.  Combined with the new joint health and wellbeing strategy they are the foundation stone for effective planning and commissioning undertaken within health and wellbeing boards."

RSPH will also be offering a range of tailored seminars for health professionals and third sector organisations to support them as they develop their JSNAs. For further information contact Nicolette Boustaoui at nboustaoui@rsph.org.uk or visit www.rsph.org.uk/jsna.

Making Every Contact Count: An introduction to the behaviour change competence framework

So many aspects of healthcare are concerned with preventable or avoidable conditions. But the cost of dealing with them is under pressure more than ever before. A key theme in the Government’s next White Paper will be the need to reduce these costs, and every healthcare worker has their part to play. Every contact with a patient is an opportunity to encourage healthier lifestyle choices. But tackling sensitive issues such as weight loss, smoking cessation or alcohol abuse requires expertise, confidence and knowledge, in order to deliver the message effectively. Preventing avoidable conditions and encouraging behaviour change is an essential part of delivering an affordable health service for the future. Prevention is both better for the patient and cheaper for the provider. But do you and your team have the knowledge and skills to take this on? 

Prevention and Behaviour Change: a competence framework
The RSPH is offering a new programme designed to introduce participants to this competence framework which has been developed by NHS Yorkshire and The Humber.  It is designed for use at all levels of experience and provides a common approach against which skills can be assessed, either within a single programme or for an entire workforce. This will enable individuals to identify gaps in their knowledge, Commissioners to address weaknesses in their provision, and Service Providers to offer exactly what is needed.

This is a one day introductory programme, designed for those with an interest in encouraging behaviour change in their community or workforce. It is intended for people who will be playing a part in the development of healthy communities, whether as a Commissioner, provider of service or a member of frontline staff.  For further information or to book onto the course please contact Nicolette Boustaoui or by phone 020 7256 7325.

RSPH Training Solutions has also developed a unique suite of programmes called “Enabling and Guiding Choice for Health and Wellbeing”.  These include Influencing Behaviour Change and Behaviour Change in Practice.  In addition we will be running master classes and workshops for senior managers.  These suites will be available from September.  To register your interest or for more information please contact Nicolette Boustaoui or by phone 020 7256 7325.

Stress Down Day -  04 February 2011

Today, Friday 4th February, is significant for two reasons.  Firstly it is World Cancer Day and secondly it is Stress Down Day. 

Stress Down Day has been organised by the Samaritans as a campaign to raise awareness of the effects of stress in the workplace and to encourage people to take better care of their emotional well-being. 

What Is Stress?
Information from the NHS Choices, explains that stress is a feeling we experience when we are under pressure.
When we encounter a situation that makes us feel uncomfortable, our body releases hormones (chemicals) that cause the physical symptoms of stress.  
What may cause stress for one person may differ for another, however, common causes for stress maybe brought on by, job issues, financial concerns, bereavement, relationship and family problems.   
Although some stress can be viewed as having a positive impact, such as increasing productivity and motivation, too much stress can have adverse effects and be unhealthy for the body and mind.  
Statistical data from the Labour Force Survey showed that during 2008 and 2009 an estimated 415,000 people in Britain experienced work related stress at a level that was making them ill and a quarter of all adults will have a mental health problem.

Why Stress Is Detrimental For Our Well-Being:
Stress can adversely affect us mentally and physically.  Some of the mental symptoms, that affect our mind include, anger, depression, anxiety as well as difficulty in sleeping, loss of appetite, feeling tired and frequent crying.  Physical symptoms, which affect the body may include, chest pains, dizziness, nervous twitches, sweating more and feeling nervous as well as muscle aches, headaches and loss of sexual desire.  
When we experience these symptoms for long periods, it can increase the risk of developing high blood pressure (hypertension) which lead to heart attacks and strokes.   

How To Handle Stress - Prevention!  
Understanding what leads to stress may help us in preventing it.  The NHS Choices website, offer some useful techniques to deal with stress.
1. Take deep breaths - This will remove the older oxygen from your lungs and replace it with fresh oxygen, improving your circulation.
2. Eat healthily - Eating good food at regular intervals provides a steady release of energy which positively affects our mood and concentration.
3. Exercise - Releases a chemical known as serotonin, which makes us feel happier and less stressed.  
4. Sleep - Seek medical advice if sleeping pattern is disturbed as a good nights sleep in vital for our well-being
5. Quit Smoking - It is a myth that smoking helps combat stress, in actual fact it adds to stress by harming our body.  
6. Relax - Stress leads to a tightening of the muscles, causing aches and pains.  Experts recommend shrugging your shoulders to loosen muscles, or imagining a peaceful place to help relax our mind.   Alternatively, doing something we enjoy, reading, writing, listening to music or talking with friends can also help.

Last year, 24.6 million working days were lost due to work-related illness, therefore, keeping our workforce healthy and in good mental health, is imperative for any organization.   

The RSPH Training Solutions offers a course on Mental Health First Aid in the workplace. The course focuses on the personal impact of poor mental health, and on the importance of appreciating good mental health, for both ourselves and others.  For further information on this, please click here or contact Nicolette Smith nsmith@rsph.org.uk

Generations of Women in Crisis - A Call for Help!

A new report " Women Like Me: Supporting Wellbeing in Girls and Women" carried out by Platform 51, formerly the YWCA, reveals that three-in-five (63 percent) of girls and women, have been affected by mental health problems in England and Wales.  That is the equivalent of 15.2 million girls and women.  Girls and women are almost twice as likely as boys and men to suffer from depression and almost one third have taken anti depressants.   

The research includes national polling conducted by Opinium LLP and focus groups with Platform 51 service users.  The researchers carried out a nationally representative survey of 2,000 girls and women aged 12 and over in England and Wales.  It found that generations of women experience low-level mental health problems that negatively impacts their lives and hinders their potential.  This may include depression, stress, low self esteem, self harm and suicidal thoughts.

The report states, that these mental health issues are often triggered by traumatic events such as, emotional and physical abuse, relationship breakdown, bereavement, unemployment and debt.  However, the study indicates that many women, who are experiencing or have experienced difficult situations, may appear to be functioning normally and coping adequately, when in reality they are struggling. 

Mental health problems can have a profound impact on women’s lives and can also be detrimental for their families, their colleagues and the wider society.  Statistics show that 44 percent of women with mental health problems took time off work, with one in four taking off at least a week a year.  Isolation from friends and family was shown to be a common behaviour with 48 percent staying in bed or at home and as a result more than a quarter (28 percent) had lost friends.  In addition, 27 percent admitted to regularly drinking in order to get drunk and one in five (21 percent) had built up debt. 

Although mental health issues in girls and women is not a new concept, evidence from a 2009 NHS report demonstrates that women's mental health is worsening.  Therefore, as the report identifies, the current approach is not working and more needs to be done to address the problem. 

The group called on ministers to review the “over-reliance” on anti-depressant drugs to treat mild and moderate mental health problems and to make counseling and psychotherapy more easily available to women.   

Penny Newman, Platform 51's chief executive, said:
"Millions of girls and women are not getting the support they need. Women are often the linchpins of their families and their communities, and if three in five of them aren't functioning at their best they lose out, their family and friends lose out and so does wider society.
"Working with girls and women every day for over 150 years we have seen time and time again how often mental health can hold women back.
"Policy-makers need to act now to address this unseen crisis in women's mental health and provide a range of effective interventions. We must put an end to the dependency culture that has built up around prescription drugs, giving women more choice and control over the support they receive.”

International Women’s Day is on the 8^th March this year and the RSPH are running a Programme on Women’s Health and Well-being.  The event will raise awareness of interrelationship between lifestyle and health, while educating participants about the steps they can take to empower women to improve their physical and mental health.  For further information or to attend the programme please contact Nicolette Smith or by phone 020 3177 1625.