pocket guide emsp gb 09 02 · pocket guide. pocket guide to the european code of good practice in...

www.ms-in-europe.org

THE EUROPEAN CODE OF GOOD PRACTICE IN MULTIPLE SCLEROSIS An initiative of the European MS Platform

Pocket Guide

POCKET GUIDE TO THE EUROPEAN CODE OF GOOD PRACTICE IN MS

1 1 The Code of Good Practice in MS

1 2 Multiple Sclerosis – Information Dividend project (MS-ID) 2007 – 2009

1 3 The European Multiple Sclerosis Platform (EMSP)

1 4 What is Multiple Sclerosis (MS)?

1 5 What are the challenges that people with Multiple Sclerosis face?

1 6 Next Steps

1 7 Useful links

Table of Contents


1 | The Code of Good Practice in MS

A need for centralized information

In 2007 the European MS Platform launched the Multiple Sclerosis-Information Dividend (MS-ID) project, co-funded by the European Commission, in order to enhance equity of treatment, access to and quality of services for European citizens affected by MS.

The origins of the Code of Good Practice on the Rights and Quality of Life of People affected by Multiple Sclerosis lie in the approval of a report analysing the varying experiences of people with MS in Europe by the European Parliament in 2003, based upon a petition submitted by UK citizen, Louise McVay. An important resolution was adopted by the Parliament, urging EU health ministers to develop a “Code of Best Practice” for people with MS.

The European Multiple Sclerosis Platform seized the initiative and, with the support of its partners across Europe, developed the draft Code. This Code of Good Practice is intended to offer a practical framework for an optimal approach to the issues of fundamental importance to people with MS. It draws on European consensus and reference documents endorsed by medical professionals, as well as the UN Convention on the Rights of Disabled People.

The Code and Consensus Papers have been endorsed by the European Commission, European Parliament and some national health ministers.

The European Code of Good Practice serves as an umbrella document, referencing specifically to a set of ‘European Consensus Papers and Guidelines’. These Consensus Papers have been developed by the leading experts in the relevant field by using the EMSP’s extensive membership to involve the contributions from up to 33 countries in Europe. They describe in detail the “state of the art” practices on a number of MS-related issues. All of the Consensus Papers have already been published by the European Commission on their EU health portal. These papers cover disease modifying therapies, symptomatic treatments (e.g. against bladder problems), rehabilitation, palliative care and the principles of quality of life (developed by MSIF).

5 The overall aims of the MS-ID project are:

• To raise awareness and exchange information on MS throughout Europe

• To critically evaluate current data collection methods of MS management across the European Union

• To develop and test a pilot data collection system (MS Register) for transnational data analysis and comparison, which could form a basis for an EU wide approach to analyse and compare MS data

• To promote a Code of Good Practice for people with MS on the quality of life, human capital and social support linked to multiple sclerosis which includes the identification of evaluation indicators and feedback mechanisms for use across the EU

• To work with national MS societies to ensure that the EU project, its outcomes and resulting information dividend are understood and fully utilised by member countries, through national roll out plans



The Code of Good Practice covers four key areas:

1.1 | Equal rights and access to treatment, therapies and services in the management of MS

Access to high quality treatment, therapies and services is critical for ensuring the quality of life of people with MS. By the same token, lack of access severely diminishes the quality of life.

Access to these crucial resources is vastly disparate from one EU country to the other. Consequently, the Code calls for equality of access to treatment, therapies and services, as well as equal rights to treatment for people with MS in all member states. This presupposes investment in professional MS training of neurologists, nurses and other carers.

1.2 | Shared MS research agenda

MS is a highly complex disease, requiring significant investment before a cure and/or effective prevention mechanisms can be identified. Currently, efforts are marred by a lack of research coordination between countries.

The Code therefore calls for closer collaboration among EU researchers to identify and implement a strategy on the basis of a shared research agenda, funded by the EU and at the national level. Such research should closely involve with MS patients at every stage.

5 Key accessibility rights include:

• Early diagnosis

• Appropriate drugs

• Interdisciplinary resources, including neurologists, rehabilitative medicine, nursing, physiotherapy, clinical psychology, social counselling, occupational therapy and speech therapy

• Comprehensive information

• Palliative care (for those severely affected)

5 Research priorities, as identified by leading scientists, include:

• Epidemiology (incidence, prevalence, migration, mortality)

• Genetics (predisposing factors)

• Clinical pathology (various disease types, diagnosis and prognosis)

• Therapy (prevention, disease-modifying therapy, symptomatic treatment and rehabilitation, repair)



1.3 | Employment and job retention

Exacerbating an already difficult situation, working-age people with MS are frequently forced to stop working due to a lack of support and provisions for their MS-related needs in the workplace.

The Code highlights the concept of “reasonable accommodation” enshrined in the EC Framework Directive on Equal Treatment in the Work Place, stipulating that the place of work should reasonably accommodate the needs of people with disabilities. Sadly, this is not the case for many workers who are forced to give up their jobs in places where their needs are not accommodated. This is more marked in certain countries than others.

The Code calls for informative, awareness-raising programmes for employers, co-workers and people with MS on the EC Directive and what it means in practice, thus facilitating its wider implementation.

1.4 | Participation and empowerment of people affected by MS

In empowering individuals with MS and enabling them to participate in a meaningful way in their treatment, access to credible, comprehensive information is critical. In meeting this need, the Code calls for user-led self management courses covering appropriate treatment, therapies and services.

5 Examples of measures required to accommodate a worker with MS include:

• Flexible working hours

• Rest periods

• Task restructuring

• Social protection safety net

• Necessary practical adaptations, e.g. wheelchair accessibility, assistive equipment

5 People with MS have a right to independent living. This presupposes access to treatments and services that:

• Recognise personal dignity

• Seek to maximise personal potential

• Enable people affected by MS to be fully involved and influence decisions on service provision

• Take account of the full range of physical, cognitive, emotional and social implications of MS

• Meet agreed European quality standards

• Are subject to continual evaluation and improvement

• Are accessible and timely

• Are delivered by appropriately skilled and experienced professionals

• Are provided equitably and efficiently, irrespective of time and place


Core reference documents

The Code draws on and supports the following key EU consensus documents and reference papers, which reflect best practice in key areas, and are endorsed by the European Commission, European Parliament and some national health ministers:


5 The European Map of Multiple Sclerosis (www.europeanmapofms.org)

5 Escalating Immunomodulatory Therapy of MS (Consensus Paper) Updated version Sept. 2007

5 Multiple Sclerosis Therapy Consensus Group (MSTCG). First draft developed by P. Rieckmann, K.V. Toyka, R. Gold, H-P. Hartung, R. Hohlfeld, H. Wiendl

5 Recommendations on Rehabilitation Services for Persons with Multiple Sclerosis in Europe (European Multiple Sclerosis Platform and RIMS, Rehabilitation in Multiple Sclerosis) Battaglia, Kesselring, Ketelaer, Thompson et al.

5 Symptomatic Therapies (Consensus Paper) based on the German MS Society’s report “Mehr Lebensqualität, Sympomatische Therapie bei MS”. T. Henze, K.V. Toyka

5 Palliative care among people severely affected with multiple sclerosis (Position Paper). S. Haffenden, I. Higginson, D.Pitschnau-Michel, R Voltz

5 Principles to promote the quality of life of people with MS. International Federation of Multiple Sclerosis, Barnes et al.


2 | The “Multiple Sclerosis – Information Dividend” (MS-ID) project 2007 - 2009

In the last two years, the EMSP has taken care of the roll-out of the MS-ID project. A number of initiatives have been presented at a high-level conference in Brussels on 14 May 2009, attended by numerous key opinion leaders in the world of neurology, healthcare and the world of MS.

The project is led by the EMSP, and is supported by active participation from six national societies (Germany, Iceland, Poland, Romania, Spain and the UK). The remainder of the EMSP membership is also contributing to the promotion and distribution of the project’s results.

An overview of the MS-ID initiatives:

MS Barometer

The MS Barometer functions as a benchmarking tool that facilitates comparison across European countries. The MS Barometer addresses this comparison challenge by measuring specific aspects of how individual countries manage MS and how policy decisions affect the pressure experienced by individual PwMS. Results are achieved through a survey in 32 European countries covering seven areas pertaining to the MS environment at national level:

A high score in any category indicates that the atmosphere for PwMS is fair – the quality of policies and programmes effectively reduces the amount of pressure in their daily lives. The scoring system highlights the strong points of national policy, while also identifying gaps in service provision that place undue pressure on PwMS (whether it is related to medical, socio-economic or quality of life issues).

High Level National Roundtables on MS

The inaugural MS Roundtable was held in Ljubljana in May 2008 and attended by high-level participants from the Slovenian government and European Commission, as well as neurologists, MS nurses and people with MS. This was followed by roundtables in Hungary Bulgaria and Romania, and will be succeeded by further such events.

• Access to treatment and therapies

• Research agenda on MS

• Employment and job retention

• Empowerment of PwMS

• Reimbursement of costs related to MS

• Accurate data collection on MS at national level

• Medication coming on the market

5 The aim of the roundtables is:

1 To raise awareness of MS and the Code of Good Practice

2 To encourage endorsement of the Code at national level

3 To prompt further initiatives at national and EU level to improve the quality of life of people with MS

4 To facilitate discussion and new ideas on issues of importance to people with MS and how to address the inequalities within the EU


2 | The “Multiple Sclerosis – Information Dividend” (MS-ID) project 2007 - 2009

MS Register

The European MS Register, (the establishment of a transnational MS data collection system in Europe) has been tested in a pilot project and was tested in countries with extremely different conditions with regards to their treatment of MS and with regards to the existence or the lack of a national MS Registry. This pilot focused on the development of a minimum dataset, divided into a medical and a socio-economic part, and on the administration under diverging health systems in five EU Member States plus Iceland. The first results indicate that the establishment of a European MS Register is feasible when certain conditions (such as a modular structure of the register, allowing input from existing and future national registries) are fulfilled. Such European MS Register is vital for the Europe-wide application of the Code of Good Practice in MS.

The Code of Good Practice in MS

The European Code of Good Practice in MS is an instrument outlining the issues of fundamental importance for people affected by MS. More information on the Code of Good Practice in MS is dealt with in Chapter 1.


3 | The European Multiple Sclerosis Platform (EMSP)

The European Multiple Sclerosis Platform (EMSP) was founded in 1989. It is an umbrella organisation for European MS organisations and currently has 34 members from MS societies all over the continent, from Greece in the South to Iceland in the North, and from Ireland in the West to Russia in the East.

5 The EMSP has five main aims:

• To promote actively the interests of people affected by MS on a European level

• To act as a focal point of liaison with relevant EU bodies

• To facilitate joint programmes and skill shares between MS societies

• To procure and disseminate information being of interest for members

• To encourage research related to MS both in medical and non medical related areas


4 | What is Multiple Sclerosis (MS)?

5 A chronic, disabling disease with unpredictable progression

5 Symptoms include, but are not limited to:• Progressive limitation of mobility

• Vision problems

• Spasticity

• Fatigue

• Cognitive dysfunctions

• Speech problems

• Bladder and bowel problems

• Depression

5 No cure to date

5 Affects more than 500,000 people in Europe and more than 2.000.000 worldwide

5 Age of diagnosis typically 20-40 years

5 Affects twice as many women as men


5 | What are the challenges that people with Multiple Sclerosis face?

H. Goethals (62), Belgium

In 1986 I had a relapse which left me quadriplegic for several days and it became

more and more obvious that I had MS. I saw another neurologist who gave me

an MRI scan. When he told me that there was no doubt that I had MS I couldn’t

avoid feeling depressed, even though the confirmed diagnosis came as a relief

to me.

I was a chemist in an electrical construction factory and initially I was able

to continue my job in a manual wheelchair, then in an electric one, but when

I could no longer write legibly I had to stop working. At this time working from

home was not possible as the technology was not yet in place

I had to decide what to do with the rest my life as my situation was worsening.

So I moved to a small residential community in a different part of Brussels.

Currently, as I am quadriplegic and I need help to do everyday tasks, such as

eating and putting my glasses on, many of my retired neighbours generously

use their free time to support me.

E. Berntsen (27), Norway

That day back in June 2000 I sincerely believed that my life was over before it

had even fully begun. I had no idea what this meant for me, but I thought that

I wouldn’t be able to work or even study. My future would consist of just being

at home and being sick.

I was accepted at the University of Tromsø in late July 2000. The thought of starting

to study with the terrifying diagnosis was scary. For how long would I be able

to study? What would my grades be like? What if I failed? I had many fears but

I also had a lot of hopes and dreams as well. My biggest dream was to get

a Masters degree, and to get a good job.

I concluded that my dreams for the future were too precious to let go of and so

I became a student at the Faculty of Law in autumn 2000. I shall be the first

to admit that it was difficult to begin a new chapter of my life. It was going to be

even harder since I had two new chapters to write simultaneously; my life as

a student and my life as an MS patient.

I’ve tried to maintain my hopes and dreams for the future. Luckily they are still

here – modified a bit - but still with me. As far as I dare to believe, my future

looks bright. And so does yours, if you dare to believe in it too!


The above stories of patients with MS are just three examples of what people with MS live with everyday.

These illustrate clearly the difficulties for people with MS to participate in everyday society and the need for political commitment and a practical framework to address the issues that people with MS are facing.

People with MS are usually diagnosed at an age at which they have responsibility for young children and are at the beginning of their career.

The experience of a person with MS will be largely dictated by the country in which he or she lives or stays. Disparities between EU countries are striking, from access to diagnosis and health professionals, to access to medication and the ability to participate in working life.

The lack of provisions and flexibility in the labour market in many EU countries to enable people with MS to participate in working life makes living with MS far more difficult. This exclusion from employment has not only a significant impact on the morale of people with MS, but also a negative impact on economies.

5 | What are the challenges that people with Multiple Sclerosis face?

M. Kingston (44), United Kingdom

Having moved to Wales in 2005, I can compare assistance given to people with

MS in Wales to that offered in England. Although I’m not entitled to any means-

tested benefits, I’ve found that the Welsh local authorities are willing to loan me

equipment, make adaptations to my home, and have offered assistance I hadn’t

even thought of. It’s very different to the attitude I faced under my previous local

authority, where ineligibility for benefits made me invisible to practically every

form of assistance that was available.


6 | Next steps

Much work has been done by the EMSP and its member associations, as well as people with MS themselves, in raising awareness and addressing shortcomings in the treatment and services afforded to people affected by MS. However, there is still considerable work to be done before the situation in the EU can be considered equitable, and before people with MS across Europe are able to enjoy the same rights as their fellow EU citizens in other countries.

A key initiative that the EMSP has been launching within the MS-ID project is the development of a pan-EU MS Register. So far, two questionnaires were developed with the support of the Scientific Advisory Committee: a medical questionnaire and a socio-economic questionnaire. They were set up in a modular way, meaning that a “minimum data set” requires the input from all feeding partners, allowing at the same time the continuation of individual collection and analysis of additional data. This approach aims at the involvement of all or at least most of the currently existing registries, a “conditio sine qua non” for a successful future European approach. The preliminary results showed that the medical questionnaire should not exceed 1-2 pages so that healthcare professionals could fill in the questionnaire regularly during the time allocated to their patients. A second conclusion is that the EU MS Register should have a stronger focus on the socio-economic aspects than existing MS registers do currently. Reliable findings on the full cost of the disease to society both on national and on European level could be one of the results provided by a future European MS Register. Another very valuable outcome could be to provide the evidence base for conditional pricing and reimbursement agreements.

A “Project Definition Meeting” for the agreement among stakeholders on the basic elements of an EU-co funded “European MS Register” project is planned for September 2009.


7 | Useful links

http://ec.europa.eu/health

www.ms-in-europe.org

www.ms-id.org

www.msif.org

www.ectrims.eu

www.rims.be

EMSP

European Multiple Sclerosis Platform aisbl

Rue Auguste Lambiotte 144/8 | B - 1030 Brussels

Tel +32 2 305 80 12 | Fax +32 2 305 80 11

[email protected] | www.ms-in-europe.org

pocket guide emsp gb 09 02 · pocket guide. pocket guide to the european code of good practice in...

Documents