Stronger Connected - A Guide to Building Neurological Alliances

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Stronger Connected A Guide to Building Neurological Alliances 1






1.1 What is a Neurological Alliance? 1.2 About Stronger Connected


2. VIEWPOINTS 2.1 The View from Neurological Alliances 2.1.1 What are the Key Benefits of Alliances? 2.1.2 What Challenges Might Alliances Face? 2.1.3 Achievements of Alliances 2.1.4 Where Next for Neurological Alliances? 2.1.5 What Can We Learn from Existing Alliances? 2.2 The View from Member Organisations 2.2.1 What are the Main Benefits of Being Part of An Alliance? 2.2.2 What are the Main Challenges of Being Part of An Alliance? 2.2.3 How Would Members Change Alliances? 2.3 The Policy Makers’ View


3. BUILDING YOUR ALLIANCE 3.1 Tips for a Successful Alliance 3.2 Funding Your Alliance 3.3 How EFNA Can Help 3.4 About the European Federation of Neurological Alliances (EFNA)

4. Contacts & AcknowledgGmENTS




FOREWORD A WORD FROM DONNA WALSH, EFNA EXECUTIVE DIRECTOR In recent years, EFNA has stepped up its advocacy efforts on the European stage. Having played a leading role in the steering committee for the European Month of the Brain, May 2013 – designated and coordinated by the European Commission – EFNA has cemented its position as a respected voice in the representation of those affected by neurological disorders in Europe. From our newly established Brussels-base, EFNA wants to continue to be actively involved in shaping the European healthcare agenda and ensuring that the needs of those living with neurological disorders are prioritised. However, if we are to be optimally successful in this work, we need to develop a channel from the European platform, on which we operate, to the national stage. Why? Because, EU competence in health continues to be restricted by the Treaty, thus the organisation of health systems and healthcare remain Member State competencies. However, despite the principle of subsidiarity, the EU and national level health policy environments are increasingly interlinked and we need to optimise this budding connectivity. With this in mind, EFNA would like to support the development of national neurological alliances. These groups can provide us with a presence on the ground, allowing us to better understand the real impact of policy decisions taken in Europe. Alliances can shape our approach to advocacy in a meaningful way, whilst increasing the constituency on whose behalf we work. Alliances already exist in some European countries and their experiences are detailed throughout this guide, in the hopes of inspiring others to follow their lead. You will see that these organisations have been successful in putting neurology policy issues on the agenda, sharing experiences and resources, and rolling-out/participating in various projects and initiatives. Most of these organisations operate only on a national level, and so – as well as creating new Alliances – we want to add value to the groups already in operation by bringing a European dimension to their work. We will also work to build a network in which these Alliances can interact with their counterparts across the continent. This is an ambitious aim in our Operational Plan but one we feel is necessary and can be achieved with your support and commitment to us, and vice versa. Details of how you can get involved and how EFNA can help can be found towards the end of this guide. So, we look forward to hearing from you. With best wishes from all at EFNA. Donna Walsh EFNA Executve Director



1 INTRODUCTION 1.1 What is a Neurological Alliance? Neurological alliances bring together and represent organisations working on a wide range of neurological issues, such as Parkinson’s disease, multiple sclerosis (MS), cerebral palsy, Huntington’s disease and many more. Alliances allow organisations with similar interests to be heard as a collective voice for greater impact.

1.2 About Stronger Connected EFNA recognises that across Europe every country is different and each potential alliance may have varying needs and interests. Rather than providing detailed instructions on how an alliance should be set up and managed, Stronger Connected provides examples of how different alliances have been created and operate to inform and inspire new alliances. Existing alliances have kindly provided their thoughts on what they have found works well, potential challenges that might be met along the way and tips for getting started. In addition, this guide features the views of member organisations, the key stakeholders of alliances, as well as from the policy-maker, the pivotal target for the work of alliances. Many benefits of developing alliances have been identified, including: * *

* * *

A stronger voice to promote a shared agenda, more likely to be heard and drive change Access to shared resources The opportunity for member organisations to work together and learn from each other Greater partnership opportunities Access to strategic oversight and intelligence on broad, and often complex, neurological issues

Challenges new alliances might face have also been highlighted, such as: * * * *


Ensuring a distinct identity, purpose and structure for the alliance Developing a workplan to meet the needs of different members Obtaining funds and other resources to support the alliance Gaining and maintaining the involvement of members Member organisations finding enough time to effectively engage and be involved in the work of alliances

Despite the challenges, alliances are positive about the impact they make, member organisations value their strategic contribution to the neurology arena and policy makers recognise their distinct role. The message seems clear – neurological alliances are effective, valuable and make an important impact. This guide will help you become better informed about starting your own alliance and provides advice on how to get started. So why wait any longer? You will be Stronger Connected!



2 VIEWPOINTS 2.1 The View from Neurological Alliances The following five neurological alliances from across Europe provided their views on building, managing and growing alliances. Their views provide an invaluable insight into how alliances operate and what they can achieve. Ireland: Neurological Alliance of Ireland ( The Neurological Alliance of Ireland was established in 1998 to promote the development of neurological care services in Ireland. It was formed though a partnership with a leading Irish neurologist and a small group of patient organisations. Since then it has grown to over 30 organisations and is recognised as a representative group on neurological issues in Ireland. Neurological care has historically been under-recognised and under-developed in Ireland and the alliance was established to address this. Spain: Neuroalianza ( Neuroalianza was formed in Spain in 2013, after becoming aware of the need for teamwork between patient organisations of similar diseases, in order to better achieve its goals. The Netherlands: Dutch Brain Council ( Six patient organisations decided to do a project together, subsidised by the Government, in 2012: the Platform for Movement Disorders. By doing this project the members realised that they really enjoyed working and brainstorming together and could learn a lot from each other. The president of the Platform had the idea to start the Dutch Brain Council (DBC) in June 2013, for brain-related patient organisations. At the end of 2013 the DBC held their first meeting which was attended by 20 patient organisations. The meeting was a success and all organisations were enthusiastic about the idea of working together. In March 2014 additional organisations showed their interest.


Scotland: Neurological Alliance of Scotland ( In 2001, the then director of the MS Society in Scotland wrote to a number of Scottish neurological charities highlighting that there was a neurological alliance in the UK that had been in existence for 10 years which had had some success in establishing dialogue with the Westminster Government. However, this body largely confined its activity to England and with the differences inherent within the political and health care system of Scotland, it was thought appropriate to try and establish something that could provide a voice for neurological organisations in Scotland. A meeting of around 10 Scottish neurological organisations was held in early 2002 and it was agreed that there was value in establishing a body to highlight Scottish issues and present a Scottish voice. In 2004 the Neurological Alliance of Scotland (NAoS) was officially recognised as a Scottish Charity. In 2009, NAoS appointed their first paid member of staff and it now has four staff. Poland: Neuropositive Foundation ( The head of the Polish MS Society realised that even though their organisation was one of the strongest patient societies in the country, they were still not able to change all the difficult situations facing patients. They also got complaints from people with other neurological conditions who felt they did not have such strong support as people with MS did. The head decided to leave the MS Society and develop a separate organisation for people with neurological/ brain diseases: the Neuropositive Foundation.


2.1.1 What Are the Key Benefits of Alliances Two main benefits have been identified by existing alliances: A. A stronger voice to promote a shared agenda, more likely to be heard and

drive change

B. Access to shared resources

A. A stronger voice to promote a shared agenda, more likely to be heard and drive change together in an alliance gives strength to the patient movement and increases the “ Being voice of people suffering from the same kind of diseases and, therefore, having the same problems in life. ” Neuroalianza

main benefits of the alliance have been in establishing dialogue with the Scottish “ The Government and Health Boards. In bringing together over 30+ organisations to highlight neurological issues to the policy and decision makers. Organisations join because they can see a value in the work that the alliance is carrying out. It provides them with the opportunity to highlight their issues and to join forces with others who may be experiencing the same issues. By having some strength in numbers, the voices become louder and people start to take notice.

Neurological Alliance of Scotland

benefits include establishing a recognised neurological agenda through partnership, “ The rather than just the issues of specific organisations. This is important for campaigning and advocacy as well as developing a policy agenda on neurological issues, something which was largely lacking in Ireland.

Organisations should join our alliance in order to have shared opportunities to participate in a campaign agenda and in policy development but also to have a wider platform to share issues affecting their members. Some of these issues may be very specific to their members and some may be common to other people with neurological conditions. Both sets of issues can be represented by the NAI.

Neurological Alliance of Ireland

is a benefit to have one voice representing many patients instead of 20 different voices “ Itfrom a few patients. This makes it more easy to get invited to talk and to be heard. ” Dutch Brain Council


stronger patient voice, more effective and better in lobbying and awareness raising. “ ABetter influence on health policy. ” Neuropositive Foundation

B. Access to shared resources part of an alliance means a unified effort which provides more time and financial “ Being resources. ” are also practical benefits of working together, such as shared administration, “ There paper and printing materials, web design, a shared meeting place. ” access to funds for projects: projects with partnerships receive more points in “ Better ranking. ” Neuroalianza

Dutch Brain Council

Neuropositive Foundation

2.1.2 What Challenges Might Alliances Face? A range of challenges have been faced by alliances, including: A. Ensuring a distinct identity, purpose and structure for the alliance B. Developing a workplan to meet the needs of different members C. Obtaining funds to support the alliance D. Gaining and maintaining the involvement of members

A. Ensuring a distinct identity, purpose and structure for the alliance initial challenge in establishing the alliance was defining what the alliance should “ Anstand for. We now have the challenge of maintaining and evolving our strategic direction and developing the necessary structures to grow and develop the alliance, including Neurological Alliance of Ireland access to expertise.

challenge is to create a real team between the member organisations, all of them “ One pushing together, without interfering in the day-to-day tasks of each one. Another is to make sure that Neuroalianza has its own character, being more than the sum of its Neuroalianza members.


initial challenges were to do with structure and around what legal form the alliance “ The should take. As there was a Neurological Alliance of England, initial discussions were

about whether the group should form as a subgroup of it, which could concentrate on Scotland, or if a separate charity should be created. In the end, it was agreed to create a separate Scottish charity with the remit of looking after neurological issues that affected patients within Scotland. Neurological Alliance of Scotland

B. Developing a workplan to meet the needs of different members from differently sized organisations can create a challenge. We started the “ Members alliance with relatively small patient organisations. Adding bigger organisations will be a challenge. The small organisations work with only volunteers. Most volunteers will have the disease or care for someone with the disease. However, big organisations tend to work with paid staff. A big organisation can be well known and used to being invited to talk. They probably do not need an alliance as much. Dutch Brain Council

challenge was to develop a clear workplan and agenda and it is still an “ Another ongoing challenge to develop a set of issues that are representative of all member organisations. ” Neurological Alliance of Ireland

main problem is the lack of compromise between two visions: a) a strong coalition “ Our with strong bonds or b) a kind of loose federation. Strong member organisations prefer

the federation approach whereas smaller ones prefer the idea of developing a strong alliance. While we are still working on this, we try to empower smaller organisations and make more ties between them and the alliance. Neuropositive Foundation

C. Obtaining funds to support the alliance the structure was sorted out, then the next main challenge was, and continues to “ Once be, resources. How was the work that had been agreed going to be resourced? In the

initial years this was primarily through the members of the alliance giving their time and talents until grant funding was made available which enabled a part-time member of staff to be employed. Neurological Alliance of Scotland

challenge of maintaining the alliance is that we have to fill it with projects, for which we “ Aneed funds. ” funding for a position of administrator was a challenge and it is still a “ Obtaining challenge to respond to increased demand for the services of the alliance. ” Neuroalianza

Neurological Alliance of Ireland


is always the problem of funds. Even formal registration of the alliance required “ There money. Professional work needs not only volunteers but also professional staff. Without extra funds, institutional grants work would not be effective. Every alliance needs institutional grants at the start, and then to develop their own budget and sources of income. Neuropositive Foundation

D. Gaining and maintaining the involvement of members

“ Maintaining the involvement of members can also be a challenge.” Neurological Alliance of Ireland

that members perceive the value in being part of the alliance and that “ Ensuring the alliance itself can meet the commitments that are expected of it, either by the membership or by the Scottish Government, can also be a challenge. ” Neurological Alliance of Scotland

setting up the alliance a challenge was that organisations here were not used to “ Incooperating. They preferred to work on their own and saw each other as rivals. They saw alliances as a waste of time. They do not always get along, so organising the alliance can be a diplomatic challenge.

Another challenge is that leaders of member organisations are typically volunteers and often simply have no more time for involvement in any other activities. Also, it is not easy to set an agreed date for a meeting for all of the leaders of member organisations who can be very busy. In addition, some have little experience of NGO development and they have no staff or business plans which means discussions about strategy can be too difficult for them.

Neuropositive Foundation

Neurological Alliance of Ireland campaigning at the Irish Parliament for improved services


2.1.3 Achievements of Alliances Despite facing many and varied challenges in their establishment and management, neurological alliances have achieved considerable progress.

* Our alliance has secured a recognised role as a shaper of neurological policy in Ireland. * We are a recognised partner in developing responses to the needs of people with

neurological conditions; our alliance is part of national clinical programmes in neurology and neurorehabilitation where it represents its members. * We have secured national responses to developing services for people with neurological conditions through acquiring national strategies and programmes in this area. * Our alliance is recognised as the key ‘voice’ on neurological care issues in Ireland among a wide range of stakeholders, including political representatives.

Neurological Alliance of Ireland

was created less than one year ago but we are already involved in “ Neuroalianza a project regarding measurement of the impact of neurodegenerative diseases in Spain. ” our work, the Scottish Government has established standards for “ Through Neurological Health Services. Neuroalianza


* Members of our alliance have worked with the Scottish Government and Health Boards

to improve services for patients.

* Our alliance is seen by the Scottish Government to be a trustworthy and valued partner in

improving neurological services. * We have established a Neuro Voices programme which trains and empowers patients with neurological conditions, and carers, to participate in local improvement systems. * Our alliance helped to establish a National Neurological Advisory Group which takes a Scotland wide strategic view of neurological service. Neurological Alliance of Scotland

* Despite the challenges, we have managed to form the alliance with a board, strategy and

goals. All members now sit together at the same table and agree that they share the same main problem: to establish neurological diseases as a top priority in national health policy. * All members agreed to take part in a Scientific Board in our new project: a quarterly magazine, ‘The World of the Brain’, for which the main aim is to raise awareness in society about the importance of neurological diseases. * We have developed an internet radio station that should also be a tool in our work. * We have been widely mentioned in media. Neuropositive Foundation

than a year we built a membership of 20 patient organisations who decided “ Intoless join and work together. ” Dutch Brain Council


2.1.4 Where Next for Neurological Alliances? Our five neurological alliances all have great plans for the future and there are three common themes to their planned work: A. Influencing national policies B. Raising awareness of issues C. Improving services and support for people with neurological conditions

A. Influencing national policies most immediate plan is to ask the Spanish Parliament to pass a law regarding “ Our how disability is recognised following a diagnosis of a neurodegenerative disease. Neuroalianza

main goal is to establish neurological diseases as a priority in national health policy. “ The This will change not only the level of reimbursed drugs but also make it possible to develop prevention programmes. ” Neuropositive Foundation alliance aims to secure real progress in developing services and support for people “ Our with neurological conditions through the implementation of current strategies within the health services. ” Neurological Alliance of Ireland

B. Raising awareness of issues also want to raise awareness in society that costs of neurological diseases have “ Werapidly grown and it is important to find out much more about our brain if we are to find how to prevent these conditions. ” Neuropositive Foundation

want to raise awareness of neurological conditions amongst the public and key “ Wedecision makers. ” Neurological Alliance of Scotland


C. Improving services and support for people with neurological conditions want to define and shape a wider agenda to meet the needs of Irish people with “ Weneurological conditions which includes: a) wider social needs in relation to areas such as education and employment; b) the needs of specific groups of people with neurological conditions such as children and those with co-morbid conditions.

Neurological Alliance of Ireland

the short term we plan to focus on: a) medicines (preference, continuity, costs, “ Inreimbursement, availability); and b) General Practitioners (care, diagnosis, education, supplementary training, referral). In the longer term we will also focus on science and research. Dutch Brain Council

aim to improve the diagnostic process for those with suspected neurological “ Wesymptoms. We want to ensure those affected by neurological conditions receive the

right care, at the right time, in the right location regardless of where they live. We want to ensure that people with a neurological condition have access to the information they need. Neurological Alliance of Scotland

2.1.5 What Can We Learn from Existing Alliances? Existing alliances have had different experiences in establishing and maintaining their organisations. For some the process has gone very smoothly, with members keen to join and a shared enthusiasm. For others, there have been more administrative hurdles and a greater effort needed to engage potential members. While no two experiences are alike, all alliances remain positive about the value of their organisations and what they can achieve. initial stages of establishing the alliance takes time and this needs to be allowed “ The for. In our case establishing the right legal structure involved a lot of time from key

individuals. The first few years everything was undertaken by the executive however once a dedicated person was identified and in post, things progressed much more quickly and more could be done. Neurological Alliance of Scotland

quite easy for us, but we have learned to work together, being aware that we “ Itarehasonbeen the same ship fighting for the same objective. We wouldn’t do it differently, we are happy with the results so far. ” Neuroalianza


hard but necessary work. If I started again I would make better contact with leaders “ Itofissmaller societies. I relied too much on one leader, a person who led a previous

attempt to build such an alliance. He tried without success, and I should have learnt where something doesn’t work. Big organisations were afraid of losing independence, not necessarily seeing the benefits for them from linking together with the smaller ones. The only way is to show organisations the benefits of an alliance and the possibility to achieve something without too big costs. Neuropositive Foundation

An alliance can be a very effective tool in securing a profile for neurological issues and “contributing to policy development. However, it has to be very clear about its aims

and how they will link with those of its members. There can be perceived overlap and concern from the membership about the role of the alliance. It is essential that a very clear workplan is defined and mechanisms for consultation and engagement with members agreed from the outset. The risk is that the alliance ends up being an external Neurological Alliance of Ireland ‘other’ rather than being owned by the members.

whole process went very smoothly. We were really surprised that so many patient “ The organisations directly decided to join. Apparently, this was a good time for doing this. ” Dutch Brain Council

Members of the Polish Neuropositive Foundation discuss and debate with key stakeholders.


2.2 The View from Member Organisations To inform this guide, a number of individual organisations of varying size provided their views on being members of a neurological alliance.

2.2.1 What are the Main Benefits of Being Part of An Alliance? Member organisations feel there are many benefits to being part of a neurological alliance. Benefits include: having a stronger voice on common issues, working with and learning from other organisations, greater partnership opportunities, and benefitting from the expertise and intelligence of the alliance itself. organisations share common problems and we think that together we can better “ Our defend our collective rights. That is the greatest benefit that we can obtain, as well as being able to learn from each other. ” Federación Española de Párkinson

issues are raised in foras we wouldn’t necessarily get access to due to the alliance “ Our representing over 70 neurological charities. At these foras they represent our concerns

and also flag up opportunities for organisations to respond to consultations and get involved in various streams of work. The alliance can take a strategic overview of some very complex issues (e.g. specialised commissioning or development of the national neurological dataset) that we may not be able to provide much insight on as we’re not intricately involved, however this serves to inform the work we do in these areas. Linking with other neurological charities and campaigning on common issues to improve services, and joint work with the alliance and neurological charities, such as influencing legislation and developing a neurological manifesto for the forthcoming general election, are also benefits. Parkinsons UK

we have a stronger voice on the shared issues for neurology. While there “ AsareaMScollective, specific issues, the challenges around neurology appointments, specialists etc. are shared, and together we have a stronger voice. There is also the advantage of making new contacts through alliance partners. MS Society Scotland


within the European health policy and decision-making landscape, there “ Increasingly, is resistance to dealing with single conditions. The new research agenda is tending

towards neurodegenerative conditions – or even the broader agenda of long term conditions – under cross-cutting themes. Therefore it is important to partner with like-minded organisations with common concerns to help progress these issues and to maximise opportunities to influence European decision-makers. European MS Platform

main benefit is through campaigning for improvements in services. As the alliance “ The works across a number of groups with different neurological conditions it means that it has more weight when it speaks to the Government or to the health service. Although we might be able to campaign on some issues ourselves, the alliance has the coordination to make a greater impact. While we can get caught up in the day-to-day aspects of our work, the alliance can take a bigger view of things. Headway Glasgow

be seen as more important in front of Public Administration because we are a “ Welargercangroup of patients and families. ” Esclerosis Lateral Amiotrofica (ADELA)

2.2.2 What are the Main Challenges of Being Part of An Alliance? Lack of resources of the alliance and balancing specific concerns of members with broader neurological issues are two common challenges perceived by member organisations. In addition, some members feel that they themselves don’t have enough time to fully engage with the work of alliances even though they would like to. occasion there may be a conflict between our organisational message and the “ Onalliance message. The work of the alliance can also be quite time consuming. ” MS Society Scotland

build and create a strong organisation requires hard work and effort. The biggest “ Tochallenge for us is to dedicate time to these tasks but, as we believe in the power of this new entity, it is an exciting challenge. ” Federación Española de Párkinson


challenge is the balance between neurology generally and Parkinson’s specifically. “ One It can sometimes be challenging to ensure condition specific concerns are highlighted as the alliance must represent all conditions. In addition, the alliance is not always focused where we want information or able to concentrate work where we would like due to competing priorities and limited resources. Parkinsons UK

always for a single condition organisation, there is a challenge in establishing the right “ Asbalance between directing time and resources to the direct programmes of EMSP and contributing to the collaborative endeavours of alliances, of which EMSP is a member. The test of effective engagement is whether, as well as bringing benefit to the wider neurological community, participation also has the potential to bring benefit to the MS community. European MS Platform

main challenge is finding the time to attend meetings or to properly engage with the “ The Alliance’s activities. Sometimes surveys and activities that we would want to be involved in fall off our agenda due to the pressure of other work. ” Headway Glasgow

2.2.3 How Would Members Change Alliances? Member organisations had a number of suggestions for changes that might help to maximise the impact of alliances.

“ It would help to have a greater profile of the alliance and its work in Westminster.” Parkinson’s UK

neurological alliance is under resourced. With more staff the capacity and reach “ The would be much greater. ” Neurological Alliance seems to work very well here in Scotland and has a good “ The profile with the Government, and the NHS. Not sure we would change anything. ” MS Society Scotland

Headway Glasgow

may be opportunities in the future for developing more effective models of “ There collaboration and integration for the benefit of all. ” European MS Platform


2.3 Policy makers’ view An ultimate test of the success of a campaigning organisation is how well it is perceived by policy makers and to what extent they will be heard by the right people. Two policy makers provide their views on alliances.

John Bowis OBE (UK) John Bowis OBE was a Member of the European Parliament for London from 1999-2009 and was, amongst a number of roles, the Group Coordinator / Spokesman on Environment, Health and Food Safety. Previously, he was a Member of Parliament in the UK, during which time he served as the Parliamentary Private Secretary to the Rt. Hon. David Hunt at the Environment Office and then the Welsh Office; Health & Social Services Minister at the Department of Health, responsible for social services, mental health, disability, children, the elderly and addiction; and Minister for Transport in London and for Road Safety. John is now an international health policy adviser. On the benefits of alliances: an alliance representing an issue to a policy maker can really save time and also “ Having presents as a much more powerful force, with all the individual organisations standing behind the same message. This is great for the broader issues and saves individual organisations repeating the same thing when they come to see me.

to alliances doesn’t stop me meeting, visiting and representing individual “ Talking organisations. By having the general issues dealt with by an alliance, it allows me to concentrate on the specific issues individual organisations may have. ” Advice for new alliances: are listened to more powerfully on general issues. Individual organisations “ Alliances should keep their issues specific to their interests. ” The minister will really appreciate it if you make your information and messages “ streamlined. Don’t spend lots of time telling us about your organisation – get to the

nitty gritty of what you want to get across quickly. The clearer, the simpler and the more streamlined the presentation, the better.

Bring me simple messages, explain them, ask me to go and see something that will help to illustrate your point (particularly if it is in my constituency) and say thank you – if you thank us we will purr.


Mary Harney (Ireland) Mary Harney’s political career began when she was appointed to the Irish Senate by the Taoiseach (Prime Minister) in 1977. She was the longest serving woman ever in the Irish Parliament, was the first woman to be Deputy Prime Minister and in 1993 became the only woman to lead a political party in Ireland. Most recently she was Minister for Health and Children (2004-2011) and previously was Minister for Environmental Protection, Tanaiste (Deputy Prime Minister of Ireland), Minister for Enterprise Trade and Employment, and President of EU Council of Ministers during Irish Presidency. Mary retired from politics in 2011 and is now involved in business as company director and corporate adviser and undertakes international speaking engagements. On the benefits of alliances: of Health are neither able to facilitate meetings with every group that seeks “ Ministers them or respond positively to the causes advanced. For them it is constantly a question of making very difficult choices between competing interests for the finite resources available. As we all know there is "strength in numbers" and therefore Alliances of patient organisations are much more likely to gain access to decision makers and to be persuasive in having a particular course of action pursued.

have the potential to further the interests beyond what can be accomplished “ Alliances by an individual organisation. They are likely to yield a much clearer and more

innovative message with greater impact. Alliances are more likely to succeed in raising public awareness and mobilising political influence. They can also better overcome the resource constraints and limitations of a single group by “pooling" the expertise and experience of separate organisations.

Advice for new alliances: a mission statement that is clear, concise and coherent that all participating “ Have organisations can buy in to. Without this the Alliance could stumble at the first hurdle.

Be aware that the differing cultures/ approaches of participating organisations must be dealt with openly and sensitively but firmly where necessary. The transition to an Alliance environment can be very challenging. Establish a core group to work on the agenda, on human resource issues and the messaging and advocacy approach. Policies and strategies need to be evaluated and re-evaluated frequently.



3 BUILDING YOUR ALLIANCE 3.1 Tips for a Successful Alliance Established neurological alliances provided advice for building and maintaining a successful alliance. Here are some tips that should help you on your way: *

Develop a well-defined and strategic workplan and agenda so that organisations are very clear what the alliance stands for, what it is aiming to achieve and how it will achieve it. Set realistic and achievable goals for the first year.


Ensure that resources are available to meet the ambitions of the alliance – for example as a minimum you will need a full time co-ordinator to carry out the work of the alliance. Establish where the best focus of your limited resources should be.


Make sure you encourage smaller organisations to come on board, not just the larger ones. If you gather smaller ones, the larger ones will come.


While one person will necessarily need to take the lead, be generous and behave as equals - none of the organisations is more important than other.


Find people with similar interests who can help you – you don’t have to do things alone. Delegate key tasks to key individuals who have the time and commitment to move things forward.


Identify who the main people are that you need to engage with. Establish good relationships with key policy and decision makers; those who can make a difference.


Ensure that your membership is kept informed, feels engaged and can see the value in being a member.


Be patient and focus on your goal, not the hurdles in your way. Build the alliance step by step and never give up. If one approach doesn’t work, find another way – learn as you go.

Neuroalianza has been successful in working as a team to advance the cause of those affected by neurodegenerative diseases in Spain.


3.2 Funding Your Alliance umbrella organisations have significant difficulties in raising and maintaining “ Alladequate funds to maximise their effectiveness. Like EMSP itself, the option of

increasing predictable income via direct giving and legacies is not available and this means that it is hard to develop a robust infrastructure of sufficient size and stability to escalate progress in ways that would be desirable. European MS Platform

Finding and securing funds for a new alliance is a necessary but often challenging task. There is no one particular way in which neurological alliances are funded and each has access to different sources, depending on how they are organised and in which country they are based. Examples of the main funding sources are listed below.

A. Government funding In some countries there are governmental funding sources available to support alliances in their work. receive some government funding under a scheme that aims to encourage the “ Weformation of charity umbrella groups to improve coordination in the sector. ” Neurological Alliance of Ireland

majority of the funding up until now has come from the Scottish Government. “ The We are currently in negotiations for future funding but are unsure at this stage if this funding will continue. ” Neurological Alliance of Scotland

B. Project grants Many alliances seek grants for specific projects. Grants may come from a wide range of sources but a common source is pharmaceutical companies, working in neurology, who may have a shared interest in a project. working for the alliance is a volunteer. We get money from pharmaceutical “ Everyone and insurance industry partners and we hope to secure government money in future. Neuroalianza


there are no government funds available, we hope to be able to secure “ Although pharmaceutical company sponsors in the future. ” Neuropositive Foundation

“ Weourarework.looking to charitable trusts to provide grant funding that will allow us to continue ” Neurological Alliance of Scotland

Although some individual organisations might be concerned that their own income could be affected if they are part of an alliance that secures pharmaceutical funding, this is not necessarily the case. Pharmaceutical companies often support a wide range of organisations and typically consider projects on their relevance and merit.

C. Membership fees Many alliances charge membership fees in order to cover some basic administration costs.

“ We get a tiny amount (less than 5%) from membership fees.” Neurological Alliance of Ireland

“ There is a nominal charge made for membership.” Neurological Alliance of Scotland

D. Pro-bono resources from other organisations Some alliances may be based out of a host organisation in order to minimise administration and rental costs. In addition, many alliances start up with individuals volunteering their time, in addition to their usual job, until extra funds can be secured to pay for staff. receive no funding and are run entirely by volunteers. The initial costs of setting “ Weup the alliance were low and carried by the president. Members attending the meetings are reimbursed their travel costs by their own patient organisations. Rent of meeting space and catering are covered by contacts at the University or other umbrella Dutch Brain Council organisations.


3.3 How EFNA can help Existing and newly-formed national neurological alliances will be invited to become part of the EFNA umbrella, as Associate Members. This will ensure that they are invited to attend, with costs covered, the Annual General Assembly [GA] – which will include a satellite meeting of representatives from these national organisations. The GA is a forum for our Members to share ideas, experiences and challenges on topics of common concern and to avail of peer support. Members also have the opportunity to learn more about and contribute to EFNA’s activities, shape EFNA’s annual workplan and to bring their issues to the table, which we can take forward with our contacts on the European stage. Those who are interested in building an alliance in their own country will also be invited to participate at the GA and to benefit from support and advice from EFNA and the alliances already in existence. EFNA can put prospective alliances in touch with existing groups to enable the sharing of best practice and expertise. EFNA will continually involve the alliances in its work programme and will support initiatives of mutual interest or concern. Issues raised by the alliances will also be used to focus EFNA’s advocacy and other activities.

3.4 About EFNA The European Federation of Neurological Associations [EFNA] is an umbrella group representing pan-European neurology patient groups. Our slogan ‘Empowering Patient Neurology Groups’ encapsulates our goals as an Association. We strive to add capacity to our members – allowing them to be the most effective advocates possible in their own disease specific areas. EFNA embraces the concept of Partnership for Progress – working at a high level with relevant stakeholders from the fields of policy, medical, scientific/research, industry, patient partners and other key opinion leaders.




We would like to express thanks to all those organisations and individuals who took time to share their experiences to inform this toolkit: Alliances: Dutch Brain Council Neuroalianza Neurological Alliance of Ireland Neurological Alliance of Scotland Neuropositive Foundation Member organisations: Esclerosis Lateral Amiotrofica (ADELA) European MS Platform Federación Española de Párkinson Headway Glasgow MS Society Scotland Parkinson’s UK Policy makers: John Bowis OBE Mary Harney We also thank Dr Alexis Willett, Punch Consulting, for developing this guide. See: Photography: Przemyslaw Wierzchowski, NeuroPozytywni Foundation Sinead Bradley, Neurological Alliance of Ireland * This guide was supported by an unrestricted educational grant from Allergan Inc. @EUneurology



Empowering Patient Neurology Groups

The European Federation of Neurological Associations (EFNA) 2014 32

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