6th November 2019, European Parliament, Brussels
On Wednesday, 6th November the MEP Interest Group on Brain, Mind and Pain opened for the new session of the European Parliament. The event focused on the theme of equitable access to treatment, services and support – one of the three themes the group will visit annually over the next five years.
Attendees were welcomed by Joke Jaarsma, European Federation of Neurological Associations (EFNA), and Deirdre Ryan, Pain Alliance Europe (PAE) – the group’s coordinating organisations.
Theses opening addresses presented participants with further details on the thematic focus areas for the Interest Group in the coming years. Ms Jaarsma spoke of ‘Promoting patient empowerment for increased involvement and engagement’ and Ms Ryan spoke of ‘Eradicating stigma, isolation and discrimination’ – presenting results from PAE’s recent survey on this topic, which can be accessed here.
Following this introduction, two of the group’s MEP co-chairs addressed the audience: Tilly Metz MEP (Greens, Luxembourg) and Jaroslaw Duda MEP (EPP, Poland). They both stressed their personal and professional interest in this topic – and referenced figures which highlight why these disease areas are such a cause for concern. MEP Duda reference a recent study which estimated neurological disorders to be the world’s largest cause of disability in 2015 and the second largest cause of global death. He also spoke of how 179 million people in Europe live with a brain disorder, and an additional 150 million with chronic pain. MEP Metz acknowledged that member states retain large competencies in the area of health, but she stressed that EU action can provide much added value.
After these initial introductions, the discussions moved onto the meeting’s theme of ‘Ensuring Equitable Access to Treatment, Services and Support’.
Opening presentations on European disparities in access to neurological and pain treatment were from Neil Betteridge, European Alliance for Patient Access (EAFPA) and Donna Walsh, EFNA. Both explained how access issues are increasingly focused on appropriate services, as well as access to innovative but expensive therapies. The issues raised in these opening presentations focused on topics such as increasing disease awareness/fighting stigma, addressing barriers to diagnostics, investing in primary care, providing access to multi-disciplinary, integrated care, focussing on adherence, acknowledging the importance of social care and social services/supports, moving from disease centred to person centred care, etc. [The EAFPA presentation can be found here]
As an example of the complex access needs facing Europeans, the meeting featured a case study on multiple sclerosis (MS) which was opened by Pedro Carrascal, European Multiple Sclerosis Platform (EMSP). Mr Carrascal presented the preliminary findings of the RETHINKING MS project, by the European Brain Council (EBC) and The Health Policy Partnership (HPP). This multi-year research project found that unmet needs in care for people with MS can be broadly organised around three central themes: timely diagnosis and personalised treatment, interdisciplinary and coordinated care, and adaptable support in daily life. Accordingly, MS could be considered as a model for the challenges in providing care for many other chronic neurodegenerative diseases.
As an example, Mr Carrascal focused on one of the proposed policy priorities from the report: revising disability assessments to recognise the complexity of MS. Drawing on his experiences as Director of Multiple Sclerosis Spain and citing findings of the RETHINKING MS in Spain country profile, Mr Carrascal discussed the importance of providing people with MS with social support from the point of diagnosis. Current disability assessments do not reflect the unpredictability and variability of symptoms in MS, in particular those that are ‘invisible’ such as fatigue and chronic pain. As a result, too many people are unable to access the social support that they need. Mr Carrascal closed with a reminder that MS does not live in isolation: there is great value in taking a wider view and approach to ensuring adequate access to health and social care for all chronic neurological disorders.
Following this, Professor Per Sorensen, Danish Multiple Sclerosis Center presented on The MS Care Unit, an ideal model of care for MS and other chronic, neurological conditions. Professor Sorensen cited dramatic improvements in stroke treatment following the establishment of stroke units as evidence that this model is worth pursuing. As treatment and symptomatic therapies have become more complex, the need to access specialised, interdisciplinary support has become more urgent than ever. Yet, access to quality of health care for MS varies considerably according to European nations, regions and settings. Professor Sorensen shared an adaptable model of care fit for a lifelong chronic illness, where the patient is at the centre of an interdisciplinary team composed of an MS-specialist neurologist, an MS-specialist nurse, and other specialists depending on the needs of the individual. MS Care Units will likely optimise the management of MS and improve patient satisfaction. But they may even be cost-effective for society, as they will help to maintain the quality of life, independence and working ability of people living with MS.
Next, Professor Jenny Freeman, Rehabilitation in Multiple Sclerosis (RIMS) and University of Plymouth, presented the value of personalised rehabilitation in MS. Professor Freeman explained that rehabilitation has a critical place in the management of chronic neurodegenerative illnesses like MS. Using two compelling case studies, Professor Freeman showed that even relatively inexpensive and short-term interventions can have life-changing impact on a person with MS. Such approaches may improve mobility, or even allow them to return to work. Professor Freeman explained that many people with MS risk falling through the gaps in care due to large variations in access to therapies, rehabilitation, and practical and emotional support. She emphasised that the current situation of inadequate access to MS care is unacceptable, and urged that we rethink how MS care is organised in order to provide suitable care and support to all people with MS.
[The presentation of the RETHINKING MS project can be found here. Associated policy documents can be accessed here: https://www.braincouncil.eu/RethinkingMS/]
Following these presentations on the MS case study, a moderated discussion was opened by Frederic Destrebeq, EBC.
He started the discussion with Professor Mario Battaglia, President of the Italian Association of MS [AISM] and expert for the RETHINKING MS project who emphasized the importance of the development of integrated health and social care pathways for persons with MS in Italy. At this time, care pathways for MS have already been approved by 13 regional health authorities and are pending approval in 4 other regions. The goal would be to extend them to the entire country. Professor Battaglia indicated that it is important that neurological disorders, like MS, are seen as chronic conditions so that they can feature in national plans or EU initiatives on chronic disorders.
Valentina Polylas, Director of the European Regional and Local Health Authorities provided her insights on how the cohesion funds have and could, in future, be used to support actions in improving access to healthcare and reducing health inequalities. She also emphasized the role of the regions within Member States in facilitating better access to integrated care and support services, illustrating this by a case study in Wales on primary care.
Moira Tzitzika, MS Psychologist in Greece and expert for the RETHINKING MS project indicated that in many countries, people with MS are predominantly treated in smaller clinics in the community, resulting in variable access to a full interdisciplinary team. There are geographical and financial inequalities that can affect access to specialist services and facilities. Psychological support is particularly challenging to access and are typically not tailored to the needs of MS patients. This is also the case for many other neurological and chronic pain conditions, where access can be determined by location within countries. This again highlighted the need for decentralising services, focussing on primary care and exploring new and more innovative approaches.
Dr Brona Fullen, President Elect, European Pain Federation, presented her organisation and the work that it does to educate pain specialists and other health professionals in chronic pain. The role of such medical societies is crucial in ensuring that there is a skilled health workforce available to provide patients with access to multi/inter-disciplinary specialists who can adequately diagnose, treat and support them in managing their conditions. She also spoke about how medical societies such as EFIC are leading advocacy efforts, in partnership with patient, to ensure policy and decision makers across Europe are aware of the prevalence, impact and burden of disease e.g. Societal Impact of Pain platform.
Dr Stanimir Hasardzhiev, Secretary-General, Patient Access Partnership [PACT] introduced this initiative. He emphasis that although consensus building on key issues is important, it’s now time for action. He mentioned several opportunities, including building on the conclusions of the Finnish EU Presidency around the ‘economy of wellbeing’ – around which there are discussions taking place to build an Intergroup on this topic. He encouraged the group to collect and promote examples of best practice – putting forward a case for how this could be upscaled and applied in other areas. He also stressed the importance of the EU’s digital agenda and urged the group to explore digital solutions.
Sylvain Giraud, Head of Unit, DG SANTE B1, Health Systems, at the European Commission was the last discussant. Sylvain Giraud highlighted that the organisation of care, health financing and welfare are competences that are owned by EU member states however the European Commission is providing added value in coordinating programmes of support and monitoring for health systems. For instance, the “State of health in the EU” that will be released end of November provides statistics and state of play based on well defined indicators not only related to performance but also access indicators. It is important to have relevant data for monitoring health systems as countries are going through reforms. This is also particularly challenging as health systems are not uniform across countries. Access to care is a right (universal access to care), however there are multiple unmet needs for instance inequal access to healthcare. Sylvain Giraud provided a clear overview on the forthcoming priorities under the new Health Commissioner’s mandate (access to affordable medicines, the implementation of the social rights strategy 2020-2030, etc.). He encouraged the group to use these are entry point but also emphasised that more advocacy must be done at Member State level, with countries pushing the Commission to take action.
Tilly Metz MEP closed the session by summarising the speakers input and calling for attendees to take these ideas forward in order to address the complex needs of people with neurological conditions in Europe. The group will now consider next steps based on the recommendations arising.