Introduction

The European Parliament Interest Group on Carers was created in 2007 with the aim to ensure that EU policies take account of the rights, interests and challenges faced by informal carers. It is supported by some 45 MEPs from 14 Member States, representing the full political spectrum of the European Parliament.
 
Eurocarers is a European organisation with the aim to advance informal care and represent and act on behalf of all carers (and their organisations), irrespective of the particular health need of the person they are caring for.

Informal care can be defined as unpaid care provided to persons suffering from chronic illness, disability or other long lasting health or care needs by someone outside a professional or formal framework.

This joint submission sets out our views in relation to the above Green Paper and proposes some concrete recommendations for EU level action.

General comments

The Interest Group on Carers and Eurocarers warmly welcome this Commission initiative as well as the possibility for stakeholders to directly input EU policy development. An EU focus on health workforce issues can only be received positively, given the current challenges faced by all EU Member States in this important area. We fully agree that improved cooperation and exchange between Member States on these issues can contribute to developing equitable, sustainable and effective health systems.

However, despite the many valuable analyses and proposals for action, the Green Paper is also disappointing. A recent letter, sent to the Interest Group by Health Commissioner Androulla Vassiliou in response to our comments on the lack of focus on carers in the EU Health Strategy, reassured us that the Green Paper would address informal care and carers issues as well. However, apart from a mention in a diagram and the statement that the informal care potential is under pressure, the Green Paper fails to recognise the crucial role played by carers as the bedrock of most EU care provision systems. Focusing on formal paid care providers only does not do justice to the fact that the vast majority of care is provided by unpaid informal carers; better links between informal carers with formal care systems is urgently required if health systems are to be more effective as well as remain sustainable.

Carers should be considered an implicit and indispensable part of (long term) care provision. Policies to support carers should therefore be part and parcel of any initiative relating to care, including initiatives on the health and care workforce.

   Specific comments

1 Introduction

The Paper lists a number of main challenges facing health systems in Europe:

‘Policy makers and health authorities have to face the challenge of adapting their healthcare systems to an ageing population.’

Firstly, while it needs to be underlined that the vast majority of older people live independent and healthy lives, chronic illness does increase with age; and this, in turn, leads to increasing needs for treatment, care and social support.
In this respect, Eurocarers and the Interest Group would like to underline that most of this care is provided by relatives, friends and neighbours (predominantly women). It can be argued that this form of care is the foundation of formal health and social care systems. In other words, carers are a complementary, inherent and indispensable part of long-term care provision and of the organisation and sustainability of care systems. However – and as recognised by the Green Paper - the combination of various autonomous demographic and socio-economic developments – lead to decreasing informal care potentials. Moreover, the sense of intergenerational solidarity is decreasing. In addition, health and social care systems are continuously being restructured and changed often without taking carers’ interests into account. One example is the Working Time Directive, which sets maximum limits to working time, and imposes minimum daily and weekly rest periods in order to protect workers' health and safety. This legislation does not extend to informal and family carers who have no such protection.

‘The introduction of new technology is making it possible to increase the range and quality of healthcare in terms of diagnosis, prevention and treatment – but this has to be paid for and staff need to be trained to use it.’

The Green Paper emphasizes the potential benefits and support of information and communication technology (e.g. tele-monitoring, telemedicine and independent living systems). The Interest Group and Eurocarers fully share this view. Not only will ICT for health and care support more effective care provision, it also has the potential to support (more) independent living and self-management for those in need of care.

In developing and making better use of ICT for health and care, we would like to underline the importance of ensuring effective cooperation and coordination between formal and informal care providers. While it is true that formal health care staff will need training and skills development, the same applies to informal and family carers, who will be working with these technologies as well.
 

4.  Factors influencing the workforce for health in the EU and the main issues to be addressed

4.1 Demography and the promotion of a sustainable health workforce

The Green Paper again highlights the increasing life expectancy, with chronic conditions being more prevalent in old age; this in turn ‘will have implications for care provision. Moreover, demand for formal care is likely to increase given the likely reduction of availability of informal carers as a result of changing family structures.’ To address this, the Commission proposes a number of areas for action’, one of which focuses on ‘Organising chronic disease management practices and long-term care provision closer to home or in a community setting’.
Eurocarers and the Interest Group maintain that, in order to achieve this, better alignment of formal and informal care providers would be a basic requirement.

Some concrete actions that would be needed in this respect:

? ensure availability, high quality and reliability of formal care services
? develop and extend services that support carers, such as flexible home care services
     and respite care schemes
? sensitise formal care and support services to the needs of informal carers and for
their inclusion in the care process by ensuring that patients and carers are at the centre of policy formulation rather than the health system
? develop and implement training courses for both formal and informal carers, based
on shared experience from existing training schemes, explore the options available for using such EU funds (e.g. ESF) as an investment into human capital for training both formal as well as informal carers
? promote the development and use of telecare support systems
? promote, especially in Southern and Eastern EU countries, legal forms of
employment of home care workers - mainly female immigrants, often hired on an undeclared basis by families caring for dependent people – in order to reduce and prevent exploitation and abuse phenomena

4.2. Public Health Capacity

Under this heading the Green Paper states that health workforce must be properly skilled to deal with current challenges and the changing care needs; this needs to be built into training and recruitment plans. The Interest Group and Eurocarers fully share this view, and would like to again underline the need for a better alignment between formal and informal care providers.

4.3. Training

This chapter makes the case for the creation of more university places, training schools and more teaching staff. Member States will indeed have to assess what types of specialist skills will be needed, taking into account new technology, the effects of the ageing population on the pattern of disease (changing patient profiles), and the increase of older patients with multiple chronic conditions.
The Interest Group and Eurocarers warmly welcome this view, as more appropriate formal care services and better skilled care providers will be a great support to informal carers as well.
One of the areas for actions proposed is ensuring ‘that training courses take account of the special needs of people with disabilities’. We would like to suggest adding the needs of frail older people to this action.
The Commission also proposes to create ‘an EU mechanism e.g. an Observatory on the health workforce which would assist Member States in planning future workforce capacity’.
According to Eurocarers and the Interest Group, this Observatory should not only focus on formal care provision; developments in relation to informal care provision should be part of its remit. We believe that cost neutral proposals should be introduced by Member States and supported by the Commissions Green paper which would include the introduction of quality standards in both community and home care services and carer-awareness training programmes for Member States health agencies and department staff who deal with carers on an ongoing basis.

Lastly, training should be recurrent and not only at the beginning of one’s career.

4.6. Data to support decision-making

The Green Paper refers to the current lack of comparable data and information, e.g. on numbers of health workers, in training and in employment, their specialisations, their geographical spread, age, gender and country of provenance. Given the potential for shortages in one part of Europe to have an impact elsewhere, Europe-wide information is important for planning and providing health services for all health authorities throughout the EU. The Interest Group and Eurocarers agree with the proposed actions, i.e. ‘Harmonising or standardising health workforce indicators. However, these should also take the resource provided by informal carers into account. Common research methodologies should be developed and harmonized data should be gathered on the number of carers.
  
5.  The impact of new technology: improving the efficiency of the Health workforce

The paper states that for certain diseases and patients, technology may allow shifting care away from hospitals into community and primary care settings and into patients' homes, which can improve the quality of life and contribute to better use of resources. The need for training is also emphasized. Again, Eurocarers and the Interest Group would like to emphasize that carers can also benefit from these technologies and need training as well. More support for carers and better cooperation between informal and formal care providers would be a requirement to make the best possible use of these technologies, and maximise their benefit in terms of quality, efficiency and easing the burden of (formal as well as informal) care providers. .
The actions proposed by the Commission, i.e. ‘Taking action to encourage the use of new information technologies’ and ‘Ensuring suitable training to enable health professionals’ would also be highly relevant for informal carers. Therefore, we would like to urge the Commission to include informal carers in future activities in this area.

7. Cohesion policy

The Paper highlights the possible supportive role of the Structural Funds ‘to develop the health workforce’ by helping to improve skills and competencies. We would like to explore the possibility of making use of these Funds for the training and support of informal carers (who, in many cases, struggle to combine caring responsibilities with their paid employment).

Conclusions

Carers are an inherent, indispensable and complementary part of care provision – they should be considered as the unpaid workforce for health. If carers are expected to keep on caring – which they are – they should be taken into account in policy development and any initiative addressing the health work force. Much remains to be done to improve their situation and to safeguard their rights and interests as well as their health and well-being. In a time of recession, informal carers and the vulnerable people they care for come under a lot of pressure. Rather than considering cuts to their already poor services, greater appreciation of carers and the service they provide, not only to the person they care for but society at large, is urgently needed.

The main issues can be captured under the following headings:

? Apart from the social and economic recognition of the contribution of carers, the
     question of the status and adequate financial compensation remain critical elements.
? The low social value and status and conditions of “employment” of those that carry
     out informal or formal care work is a fundamental issue, and is identified as one of
     the reasons behind the lack of recognition of carers.
? In many EU countries, family carers are largely invisible and unrecognised.
     Therefore, it is imperative to support advocacy structures, locally, nationally and at
     European level, which can give voice and visibility to family carers.
? A range of support services are needed for family cares and the cared for, e.g.
respite care, support from self-help groups; training opportunities on caring, and information.
? The quality of existing formal services also needs improving to better meet carers’
     needs

If carers are to continue to care – and they are - , active measures will need to be taken in the short term in a number of policy areas serving to support carers and to compensate for the loss of social and economic opportunities they are faced with.
The Interest Group and Eurocarers would be happy to support the Commission in its efforts to include informal care and carers in the full range of EU policy development.