Liberating the NHS: increasing democratic legitimacy in health

The Federation of Irish Societies (FIS) is a national umbrella organisation representing the Irish voluntary sector in Britain. FIS has over 100 members including clubs, societies, welfare organisations and cultural organisations.

Analysis of national and regional data has shown that the profile of the Irish population in Britain is significantly different from the population as a whole1. The white Irish population has a large proportion of people who are of pensionable age. In fact, 24.9% of white Irish people are aged over 64 years in comparison with 15.9% of the population as a whole2. The Irish community are also more likely to be single, either because they never married or are separated, divorced or widowed3. For these reasons the White Irish are much more likely to live alone; a fifth of all white Irish households comprise a pensioner living alone4. The Irish population are more likely to suffer from long term health problems or disabilities than the White British population. Data from the 2001 Census shows that 25.5% of the White Irish population, of all ages, and both genders, have a limiting long-term illness in comparison with 17.9% of the population of England as a whole. This is the highest level of long-term limiting illness found in any of the ethnic groups included. Research has shown that the Irish community have a shared identity around the Irish being resilient people. This is closely linked with their tendency to seek solutions to health and other problems from within the community. Irish people tend to turn to Irish friends, local social clubs or the church for support, financial and otherwise, rather than seeking help from statutory services. The lack of National Health Service and the high cost of healthcare in Ireland, meant people grew up in a culture of not going to the doctor unless absolutely necessary. This means that even today the Irish community in Britain often delay contacting health services when they feel unwell5 . This self reliance means the Irish community will tend to care ‘for their own’ which probably goes some way to explain why there are relatively high levels of care in the white Irish population compared to many other ethnic minorities, particularly in the following groups; Working age women – 1-19 hours a week of care 8.6% Working age men – 50+ hours a week of care 1.7% Pensionable age men – 50+ hours a week of care 4.0% 6 Research has shown that the Irish community in Britain have higher rates of mortality from a range of diseases including heart disease, strokes, cancers and respiratory 1 Tilki M, et al (2009) The Forgotten Irish. Social Policy Research Centre, Middlesex University 2 Federation of Irish Societies (2007) England: the Irish Dimension. An exploration of 2001 Census Data FIS 3 Tilki M, et al (2009) The Forgotten Irish. Social Policy Research Centre, Middlesex University 4 Federation of Irish Societies (2007) England: the Irish Dimension. An exploration of 2001 Census Data FIS 5 Casey, R. (2010) ‘You doctor yourself’: health beliefs, resilience and wellbeing among the Irish in Yorkshire. Urban and Regional Studies, Sheffield Hallam University 6 Federation of Irish Societies (2007) England: the Irish Dimension. An exploration of 2001 Census Data FIS

disorders, as well as accidents and injuries. For example first and second generation Irish have the highest rate of cancer of any ethnic group in this country. These differences are not adequately explained by the socio-economic profile of the population. There are higher rates of mental health problems and suicide within the Irish community. There are also particular health conditions that are more prevalent within the Irish community including coeliac disease and one in five Irish people carry a disease which causes a liver disease Haemochromatosis. Research has shown that the Irish are the only immigrant group whose physical and mental health deteriorates after leaving Ireland and settling in Britain. Should local HealthWatch have a formal role in seeking patients’ views on whether local providers and commissioners of NHS services are taking account of the NHS Constitution? Local Healthwatch should, like LINks previously, continue to represent patients’ views on whether providers and commissioners are taking account of the NHS Constitution. They need the resources, training and support to deliver even on those functions that LINks were involved in. LINks vary widely in their effectiveness and ability to deliver certain functions. There needs to be a clear set of guidelines for Local Healthwatch that bring them all up to an agreed standard. It is important that there is more opportunity to share good practise and learning between Local Healthwatches. Hopefully Healthwatch England will take on this role and ensure information is disseminated across the network. Should local HealthWatch take on the wider role outlined in paragraph 17, with responsibility for complaints advocacy and supporting individuals to exercise choice and control? This needs to be considered very carefully as this is a specialised service. Healthwatch would need to be properly resourced and skilled up to deliver advocacy services. It is vital that the knowledge and experience built up by those currently delivering the Independent Complaints Advocacy Service (ICAS) is not lost if the responsibility does move to the local Healthwatch. What needs to be done to enable local authorities to be the most effective commissioners of local HealthWatch? Local Healthwatch need to be completely independent, there is a danger that the fact they are commissioned by local authorities will undermine their independence and ability to critique local service provision. Q6 Should the responsibility for local authorities to support joint working on health and wellbeing be underpinned by statutory powers? We welcome the recognition of the interdependence between health and social care outlined in the White Paper and believe that local authorities should have a statutory role to support joint working on health and wellbeing. Q7 Do you agree with the proposal to create a statutory health and wellbeing board or should it be left to local authorities to decide how to take forward joint working arrangements? We think that the creation of statutory health and wellbeing boards will be a useful way to ensure there is joint working between health, social care and public health. It will be important that the membership is considered carefully, see below.

Q9 Is there a need for further support to the proposed health and wellbeing boards in carrying out aspects of these functions, for example information on best practice in undertaking joint strategic needs assessments? The joint strategic needs assessments (JSNA) process should be transparent and include the wider public and patients. Often we have found that the Irish are not mentioned in JSNA; our members have had to campaign hard to ensure the Irish are not excluded. It is vital that the Irish are included because of the previously mentioned specific health needs of the community. It is not clear how the JSNA will work because it will assess the needs of a borough’s population but they could be accessing healthcare elsewhere through the choice agenda. Q12 Do you agree with our proposals for membership requirements set out in paragraph 38 - 41? We agree with the proposals for membership. It is important that a local representative from the Health Watch is on the board as well as representatives from relevant voluntary and community sector organisations. Q17 What action needs to be taken to ensure that no-one is disadvantaged by the proposals, and how do you think they can promote equality of opportunity and outcome for all patients, the public and, where appropriate, staff? The White Paper talks about an “information revolution” to enable people to make informed choices about their healthcare. This information must be available to all, not just available online and in a variety of languages. There will probably be a role for Local Healthwatch and the voluntary sector in the interpretation of this information and supporting people making decisions about their healthcare. It is vital that ethnic data is recorded accurately so we can monitor outcomes and ensure that certain communities are not disadvantaged by the changes. Liberating the NHS: commissioning for patients What arrangements will support the most effective relationship between the NHS Commissioning Board and GP consortia in relation to monitoring and managing primary care performance? The move to GP commissioning will lead to new geographies, as individual consortia are likely to cover smaller areas than PCTs currently do. It is not clear how outcomes will be measured at consortia level and as such how the Commissioning Board will be able to assess their effectiveness. What safeguards are likely to be most effective in ensuring transparency and fairness in commissioning services from primary care and in promoting patient choice? We are concerned that GP commissioning is being rolled out, relatively quickly, without any formal piloting. There is no detailed financial evaluation, nor have there been any specific outcomes published which we could measure the changes against. The patient choice agenda has the potential to alienate those who do have the ability to access or understand the information about providers and also those who cannot travel to a better provider. We believe that people do not always want choice they just want their local services to deliver good quality care.

How far should GP consortia have flexibility to include some practices that are not part of a geographically discrete area? Currently, health information and data relates to the geographic areas of LA, PCTs and wards, the move to GP commissioning would require a major shift in the information systems to ensure that consortia have the relevant information for their specific populations. Should there be a minimum and/or maximum population size for GP consortia? GP consortia should be able to decide what size consortium is most efficient in their area. It is important that they do not become too big that they loose their local focus but equally it is important that they are not too small that they become less cost efficient. For example if consortia remain small each will have to ‘buy in’ admin, financial support and other expertise which will not provide such value for money. How can GP consortia best be supported in developing their own capacity and capability in commissioning? GPs leading the commissioning for their consortium will need extensive training in the following areas: corporate leadership, contracting, analysing data on contract performance, lead commissioning, financial management and risk assessment, comparative information analysis and benchmarking. It is important that the knowledge and expertise of the PCTs is not lost in this restructure. It is likely that consortium will buy in experts from PCTs but they should also be involved more directly in building the capacity of GP to commission services. What arrangements will best ensure that GP consortia operate in ways that are consistent with promoting equality and reducing avoidable inequalities in health? GPs lack the specialist mental health knowledge to understand the complexities of mental health commissioning. Mental health is often seen as the ‘Cinderella service’ of the NHS and we cannot afford for it to slip further down the list of priorities. GP commissioning has the potential to lead to a postcode lottery for mental health services. Services will be good in areas where GPs have an understanding of the complexities of mental health commissioning and poor in other areas where there is less knowledge and understanding. A recent report from Rethink found that only a third of GPs are ready for a new mental health role. The Irish account for 1.9% of people with long term mental health problems7so this is a key concern for this community. How can GP consortia and the NHS Commissioning Board best involve patients in making commissioning decisions that are built on patient insight? The White Paper states that GP consortia will have a “duty of public and patient involvement”, there is no more clarification on what constitutes this duty and how it will be implemented. We believe that the engagement of patients and carers should be contractual and enforceable. Consortia should have boards which lay people are recruited to sit on; they should pay an appropriate attendance allowance. Consortia should evidence patient involvement in their decision making process. 7 Care Quality Commission and National Mental Health Development Unit. Count me in 2010 – The national mental health and learning disability ethnicity census (2010)

Local Healthwatch should be involved in some capacity with GP consortia to ensure the patient voice is heard in commissioning decisions. How can GP consortia best work alongside community partners (including seldom heard groups) to ensure that commissioning decisions are equitable, and reflect public voice and local priorities? In addition to the areas of training mentioned previously GP consortia need training in local community engagement. They need to learn from the experience of PCTs who have developed innovative models of community engagement. GP consortia also need to engage community and volunteer sector providers who have vast experience working with hard to reach groups. How can we build on and strengthen existing systems of engagement such as Local HealthWatch and GP practices’ Patient Participation Groups? Those who currently participate in LINks and GPs Patient Participation Groups are not representative of the population as a whole. More needs to be done to actively involve people from more diverse groups. The lack of National Health Service and the high cost of healthcare in Ireland, meant people grew up in a culture of not going to the doctor unless absolutely necessary. This means that even today the Irish community in Britain often delay contacting health services when they feel unwell8. If the Irish community tend not to go to their GP for health problems they are unlikely to join patient groups. More needs to be done to engage BME groups in these opportunities. Transparency in outcomes - a framework for the NHS Do you agree with the key principles which will underpin the development of the NHS Outcomes Framework (page 10)? We welcome the move from process targets to an outcome based approach and agree with the key principles. It is important that the public have an input into the development of the new framework to ensure it is focused on the outcomes that matter to patients. How can we ensure that the NHS Outcomes Framework will deliver more equitable outcomes and contribute to a reduction in health inequalities? We have some concerns over the use of patient reported outcomes; these may only include engaged patients and exclude those people from BME groups and those who cannot or do not wish to fill in a form. Do you agree with the five domains that are proposed in Figure 1 (page 14) as making up the NHS Outcomes Framework? We agree in principle to the 5 domains of the new NHS Outcomes Framework. We believe the age limit in relation to preventing people dying prematurely should be removed as this could lead to age discrimination.

8 Casey, R. (2010) ‘You doctor yourself’: health beliefs, resilience and wellbeing among the Irish in Yorkshire. Urban and Regional Studies, Sheffield Hallam University

Is the approach to assessing and analysing the likely impacts of potential outcomes and indicators set out in the Impact Assessment appropriate? We are pleased that the initial Equality Impact Assessment (EqIA) acknowledges that inequalities exist in relation to access to information, awareness of choice pathways into care and other health outcomes. We look forward to the publication of the full EqIA and are pleased that there are plans to involve a range of stakeholders in its development.

Liberating the NHS: Regulating healthcare providers The White Paper sets out a number of proposals to ‘free’ foundation trusts to innovate for improved outcomes and services. We believe there is a need for both balance and prudence with regard to deregulation and would hope to find this as more details of the reforms are released.