Dr. Mary Tilki:

I thank the committee for the privilege of telling members about the health needs of the Irish community in Britain and what we as an umbrella organisation, Irish in Britain, are doing about it.

Despite many Irish people being successful and leading healthy and fulfilling lives in Britain, there are still many concerns about the poor health of the Irish community. Although there are problems with statistics because of the way in which data about the Irish are collected and aggregated into the overall white ethnicity category, our recent analyses of the 2011 census in the UK shows us continuing evidence of poor health among Irish people in Britain. Irish people in England have among the highest levels of limiting long-term illness, LLTI, and self-reported poor health and Irish Travellers have even worse patterns of LLTI and self-reported poor health. The Irish have an older age profile with a median age of 53 compared to 42 for the general British population and this is also significantly older than other minority ethnic groups. While age explains some health problems, it does not explain all the ill-health and premature mortality.

There is excess and sometimes increasing mortality among Irish men and women from heart disease, hypertension and stroke and the Irish have the highest mortality rates from cancer in the population. Patterns of ill-health improve across generations but some of this ill-health is still transmitted into the second and third generation, which is unusual because migrant groups usually revert to the pattern of the host population within a generation. We are, therefore, very different in this regard. There is evidence that material hardship, occupation, lifestyle and age all play a part in poor health but they do not explain the full picture. There is limited knowledge about uptake of screening, access to GPs, hospital services and treatment outcomes because of the failure of the UK Government to collect or analyse data about the Irish. A major part of our work is representing this issue to the department of health, the NHS and the government in general. We have an opportunity because there is a great deal of reorganisation and reform going on in the health service. That can be a barrier but also an opportunity. Ms McShannon will outline how we are dealing with that.

Irish people have the highest mortality rates from most cancers in England and Wales and unlike patterns in wider society, they are not declining as quickly. Sadly, there are still some cases of increasing mortality. There is evidence that even where the incidence is similar to that of the general population, mortality rates are still higher, which suggests there are barriers to treatment. Recent figures from the London Health Observatory, which are only for London, show high admission rates for most cancers than would be expected for the city's population. Some of these figures would be replicated in other cities.

Smoking rates are declining slowly in the Irish community and there are issues around obesity, nutrition and alcohol, which mainstream health programmes are not addressing. These programmes get at some sections of the community but not all. Research and our work with clients demonstrates that fear and beliefs about cancer, and embarrassment, particularly about reproductive and excretory organs, stop people from accessing help and benefiting from early diagnosis and treatment. We work with community organisations to raise awareness of cancer and to get people talking about it and learning the value of early diagnosis. I attended a cancer conference on Tuesday and I am pleased that the Secretary of State for Health announced a focus on early diagnosis and one year survival rates from cancer. We hope to get some benefits from that in the not too distant future.

However, apart from people's beliefs and failure to access services, we strongly suspect that because many Irish live in areas of multiple deprivation, they are not getting the timely or effective treatment they deserve. We hear repeatedly of people fobbed off by doctors or being misdiagnosed, often around alcohol, and of people who do not have the confidence, health or strength to assert their needs and get what they deserve. Much of our work is with the NHS Clinical Commissioning Board, Public Health England and various cancer charities to get more information about the Irish community and to analyse data. I had a short conversation with the NHS national clinical director for cancer services. He is a nice Irishman, Mr. Sean Duffy, and I hope we have him on side to address some of these issues.

As the Minister of State mentioned, we have great concerns about mental health and long-term illness relating to depression and anxiety. There is research evidence that second generation Irish people who grew up in material hardship and who had parents in poor physical health or psychological distress show greater psychological problems than children of non-Irish parents. Alcohol is always a sensitive issue in our community. We have high patterns of abstinence but also patterns of binge drinking and alcohol misuse. There is also evidence that patterns of heavy alcohol use transfer from one generation to the next. We as organisations must address that and we have had a number of programmes about it.

The Count Me in Census, covering inpatient mental health admissions between 2005 and 2010, repeatedly demonstrated high admission rates among Irish people aged over 50 and this is often related to physical disability as well. We have evidence of poor mental and physical health ill-health in men from approximately 50 onwards, leading to them having to leave the labour market. Many of them then get into a vicious cycle of inactivity, depression and alcohol use. Some of our activities are about addressing those. Ms McShannon will also address this.

The Minister of State referred to the high levels of suicide and there is good statistical evidence from the UK that the rates are not coming down as they are in the general population. There is much work to be done in this regard.

The Irish have an old age profile and this, along with a number of other factors, predisposes them to dementia. Irish organisations frequently deal with older people with memory loss or those who care for older people with memory problems.

Our Irish organisations are frequently dealing with older people who either have memory loss, think they have memory loss or are caring for people with memory problems. We do not have great diagnosis rates in the UK but I imagine Irish diagnosis rates are probably even lower. The figures the Alzheimer's Society uses to calculate prevalence suggest that there might be approximately 10,000 Irish people in England with dementia which is undiagnosed. I believe this underestimates the impact of the high levels of cardiovascular disease in the community. Social isolation related to poverty and where older Irish people live enhances the risk and also confounds the ability of older Irish people to get help. We also know that Irish Travellers, who have very low life expectancy anyway, appear to be suffering disproportionately from young age dementia.

As Irish people are white and speak English, their need for culturally sensitive care is not widely recognised. Although older Irish people have spent decades in England, things such as the Troubles and discrimination led many to lead quite insular lives in closed communities. There is widespread recognition that migrants from the Caribbean, India, Pakistan and other parts of the world need culturally sensitive care in old age, particularly when they have dementia, but there is not the same widespread recognition that Irish people deserve culturally sensitive care. This can make for a very lonely and frightening experience for somebody who is old, particularly somebody who is old with memory problems, when they are in hospital, a care home or often in their own home with help from external services.

The staff cannot or cannot be bothered to understand Irish accents or to learn to pronounce Irish names and they have little knowledge of the culture or the background of the people they are looking after, often making stereotypical assumptions about them. Family carers caring for somebody in their own home have the right to request a care worker who is Irish but are often treated as being racist if they ask for that, whereas it is generally accepted that somebody from India or Pakistan would be entitled to a care worker from that cultural background. Dementia is obviously frightening for people. When people cannot speak, their emotions and their sense of what is happening around them becomes even more important. It is particularly important that people with memory problems are cared for in as familiar an environment as possible and that activities such as reminiscence or cognitive stimulation take account of their culture. They require volunteers and staff who understand something of their background and that if an older person is agitated or difficult they might be recalling some point in their lives, such as a very difficult childhood, abuse in institutions or things people have suppressed for many years, for example, the unmarried mothers or people who have left Ireland because of their sexual orientation. We do not wish to be prescriptive about that, but it helps if people understand and generally Irish members of staff do.

The Minister referred to Cuimhne, the Irish memory loss campaign. We have already trained approximately 100 volunteers in different parts of England to make them more aware of dementia and how to communicate confidently with Irish people. We are working with several organisations to help them become more dementia friendly. Innisfree Housing Association has already been mentioned. We have been fortunate recently, through Jennie McShannon's good efforts, to be able to attract £68,000 of three year funding for a part-time volunteer co-ordinator to recruit older volunteers as what we will call "Cuimhne champions" to champion the cause, help our organisations become more dementia friendly and help older people in our Irish community. We are also leading the work with Brent local authority in outer London, the local authority that has the highest population of Irish people and, indeed, other immigrants. There are three Irish organisations in Brent and we have been working with other minority ethnic communities, groups such as the Alzheimer's Society, Age UK and a very big inter-faith group to try to make that borough more dementia friendly.

There is a great deal more to be done but time precludes me talking about that. Jennie McShannon will be able to say more about what we are doing to address some of these issues.