Report Reveals Unacceptable Discrimination Faced By People With Severe Asthma In Northern Ireland

Main Category: Respiratory / Asthma
Article Date: 15 Jul 2010 - 3:00 PDT

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The shocking and widespread discrimination faced by people with severe asthma in Northern Ireland is revealed today in a major new report called Fighting for Breath, by Asthma UK Northern Ireland. There are around 7,000 people in Northern Ireland who suffer with severe asthma.

Many of the people interviewed for the report face frequent prejudice because of their severe asthma, due to ignorance about how serious the condition can be, the fact that as a disability it is largely 'unseen' and can vary in its severity from day to day. In some cases people with severe asthma even face discrimination from those whose job it is to care for them, such as healthcare professionals and teachers.

Fighting for Breath urges policymakers, commissioners, healthcare professionals, social workers, teachers, employers, benefits agencies and the general public to recognise that severe asthma is extremely disabling, treat those who suffer with the condition with fairness and respect and ensure that those affected get the support they need to cope with their daily lives.

Many people with severe asthma have difficulty breathing almost all of the time, suffer frequent, serious asthma attacks, have endless trips to hospital for emergency treatment and live with the constant fear that their asthma will one day kill them. They also take high doses of a long list of medicines, which have harmful and debilitating side effects such as osteoporosis, growth problems, weight gain, diabetes, depression and hair loss.

The condition has a huge impact on the quality of people's lives, preventing many from being able to work, study or do normal day to day activities like caring for children, doing the shopping or even getting a full night's sleep. Severe asthma also places a huge burden on the lives of their carers, who often struggle to access financial and emotional support.

The report also highlights the extent to which people with severe asthma need financial support from the benefits system to enable them to live their lives - but their experiences of trying to make a claim are not always positive or consistent. People talk of being unable to find information about their benefits, of being routinely turned down at the initial application and about losing entitlements when reapplying for benefits.

Often, the problem is unpredictability. Severe asthma can be variable depending on the particular individual concerned, so benefit entitlement assessment can rule out some people with severe asthma from the help they need because of how well people appear at the time of assessment.

Fighting for Breath calls for:

- Everyone to recognise that severe asthma is extremely disabling, so that people with the condition are treated with the fairness and dignity that they deserve when using public services or when applying for benefits.

- The Northern Ireland Assembly to ensure that people with severe asthma can access the benefits they are entitled to and are assessed fairly when claiming. Better training should also be provided for assessors so that people with severe asthma are not discriminated against.

- Full implementation of the standards for people with severe asthma as set out in the Service Framework for Respiratory Health and Wellbeing (which was launched by the Department of Health and Social Services and Public Safety (DHSSPS) in December 2009) so that people with severe asthma receive consistently high quality care. People with severe asthma need a holistic assessment of their needs and relevant community support, in order to maintain a reasonable quality of life and mitigate the potentially isolating effects of long term disability.

Joan O'Hagan, Director of Asthma UK Northern Ireland, says: 'We're calling on everyone who can make a difference to the lives of people with severe asthma to take action. Our report shows that people who suffer with the condition are some of the most marginalised , living hidden lives, facing discrimination from many areas of society and missing out on vital life opportunities.

'To ensure that people with severe asthma receive the support and care they deserve, the Northern Ireland Assembly and the DHSSPS must enable those affected and their carers to access the benefits they need, and ensure adequate resources are allocated in order to implement the Service Framework for Respiratory Health and Wellbeing. This includes the provision of adequate numbers of specialist nurses who provide a lifeline for people with severe asthma.'

Asthma nurse Jacqui Gamble, who recently won a Research Nursing Award* for a study on improving treatment outcomes for people with severe asthma in Belfast, says: 'This report has highlighted important issues for both patients and healthcare professionals who provide care for people with severe asthma in Northern Ireland. Although patients with severe asthma make up only a small percentage of the total number of people with asthma, the healthcare costs of this group of patients generates a high expenditure for the HPSS in Northern Ireland. I hope that this report provides guidance to improve the future quality of care provision for people with severe asthma and their carers'.

*Jacqui manages the Regional Respiratory Centre at Belfast City Hospital. On 3 June 2010, she won the award for a study, which looked at how to improve adherence to medication amongst people with severe asthma. The award was sponsored by the University of Ulster. The results of the research have impacted on clinical practice significantly and all patients referred to the service now undertake a comprehensive assessment and are given a clear action plan. Jacqui is currently exploring the possible link between depression and severe asthma. This study which is funded by Asthma UK examines whether treating the depression also improves the patients asthma.

Notes

About the Fighting for Breath report

- Fighting for Breath summarises the findings of eight focus groups across the UK, attended by people with severe asthma between January and March 2010

- The full list of recommendations from the report are as follows:

Asthma UK and the Severe Asthma National Network (SANN) is calling on healthcare professionals, commissioners, social workers, teachers, employers, regulators and policymakers to work together to:

- effectively manage the impact of severe asthma medicines
- improve access to benefits for people with severe asthma
- improve support for carers of people with severe asthma
- support children and young people with severe asthma in education
- give everyone with severe asthma access to specialist care
- give everyone with severe asthma the right emergency treatment
- develop and implement national standards for asthma care
- treat people fairly if they are disabled by severe asthma.

Source:
Asthma UK

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