Report reveals unacceptable discrimination faced by people with severe asthma
15 July 2010

The shocking and widespread discrimination faced by people with severe asthma across the UK is revealed today in a major new report* called Fighting for Breath, by Asthma UK and the Severe Asthma National Network (SANN).

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 and 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 policy makers, 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.

There are a quarter of a million people in the UK who suffer with severe asthma. Many 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 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 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 they are assessed.

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 UK Government 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.
• Specialist asthma nurse posts to be protected from cutbacks, as they are a lifeline for many people with the condition. Evidence also shows that they can help to reduce costly emergency hospital admissions.
• The development and implementation of consistent standards for asthma across the UK, so that people with severe asthma receive consistently high quality care to suit their individual needs. We want England to have its own national strategy for asthma, Wales to develop specific asthma standards, Northern Ireland to implement the new respiratory service framework effectively and Scotland to develop standards for adults with asthma (it has standards for children already).
  

Neil Churchill, Chief Executive of Asthma UK, 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 with severe asthma are some of the most marginalised in society, 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 Government must enable those affected and their carers to access the benefits they need, protect spending on specialist nurse posts, and develop and implement consistent standards for asthma across the UK.’

Beverley Hargadon, Senior respiratory research nurse from the Severe Asthma National Network (SANN), says: ‘This report has highlighted important issues for both patients and healthcare professionals who provide care for people with severe asthma. 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 NHS.  We therefore hope that this report provides guidance to improve the future quality of care provision for people with severe asthma and their carers’.

Ends

*Fighting for Breath is being launched at a reception at the House of Lords on Thursday 15 July 2010
 

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 research was supported by an unrestricted grant from Novartis UK Ltd
  

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.
  

About Asthma UK

• For further information, contact the Asthma UK media office on 020 7786 4949 or at mediaoffice@asthma.org.uk
• Follow Asthma UK’s media team on Twitter, at Twitter.com/AsthmaUKMedia
• Asthma UK is the charity dedicated to improving the health and well-being of the 5.4 million people in the UK whose lives are affected by asthma
• For up-to-date news on asthma, information and publications, visit the Asthma UK website asthma.org.uk
• Kickasthma.org.uk is Asthma UK’s interactive website for children and young people with asthma. The site offers support and advice and includes an asthma dictionary, problem page, games and a messageboard
• For independent and confidential advice on asthma, speak to an asthma nurse specialist on the Asthma UK Adviceline, on 0800 121 62 44 (from 9am to 5pm on weekdays). Or email an asthma nurse at asthma.org.uk/adviceline