Asthma UK Cymru Highlights Disabling Impact Of Severe Asthma

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

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The serious and disabling impact of severe asthma is highlighted today as Asthma UK and the Severe Asthma National Network (SANN) launch a new report on the condition, called Fighting for Breath. The findings of the report are taken from England, Scotland and Northern Ireland and there are significant parallels with the situation in Wales, which are supported by testimonies from Welsh people with severe asthma.

We know that people with severe asthma face prejudice because of the condition, due to ignorance about how serious asthma 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 those affected even face discrimination from those whose job it is to care for them, such as healthcare professionals and teachers.

Gemma Evans, 25, from Merthyr Tydfil, has suffered with severe asthma her whole life. She says: 'Over the last four years I have had more than 30 admissions to A&E and been in intensive care twice. People need to realise how devastating severe asthma can be. It has affected every aspect of my life, including my ability to work, look after my daughter and even climb the stairs.'

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 report highlights the extent to which people with severe asthma and their carers 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 in Wales, including policymakers, healthcare professionals, social workers, teachers, employers, benefits agencies and the general public, 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 development and implementation of specific asthma standards in Wales, so that people with severe asthma receive consistently high quality care to suit their individual needs. It is also vital make sure there is adequate capacity in specialist services for people with severe asthma - at present, there is no tertiary specialist centre for severe asthma in Wales.

- 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.

Nia Jeffreys, National Director of Asthma UK Cymru, says: 'We're calling on everyone who can make a difference to the lives of people with severe asthma to take action. We know 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 Welsh Assembly Government must ensure that those affected and their carers are able to access the benefits they need, protect spending on specialist nurse posts and develop specific asthma standards for Wales.'

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'.

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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