Employment & benefits
Unpredictable HAE attacks can affect every area of our lives including our work life.
The very first step to managing the impact of HAE attacks on your work life is to work with your HAE Consultant to set up a programme that will reduce the number of your attacks and that will enable you to treat attacks at the first possible moment
Even with the best HAE management plan in place you may still face difficulty because of unpredictable HAE attacks. Whilst HAE UK is unable to provide individual support we hope that signposting to the information available here will help you understand the rights and responsibilities that apply in the work place.
Your employment rights
HAE is classed as a disability. For more information see: www.gov.uk/definition-of-disability-under-equality-act-2010
You are not obliged to disclose medical information to your employer unless they ask you directly. However, it might be helpful to talk about the impact of HAE on your life at an early stage so that you can discuss what reasonable adjustments can be made for you in the work place. The HAE UK booklet ‘Understanding Hereditary Angioedema and Acquired C1-Inhibitor Deficiency’ will help you explain your medical condition and it’s impact on your daily life.
Children also have rights with regard to their education, see the gov.uk website
More information can be found by searching on ‘gov.uk‘ for related topics. Individual advice can be found by visiting your local Citizen Advice Bureau.
For online information see: www.adviceguide.org.uk/work
There are a range of benefits available to people who are affected by HAE. The type of benefit will depend on whether you are a child, the carer for a child, or an adult HAE patient. The main benefits are:
- Disability Living Allowance – DLA
- Personal Independence Payment – PIP
Individual advice and help can be obtained by talking to your local Citizen’s Advice Service.
Online information can be obtained by visiting the Citizens Advice website
A website which provides, for a fee, detailed advice sheets on applying for benefits is the benefits and work website.