Patient Experiences - Get Help

How the patient charities can help

In response to the unmet need, the patient groups run full time helplines to provide information to those affected. These helplines show that there is a lack of availability of effective information about anaphylaxis through the NHS. Helpline staff report an extreme burden of anxiety among these people caused by the knowledge that anaphylaxis can kill. The message conveyed to the allergic population by helpline staff is that anaphylaxis is serious but manageable. With high-quality information and guidance, those affected can be empowered to manage the condition and protect themselves from harm, generally by learning to self-administer appropriate medication after a reaction.

In the experience of the Anaphylaxis Campaign, this is frequently impossible because of the lack of availability of help through the NHS.

The Anaphylaxis Campaign receives approximately 20,000 enquiries annually the majority of which are asking for help and advice they cannot or have not been able to access from the NHS. Helpline staff frequently encounter deep anxiety among families affected by allergy, particularly where those allergies are potentially life threatening. Lack of information is the cause of this distress. It is common for patients to report that they have been unable to obtain adequate help and information from the medical profession.

Similarly patients with all types of allergy, including eczema, rhinitis, asthma and food allergies call for help. The Allergy UK helpline receives over 48, 000 calls each year. The usual reason is that patients cannot get help from their GP or cannot get a referral to an allergy clinic, or when they get there, find it does not have the expertise to deal with their problem.

The Allergy UK ‘Stolen Lives’ survey confirmed this.