Patient Experiences - Quality Of Life

The following quote is from the Department of Health Review of Allergy Services 2006:

‘Evidence drawn from the experience of sufferers, although sometimes lacking the support of scientific studies or “hard” data, is nonetheless compelling. The review has heard that people with allergies often feel let down by a poor and frequently unobtainable service. For those living with allergy severe enough to require specialist care, the lack of services for allergy is a problem which can greatly affect their quality of life. Some people can wait 3 to 9 months for an appointment to see a consultant in secondary care. Equally, as allergy is a multi-organ disease, some may be passed around a number of different clinical departments for the different symptoms, such as respiratory, ENT, dermatology and general paediatrics, which can make diagnosis and optimal treatment difficult.’

Impact of allergy on quality of life

This is backed up by frequently heard stories from the national patient groups for those with allergy: Allergy UK; the Anaphylaxis Campaign and the Allergy Alliance. A survey by the Anaphylaxis Campaign found that quality of life is a huge issue for those affected as these figures show.

On a scale of 1 – 5, where 1 = not affected at all and 5 = very much affected, how much do you feel you/your child is affected in each of these situations?

Quotes from patients

The patients’ groups report that quality of life is severely impaired by living with allergic disease as these quotes below show:

“I worry constantly about my daughter’s allergy. Although she is a healthy 12 year old no-one realises the pressure this condition promotes. It sometimes feels like a handicap.”
Jane Murray, Kent

“In the mornings Tim's bed looks like a crime scene as he rips off the bandages he is sewn into.”
Name and address supplied

“As a child his skin was like a burns victim. I am very anxious and don't leave him with anyone other than his Dad. ”
Name and address supplied

“On Father’s Day 2005 our son went into anaphylactic shock. He had eaten a cashew nut that I had put out for our guests. I have never forgiven myself – my son Sam was two and a half years old.”
Susan Eaton, Surrey

“People think its a few sniffles, they need to experience the blurred vision, foggy brain and lack of sleep to really understand.”
Name and address supplied

“I have to be very careful with my diet, but sometimes I give up because I am too
exhausted. Then all my symptoms get worse and it becomes a downward spiral and sometimes I think maybe this time I won't get the energy to fight back to health.”
Name and address supplied

“The underlying, ever-present fear is that one slip is potentially fatal. It truly is like walking a tightrope and [adrenaline auto-injectors] are my safety net.”
Mrs D E Fowler, Newcastle upon Tyne

“My main concern is shopping and eating out. The “may contain traces of nuts” labels occur on so many foods that I am forced to play “Russian Roulette” or eat an extremely limited range of foods.”
Name and address supplied

“The House of Commons Allergy enquiry received evidence from patients, compiled independently from interviews. This showed the difficulty patients experienced in obtaining help with their allergy , and the beneficial effect on their health and lives when they have seen an allergy consultant.”
House of Commons Health Committee, The provision of allergy services, 2004