"Feeling ignored & dismissed"

My baby started to present with very distressing symptoms on weaning (labelled as anaphylactic by Allergy UK and various support groups) and our doctor referred her to the allergy clinic. We have a 3-generation family history of anaphylactic shock (myself included, I’ve almost died twice). 

We waited for months with no contact and no allergy support of any kind (no education, reassurance, guidance, testing etc.) in spite of numerous trips to A&E. She was having serious reactions to many new foods, often 2 or 3 times a week. This was an incredibly distressing time for our family and it has taken a severe toll on our family’s mental and physical wellbeing. With our family history, seeing your own baby transported in an ambulance to hospital with allergic reactions is extremely distressing. We received numerous waiting list letters advising ‘if your case is a priority you will be seen sooner’. The telephone number in the letter did not connect to the allergy clinic and I had no way to contact anyone for allergy advice, or to chase up the referral.

I am unclear about what has gone wrong with our case. We eventually met with a dietician (6 months after the reactions began) and well past the critical time period for allergen introduction for babies. I was invited to a Dietician Teams call. This was for parents with non-severe allergies (delayed digestive issues etc.) and I was very confused about why I was included. It became apparent to me during the session that parents of very young babies (under 6 months) had been receiving significant support for allergy education and dietary advice - and for much milder issues.

The dietician listened to my concerns and apologetically admitted that something had gone wrong with our referral and that our wait was not typical for cases such as ours (we were referred numerous times by GP, HV, A&E). No attempt was made to see us sooner in spite of this.

When our appointment finally came around none of this was acknowledged or explained and I felt that we were not given the apology or empathy that was required given the distress caused and the impact this delay had on our family. The doctor was abrupt, seemed rushed and agitated, and made no apology for taking us 30 mins late for the appointment or for the confusion with our referral and the resulting absence of any support for 7 months.

The brief appointment (30 mins) was wasted re-taking a detailed case history that her MDT colleague had already spent an hour taking (which I felt explained the huge waiting list as this is not an effective use of NHS time and resources). The doctor didn’t even ask about the reactions we had been experiencing - I had to ask if they would like to know. They seemed dismissive and skeptical and asked if these reactions had been noted by A&E. I couldn’t believe they hadn't even taken the time to read the A&E notes at the very least.

They were dismissive of the family history, the reactions and my concerns and appeared keen to rush me back out the door, stating that appointments are annual. With incredibly heightened emotions and rising panic that we’d waited 7 months for this and that I was now being ushered away until next year’s appointment, I ended up very upset, making an emotional scene. I am incredibly non-confrontational, and a healthcare professional myself and I am mortified that I was driven to such an emotional reaction in order to get the help we desperately needed for our baby.

As a result of my outburst the doctor did apologise and made some accommodations (was willing to meet with me again after skin prick testing and allowed me to chat to dietician). They prescribed an epipen at my insistence (patronisingly stating that it was for ‘parental concern’). I had already familiarised myself BSACI clinical guidelines for prescribing epipens and I had to point out multiple reasons why she did, in fact, meet the criteria.

I have no understanding of why it came to this and I feel our care has been inadequate. I have minimal additional understanding of my daughter’s allergies as a result of this appointment. There still many unanswered questions. The doctor and dietician both seemed uncertain about my daughter’s allergies and there was no mention of more accurate testing (blood testing/food challenges). I eventually had to leave for childcare reasons and was promised a phone call to go through further additional information. 2 weeks have now passed with no contact. I’m sorry to say I expected nothing less. My understanding is that we now won’t see the doctor again or have any further testing until next year.

Most worryingly, the complete disregard for my daughter’s reactions (which warranted numerous trips to A&E) has left me feeling like we are being overly-dramatic and I feel so uncertain about future use of her epipens and trips to A&E as I will now always be second guessing myself due to the doctor downplaying our worries.

I feel that my family deserve an explanation and an apology that isn’t given entirely because the parent is making a scene. I don’t want any other families to have to go what we’ve experienced.