Parent experiences with paediatric allergy pathways in the West Midlands: A qualitative study

Parents whose children had allergies valued having a mutually respectful relationship with their doctor—especially their GP, who was usually their first contact with the healthcare system. They felt thoroughly distressed when they perceived the attitude of the doctor as dismissive.

I don't really feel like my GP has been part of this journey … in fact, the first GP I saw sort of tried to downplay everything… [P14]

I'd come out sometimes and I'd be so frustrated because I felt like, “You weren't listening”. They [the GPs] just wouldn't listen to me. It was as if – you know, “You're just an overreacting mom”. [P6]

On occasion, parents felt that poor advice from their doctor could have harmed their child.

… he [the GP] said, with regards to whether it was nuts or not, he wasn't sure but if we wanted to, we could try it again -which was a bit of ropey advice - but we actually did and it did come up again badly… [P17]

the lady doctor that I saw said ‘oh, no, she needs to have at least four or five episodes [before we refer]’ …. but because she [the child] was so bad, I didn't wanna run the risk of giving it to her just for her to have another episode … [P19]

One of the parents had similar issues with a specialist centre whose care, she felt, was more protocol based than individually tailored. She felt helpless and frustrated by some of her experiences.

[The specialist] wouldn't write a letter explaining [my son's] allergies until they made him have a food challenge which infuriated me because he's been in several times with a reaction to milk …. So I had to take him in to witness them – rub milk on, his lips, watch him go into reaction and I'm there thinking, ‘Why the hell have you had to do that to my son, just to write a letter saying, ‘Yeah, he's got a dairy allergy?’ So in that way, I did feel bullied by the clinic sometimes. [P22]

Parents felt some GPs were better than others when it came to managing their child's allergies. They sometimes opted to see different GPs within the same practice, even if this meant waiting a few extra weeks.

…I suppose if I want to be diplomatic about it, there are GPs that I would prefer to see as opposed to one or two others. Some are quite dismissive. [P11]

… because the Doctor I wanted to see that, he was one of the children's Doctors, you know, she's seen right from being little, I normally have to wait, maybe 3, 4 weeks but that's because I want a specific Doctor..because that's who [the child] been seeing all along. [P21]

When the parents felt “listened to” and that their GPs were sympathetic, they were generally accepting of the treatment and management plans, even if the referral was deferred or the treatment was not particularly effective.

He [the GP] just said, if ever you reach the point where it's interfering with life or that there's too much going on…., come back because I can always refer her, and we can just get it sorted out once and for all. [P21]

… yeah, [the GPs] are helpful. They're trying to find the different creams and all the rest of it, but I think it's quite an inexact science in terms of what creams will not react with the child and all the rest of it. [P13]

… I didn't feel at any point that when I went it was like, oh it's not you again! … I'd say definitely with the E45 I thought… well that's not eczema cream, but I can't really fault them for trying the different creams. [P7]

Parents were very critical of doctors who would not acknowledge their lack of knowledge with regards to managing their child.

I think a lot of doctors tend to think that they know everything … and I don't know whether that's because they feel that there's an expectation from their patients that they should know everything. I think with the first GP I saw, there was some degree of making it up as they went along. [P14]

Parents who accessed emergency services for their child's allergy felt that they were well looked after and then referred to the allergy services as appropriate. Experiences with accessing GP services, however, were more variable. Some GPs had made special provisions for children, and therefore, accessing appointments or advice in these surgeries was reasonably straightforward.

… the receptionist will sometimes say they'll get a doctor to call you back. And you can always speak to a nurse if you don't wanna wait. The nurse will always speak to you, … So in that respect it's, it's okay. [P19]

Others found that getting an appointment with their GP can be very difficult and stressful.

… trying to get an appointment with them was like near on impossible unless you were prepared to kind of go to their sit and wait surgery which is a bit difficult to do if you've got other children with you. [P12]

– it can sometimes take half-an-hour of phoning to actually get an appointment in the first place…it's almost like a bit of a lottery. You try and phone to get through and …it'll just come up with the engaged tone. I've actually tried to call about 120 times. And that's no exaggeration. [P11]

Referrals to specialists in the NHS are possible only via the general practitioners or through the emergency department within the hospital. The process was quite straightforward for a few parents.

I saw a GP and explained everything that had happened and she…yeah, just referred us straight on. [P3]

Securing a referral, however, was a stressful process for some parents. They describe their frustration since their child was not being adequately managed in primary care and yet they faced problems with being referred to a specialist. Parents sometimes had to be quite determined to secure a referral.

I'd sat and refused to leave until I had a referral…because a friend of mine actually told me they can't refuse to refer you. So, I said, ‘I'm not leaving now until he gets the referral’. [P6]

I kind of planned my attack. So I specifically made an appointment with one of the female doctors at my surgery…and by the time I'd walked out, I didn't just have a referral; I had an appointment. [P14]

Once a specialist referral was made, most parents expected to wait a while before being able to actually consult a specialist for the first time. This was frustrating for some.

The appointment letter came through pretty quick, … but when you opened the letter all of a sudden we had to wait another three months to be seen. That was very frustrating. [P11]

… the waiting times for the appointments should not be so long, because we've been waiting months for the appointment. [P9]

The reaction to follow-up care was mixed. While some found them useful, others were critical. They questioned the usefulness of short consultations and also the organization of follow-up clinics.

[the follow up] was very useful because up until a couple of weeks back [my child] wouldn't entertain eating a nut. So now she is eating other nuts, and she is absolutely fine. [The specialist nurses] at the hospital, you know, they were the catalyst to push her to do that. So from that point of view, it has been very useful. [P15]

… we only really get about ten minutes in the appointment and … so it's not kind of an in-depth appointment really, it just I feel like there should be a little bit more; … it's the worry of knowing that the reaction is so severe, that anaphylactic shock that's really scary to me so I feel like having a ten minute appointment once a year isn't really enough. [P12]

Most (16/18) of the parents interviewed were reviewed in clinic by an allergy specialist nurse. Some had not realized this, although all clinicians normally introduce themselves to the patients ahead of the consultation.

I thought she [the specialist nurse] was a doctor. [P6 and P3]

A majority of the parents were happy to see a nurse:

… I think she's [the nurse specialist] probably had more specialist training in that area than some of the doctors have. She is very experienced and I trust her one hundred per cent. [P20]

…“thorough” was a word that definitely came into my head when I was with her [the specialist nurse]… [P14]

… they tell you at the beginning so initially, I was a bit surprised … but when she then started talking about everything that she'd been doing - I just felt confident that she was the right person to deal with (my child). [P17]

Whereas most parents in our cohort did not express a preference for being seen by doctors in the specialist clinics, some felt that there should be a doctor available as “back-up” in case of complex conditions where the nurse may be overwhelmed. However, a few parents explicitly preferred seeing a doctor and were disappointed when this was not possible.

… I guess while we've seen the nurses and not the consultant there's perhaps that nagging doubt that if we'd seen the consultant would the advice have been slightly different. [P1]

Parents were generally pleased with the care they got from hospitals. Often, the allergy clinics put them in touch with other services such as dermatology or dietetic services so that the parents can be given adequate advice regarding management of their children. Sometimes, such referrals take a long time to materialize and this can cause enormous distress to parents. Sometimes, it was not possible to obtain co-ordinated care between various specialists, even when this was perhaps warranted.

…(my child) has an eye condition – they call it Giant Capillary Conjunctivitis… but the Allergy Clinic doesn't deal with that kind of allergy … so … for his eyes, he was under another consultant-but he (the eye consultant) didn't understand allergies. [P22].

Some parents felt that the anxiety and isolation experienced when their children have allergies, particularly after life-threatening episodes, were not being directly addressed by the healthcare system.

…that asthma [attack] then stopped him – he had to stop all sort of sporty activity for about a month…and then, after that, he struggled to get back into anything sporty and now, … he's not into sport whatsoever. So it did [have] a big knock-on effect to his life. [P22]

Most parents we talked to seemed to try and “get on with it,” changing their lifestyle as appropriate and self-managing the stress associated with their child's allergy. Some, however, felt that such stress should be more openly acknowledged and managed by the clinicians.

Is [counselling] offered to children and parents that have had that life-threatening ordeal which is terrifying?!..Does anyone ever actually follow them up and give them a phone call and say “would you like someone to talk to”? [P20]

As with any other childhood condition, parents greatly valued reliable information regarding their child's allergies. Information was generally obtained from the clinicians, through peer groups or from the Internet. Clinics were sometimes able to provide information that a lot of parents found very useful.

… they did have a Nutritionist who then told me these things that were available on the market, which I would never have known about and … a lot of things we then got on prescription,– I mean we were wheat free as well. [P22]

Since seeing [the specialist nurse], I came home with a cookery book and we've made him chocolate cake that the whole family ate. [P6]

Most parents interviewed had limited information provided by GP or A&E and consequently had to wait until seen by specialist for information regarding their condition.

… we didn't leave the GPs or the hospital (A&E) with anything other than sort of what we'd been told verbally, which was quite limited really. [P3]

On occasion even after being reviewed in secondary care, parents came away confused and feeling that the condition and tests have not been fully explained. This caused a feeling of anxiety and frustration. This quote is from a parent who was seen in a general paediatric clinic (not an allergy clinic).

Yeah, so we went in for these tests and they said, ‘Yes, he's allergic to nuts probably. Bye, bye and good luck. Hope you work it out. That… is kind of how I felt… overall nothing was explained terribly well. [P14]

Most parents obtained information from peers (fellow parents) by having informal conversations with them. This provided them with practical tips and also a sense of “not being alone.”

I go to a group, a little meet up with other mums who are also weaning and trying different diets but you compare notes, you know. [P16]

Lack of such support can lead to a feeling of isolation and increased anxiety.

… primarily, I was the only one [with this problem]. I only knew that other mum for a short time and then she moved away I was the only one whose child was going through this, so [having a local parent support group] might have been quite a good idea. [P14]

Many parents also used the Internet to obtain information regarding allergies. Accessing peer groups on the Internet was particularly popular (eg, Mumsnet, Netmums and Facebook groups) as these seemed to provide emotional as well as practical support to most of the mothers interviewed. The accessibility and anonymity of these forums as well as the empathy that these scenarios generated from other users were particularly comforting to our interviewees.

NetMums is a great one because it's one of them you can put the daftest question regarding a child that if you think it's stupid and there's always a mum that somebody's been through it and, you know, they can give you advice… [P6]

While parents in our cohort appreciated the support provided by the Internet, they recognized that the information obtained was not always accurate and can sometimes be misleading. Parents do prefer obtaining information from reliable websites (eg, NHS choices). However, some found these inadequate and disappointing.

I mean generally the NHS website is brilliant…but when it came to allergies and intolerances it was next to useless really. [P11]