A first for Northern Ireland

Consultant Paediatrician Dr Bernadette O’Connor has set up a new cow’s milk allergy clinic for children, providing faster access to expertise on allergy in community settings across South Eastern Health and Social Care Trust in Northern Ireland. We spoke to her about the innovative approach they are taking to supporting families, the improved outcomes and reduced waiting lists they are already seeing, and how an integrated culture of quality improvement at South Eastern has enabled the project to succeed.

Tell us about the new clinic and why it’s needed.

There’s a growing problem with delayed cow’s milk allergy (CMA) in small babies which means they are unable to tolerate normal formula milk or even breast milk if the mother has dairy in her diet. It can cause digestive problems making babies unhappy and irritable and in some cases quite unwell. Diagnosis can take a while as the symptoms can vary a lot, and the pattern takes a while to establish. (There is no specific test to diagnose CMA, you can only tell by removing cow’s milk from the diet for a number of weeks and then reintroducing it and monitoring the effects.)

Our allergy team at Ulster Hospital had been feeling frustrated for a while that we weren’t able to meet our patients’ needs. Babies were being seen so much later than we’d have liked, with lots of different appointments to see different people and some really long waiting lists. Even if babies were triaged as urgent, they could wait up to 12-13 weeks, then they’d have to wait again to see a dietician. At one point the waiting time to see the community dietician was over a year. By the time we saw them, parents were very stressed, some babies were very unwell, we just felt that the gap was getting wider rather than improving.

The idea for the new service came from an offhand quip in our multidisciplinary meeting, ‘wouldn’t it be good to just get everyone together and give them all the information and support at the same time’. But our staffing and resources were limited. Being part of the Innovating for Improvement programme allowed us to see it as a project completely separate from our normal activity. It’s given us the freedom to be flexible and to do what we think is right for patients rather than what fits in with our current resources and ways of working.

What is it that’s so innovative about this model?

Whilst multidisciplinary clinics are not a new concept, our new service brings together a paediatrician, a dietician and an allergy nurse. We now deliver outreach clinics in community settings and GP surgeries across the four areas of the trust, rather than families having to come to us at the hospital.

The new aspect of our approach is that it combines a group education and advice workshop for parents, along with individual assessments for each child during the same clinic. Parents get that group interaction and peer support, along with individualised one to one support from members of the team. We are providing both the diagnostic pathway and the education at the same time, rather than families being referred for group education after a diagnosis has been made. I’ve not seen any evidence of this approach being used elsewhere for milk allergy, it’s certainly a first for Northern Ireland.

The workshop provides information about allergy, diagnosis, and practical dietary advice about how to manage a child on a dairy-free diet. 

Following the clinic, families have follow up sessions on the phone with the nurse and the dietician, to confirm diagnosis and to keep an eye on things.

Is it important that you’re providing the service within primary care?

Managing milk allergy shouldn’t be difficult, and can easily be carried out at community level. Primary care is increasingly busy and implementing new guidelines and practices is not always as easy as it is in theory. We felt we needed to show how important the clinic is by providing the service ourselves at the start. That way we can demonstrate the benefits and build up the knowledge and confidence in local teams. Health visitors in particular are very keen to get involved and will be joining us in the clinics.

In the long term we hope the service could be managed completely within primary care as a dietician and health visitor-led service with only the more acute cases referred on to a consultant-led service. But for now we’re just focused on building the case. We can have those conversations later.

What results are you hoping to see?

Our aim is to see more babies and to get them diagnosed earlier. We’ve been building up gradually over the last few months and we’re now offering a clinic every week in all four areas of the trust. We can see 6-10 new patients in an afternoon and the numbers are growing nicely. We’ve seen around 80 patients already and we’re keeping up with demand.

We’re seeing families quicker and they are getting the information they need, which is making a real difference to outcomes. By the time we speak to parents in our follow up phone calls, children are on the pathway and doing well. At the moment the average waiting time is 1-2 months to attend a clinic, depending on whether parents are willing to travel to a different part of the trust. And that’s to see everybody: to get the dietary advice, the medical advice, and a treatment plan.

How has South Eastern’s organisation-wide quality improvement (QI) programme had an impact on the way you’ve approached this project?

The project didn’t stem directly from the QI programme itself, but more from a short introduction I received as part of the trust consultant leadership programme, but it has certainly been supported by it. The focus on ongoing quality improvement in our trust has given us the freedom to do what’s right for the patient, rather than what’s right for the system and processes that we already have. It’s allowed that flexibility to get on with it and work it out as we go along, rather than having to have an exact plan before we begin.

Our lead dietician has completed a previous Health Foundation leadership fellow programme and our allergy nurse is currently on the trust’s SQE (QI) programme. The QI team have also been hugely supportive during this process. I think that really helped to give us the tools and skills we needed to think about a different model, and meant we were all coming at it with the same approach.

Northern Ireland has more structural integration than other parts of the UK, has this helped to make this kind of service possible?

We do have an integrated health and social care system but we still have separate budgets for acute and community services within the system. So while our management structure for long-term panning is probably more integrated, in the short term it’s still sometimes difficult to cross the budget boundaries, although it is getting better. The integration is actually more visible in the trust’s approach to QI, as all health and social care teams participate within the programmes and it is good to see how the various teams approach services within their areas. I think we are very fortunate within this trust as our chief executive, Hugh McCaughey, has been so proactive in terms of quality improvement and has built a supportive QI team. That’s our key driver here.