Referral
13. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not seen any indications that something has gone wrong.
14. Mrs T complains the Trust did not consider the full scope of evidence when considering an immunology referral made by the GP. She says the Trust did not take into account the opinion of the private immunologist to carry out further blood tests. She also says the Trust should have met with her to discuss the referral before declining it.
15. The Trust said it noted from the records there had been a deterioration in R’s behaviour in late 2018. It said it is unare of any credible scientific evidence to link elevated IgE to behavioural issues.
16. It said given R's background of nut allergies, a positive skin test for dust mites and symptoms of pollen sensitivity, allergic disease would be a plausible explanation for her elevated IgE rather than being linked to behavioural problems. It said it is unaware of any evidence to suggest the blood tests requested by the private immunologist would provide any meaningful or actionable information in the assessment of behavioural symptoms.
17. It noted R had an MRI scan in February 2022, which returned as normal. This is a brain scan used to diagnose conditions affecting the brain. It said it did not see a role for immunological intervention. It said in the absence of credible evidence to the contrary, it did not feel an underlying immunological basis for R’s behaviour problems could be defined.
18. The EAACI guidelines say high levels of IgE is often thought to be the cause of allergic diseases. However, some people with high IgE will not develop an allergy and some people with normal levels will develop an allergy.
19. Our adviser said IgE is a broad test and is raised in people prone to allergies. They said as R is herself prone to allergies and can have anaphylaxis to nuts, it is expected the total IgE would be raised. They said it was therefore appropriate for the Trust to not investigate her raised IgE further. They explained the EAACI guidance does not link raised IgE to inflammation of the brain or associated behaviours.
20. Our adviser also said whilst brain inflammation is an immune mediated process (a condition where the body’s immune system attacks its own tissue or cells, causing inflammation), this is the remit of a neurologist.
21. They explained the tests recommended by the private immunologist would not provide evidence to explain the symptoms R is experiencing.
22. They said there is no evidence to suggest raised IgE is associated with inflammation of the brain or associated behavioural changes. This is in line with EAACI guidelines which does not link raised IgE levels to brain inflammation or behavioural changes.
23. We can see the Trust reviewed the information from the private immunologist. Our adviser said there are no guidelines which say NHS clinicians must follow the opinion of private clinicians.
24. Our adviser said there are no guidelines which say NHS clinicians must meet with families before a referral is triaged. We therefore cannot be critical of the Trust for not doing so.
25. In summary, taking into account the evidence we have seen and the clinical advice we have received, we have not seen indications the Trust failed to consider the evidence when considering the referral. We have seen the Trust reviewed the information provided by the private immunologist and considered whether the blood tests recommended were appropriate. We have also seen it was reasonable for the Trust to decline the referral without meeting with Mrs T.
26. We have seen the Trust considered whether the tests requested by the private immunologist would be useful in finding out whether raised IgE levels would explain brain inflammation and associated behaviours. This is in line with the EAACI guidance which does not link raised IgE to brain inflammation or associated behaviours. It is also in line with the advice we have received. We have not seen indications the Trust did anything wrong and will be taking no further action.
27. It is understandable Mrs T would feel the Trust did not consider the full scope of evidence when considering the referral. A private clinician involved in R’s care had recommended further testing. We recognise, in light of this, Mrs T felt the investigations would provide answers and follow up care to R’s symptoms. We hope our explanation reassures Mrs T that we have not seen indications the Trust could have offered further input. We thank Mrs T for bringing her complaint to us.