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Statement from Carla Jones, Chief Executive Officer, Allergy UK

Thank you to all those who have posted positive comments about Allergy UK over the last few weeks - these are very much appreciated.

Our stated vision is that everyone affected by allergy should receive the best possible care and support. We always aim to listen to the allergic community and, where possible, pass on comments and concerns raised to the appropriate organisations, who are often those with influence in diagnosis and treatment.

As a national patient organisation we are in regular contact with the associated clinical societies. In September/October last year we met with the BSACI to discuss, in a proactive way, concerns being raised in relation to the new guideline published on prescribing of adrenaline auto-injectors (AAIs). You may recall that we published a letter in the Journal of Clinical and Experimental Allergy making clear these concerns. I want to reiterate here that we remain fully aligned with the MHRA recommendation and our position has not changed.

We have collated comments made on social media in relation to the recent guideline on peanut and nut allergy which, for some, has re-raised the issues of concern relating to the number of AAIs to be prescribed, as well of the issue of risk assessments, and rural location. We have shared these views with the BSACI, and their response is below.

It seems clear from some of your posts that the BSACI are referring people to us for answers while, at the same time, we are consistently raising your concerns with BSACI so we understand that there seems to be something of a frustrating stalemate. The safety, and appropriate diagnosis and treatment for all patients, is important for all involved and I am afraid that this is, by the nature of the seriousness of allergic disease, inevitably, a long drawn out process. I can understand that it is frustrating not to have more detail on the next level of guideline available yet, but feel reassured to know that a primary care version of the Adrenaline Auto Injector Guidance is currently under development and that we will be consulted on this as a result.

I want to reassure you that we are doing everything we can to ensure your concerns continue to be taken into consideration.

<< Response from BSACI >>

Anaphylaxis treatment should be risk based

The BSACI guideline is evidence-based and it does not specify a blanket number of auto-injectors that any individual should carry. It sets out a risk-based approach, similar to that taken by almost all areas of medicine. Each patient should have a personal risk assessment to understand their level and nature of risk. Their prescription should be based on that. They should then have an individual care plan to reflect and help them manage their risks. Patients who are prescribed auto-injectors should always carry them and they should have proper training in how to use them.

We remain concerned that pushing for two auto-injectors instead of one takes the focus away from the need for many people who are not now carrying an auto-injector to start carrying one. Without it, they are at risk. Our guideline has always been very clear that high-risk patients should carry more than one auto-injector. We would also like to reassure patients on a number of specific concerns that they have raised around the guideline. These are addressed below.

The guideline is encouraging cost-based prescriptions: cost was not a consideration in looking at the clinical needs around anaphylaxis. If anything, we believe putting an auto injector into the hands of everyone that should carry one could mean more auto-injectors will be needed, not less.

The guideline imposes a travel ban: the guideline does not impose a travel ban. Travel is just one of many factors to be considered in an individual risk assessment. It is not a single deciding factor for any patient as the assessment requires specialist input taking all factors into account. In other words, location is built into the prescription, with travel having been considered as part of the risk assessment.

The guideline is not expert or does not take patients into account: this guideline was written by specialists for specialists. As such, it is the most comprehensive study that has been done in this area.  

The methodology used has been accredited by the National Institute of Health and Care Excellence (NICE) and prepared by the BSACI Standards of Care Committee who draw on a rigorous overview of the medical and scientific evidence.  This included consultation with a lay reviewer. The panel that produced the guideline are all allergy specialists who spend their working lives working with patients.

Risk assessments are not happening, and decisions are being taken without risk assessments: the guidance is very clear that prescriptions of auto-injectors should be based on risk assessments being made for each individual patient. This should be supported with training on how to use an auto-injector and an individual plan to minimise or mitigate risk, where possible.

GPs are misinterpreting the guideline: this guideline was produced by experts for experts.  Having developed a specialist guidance we are now working with primary care providers and patient groups and will be producing a specific GP guideline. 

<< End of response >>

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