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Immunology and Allergy Services in Scotland

V: THE PATIENT PERSPECTIVE

Introduction

79 It is not always easy to gain an accurate representative patient view on service provision, particularly when part of the service in question includes a spectrum of rare disorders. For
this reason, it was decided that it would be more appropriate to focus attention on the patient perspective in relation to allergy services and services for primary immunodeficiency rather
than for autoimmune disease.

Allergy

80 The Working Group, through its patient representative and the support of the Anaphylaxis Campaign conducted a survey on services in relation to allergy. The overriding conclusion resulting from this survey was that services in Scotland for life-threatening allergic conditions were grossly inadequate. The main themes that emerged from the survey were as follows:

• general reluctance on the part of some general practitioners to take severe allergy seriously

• lack of knowledge about allergy and its management in primary care

• general reluctance to refer to a specialist

• unacceptable waiting times (in some cases due to inappropriate referral)

• inadequate guidance on how to use prescribed medication (in particular, the use of injectable adrenalin)

• few opportunities for follow-up appointments with a specialist

• lack of training for support networks (e.g. family, carers, school staff, first-aiders).

81 The number of people in Scotland with life-threatening allergies appears to be greater than is commonly recognised. For example, since the foundation of the Anaphylaxis Campaign in 1994, some 630 individuals have joined from Scotland with a current active membership of 382 (June 1999). Furthermore, there are 178 people from Scotland who are registered as current members of the British Allergy Foundation. Membership of these and other, similar organisations is likely to be an underestimate of the number of people suffering from these conditions. For example, only 1 out of 12 individuals identified at one Health Centre during the Epipen recall in June 1998 was a member of the Anaphylaxis Campaign.³⁰ In discussions with teachers and parents, it would appear that most schools have at least one child who has peanut allergy.³⁰

82 General practitioner awareness has improved over the past five years but the ability to proffer adequate and helpful advice is still lacking in many instances. At present, it is still not clear which patients should or should not be prescribed injectable adrenalin and practice differs from centre to centre. It is hoped that on-going research will provide an answer to this question in due course.

83 Once it has been decided that a patient needs adrenalin, it is vitally important that he / she receives proper education and training. Patients would welcome informed guidance and training on how to use their prescribed adrenaline or how to manage an anaphylactic reaction. Above all, those with potentially life-threatening conditions would appreciate the opportunity to fast track through the service so that they do not remain "unprotected" for longer than is absolutely necessary.

84 Acute severe allergy is manageable. Many allergy-related deaths that occur are completely avoidable. A regular clinical assessment by the appropriate clinical team would be advisable for people who are at risk of severe reactions, particularly where children are concerned.

Primary Immunodeficiency

85 The Working Group is grateful to the Primary Immunodeficiency Association, (PiA), for the provision of the following information on the patient perspective in relation to primary immunodeficiency.

86 The most important features for patients with primary immunodeficiencies are early diagnosis and ready access to appropriate local management of the condition.

87 General practitioners as a group tend to be unaware of the primary immunodeficiencies and therefore to underestimate the importance of diagnosis. It is all too common for parents (and adult patients) to be told that they are "over-concerned" about the health of their child or their own health. The education of healthcare professionals -general practitioners and specialists from other disciplines - is a priority for the PiA.

88 The provision of home therapy under the control and supervision of an appropriately funded infrastructure, including at the very least, a clinical immunologist and an immunology nurse specialist, is seen as fundamental to the delivery of effective patient management and care.

89 In the case of paediatric care, it is considered essential that there is access to appropriate and recognised paediatric immunology services. Links should be retained with the Supraregional centres in Newcastle and London where the body of knowledge and expertise in the management and treatment of combined immunodeficiencies is focussed.

90 The PiA is in agreement with the recommendations of this report that single-handed practice is contrary to the best interests of efficient adult and paediatric management and care.

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