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Immunology and Allergy Services in Scotland

III PROVISION OF ADULT SERVICES IN SCOTLAND

Introduction

30 This chapter reviews the present provision of services in Scotland. A short section detailing service provision in England and Wales is included for comparative purposes. Key deficiencies in total service provision are identified and a number of recommendations are made for their improvement. A separate chapter describes the provision of services for children.

A: Outline of Service Provision in the Four Scottish Centres

31 Table I - sets out the service provision in each of the four Scottish Centres which are based in Aberdeen, Dundee, Edinburgh and Glasgow. Tables II and III set out the staffing levels and the activity and waiting times respectively. Table IV gives an indication of the workload of the immunology laboratories.

Histocompatibility and Immunogenetics [formerly Tissue Typing]:

32 Human leukocyte antigen (HLA) typing and cross-matching required in support of solid organ transplantation takes place primarily in Glasgow and Edinburgh, as shown in Table V which sets out the activity figures for transplantation for 1998.

33 Although liver transplantation is undertaken in Edinburgh, there are no demands made on Histocompatibility and Immunogenetics (H & I) services in support of this. HLA Typing and H & I support for allogeneic bone marrow transplantation takes place primarily in Glasgow and, to a lesser extent, in Edinburgh. Most of this activity takes place with regard to adults and exclusively with regard to children. In addition to Glasgow and Edinburgh there are smaller H&I laboratories located in regional Blood Transfusion centres in Aberdeen, Carluke and Dundee. These undertake small volumes of solid organ-related work or HLA typing of volunteers for unrelated Bone Marrow Transplantation.

34 The laboratories in Glasgow and Edinburgh are both headed up by the Consultant Immunologists who also head up the Immunology and Immunopathology laboratories.

B: Service Provision Outwith the Four Scottish Centres

35 Laboratories outwith the four centres which provide immunology testing at a significant level (mainly CPA approved laboratories) are listed at Appendix III.

C: Provision of Services in the Community

Allergy:

36 The vast majority of clinical allergy diagnosis and management is straight forward and appropriately takes place in primary care without referral to secondary care physicians. The main conditions treated are "hay fever", perennial allergic rhinitis, asthma and various dermatological conditions including atopic eczema and urticaria. However, all patients suspected of suffering from peanut allergy and all cases of food allergy and drug allergy resistant to standard treatment should be referred to a consultant allergist or immunologist.¹²

Primary Immunodeficiency:

37 The diagnosis of primary immunodeficiency is not really appropriate in the community setting. Accurate diagnosis, assessment of complications and planning of treatment is very much a specialist matter requiring input from a consultant immunologist with very good laboratory support. In some parts of Scotland, patients with primary immunodeficiency are being managed by organ-based specialists because of a lack of access to consultant immunologists. Care can often be given in the community, however, through home IVIg therapy providing there is excellent co-operation and collaboration between primary, secondary and tertiary specialists.

Autoimmune Disease:

38 Many autoimmune conditions can now be diagnosed in primary care. This may prevent unnecessary referral to hospital or lead to more appropriate referral if indicated.

D: Alternative Approaches to Health Care

39 A wide range of currently non-orthodox, -complementary and / or alternative medicine, (CAM), -approaches to health problems in general, and allergy in particular, are available. Over the last 10-15 years increasing numbers of general practitioners and hospital specialists have integrated CAM into their orthodox care which forms a part of the current spectrum of treatments already available to patients with allergy. Over the last 10 years, the National Centre at Glasgow Homeopathic Hospital has offered training to at least foundation level to enable general practitioners to obtain the licentiate of the Faculty of Homoeopathy (LFHom). This foundation training specifically includes the use of homeopathic allergen desensitisation, as well as other therapeutic options which may be employed to help allergy sufferers. Post-training research has established that 78% of attenders at the course continue to use homoeopathy in their NHS patient care two years later.¹³ Homoeopathy has been subject to some controlled clinical trials^14,15 and there have also been a number of randomised double blind placebo controlled trials of homeopathic allergen desensitisation with positive results.^16,17

40 Homoeopathy forms a major part of a range of services provided within the NHS in Scotland by and through Glasgow Homeopathic Hospital. The foundation for this care is orthodox medicine, expanded to include some of the major CAM therapies for which specific evidence exists, with a strong emphasis on psychosomatic medicine and the clinical application of psychoneuroimmunology. A diverse range of patients with allergies is being seen. They are allocated to a range of services according to their complexity and individual needs. These include:

• Regional specialist network clinics, in several Health Boards, where a doctor with specialist training in homoeopathy provides outpatient care.

• Out-patient hospital services in Glasgow and Livingston. These services are receiving in excess of 250 referrals per month but are currently only able to offer care to around 180. A substantial number of these patients require treatment for allergy-related conditions.
  There is therefore a large and growing waiting list of over 3,000 patients.

• A specialised allergy clinic at the Glasgow Homeopathic Hospital.

• A national service from the in-patient unit at the Glasgow Homeopathic Hospital employing conventional and CAM approaches to patient care.

E: Provision of Services in England and Wales

41 There are currently 25 centres in England and Wales (7 in London and 18 outside London) that provide immunology services to the National Health Service. Most of these centres are based in teaching hospitals. Most of the services provide a clinical referral service (mainly out-patients), and a specialist laboratory service with clinical interpretation of results.³

42 In parallel with Scotland, the UK Parliament recognises that service provision is patchy and it is concerned about the present level of services available for the treatment of allergies in the NHS. Senior officials from the Department of Health are in discussion with the relevant professional and patient representative bodies about possible future action on allergy services in England.¹⁸

43 Table VI shows the number of consultants and nursing staff working for the most part in immunology across the UK.

44 Obtaining accurate data on the number of consultants working in allergy across the UK is problematic. Although there has been a substantial increase in the number of "allergy" clinics in recent years, these new clinics are not run by trained allergists but usually by organ-based specialists with an interest in allergy. This means that they are not dedicated allergy clinics in the strict sense of the term and often provide a service in only limited areas of allergy. This underlines the serious need for the development of proper allergy services run by trained allergists working in allergy on a full-time basis.

45 Table VII shows the number of consultants working in allergy across the UK. This is broken down into trained allergists, paediatricians, immunologists and organ-based specialists.

Key Deficiencies in Service Provision and Recommendations for Improvement

Clinical Services

46 There are concerns throughout the UK, in particular, Scotland, about the lack of provision within the NHS for the delivery of expert specialist primary immune deficiency and allergy services including, the more complex and severe forms of allergy.^19,20,21

47 The main concerns over service provision are out-patient waiting times, the difficulty of accessing specialist advice in the interpretation of complex histories, (e.g. evaluation of the role of allergy in polysymptomatic illness and in non-specific complaints, and the lack of availability of specialist staff to manage complex cases and provide specialist therapeutic services, particularly allergen desensitisation).

48 In Scotland, some areas have no local access to consultant immunologists. All existing consultant immunologists work single-handed which means that there are no fallback measures when cover is required. Expansion of consultant immunological posts is essential to meet clinical need.

49 In order to redress the balance, the Group recommends that a plan should be established to increase the number of consultant immunology posts in Scotland.

50 Since no Consultant Immunologist / Allergist should work single-handed at any one site, there should be, at minimum, one Consultant Immunologist and one Consultant Allergist in each of the four major centres in Scotland OR two Consultant Immunologists (one of whom, at the very least, must be able to devote a substantial proportion of working time to the practice of allergy) in each of the four major centres in Scotland. These arrangements should take into account the additional need for new paediatric immunology and allergy specialists (see Chapter IV) and for consultant input into departments in district general hospitals where a significant amount of clinical or laboratory immunology work is undertaken.

51 Advance planning should be put in place in terms of training in order to allow for expansion of consultant staff.

52 In 1994, the Royal Colleges of Physicians and Pathologists set standards for the provision of allergy services in the UK.²² The Working Group attaches importance to this document because it represents a sound first attempt to establish a uniform set of standards for service provision. Extracts from these standards are summarised in Appendix IV. The Working Group would wish to reiterate certain of the recommendations within the body of this report, in particular, those which relate specifically to the need for nursing, dietetic and administrative support and the need for appropriately equipped out-patient facilities staffed by experienced personnel. The Group would also reiterate the need for flexibility at local level to allow access to beds for in-patient management.

53 The need for allergen desensitisation services has already been noted and should be developed along with the structure for the clinical and laboratory services.^23,24,25 Part of the spectrum of services should include desensitisation programmes which must be available at all four Scottish centres. Where allergen desensitisation services are offered, resuscitation equipment, together with staff who are properly trained in its use, should be mandatory.

54 NHS Management Executive Letter 1999 (10), issued in February 1999,²⁶ provided guidance to the Service on setting up Managed Clinical Networks within the NHS in Scotland. These networks are defined as "linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing professional and Health Board boundaries, to ensure equitable provision of high quality clinically effective services throughout Scotland". The concept, originally set out in the report of the Acute Services Review,²⁷ is ideally suited to underpin the principles enshrined in this report. To this end, it is recommended that a series of Managed Clinical Networks be established for both adults and children with immunological and allergic conditions to ensure that all the threads of the service are drawn together as effectively as possible.

55 Self-infusion of immunoglobulin (home therapy) is widely available south of the border but, in most cases, unavailable in Scotland. Home-based self-infusion of immunoglobulin is beneficial to the patient insofar as it avoids travel to hospital and time off work or school.⁹ It has also been shown to be much less expensive than hospital-based infusions. NHS Trusts should make arrangements for suitable patients with antibody deficiency to be trained and monitored at a recognised Home Therapy Centre. [Draft Standards and Requirements for Home IVIg Therapy are reproduced at Appendix V].

56 The Working Group endorses the guidelines produced by the Royal Colleges of Pathologists and Physicians in conjunction with the Primary Immunodeficiency Association for the diagnosis and management of patients with primary antibody deficiencies.⁹ A summary of these guidelines is reproduced in Appendix VI.

Laboratory Services:

57 With regard to laboratory services, it is recommended that laboratories offering significant levels of immunology testing should be fully equipped and resourced to meet the needs of the service and that they should be externally accredited with Clinical Pathology Accreditation (UK) Ltd. or an equivalent accreditation body.

58 Continuing problems in relation to the recruitment, training and retention of Medical Laboratory Scientific Officers in Immunology and other laboratory settings are currently being addressed by a separate SMASAC Working Group and recommendations will be published shortly.

Provision and Availability of Information:

59 Existing services are not capable of being responsive to patients and do not ensure equity of access to all those with allergic conditions. General practitioners need to know where services for allergy exist so that they can refer their patients to the appropriate specialist clinic. At present, it is often not clear to the referring practitioner just who has an interest in allergy-related conditions. Even where a specialist service is available, it is often poorly publicised.

60 Appropriate voluntary organisations should be encouraged to work in conjunction with the NHS in Scotland to produce a comprehensive guide to allergy services. This guide should be made available to general practitioners and hospital-based clinicians as a matter of urgency. The information could be provided in electronic form on Scottish Health on the Web with publicity about its existence sent to all primary and secondary care providers. Such a guide could also inform clinicians as to when alternative / complementary therapies could be useful. In this way, information could easily be updated in what is likely to be an evolving clinical area.

61 The Group endorses the work of voluntary organisations such as the Anaphylaxis Campaign and the British Allergy Foundation for bringing about greater public awareness and understanding of severe forms of allergy. The latter, for example, plays a major role in improving the practice of allergy in Primary Care through its Masterclasses in Allergies, GP training fellowships and MSc in Allergy.

62 Given the nature of certain immunological conditions, there is evidence that patients are under-diagnosed and managed sub-optimally.¹¹ This can lead to unnecessary morbidity and complex management problems. Guidance on diagnosis needs to be made available at regular intervals to general practitioners and hospital-based clinicians to ensure that they are kept aware of a condition which, in all probability, they may never see in their lifetime.

63 The Working Group endorses the work of the Primary Immunodeficiency Association which undertakes a valuable role in providing general practitioners and the public with regular information to promote awareness of primary immunodeficiency. [A poster setting out the 10 warning signs of primary immunodeficiency is shown at Appendix VII and may be reproduced for use by general practitioners providing the source is fully acknowledged]. Within the NHS in Scotland, provision of information to the public should be made available at national level by the Health Education Board for Scotland and at local level by Health Promotion Departments.

64 A formal application should be made to the Scottish Intercollegiate Guidelines Network, (SIGN), by relevant clinicians for an appropriate multidisciplinary team to develop guidance on the management of Primary Immune Deficiency and patients with life-threatening allergic conditions, such as anaphylaxis.

Data Collection:

65 As a general point in respect of all allergic and immunological conditions, it is difficult to access accurate and up to date immunological laboratory workload statistics. This has been an area of contention for many years. Statistics collected nationally must facilitate clinical care, planning, monitoring and research, and take account of benchmarking.

66 It is recommended that the Information and Statistics Division, (ISD), in consultation with providers of immunology services should develop a system for the on-going collection of accurate laboratory immunology statistics. This should include sufficient detail of staffing, test numbers and test types to allow meaningful comparison between individual laboratory departments and between the Health Board populations served.

67 Furthermore, it is recommended that ISD should develop an accurate system for the collection of patient workload statistics, including waiting times, in conjunction with Consultant Immunologists and Consultant Allergists.

68 Without accurate data, it is very difficult to get a true picture of the nature and extent of immunological and allergic disorders in the Scottish population. A UK-wide registry, based in Leeds, gives an indication of the prevalence of primary immune deficiency disorders but the Scottish entries require to be verified and updated. It is therefore recommended that resources should be made available to ISD to assist Consultant Immunologists to verify existing Scottish entries to the Leeds registry and update it where appropriate.

69 Given the numbers involved and the wide-ranging conditions that it would cover, it would be impracticable to set up a registry for allergic disorders. Nonetheless, the Group sees some merit in setting up a registry for the more severe forms of allergy. To this end, it is recommended that ISD in conjunction with Consultant Immunologists and Consultant Allergists should also explore the possibility of establishing a Scottish registry for severe forms of allergy, such as anaphylaxis.

Alternative Approaches to Health Care:

70 The range of CAM approaches to health care outwith the NHS spans from unregulated, self-styled specialists, making use of highly questionable approaches without credible scientific evidence to developed and established systems which have been subject to controlled trials and proper observational studies.²⁸ This whole issue requires substantial research and evaluation.

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