Allergy services. Still not meeting the unmet need. Report of the Joint Royal College of Physicians and Royal College of Pathologists Working Party

Transcription

1 Allergy servces Stll not meetng the unmet need Report of the Jont Royal College of Physcans and Royal College of Pathologsts Workng Party June 2010

2 The Royal College of Physcans The Royal College of Physcans s a regstered charty that ams to ensure hgh qualty care for patents by promotng the hghest standards of medcal practce. It provdes and sets standards n clncal practce and educaton and tranng, conducts assessments and examnatons, qualty assures external audt programmes, supports doctors n ther practce of medcne, and advses the government, publc and the professon on healthcare ssues. Ctaton for ths document: Royal College of Physcans. Allergy servces: stll not meetng the unmet need. London: RCP, Copyrght All rghts reserved. No part of ths publcaton may be reproduced n any form (ncludng photocopyng or storng t n any medum by electronc means and whether or not transently or ncdentally to some other use of ths publcaton) wthout the wrtten permsson of the copyrght owner. Applcatons for the copyrght owner s permsson to reproduce any part of ths publcaton should be addressed to the publsher. Copyrght Royal College of Physcans 2010 ISBN Royal College of Physcans 11 St Andrews Place Regent s Park London NW1 4LE Regstered Charty No The Royal College of Pathologsts 2 Carlton House Terrace, London SW1Y 5AF Brtsh Socety for Allergy & Clncal Immunology Ellot House, Allngton Street, London SW1E 5EH Typeset by Dan-Set Graphcs, Telford, Shropshre Royal College of Physcans All rghts reserved.

3 Contents Members of the Commttee Foreword Acknowledgements and conflcts of nterest v v v 1 Executve summary 1 2 Allergy servces: a survey 6 3 Evdence of progress aganst key recommendatons 11 Allergy centres 11 Professonal educaton 34 Research and product development 37 Food 40 Schoolchldren 43 4 Evdence of progress aganst further recommendatons 44 Montorng allergy 44 The ar we breathe 46 Schoolchldren 47 Workforce 50 Informaton for consumers 51 Advce for people wth allerges 54 Evaluaton of complementary technques 58 References 61 Royal College of Physcans All rghts reserved.

4 Members of the Commttee Baroness Ilora Fnlay (Char), House of Lords Select Commttee on Allergy Professor Barry Kay (Vce-char), specalst advser to House of Lords nqury on allergy, Dr Bll Egner (Secretary), Brtsh Socety for Immunology Dr Paul Cullnan, Faculty of Occupatonal Medcne Dr Pam Ewan, Natonal Allergy Strategy Group Dr Adam Fox, Brtsh Paedatrc Allergy, Immunology and Infecton Group Professor Davd Gawkrodger, Brtsh Assocaton of Dermatologsts Dr Ngel Harper, Royal College of Anaesthetsts Dr Rchard Herrot, Royal College of Pathologsts Jont Commttee on Immunology and Allergy Professor Stephen Holgate, Royal College of Physcans Mrs Suze Hughes, Char of the Patent and Carer Network Commttee Dr Susan Leech, Royal College of Paedatrcs and Chld Health Dr Glens Scaddng, Brtsh Socety for Allergy and Clncal Immunology Professor Azz Shekh, Royal College of General Practtoners Dr Jasmeet Soar, char, Anaphylaxs Workng Group, Resusctaton Councl UK Professor Andrew Wardlaw, Brtsh Thoracc Socety Professor John Warner, Royal College of Paedatrcs and Chld Health Patent and Carer Network Commttee Members Mrs Suze Hughes (Char), Royal College of Physcans Patent and Carer Network member Margaret Cox, Natonal Eczema Socety Mandy East, Natonal Allergy Strategy Group Lesley Fudge, Latex Allergy Support Group Hazel Gowland, Allergy Acton Aleks Knay, char, Latex Allergy Support Group Andrew Langford, Skn Care Campagn Ms Jules Payne, Allergy UK Lynne Regent, The Anaphylaxs Campagn Anne-Cecle Vlle, Royal College of Physcans Workng Party admnstrator v Royal College of Physcans All rghts reserved.

5 Foreword Ths report gves an update on changes to allergy servce provson followng the 2007 report of the House of Lords (HoL) Scence and Technology Commttee s nqury nto allergy. A jont Workng Party of the Royal College of Physcans (RCP) and Royal College of Pathologsts (RCPath), supported by the Brtsh Socety for Allergy and Clncal Immunology (BSACI) was establshed n May 2009, wth a remt to collate evdence of progress n mplementng the HoL commttee s recommendatons. We were keen to ensure full engagement of patent socetes n order to collate ther vews, and to solct feedback on changes to the experence of patents who are usng the servces. The report focuses on development n England and Wales but, where relevant, we utlse evdence from Scotland. The recommendatons of the HoL report are gven, followed by the progress update relatng to the recommendatons. Evdence from the Department of Health (DH) n November 2009 provdes an update to the government s response to the House of Lords Scence and Technology Commttee Report on Allergy 6th Report of Sesson (Cm 7255), and coordnates the responses of 20 contrbutors. In 2008, the DH called for a strategc health authorty (SHA) to plot mprovements n allergy servces, wth a vew to rollng them out natonally f successful. A small amount of fundng was awarded to the North West Strategc Health Authorty (NWSHA) for ths purpose. Notably, however, some other regons have made progress wthout targeted fundng or drectons to commssoners, such as n Wessex, north and south London, Yorkshre, East and West Mdlands, and Northern Ireland. We comment on the plans of the NWSHA plot project aganst the recommendatons, but we have not formally evaluated the plot; ths s the responsblty of the DH. Many UK consultants n allergc dsease have come nto the feld through a varety of specalty tranng routes. Some had no formal tranng n allergy, but have developed current tranng programmes. They are on the specalst regster of ther parent specalty, and some are recorded as allergsts. We therefore use the term allergy specalst to cover those expert senor doctors who work prncpally wth patents wth allergc dsease, mantan ther contnung professonal development, and research n allergc dsease. The fnancal future for the health servce s currently uncertan, and very dfferent from the clmate n whch the orgnal HoL report was wrtten. Servces lke allergy, whch have been chroncally under-resourced and under-suppled n the UK compared wth the rest of Europe, are especally vulnerable and must be protected. Overall, we conclude that leadershp s essental for allergy servces to develop and to begn to attan the level of servce that s avalable n most of Western Europe. Ths leadershp needs to be at regonal level, wherever possble, although more local leadershp s also requred. Ths leadershp should come from clncans whose work revolves around allergc dsease. Ths wll then allow educaton and tranng ntatves to develop and foster research, especally translatonal research n academc centres wthn the regon. The full evdence s avalable as a PDF appendx to the report. Royal College of Physcans All rghts reserved. v

6 Acknowledgements We are grateful to the Royal College of Physcans and the Royal College of Pathologsts for ther support n establshng the commttee, and to the Brtsh Socety for Allergy and Clncal Immunology, who provded addtonal fundng for the commttee secretarat to be provded by the Royal College of Physcans. We also recognse the mportant nput from the Royal College of General Practtoners and the Royal College of Paedatrcs and Chld Health. We recognse the mportance of the patent expertse n managng allergy, and we are grateful to all those patent groups who contrbuted through the Patent and Carer Network Commttee that we establshed, so ably chared by Suze Hughes. Members of ths group were from: Allergy Acton, Allergy UK, The Anaphylaxs Campagn, Asthma UK, Latex Allergy Support Group, The Natonal Allergy Strategy Group, the Natonal Eczema Socety, and Skn Care Campagn. We are grateful to the Royal College of Physcans for admnstratve support. We are partcularly grateful to Dr Bll Egner for hs treless work n collatng all the materal for the commttee, and for hs work on ths report. Conflcts of nterest Dr Bll Egner s also Drector of the UK Natonal External Qualty Assessment Servce (UKNEQAS) for Immunology, Allergy and Immunochemstry. v Royal College of Physcans All rghts reserved.

7 1 Executve summary Recommendatons for acton Ths report recommends that further actons are needed from the Department of Health (DH), prmary care trusts (PCT), local health boards (LHB), strategc health authorty (SHA) commssoners, provders of allergy servces, and patents, n order to provde cost-effectve mprovements n allergy care, despte the current fundng crss. We emphasse the need for better allergy servces and more allergy specalsts (whch has not yet been addressed), but also the mportance of ensurng that all exstng servces are dentfed and supported n the nterm, by enhanced nteracton wth allergy specalsts. We hghlght the depth of commtment from managers, physcans and nurses, to the provson of better care for patents wth allergc dsease, and the untapped well of support and nput whch can be provded by patent organsatons to enhance exstng care and to desgn servce mprovements. We hghlght the real practcal dffcultes n engagng multple provders and commssoners on a servce mprovement project whch lacks approprate drvers, such as DH drecton/ facltaton or ncorporaton nto Qualty and Outcomes Frameworks (QOF). We recommend that the DH desgnate a sngle lead SHA, actng as a natonal resource to collate and coordnate the mproved networkng and servce evaluaton of all the regonal allergy servces and networks. We recommend that each SHA should ensure that PCTs support ntatves to mprove allergy care n collaboraton wth local hosptals, to mprove the provson of care closer to home, and to support ther general practtoners, consultants and nurses n delverng the best possble care n the most effectve way. The House of Lords (HoL) model of multdscplnary allergy servces, led by allergy specalsts, remans the recommended model, adapted to local crcumstances. Local ntatves to work towards ths should be supported. We hghlght how far the ndvdual ntatves devate from the deal recommendatons of the HoL report, and the lack of valdated outcome measures or servce accredtaton standards whch would allow mproved measurement of the need and the qualty of servces provded. Intatves from the Jont Commttee on Immunology and Allergy of the medcal royal colleges, as well as other professonal socetes and servces, have ntatves to develop such measures and standards, and to share protocols and good practce. Further development and valdaton of these ntatves should be supported. We emphasse the key role of professonal leadershp from physcans, professonal organsatons and medcal royal colleges n developng such mechansms to evaluate servce qualty and supportng mproved servce provson. We recommend that ths group reconvene n 2 3 years to ensure progress. Royal College of Physcans All rghts reserved. 1

8 Allergy servces Conclusons The fnancal future for the health servce s set to be very dfferent from the clmate n whch the HoL report was wrtten. A specalty lke allergy, whch s currently under-resourced and under-suppled, s especally vulnerable and must be protected. The qualty of exstng patent servces n allergy can be mproved by expandng allergy specalst leadershp. Progress aganst the recommendatons of the HoL report has been notable n several areas: The wthdrawal of napproprate detary advce to pregnant women has occurred. There has been wdespread adopton of projects by the Natonal Insttute for Health and Clncal Excellence (NICE) for short gudelnes on dagnoss and assessment (but not management) of food allergy n chldren and venom mmunotherapy. There s ongong, f lmted, development of paedatrc care pathways. There has been a small attempt to address the lack of traned allergy specalsts (resultng from ntatves pror to the HoL report), through an addtonal fve allergy and fve mmunology medcal tranng posts. However, ths has not addressed the long-term successon plannng and manpower problems, snce ths totals only 12 adult and three paedatrc UK allergy tranees. A plot allergy centre n the North West regon has been establshed, but: Ths s n the early stages and the governance and evaluaton strateges reman to be developed. The fnal phase of evaluaton should take place when the servce has had tme to be frmly establshed. The North West centre model devates from the HoL model n some respects, as t appears to be a loose network rather than a clusterng of servces n a managed clncal network wth clear leadershp n allergy. Lmted numbers of new appontments have occurred. There s no fundng to montor the outcomes effectvely. For many other recommendatons, progress has been slow and non-exstent: The appontment of allergy specalsts to lead multdscplnary teams n each SHA has been nsuffcent to meet the clncal need and tranng requrements of other healthcare professonals. An allergy specalst wth a clear remt to lead effectve networkng of servces should be empowered to nstgate change across each regonal cluster of servces by colleagues, PCTs and trusts. A desgnated clncal lead role should be developed. Improvement and ratonalsaton of useful and non-defensve food labellng has not been adopted. Lack of relable NHS data on servces or workload and nadequate codng perssts. Patent engagement remans underutlsed and should be strengthened. Ths should be mproved both at local level wth servce provders, and at a regonal level for networks, PCTs and SHAs, ncludng the natonal lead SHA. 2 Royal College of Physcans All rghts reserved.

9 1 Executve summary There has been lttle progress on mprovng governance and tranng n the management of allergc dsease n prmary and non-specalst servces, or n the clncal governance of complementary practce. Evaluaton of mmunotherapy for nhaled allergens by NICE has not occurred. Two areas have fallen outsde the remt of ths commttee: Provson of generc adrenalne auto-njector prescrptons n schools requres a change n legslaton. Evaluaton of complementary and alternatve therapy has been n part addressed n a House of Commons Scence Commttee Evdence Check on Homeopathy, whch reported n February Some optmsaton of exstng servces and clusterng of specalst servces s evdent. Around the UK, some changes have occurred to make best use of exstng servces by allergy specalsts and other specaltes. A consderable wll to mprove specalst allergy care exsts across multdscplnary boundares, partcularly n dermatology, mmunology, otolaryngology, respratory medcne, and paedatrcs. The few specalsts n occupatonal allergc dsease, although motvated, are often workng outsde the NHS; manageral and fnancal constrants have mpeded multdscplnary nteracton. SHAs must take a lead to ensure that these networks evolve, nteract and strengthen, and ths process could be guded and enhanced by the appontment of a sngle lead SHA. Areas of concern Fundng agreements for servces as lad out by PCTs and LHBs often have an unclear framework; the qualty of commssonng needs mprovng to ensure that the qualty of servces s enhanced and clncal leadershp strengthened, as envsaged by Lord Darz. 2 Some pont of care allergy tests are napproprate. PCTs and LHBs, through ther pharmacy offcer, must ensure that communty pharmacy allergy testng s ncluded n clncal governance processes, wth clear accountablty, qualty assurance of tranng and servce delvery, and development of approprate expertse. Such tests should be externally qualty assured for both dagnostc methodology and the nterpretaton of results. There s lttle mprovement on the ground perceved by patents or professonal groups. A repeat survey of GPs reported no mprovement n access to specalst servce provson. 3,4 Ths lack of progress s partly due to: slow mplementaton of the HoL recommendatons lack of nvestment n allergy servces nadequate networkng and lone workng there s evdence of solated subspecalty practce n allergy whch s rpe for mprovement a lack of the crtcal mass of staff (both specalst and non-specalst) to delver the objectves by mprovng servce effcacy lttle access to and underutlsaton of mmunotherapy, wth wde geographc varatons. Royal College of Physcans All rghts reserved. 3

10 Allergy servces The qualty and effcency agenda can be supported by smarter workng, despte the ncreasngly devolved NHS and the paucty of specalsts to provde clncal leadershp. Ths could enhance qualty usng multdscplnary resources and mproved networkng, but needs clear leadershp from allergy specalsts. Clusterng of servces (some are n the early stages) should be progressed where centres are currently mpractcal. The NHS can nvest to save by appontng a lead consultant allergy specalst to mprove cost-effectve servce provson and enhance qualty. Ths wll: lay the foundatons for appontment of allergy specalsts n each SHA to provde leadershp across a geographcal area create a managed clncal network ensure care meets agreed natonal best practce standards enhance sharng of good practce mprove and accredt allergy educaton mprove cost-effcacy facltate mplementaton of care pathways/care bundles mprove audt of patent outcomes and satsfacton wth care enable servce accredtaton to montor and enhance the standard of care encourage leadershp and dentfy subspecalty servce champons facltate effectve engagement wth patent groups facltate proper codng, accurate workload and qualty of servce data enable more effectve specalsed commssonng. NHS Evdence, responsble for e-learnng, should consder provdng tranng packages n allergy for GPs and nurses n prmary and communty care, ncludng school nurses. Model of servce confguraton We concluded that no one model should be mposed over others. However, some core prncples must be n place to ensure equty of access to specalst servces across the UK, n order to reduce mortalty and morbdty by accurate dagnoss and approprate management of allergy, partcularly n complex mult-system manfestatons. These core prncples nclude: clear clncal leadershp for allergy servces across a defned geographcal area clusterng of specalst servces to serve a defned populaton explct fundng agreements for allergy servces that encompass the need to: develop patent pathways from prmary to secondary care provde local advce and educaton to other servces n prmary and secondary care mprove mmunotherapy servces 4 Royal College of Physcans All rghts reserved.

11 1 Executve summary share protocols and gudelnes at a natonal level wth other provders engage wth patent groups to plan and evaluate servces code ther actvty for contract montorng and for clncal audt work wthn an agreed governance framework mantan the team s contnung professonal development, focused on allergy be regstered and accredted through an approprate mechansm. SHAs must communcate together about the allergy servces n place, to ensure that there s access to approprate referral servces for complex condtons, such as adverse reactons to anaesthetc agents. Concluson Progress to mprove allergy servces to patents wll be optmsed by havng a cohesve group whch represents all aspects of allergy and mmunology, empowered to take the strategy forward both natonally and locally. Ths group must have clear leadershp and clarty of purpose, and must work across hstorc specalty/professonal boundares. Royal College of Physcans All rghts reserved. 5

12 2 Allergy servces: a survey Allergy servces survey va the professonal socetes A standardsed survey was nstgated by the commttee and crculated to: respratory physcans; mmunologsts; allergsts; anaesthetsts; occupatonal health physcans; ear, nose and throat (ENT) physcans and surgeons; paedatrcans and dermatologsts, to determne how much allergy actvty s currently beng undertaken. Many servces deal wth a lmted range of allergc dsorders. Servces provded by ENT surgeons relate manly to rhnts, and 50% have no allergy tranng. Respratory servces relate prmarly to asthma, and dermatology to eczema, angoedema, contact dermatts and urtcara. Clncal tme spent delverng allergy servces was typcally 80% for a paedatrc allergst, 100% for an adult allergst, and between 5 and 70% for other specaltes. The tables show that specalsts are nadequate n number and avalable tme to devote to allergy, but there s a potental for exstng servces to network better to enhance servce qualty, led by an allergy specalst. No current mechansms exst to evaluate servce qualty aganst agreed crtera. The data do not dstngush centres where multple specalsts work together n the same servce. Thus, addng up the number of stes wll overestmate servce provson. Networks There s evdence of many local educatonal actvtes, but lttle evdence of sharng of expertse, or of coordnaton. Several groups expressed an nterest n, or potental for developng nto a HoL cluster, but resource mplcatons were hghlghted. Patent nvolvement appears rare. At least 10 exstng networks were dentfed whch nclude or focus on allergc dseases: Trent Immunology and Allergy Consortum (TRIAC) West Mdlands Allergy Group South East Immunology Network Wessex Allergy Network South West Group South Yorkshre and Yorkshre Paedatrc Network Allergy Nurse Specalsts n Eastern Regon London Allergy Group London Paedatrc Allergy Group Paedatrc Allergy Group North London wth a base at St Mary s Hosptal (part of Imperal College Healthcare NHS Trust). 6 Royal College of Physcans All rghts reserved.

13 2 Allergy servces: a survey Table 1 England and Wales: consultants/stes provdng adult servces Number of stes Consultants Number of wth unselected wth centres Networked Mult- Jont clncs Man Number of Number of allergy clncs as per subspecalty codng as wth dscplnary between specalty hosptal stes consultants NSSDS for allergy* clncs allergy 317 others workng specaltes** Allergy >10 >4 Immunology Dermatology ENT Occupatonal 3 allergy Respratory medcne * Self-reported provson of general allergy servces coverng the breadth of condtons n Natonal Specalst Servces defntons set 17 for allergy. Self-reported provson of an allergy clnc focused on a very lmted range of allergc dsease, eg rhnts, anaesthetc allergy. Self-reported presence of a multdscplnary team consstng of specalst nurse/detcans/gp clncal assstants or other healthcare workers. Self-reported partcpaton n regular educatonal or allergy/mmunology servce network meetngs. ** Two or more specaltes conductng a jont clnc at the same tme n the same place focusng on an aspect of allergc dsease (usually subspecalty). Royal College of Physcans All rghts reserved. 7

14 Allergy servces Table 2 England and Wales: consultants/stes provdng paedatrc servces Number of stes Consultants Number of wth unselected wth centres Networked Mult- Jont clncs Man Number of Number of allergy clncs as per subspecalty codng as wth dscplnary between specalty hosptal stes consultants NSSDS for allergy* clncs allergy 317 others workng specaltes** Paedatrc >7 allergsts Immunology Dermatology 104 ENT Respratory medcne * Self-reported provson of general allergy servces coverng the breadth of condtons n Natonal Specalst Servces defntons set 17 for allergy. Self-reported provson of an allergy clnc focused on a very lmted range of allergc dsease, eg rhnts, anaesthetc allergy. Self-reported presence of a multdscplnary team consstng of specalst nurse/detcans/gp clncal assstants or other healthcare workers. Self-reported partcpaton n regular educatonal or allergy/mmunology servce network meetngs. ** Two or more specaltes conductng a jont clnc at the same tme n the same place focusng on an aspect of allergc dsease (usually subspecalty). 10/20 paedatrc allergsts are n London; 16/20 spend >80% of workng tme on allergy. 8 Royal College of Physcans All rghts reserved.

15 2 Allergy survces: a survey These networks vared n ther stage of development, sze, and the tme snce they were nstgated. Some have ether establshed, or are workng towards, gudelnes on patent pathways wthn secondary care and gudance for prmary care, shared educaton, research, audt and qualty manuals. Most nvolve adult mmunologsts and allergsts, or are paedatrcan-led; some have wdened ther network to nclude other specaltes and healthcare dscplnes, ncludng nursng and detetcs (eg TRIAC). The BSACI dentfed ntatves n exstng centres and networks, at the Royal Natonal Throat, Nose and Ear Hosptal; Imperal College London Healthcare NHS Trust; Guy s and St Thomas Hosptal; and allergy servces n Devon and Cornwall. Immunotherapy Although sales fgures are dffcult to nterpret, the two major manufacturers of mmunotherapeutc products dd not report sgnfcant ncreases n people usng subcutaneous mmunotherapy (SCIT). There was, however, some evdence that sublngual mmunotherapes (SLIT) are now beng used. There are now an estmated 2,000 patents on each treatment modalty annually, compared wth very few on sublngual therapy n PCTs are stll unwllng to fund mmunotherapy. There are also wde varatons n access to ths treatment; chldren at specalst centres have better access than those seen elsewhere. Contractng for servces Foundaton trusts, acute trusts, SHAs n England, and trusts and LHBs n Wales were contacted to ascertan the local provson of allergy servces. A total of 39% of trusts n England and Wales responded; 23% provde n-house allergy servces (mostly very lmted) and 16% reported access to a referral servce elsewhere. However, only 7% of PCTs n England and 33% of LHBs n Wales responded. Few trusts, PCTs or SHAs seemed to be clear about what a specalst allergy servce should comprse, and few recognsed how lmted ther provson actually s. Many centres wth known allergy specalsts provded no reply at all. Codng of servce actvty Data from the company Dr Foster do not dentfy many known centres wth large allergy workloads, and demonstrate that few clncs appear to be codng for allergy actvty (mssng large servces n Plymouth, Brstol, Sheffeld, Newcastle and Manchester). All datasets are lkely to be erroneous, ncomplete and potentally msleadng, wthout trangulaton between multple data sources. In most, but not all, major allergst-led centres, allergy-coded actvty seems to be collected (Guy s, Cambrdge, Imperal, Royal Free, Lecester, Lverpool and Southampton). Conclusons There s lttle evdence that specalst servces have substantally ncreased, and no evdence of ncreased resources avalable to them. A wde gap between need and provson thus remans. There s no evdence of a substantal ncrease n allergy specalsts to provde leadershp, but clear evdence of a desre to ncorporate them when avalable. There Royal College of Physcans All rghts reserved. 9

16 Allergy servces has been a small ncrease n consultant allergsts, more n paedatrc allergy than adult servces, but more are needed, wth a better geographcal spread across England and Wales. There s evdence that some networks and centres have taken local ntatves to meet partally the recommendatons of the HoL report, partcularly wth regard to networkng and protocols. These should be shared. A sgnfcant number of clncans, across multple specaltes n England and Wales, professed an nterest n management of allerges and dedcate some tme to allergy: Most subspecalty clncs are run by clncans who do not have allergy as ther prmary focus. Codng nformaton on actvty s hghly naccurate outsde major allergy centres, and would beneft from natonal benchmarkng. There s clearly room for enhanced networkng of all consultants workng n allergy, and for mproved codng: Subspecalty clncs should partcpate n networks led by an allergy specalst; most declared an nterest beng nvolved n such a managed network and clusterng of servces. We would encourage local and natonal networkng as an obvous step to facltate effectve use of exstng resources and mprovement n qualty to meet agreed natonal standards of care. A varety of sources of nformaton on actvty and servces do not correspond: Trangulaton of databases from the Brtsh Socety for Immunology (BSI), BSACI, our survey and the responses from trusts and PCTs reveal a lack of valdated nformaton, wth ncomplete and nconsstent data. The absence of consstent and accurate data from dfferent sources makes us queston the accuracy of other data sources used for NHS plannng. There appear to be serous defcences n commssoners knowledge of: the allergy needs of ther local populaton what an allergy servce should provde whether ths s provded locally. Better patent nvolvement may mprove these defcts. 10 Royal College of Physcans All rghts reserved.

17 3 Evdence of progress aganst key recommendatons Allergy centres Recommendaton 10.1 We recommend that at least one allergy centre, led by a full-tme allergy specalst, should be establshed n each strategc health authorty. These centres would act as clusters of expertse of those wth an nterest n allergy, and should each contan a chest physcan, dermatologst, ENT specalst, clncal mmunologst, gastroenterologst, occupatonal health practtoner and paedatrcan. Specalst nurses and detcans traned n allergy would also be core team members. Evdence from the DH and the NWSHA plot The DH has apponted the NWSHA as the lead strategc health authorty for allergy, and they are plotng a novel approach to delverng allergy care. The NWSHA plot reported many laudable ams. There was also consderable evdence of effectve and energetc support from the North West commssonng team, who had prortsed allergy n the top nne works programmes of the North West Strategc Commssonng Group. The project bulds on a 2003 framework, whch suggested three centres, but was unfunded. Its man objectves nclude: servce reconfguraton aspratons to workng smarter and mprovng capacty buldng on exstng expertse dentfyng servce gaps mplementng better demand management developng outreach nurses and GPs wth a specal nterest (GPswS) development of outcome measures. The NWSHA publc engagement ntatve showed a number of thngs: 72% of patents want to be seen by a specalst. >50% want that servce to be local. Workload has almost doubled snce 2005, to over 6,000 referrals. The emphass was on ensurng approprate use of lmted resources. Royal College of Physcans All rghts reserved. 11

18 Allergy servces The am was to provde ntegrated, equtable, hgh-qualty, clncally effectve allergy and clncal mmunology servces for chldren and adults across the NWSHA. There was an aspraton to ensure that the rght patent gets the rght treatment delvered by the rght clncal team at the rght place and at the rght cost, wth patent nvolvement. Ther vson for the regonal servce s a vrtual allergy centre : Specalst-led centres would act as hubs, leadng the managed clncal network. Allergy centres would be lnked, formng the a vrtual allergy centre. Consultants workng wthn a vrtual network refer patents to colleagues wth expertse n relevant areas. Common audt and standard operatng procedures would be developed to lnk servces together. To date, efforts have concentrated on the stablsaton of specalst allergy servces for more complex patents. Plans exst to ncrease the sklls base, capablty and capacty n prmary and secondary care (but these may come unstuck due to lack of PCT support, and appontment of sutable canddates to key posts). Care closer to home Equty and access to servces closer to home should be mproved. The proposals buld on specalst clncal allergy n exstng centres: South Manchester: respratory Lverpool: mmunotherapy Preston: ENT Central Manchester: anaesthetc allergy Salford: dermatology. Leadershp The NWSHA plot should be overseen by a strategy board chared by a PCT chef executve. It wll meet from Jan/Feb 2010 on a bmonthly bass, wth current workng groups evolvng nto mplementaton groups. However, ths has not yet begun. Progress The man progress reported so far ncluded: over 1 mllon of addtonal pump prmng nvestment from PCTs n the North West n 2 years, to support servce mprovement clncal evaluaton study commenced (the DH funded 80,000) 12 Royal College of Physcans All rghts reserved.

19 3 Progress aganst key recommendatons desgnaton of ter 2b paedatrc allergy centres (early 2010) dedcated project support (the DH funded 120,000 over 2 years) engagement of a PCT chef executve lead. However, there reman substantal obstacles to progress, as noted below. Aspratons Aspratons for the future report nclude: network prortes for 2010 of educaton, tranng and promoton of referral pathways managed servce provson between the dfferent centres the educaton of physcans, nurses and general practtoners (2010 onwards) mproved lnks wth local PCTs and local hosptals (2010 onwards) workng wth dfferent dscplnes and professons (2010) developng and renforcng regonal patent pathways and engagng the publc n ther development (2010 onwards) developng and testng locally agreed tarffs for evaluaton (2010/11 and 2011/12) developng standard operatng procedures and protocols (2010/11) makng the best use of sklls, money, equpment and accommodaton developng qualty assurance processes (from 2010). Obstacles Several substantal obstacles to progress were dentfed: competton wth other PCT must-dos absence of allergy n Qualty and Outcomes Framework (QOF) and prmary care regulaton e Care Qualty Commsson drvers are absent lack of avalable workforce/fundng no benchmark for comparson (poor qualty data) lack of outcome measures lmted or no addtonal fundng from 2010/11 locally agreed tarff yet to be developed a major uncontrolled rsk development of management plans, gudance for prmary care, effectve crossboundary referral mechansms, communty pharmacst protocols, consensus qualty standards, regonal patent pathways enhanced detetc servces enhanced very specalsed servces for the regon Royal College of Physcans All rghts reserved. 13

20 Allergy servces qualty assurance of allergy testng especally wth near patent testng possble outreach role for nurse specalsts falure to use GPswSI through lack of PCT support resourcng of ncreased educaton for supportng prmary care lack of competency assessments and tranng frameworks. Specalst paedatrc allergy servces n the North West The North West vson of paedatrc allergy s specalst-drected networkng and tranng of prmary, secondary and tertary healthcare workers to provde effcent and effectve servce for patents close to home. As much as 410,000 of enhanced servce needs had been dentfed, wth one extra specalst allergst for each centre, two extra nurses, between two and four paedatrcans wth an nterest, a part-tme detcan, and admnstratve support. Challenges for the paedatrc servce Fundng for two specalst nurses and admnstratve staff ( ) has not yet been secured. A further challenge s provded by the fact that development of consensus nformaton and gudelnes has been agreed by all ters of the network and s based on the latest evdence. Occupatonal health At ths stage, no formal occupatonal allergy practtoner servce has been ncluded. Staffng Locally funded appontments have been made as follows: a full-tme (adult) consultant allergst at the Unversty Hosptal of South Manchester NHS Foundaton Trust (UHSM) full-tme paedatrc appontments n Manchester and Lverpool an addtonal adult mmunologst n Salford. Ths amounts to sgnfcantly fewer than the estmated need of 12 appontments based on the assessment of some of the professonal and patent socetes. Snce the whole project s dependent on local sources of fundng, and the majorty of allergy care s to be provded closer to home or n prmary care (n complance wth general NHS polcy), t s very worryng that clncans n the North West reported that: We have not been able to engage the North West PCTs at all. Vrtually no PCTs came to the engagement event that the NWSCT put together about a year nto the process. Of the four PCTs asked to underpn the overheads assocated wth hosptal-funded outreach nurse care postons, one declned, one eventually decded they couldn t rsk supportng t, and for a thrd there s tentatve agreement. The fourth s watng to see what happens. 14 Royal College of Physcans All rghts reserved.

21 3 Progress aganst key recommendatons We have someone (a GPwSI) n tranng, but have not found a PCT that wll host hm. Hs own PCT s not nterested n hm extendng hs role there. There s also concern about the long-term sustanablty about all these arrangements, even f the obvous ntal barrers are overcome. Evdence from professonal groups and medcal royal colleges The North West plot servce reconfguraton s not yet fully worked through. Concerns were expressed about ongong slo workng and reluctance to ntegrate servces fully. There was evdence that many of the ntal dfferences between professonal groups had been resolved and there was evdence of a common purpose. Resstance to change may make t dffcult for the plot to be replcated n other regons. Ther soluton may not work for all regons, even f successful. There was evdence of networkng ntatves across the country (see Chapter 2) but lttle evdence of ntegraton or sharng of ntatves. The BSACI reported some success n expandng servces n London, and aspratonal developments n the South West. It restated ts commtment to the development of at least one allergst-led allergy centre staffed by consultants n adult and paedatrc allergy n every regon. It reported that exstng allergy centres need to be strengthened, especally where academc centres were operatng on chartable and research grant fundng. Evdence from patent groups Patent nvolvement was slow and relatvely late n nstgaton, but s now underway. Patent-led evaluaton s not establshed across most of the UK. Lack of ntal nvolvement has now been rectfed, to the beneft of both partes. It was felt that the North West plot model may not work for all regons. Concerns were expressed that the model dffers from that proposed by the Natonal Allergy Strategy Group (NASG), whch has been supported by the patent groups. The Anaphylaxs Campagn (AC) reported that the number of stes offerng allergy clncs s slghtly hgher than the 94 dentfed to the HoL Commttee by the BSACI. An allergy centre (as envsaged by the report) has not been establshed n each of the 10 SHAs, or n the three Welsh Health Authortes. The AC beleved that many patents who are looked after by consultants from other specaltes may be mssng out on accurate dagnoss, mportant management and ongong advce and care. The BSACI, Allergy UK (AUK), the Allergy Allance (AA) and the AC emphassed that: Patents had reported many complants about exstng servces, from lack of knowledge to a lack of all round care and/or management. Royal College of Physcans All rghts reserved. 15

22 Allergy servces Patents want access to specalst-led centres, correct and accurate dagnoss, the provson of ongong management of condtons and tranng for other physcans. Patents felt that havng a specalst centre would ultmately mprove patents lves and save the NHS money. It remans unclear how best to collect patent experences; electronc means should be developed. Patent-related outcomes measurng (PROMS) and long-term outcomes and follow up are needed. It was essental to present the patent perspectve to PCTs, especally where there was a debate about who should be responsble for ongong care and management. The NASG vewed the North West plot as a small response to a large problem, and reported that, n ther vew: Leadershp from a consultant wth wde experence and expertse n allergy was essental. An adequate number of adult and paedatrc allergsts were needed to develop a centre. Staff and servces need tme to develop. The NASG beleve that the North West plot wll need sx adult and sx paedatrc consultants to operate effcently. There s a serous lack of fundng. No central fundng for the clncal servces has been provded, and developments rely on local fundng. Thus, sustanablty s a concern. The lack of up-front fundng, combned wth tmes of fnancal restrant, means that development wll nevtably be dffcult and slow. There must be a holstc approach to the patent and famly. There should be an ntegrated care network patents want hgh-level care n ther local communty, wth a clear transton pathway for young people to follow as they transfer from paedatrc to adult servces. The NASG beleve that montorng and evaluaton are essental f the plot s to be of use n developng smlar networks elsewhere, but that t s too early to evaluate the centre. The project has the potental to develop a better understandng of the fundamentals of a successful allergy servce. The NASG wll contnue to work wth the NWSHA va the NWSCT to help develop a servce whch can best serve patents locally, and eventually, to be evaluated effectvely. The NASG beleve there needs to be a long term approach to the development of a centre that can grow and be sustaned for the future. The Skn Care Campagn (SCC) reported that t was: not aware of many mprovements at all n servce provson snce the publcaton of the HoL report, and have been dsapponted n the laborous development n the North West, whch would undoubtedly have benefted from approprate fundng from the DH and the appontment of consultant allergsts 16 Royal College of Physcans All rghts reserved.

23 3 Progress aganst key recommendatons concerned about the lack of ntegraton and recognton for servces already provded by dermatologsts throughout the country clear about the need for the full and equtable ncluson of patents, patent organsatons and allergy chartes n the development of reports, gudelnes and servce developments. Conclusons The model that the HoL commttee orgnally conceved was a cluster of servces. In the HoL report, the term centre was used to represent such a clusterng of servces to brng together people wth an nterest n allergy for the beneft of patent servces. The latest report from the DH supports that approach. Paedatrc servces must be consdered ntegral to effectve allergy servce provson. A sngle plot ste has been ntated but s n the early stages: Governance and evaluaton structures are stll n evoluton, but could be mproved. We recommend that a clncal leader s empowered by the network to brng about the necessary change to allergy servces n the North West. A PCT CEO has been apponted as a champon, but meetngs have yet to start, and a desgnated professonal leader across the North West s urgently requred. The planned servce only meets some of the recommendatons of the HoL report, but remans to be tested n practce, and does not meet the orgnal expectatons of a centre staffed and led by multple consultant specalsts n allergy. Many of the reasons for ths relate to factors outsde the control of the North West project. Patent groups and some professonals fear t wll not meet ther expectatons: Inequtes n access to servce were dentfed but not all were easly rectfed, partcularly n the north of the network, n Preston and Lancashre. There are dffcultes n developng or accessng relable NHS data on allergy, and there are no current outcome measures n place these are urgently needed. Intatves, protocols, gudelnes and resources n the North West should be shared wth other networks (and vce versa) to make best use of exstng expertse and avod duplcaton of effort. Whle there was much commendable work from specalst commssonng teams and trusts, there was evdence of a lack of support from PCTs, wth no PCT yet to commt to support, and several apparently havng declned: Patent nvolvement n servce desgn and PCT nteracton should be strengthened. A shared vson, a commtment to cooperaton, and good workng relatons between managers and clncans, trusts and PCTs s essental. Royal College of Physcans All rghts reserved. 17

24 Allergy servces We also note that: Attenton and fundng should be drected to parts of the country where servces are less than adequate. Exstng large tertary centres on a sngle ste may not be the best way forward or the most cost-effectve model for many parts of the country. Shortage of specalst allergsts may be a lmtng factor n rapd centre development. Therefore local ntatves and networkng to work smarter and make best use of exstng resources are a potental way of layng the foundatons for future development of specalst allergst-led hubs: There s much unconnected actvty whch could be better utlsed through networkng. Professonal solaton should be reduced through partcpaton n networks. Dagnostc laboratores need to be closely lnked to clncal servces and taken nto account by commssoners when developng servces. What consttutes a model of good practce for one regon may not meet the needs of other regons or buld on exstng expertse; there s a need for clearly defned models of good practce to promote standardsaton of servces and a need for an accredtaton process. Qualty assurance (QA) for clncal allergy servces and the role of accredtaton need to be consdered and developed to mprove qualty of care: The QA mechansm should consder ncorporatng regular audt, protocols and gudelnes, montored tranng and competency, publcly avalable dashboards wth regard to servce qualty. The Jont Commttee for Clncal Immunology and Allergy (JCIA) accredtaton scheme should be supported and developed and must be open to all who practce allergy, ncludng paedatrc allergy. Servces should be accredted where such a mechansm exsts. Servce mappng must be mproved, and ths s best acheved by desgnatng a lead SHA to amalgamate and trangulate all the exstng dsparate data sources. 18 Royal College of Physcans All rghts reserved.

25 3 Progress aganst key recommendatons Recommendaton 10.2 Each allergy centre should provde the dagnostc facltes necessary to nvestgate complex allerges, and should ensure that those who perform these tests have receved accredted allergy tranng. Parallel clncs could avod the need for multple referrals and separate vsts to hosptal for those wth mult-system allergc dsease. Regular multdscplnary team meetngs wll ensure that knowledge s shared and complex cases dscussed. Ths places the needs of the patent frst, allowng rapd accurate dagnoss that nforms comprehensve patent management plans. The ncluson of paedatrc allergsts wthn allergy centres wll ensure that chldren wth allergc condtons are treated approprately, and wll enable a smooth transton from paedatrc to adult allergy care. Evdence from the DH and the NWSHA plot In the NWSHA plot, multdscplnary servces comprsng a number of specalsts wll develop agreed patent pathways to nvestgate and manage very specalsed/complex allergy problems, buldng on exstng specalst expertse. Examples nclude contact dermatts, refractory chronc dopathc urtcara, mmunotherapy for multple allergens, and nvestgaton of anaesthetc and vaccne reactons. The Unversty of Lverpool has also started a study to dentfy patents beng treated for allergy by other specaltes (not coded as allergy but seen n respratory, ENT and general paedatrc clncs). Ter 2b paedatrc allergy centres wll run regular jont allergy clncs wth a general paedatrcan wth an nterest n allergy and a vstng paedatrc allergy specalst on a monthly bass. It s also envsaged that general paedatrcans wth an nterest wll vst the tertary centre at regular ntervals to develop and mantan ther knowledge and sklls n the management of more complex allergy, workng to agreed protocols/standard operatng procedures. Rapd access asthma and allergy clncs have been runnng successfully for over 4 years, led by the advanced nurse practtoner at Alder Hey Chldren s Hosptal for chldren presentng to A&E wth acute exacerbaton of asthma or after an acute allergc reacton. Evdence from professonal groups and medcal royal colleges Lttle jont workng for those wth severe allergc dsease s seen around the UK, although other dsease groups, such as cancer, have shown beneft n patent outcomes from closer workng and establshng one-stop ponts of consultaton. St Mary s Hosptal/Imperal College and Guy s and St Thomas Trusts have regular transton clncs for young people wth allergy, and Imperal College wll appont another consultant to lead ths. Other centres are explorng the possblty of transton clncs. The BSACI supports mproved servces for complex allergy, but feel that dagnostc facltes for complex allergc problems, eg drug allergy, have not mproved. The Royal College of Paedatrcs and Chld Health (RCPCH) has a workng group now developng sx care pathways for chldren wth anaphylaxs, asthma/rhnts, eczema, urtcara, venom/ Royal College of Physcans All rghts reserved. 19

26 Allergy servces drug/latex and food allergy, and has appled to the DH for fundng to evaluate mplementaton of the frst three of these. Evdence from patent groups The AC s aware of no progress snce the publcaton of the HoL report. The lack of ntegrated workng between specalsts leaves much of the UK devod of access to allergy expertse, wth a knock-on effect that there s no focus for GP educaton. The SCC expects all servces to put the needs of the patent frst, and would expect a dermatologst to be a part of any allergy multdscplnary team led by an expert consultant allergst wth holstc expertse, supported by other specaltes. Conclusons All PCTs should commsson and mplement patent pathways for allergc dsease from those specalsts that encounter patents wth allergy: Such pathways should specfy the lead clncan to ensure that nterdscplnary collaboraton s mantaned, and should nclude referral routes from prmary care and from emergency departments. It may be most effcent to adopt shared exstng pathways for local or natonal use. Achevng adequate numbers of allergy specalsts n the short/medum term s unlkely, due to a shortage of tranng posts and lack of fundng. The best use of exstng expertse s requred from the exstng cadre of allergy specalsts to develop leadershp for all networks and servces: Many specalsts are asprng to plug the gap n the nterm, and many are provdng leadershp n ther own areas of expertse. Flexble and creatve thnkng s needed to make best use of exstng resources. The majorty of care s undertaken by those not specalsng n allergy. They need access to advce and support from specalsts n allergc dsease and ts manfestatons. Patent groups, the BSACI and NASG all agree that a centre cannot be successful wthout leadershp from allergy specalsts. Valdated PROMs are needed f the success of any model of allergy servce provson s to be assessed. A common complant from patents s that they want holstc care, and feel that they cannot acheve ths outsde of a centre led by a specalst. All clncans should be able to provde care that takes nto the account the needs and aspratons of the patent and ther demand for access to a hghqualty effcent servce, and servces should be structured accordngly. 20 Royal College of Physcans All rghts reserved.