Select Committee on Health Sixth Report


3  THE CAPACITY OF NHS SERVICES TO MEET DEMAND

Unmet need?

119. The Department accepted the estimated need for allergy care provided in the RCP Report—15 million people in England with allergy, 10 million likely to need treatment in any year, 3 million needing specialist care. We were interested to know what evidence was available on how well need was being met.

120. In oral evidence the Minister told us he believed there was no good evidence of unmet need:

121. To support this contention the Department included the following table of waiting times for Immunology and Allergy collated together in their submission.[125]


122. Dr Ladyman used these figures to suggest to us that "on the evidence we have the service is coping, is absorbing the increase, people are getting the treatment they need within a reasonable period of time".[126] However, information on waiting times for immunology and allergy were collated together; the total number of recorded cases appears well below recognised capacity for allergy alone[127] and, crucially, the patient journey through the system in search of appropriate care was not recognised or recorded.

123. When we asked the witnesses from Allergy UK and the Anaphylaxis Campaign to comment on these figures, they told us these did not correspond with their experience.[128] Muriel Simmons, for Allergy UK, disputed them, and David Reading for the Anaphylaxis Campaign pointed out that even quite short waits could be distressing, especially given the fact that much of the burden of disease was borne by children:

    If a child does have a severe allergy … and there is that anxiety … they are going to find any wait of, say, 12 weeks an absolute nightmare, if a child is believed to be at risk of a fatal reaction. Often the truth is different and manageable, most certainly manageable, but it is only manageable when you have that proper care and proper information and guidance. To wait probably even for more than a month for some of these parents is to them an absolute nightmare. Realistically, the tales we hear are of 11-12 months between the time they first see the GP and when they actually get to see the consultant, and then sometimes there is a wait to get the test results back, so it can be many, many months.[129]

124. The sheer volume of inquiries received by the allergy charities suggests to us that the NHS is not meeting the needs of patients with allergy. The Anaphylaxis Campaign receives 16-20,000 enquiries annually via a telephone helpline, mail or email. The commonest problem they encounter is that patients feel there is a lack of information or understanding of their condition in the NHS. Many of the 140,000 leaflets it sends out each year are to health and education professionals. The Campaign's website records around 4,000 hits per day. Allergy UK reported even more activity. It received around 60,000 requests for assistance in the last year, and the number of people seeking advice had grown on average by 21% in each of the last three years.[130]

125. A strong counter-argument to the case that the Minister made—that lack of pressure within the service suggested that the NHS was coping well with the increase in numbers—came in the evidence from the BSACI. They suggested that rates of referrals for allergy services in areas where there is an inadequate service (which was most places) were not a good guide to patient demand for services for the following reasons:

  • The skill level in primary care will be lowest in areas where there is a paucity of secondary care services. This means that the GP may not be aware that a specialist opinion could benefit their patient and, even if they did recognise this, there would be no one to refer them to.
  • The capacity for seeing new patients is so low that allergy practitioners limit their practice by not advertising the service or by limiting the types of patients seen to the specialist area in which they practise so that a comprehensive service is not provided even though an allergy clinic is stated as being present.
  • Hospital managers under pressure from waiting list targets discourage practitioners from taking on more new referrals than they can see in the time available. In extreme situations this approach can involve closure of the service. Several clinics have closed or cut services in recent years including those in Reading, the Isle of Wight and Liverpool, where full-time allergists who retired were not replaced.[131]

126. The BSACI argued that where a proper service and good local capacity were available, new patient referrals were approximately what one would expect from the estimated patient population with severe allergy:

    For example, in Leicestershire (population one million) 2,000 new patient referrals are made a year with a current waiting time of 13 weeks. In contrast, a single part-time allergy clinic such as the one that serves the South West (population five million) would have a capacity of approximately 250 new patients a year and yet have a similar waiting time. Referral rates and waiting times for new patient appointment do not therefore relate to need but to the level of service provided. A clear example of this is the allergy service in Cambridge which had approximately 500 referrals in 1993 and 5,000 in 2003. This 10-fold increase was due almost entirely to increased awareness of the service by local GPs.[132]

127. Many of these points were buttressed by a wide range of the evidence we received. Our analysis of memoranda from allergy sufferers, annexed to this report, suggests much longer waiting times than those contained in the Department's data. It seems likely that when an allergy patient is referred to a specialist who is not an allergist, and is then referred on, each step in the chain may be within the stipulated Government maximum waiting time, but the total waiting time the patient experiences before receiving effective treatment will be unduly extended. For example, 'Mrs Longworth', a 60-year-old patient in the Addenbrooke's survey, waited in total one year to see the right consultant, having been inappropriately referred in the first place, despite having suffered near fatal anaphylaxis with cardiac arrest following an allergic reaction to drugs used in general anaesthesia.[133]

128. Support for the BSACI view that, where good specialist services were available, local demand was great, came from many memoranda. Dr Jonathan Hourihane, a consultant at Southampton, suggested that, while some referrals came from as far as Wales, Scotland or Sheffield, two-thirds were from the local region and contiguous PCTs traditionally associated with Southampton. He concluded: "This suggests that in Southampton, as in other areas of the United Kingdom that have allergy services, if you build such a service, the local health economy will send their patients to it."[134] Two consultants at Southampton presented disturbing evidence that the Trust's directorate had actively discouraged them from introducing the new national code to record allergy treatment. Dr Hourihane, supported by Professor Warner, told us that on their attempting to introduce the code for services an email had been sent from the Directorate on 26 May 2004 asking them not to introduce the code since "this will automatically send the message that we are delivering a fully supportive service. If we are to develop this, it must be done in the correct manner as a concept paper and a business case, for which there is currently no financial resource available".[135] It should be noted, however, that the Minister regarded this evidence as "unfair". He maintained that an email was generally understood to be an "informal communication" and that Professor Warner should have initiated a "formal exchange of letters" if he disagreed with the policy.[136]

129. Dr Gideon Lack, a consultant in paediatric allergy and immunology, told us that waiting lists rapidly grew in his trust, St Mary's, London, following the build up of three paediatric allergy clinics. But with the waiting list for new appointments exceeding 12 months and with NHS targets becoming a pressure on the Trust it became imperative to bring these down:

    This was done through a series of allergy drives where extra clinics were set up to see more allergy patients. This temporarily decreased the waiting list but each time it climbed back up again. Given that many of our patients were highly complex and required follow-up appointments our follow-up waiting list is up to one year. This is completely unacceptable. Finally we have been forced to only accept GP referrals locally. If a GP from out of area refers to us an appropriate patient with complex allergies we cannot see that patient unless that patient is referred to us through a paediatrician. This creates a further unnecessary additional burden on the NHS in other areas.[137]

130. We note that no reference was made in the Minister's oral evidence to the estimates of need in relation to demand submitted by the NASG (and sent earlier to the Minister). With whatever caveats about the assumptions which had to be made in the absence of hard information, these estimates are a direct attempt to measure a service gap; and they indicate one of worrying size. If provision in the hospital sector can only deal with about 2% of the estimated need, there can be no doubt the service gap, and consequently the inadequacy of patient care, is substantial.

131. A final major problem with the Minister's assertion that Government waiting lists do not support the suggestions of unmet demand lies in serious flaws in the data on which they are based, flaws which the Minister himself acknowledged.

    John Austin: Our witnesses specifically challenged the Department's figures on waiting times and argued that the figures produced are not credible because they largely relate to immunology as well as allergy.

    Dr Ladyman: Yes, exactly.

    John Austin: Also because many of the allergy sufferers are not in there because they are on other waiting lists.

    Dr Ladyman: Yes, and I have acknowledged that and accept that.

    John Austin: You accept that they are fairly meaningless in that sense to assess the extent of allergy?

    Dr Ladyman: I accept that many people being referred for allergies will be being referred, for example, to dermatologists, dieticians or to other people …[138]

132. We asked the Minister whether it would not be sensible to obtain separate figures for allergy and immunology. He told us that this was something the Department would "reflect on" though he thought it was important to bear in mind that any additional data gathering might impose an additional bureaucratic burden on services.[139]

133. The Department did in fact issue a national allergy code to be used for recording the amount of allergy work being carried out within the NHS on 1 April 2004. This is an important step to proper measurement of services being provided and of any service/needs gap. The Minister appeared to be unaware of the introduction of the Code.[140] If the Code is not implemented effectively it will fail to be a valid and useful measure. Once the Code is implemented it will give a measure of work undertaken by specialist allergists. It will, however, remain difficult to measure allergy work undertaken in clinics run by consultants in non-allergy specialties, the majority of current provision for allergies, as this will not be appropriately coded.

134. We recommend that the Department should ensure that the National Code to record allergy services is implemented comprehensively and effectively and that, as the NHS moves allergy care more towards its mainstream, there should be an adequate investment in clinical and operational research into allergy, so that understanding can grow across the service about what this area of care can offer. It is vital that the Department obtains an accurate map of where allergy services are actually being provided so that it can more effectively secure equitable provision, and more realistically gauge current demand on services.

135. Overall, we do not accept Dr Ladyman's thesis that the apparent lack of excessive demand for services indicates that there is no convincing evidence of unmet need. It is not possible for doctors to refer patients to services where none are available. Further, there is no mechanism to measure this unmet need. Patients themselves will often not be aware of specialist services and are often in any case not properly diagnosed. The accounts we have received from hundreds of patients demonstrate the frustration felt by individuals over the difficulties in securing appropriate treatment, and over the lengthy waits and long journeys they are experiencing. The NHS is currently not a national service as far as allergy care is concerned. And even when there is an allergy clinic within reasonable travelling distance, the expressed opinion of the Department appears to be that patients for the most part should be seen elsewhere before a select few are referred on to an allergy specialist. Passing individuals around the system in a way driven by the scarcity of appropriate care is not right. And indeed, as we have noted above, for patients in many parts of the country even being passed on is not a viable possibility without excessively long journey times. It is clear to us that there is a large and growing gap between need and appropriate allergy care within the NHS.

Commissioning and funding of services

136. Much of the evidence we received from health professionals involved in the treatment of patients with allergy related to the ways in which services were funded. A source of concern to a number of our witnesses was the extent to which specialist services for allergy were funded as research institutes, out of budgets for university research, rather than by the NHS. Stephen Durham, Professor of Allergy and Respiratory Medicine at the Royal Brompton and Harefield Trust, told us that only two-elevenths of his post was funded by the NHS. The service he provided was largely supported by clinical research fellows and a specialist research nurse, a situation he described as "clearly unsatisfactory".[141] Professor Warner suggested that if Southampton University's research agenda was to change, the specialist service he offered could "disappear overnight".[142] He told us:

    I am the professor of child health (Southampton), so I am responsible for all paediatrics, not just for allergy immunology. There is no guarantee when I retire that I will be replaced by someone with an interest in allergy immunology; it could be an endocrinologist or a cardiologist.[143]

137. Professor Holgate, for the NASG, noted that 80% of the full-time allergy practitioners were paid for from academic and research salaries and that "they are using their research time to deliver a clinical service", something which he thought was "unacceptable".[144]

138. The Minister recorded his surprise at the suggestion that this was unsatisfactory. His view was that allergy treatment relied heavily on leading-edge scientific research, and that it was thus entirely appropriate that specialists had close connections with research institutions, in a "marriage between the leading research and clinical practice".[145] Addressing the concerns raised by Professor Holgate, the Minister rejected the "unspoken implication" that a service would disappear from an area if a particular university chose to alter its research agenda. Instead, he argued:

    It would be the responsibility of the local Primary Care Trusts working within the framework of the Strategic Health Authority in that area then to say "If that is not going to be there in the future we need to find another service and commission services, so we will recruit another allergy specialist and we will set up another service to replace that."[146]

139. Clear evidence to contradict the Minister's contention that, if an individual specialist service closed down another would be commissioned by PCTs to take its place if there was local demand, came in the submission from Dr Rita Brown. She had run a specialist clinic in the Royal Berkshire Hospital, Reading. This closed down in the year 2000 when she retired, even though it had been seeing over 1,000 patients a year, and had a 12-month waiting list.[147] The consequence was that there was no longer any local provider and patients had to travel long distances to receive treatment. Other evidence we received indicated that the closure of the Reading clinic had boosted the pressure of numbers to attend the clinic in Southampton.[148]

140. Kate Hopkinson and Dr Richard Powell, from the Queen's Medical Centre, Nottingham, reported that their clinic, which had a consultant and two nurse specialists, had received over 60 new allergy referrals a month. The team had been struggling to keep patient waiting times down to an acceptable level. However, a recent application to local PCTs to maintain the service had failed to secure funding and "recommendations were returned to dissolve the allergy service currently provided".[149]

141. Even where specialist commissioners determine there is a need for services, funding does not automatically follow. Professor Adnan Custovic and Dr Andrew Bentley of the North West Lung Centre at the Wythenshawe Hospital, Manchester, told us that the North West Regional Commissioning Group had decided in 2001 to review the current provision of allergy services with a view to determining future provision. This found that:

  • There was no regional allergy service and most patients were not being appropriately identified and treated;
  • There was little or no provision for primary care allergy testing in the community and no community care for people with allergy;
  • There was no full-time allergist-led NHS service provided in the North West;
  • The provision of services in the North West was inadequate as evidenced by the long waiting times of patients referred to the patchy service that did exist;
  • Most patients with allergic disease in the North West never saw an allergist; and
  • Patients and GPs had difficulty in accessing the currently available services and, as a result, desperate patients sought help from non-validated sources.[150]

142. The Specialist Commissioning Group therefore concluded that there was a need to develop a service, and put forward a proposal for setting one up in January 2003. But, to date, "it has proved impossible to persuade local commissioners to provide financial support for the development of the service".[151]

143. Professor Wardlaw, for the BSACI, felt that the current commissioning arrangements were not working well, and that the general ignorance of allergy amongst commissioners underlay the neglect in the provision of services. The NASG had demonstrated the lack of priority accorded to allergy by commissioners by contacting those responsible for commissioning:

    We were given the names by the Department of Health of the 30 PCT leads who are responsible for allergy commissioning and we wrote to all of them some time ago and of the 30 only seven replied, and of those seven, allergy was not a priority for any of them.[152]

144. Even when an allergy service of some kind is available locally (either research funded, or receiving no specific allergy-directed support), local commissioners seem all too often unaware of its existence. Dr Katherine Sloper, a consultant general paediatrician at Ealing Hospital NHS Trust, who runs an allergy clinic, noted:

    The Ealing PCT Commissioning Department was not aware of the unmet or increasing needs for patients locally who have serious allergies. They are now interested in exploring with me how the community and hospital can support each other in developing allergy services, and we will be meeting together to look at these services. The Ealing PCT Commissioning Department has not identified the need for allergy services apart from recognising that some patients were seen in the allergy clinic at St Mary's Hospital. They did not know that there was a local Paediatric Allergy Department. They do not fund any local adult service, and I know from the experience of patients who have asked me about it, that adults have not been able to have any specialist advice.[153]

145. The view of several of those submitting evidence to us was that allergy does not register anywhere in local plans for a majority of commissioners who were more concerned with areas where national targets and priorities had been set. Professor Wardlaw, for the BSACI, articulated this view:

    We have the Department of Health targets with the Cancer Plan and the emphasis on cardiovascular sciences. So what you tend to get is you have a pot of money and there is a lot of horse-trading going on, a lot of emphasis on waiting list targets and that sort of thing … you need strong champions locally to try to press for service development, and again allergy has suffered because there are not any local champions.[154]

146. Dr Ladyman informed us that PCTs were currently developing their Local Delivery Plans for the commissioning of services. He recognised that there was "not the genuine recognition of the needs of allergy sufferers when the last round of Local Delivery Plans were written" but said he "would be very surprised if Primary Care Trusts around the country this summer, when they start sitting down to write their Local Delivery Plans, were not thinking, 'We need to do a bit better for allergy.'"[155] Our evidence makes us far from sanguine that this will be the case. And we find the degree of understatement on the part of the Minister rather alarming. Government policy places the commissioning process as a main driver for change in the NHS. Failure by the commissioners to notice an epidemic on the scale of allergy currently, even when it is being misclassified as other illness (indeed, exactly when it is being so misclassified), suggests that the system is failing allergy sufferers.

147. Difficulties in stimulating local budget holding commissioners were discussed at a meeting between Jon Cruddas MP and the Minister in January 2004.[156] At that time the Minister promised to ask the Chief Medical Officer whether he would be prepared to oversee the development of an "action plan" to guide and support local allergy commissioning. We are not aware of the outcome of the discussions between the Minister and his Chief Medical Officer; but we believe that the development of such a plan would be a helpful step forward.

148. Additionally, more targeted commissioning mechanisms are already available in the NHS. One way to promote change through commissioning, albeit one which would face a number of difficulties, would be for the required regional allergy centres to be commissioned through the specialist commissioning process. Such services are defined by the Department as those that have low patient numbers, and are generally high-cost, requiring a certain critical mass of patients to make treatment cost-effective.[157] The Specialised Service National Definition Set includes 36 such services, one of which is allergy services relating in particular to severe allergic disease and anaphylaxis. [158] Due to the high-cost, low-volume nature of these specialised services, the Department recommends that services within the Definition Set are planned and commissioned for larger areas and populations than is normally the case. For regularly used hospital services, one PCT will normally work with local acute trusts to plan services for the residents of the geographical area for which they are responsible, which are normally coterminous with local authority boundaries. Specialised services are commissioned by regional groups of PCTs for their combined populations (normally over one million people) often with one lead PCT acting on behalf of the others. All PCTs contribute towards the cost of specialist treatment for their pooled area, and therefore some of the financial risk associated with very high-cost unpredictable treatment is spread between the consortium. No additional funding exists for specialised services; funds must be allocated from PCTs' normal budgets, which are based upon the size of their local population. Besides the allocated funds, extra financial resources are often required. Spending on specialised services is currently estimated to be around 10% of PCTs' budgets, or around £4 billion every year.

149. The Manchester case described above, and others, such as Addenbrooke's, where bids for local specialist commissioning failed,[159] or Southampton, illustrate the difficulties in making this process work to establish regional allergy centres covering populations of 6-8 million. There is little or no perception of a problem of unmet need among the local budget holders. And quite a large number of them would need to change their minds, agree to work together and pool resources, to get something off the ground. In reality, there are insurmountable difficulties facing this route to change. The difficulties are structural (the large numbers who would need to combine to provide regional level funding for the key resource/regional centre). They are managerial, with no data on the actual scale of allergy treatment and little incentive to give priority to this area in the face of competing demands. But above all they are caused by a lack of perception that there is a problem and an absence of local leadership. Local champions and clinical leadership are needed to achieve this prerequisite of change.

150. One potentially helpful development is that set prices for allergy services have, from 2004-05, been included in the national tariffs or Health Resource Groups (HRGs) supporting the new Payment by Results system.[160] HRGs should ensure that valid prices for allergy treatment are harmonised across the NHS, enabling PCTs to plan the use of their budgets better in future.

151. The introduction of a national allergy tariff and the allergy code are important steps, as they mean allergy can now be registered in NHS systems. It is clearly necessary to ensure that tariffs are appropriately priced, implemented uniformly across the NHS, and do not introduce financial incentives for particular patterns of referral. The tariff must follow the GP's decision on the patient and not determine where the patient can go.

152. A further, and possibly more direct route to achieve change is through the National Specialist Commissioning Advisory Group (NSCAG), a centralised Departmental body that intervenes in local commissioning arrangements in special circumstances, identifying, funding and contracting specialised services centrally, advising the Secretary of State on commissioner guidelines, and funding the cost of new developments. NSCAG generally becomes involved in the commissioning of services that it has defined as 'Supra Regional' or where there is an overriding economic or clinical justification for national contracting, or where something has gone wrong, or where there is a previously unrecognised need to do something, and to do it quickly. Supra Regional services are those that are very specialised, and are therefore required to be provided in a small number of centres, planned and run on a national basis.

153. Some 32 services are currently designated as 'highly specialist' or 'national'. New services are considered every year. To be considered, a service fitting the NSCAG criteria must:

    … be facing insurmountable problems for which the only workable solution is thought to be designation and central funding. In addition, the application should provide detailed evidence of the reasons why the existing funding mechanisms are unable to accommodate the service and the anticipated consequences if the application is not successful.[161]

154. Additional budgets required to finance newly designated services come from NHS growth money for new services or from levies on all PCTs to cover the costs up to the level of a service already funded within the NHS. If the Department is prepared to recognise the problem and act on it, a mechanism exists to initiate the work on the creation of the specialist centres.

155. Given the serious inequality of access to specialist allergy services, the key role which regional centres would play in turning matters around and the absence of active allergy commissioning locally across the NHS, we believe that there would be merit in the National Specialist Commissioning Advisory Group treating the specialist allergy services as national services, and thus eligible for specific NHS funding. To do this would be to take a first step in the proactive commissioning of allergy services.

156. We further believe that the underlying problem of how to stimulate and inform local PCT commissioners needs also to be addressed. Fortunately, the Minister has already suggested a way forward to begin to do this. We welcome the Minister's suggestion that he should ask the Chief Medical Officer to prepare an action plan and we look forward to its publication which we hope will take account of the conclusions of our report.



124   Q138, 142 Back

125   Waiting Times for 1st Outpatient Appointments (England 4th Quarter 2003/4), Ev 73  Back

126   Q213 Back

127   Q102 Professor Andrew Wardlaw), Q175 Back

128   Qq52-54 Back

129   Q54 Back

130   Ev 3; Ev 1  Back

131   Ev 52  Back

132   Ev 53  Back

133   Ev 33 (Dr Shuaib Nasser) Back

134   Ev 192  Back

135   Ev 192; Q82 Back

136   Q196 Back

137   Ev 125  Back

138   Qq151-53 Back

139   Q154 Back

140   Q194 Back

141   Ev 106  Back

142   Ev 57  Back

143   Q76 Back

144   Q72 Back

145   Q138 Back

146   Q143 Back

147   Ev 158  Back

148   Ev 152 (Professor Anthony J Frew) Back

149   Ev 132  Back

150   Ev 94  Back

151   Ev 94  Back

152   Q86 Back

153   Ev 162  Back

154   Q80 Back

155   Q190 Back

156   Ev 45 (NASG/BSACI) Back

157   Specialised Services definition available from http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/SpecialisedServicesDefinition/fs/en  Back

158   Specialised Services National Definitions Set (2nd Edition) Definition 17 Back

159   Ev 151 (Mr Malcolm Stamp) Back

160   Allergy HRG information available at www.dhgov.uk under "Publications, Policy and Guidance".  Back

161   Health Service Circular 1999/132  Back


 
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