Select Committee on Science and Technology Minutes of Evidence

Additional information from Mrs Gini Williams

  10.  Can you describe a whole systems approach in relation to the control of tuberculosis; are there any general lessons that can be learned from this for surveillance of other diseases?

  This paper aims to describe how a whole systems approach might be beneficial in the fight against tuberculosis (TB) as well as making suggestions as to how this could be achieved.


Changing the focus from the disease to the patient

  In TB control there has been a tendency to focus on the immediate biomedical aspects of the disease and its management. Doctors, nurses, microbiologists and consultants of communicable disease control (CCDCs) are seen as the key individuals involved with other medical departments (eg genito-urinary medicine and paediatrics) and external organisations (eg housing and social services) being regarded to a greater or lesser extent as peripheral.

  This is hardly surprising due to the public health imperative to control the disease, which can be most effectively achieved by finding and treating active cases. Since we have had a cure for TB, control efforts have had a predominantly biomedical focus, the assumption being that once diagnosed with TB every patient will take the treatment prescribed.

  This system works well for people who can easily access health care but, with the rising levels of TB, it is becoming apparent that a significant number of patients have difficulties accessing services for diagnosis and/or treatment. If we fail to address the broader problems that many TB patients face, such as homelessness, loss of work, drug or alcohol addiction and so on, we will not be successful in controlling the disease.

Addressing fragmentation of services

  Issues relating to fragmentation of services and inconsistent approaches, which have been developing in different areas (see previous evidence) need to be addressed. Services need to be equitable as well as locally appropriate. A whole systems approach would bring together the relevant organisations to make sure that effective and sustainable approaches were developed according to each local situation.

  A "system", in the context of whole systems working, can be seen as ". . . something that assembles itself around a shared meaning or purpose" or more generally as ". . . `a perceived whole whose essential properties arise from the relationships between its parts'" (Pratt et al, 1999:xiv). Whole systems working tends to be adaptable as it concentrates on connections, relationships and meaning in contrast to a mechanical approach which focuses on design and control mechanisms (Pratt et al, 1999). Adaptability is essential in an environment, which is constantly changing from the organisation of public services to the make up of the client group.

Health policy and commissioning

  There has been a growing emphasis on partnership working and collaboration in health care policy over the last few years and a number of local planning processes have been developed in order to achieve it: for example joint investment plans, locality health and social care partnership boards, health improvement and modernisation programmes and so on. Primary care trusts are now responsible for commissioning services for TB care and control and have themselves been developing local mechanisms for partnership working.

  In summary, a whole systems approach would have a great deal to offer TB control efforts for a number of reasons:

    1.  It would enable costs to be shared by a number of organisations and services.

    2.  Public services are required to work in partnership with lay people and other organisations.

    3.  There is a growing recognition that many people with TB need more than the offer of medication in order to make a full recovery.

    4.  TB is increasing and will continue to do so if we continue to approach it as we have done so far.

    5.  TB control requires a sustained long term effort as has been demonstrated in New York and other parts of the world.

    6.  The system to control TB must be adaptable both in terms of what it does and the way it works to respond to ongoing changes appropriately.


  In order to demonstrate what a whole systems approach to TB control would look like it is necessary to first appreciate what the system is trying to achieve. Over the years in working in different parts of the system I have been developing what I see as a patient-centred model for TB control (figure 1). The model aims to demonstrate how the essential elements of TB control work together to maintain the necessary standardised approach to treatment and monitoring, while offering individualised patient-centred care.

  Case finding and patient holding are identified as the two key elements of TB control and management and are presented in a cyclical format. This is due to the fact that (a) cases are constantly being found, prompting further screening; and (b) patients' needs may change while they are on treatment and so regular evaluation is required. If there is weakness at any point there will be a risk of losing potential or actual cases. It is therefore essential to ensure that each element is as strong as the other. Emphasis on any one of the elements and a lack of attention to another will lead to a failure in the system.


  Rather than attempt to describe the entire system, I will give examples of how the principles of whole systems working can be applied at each stage highlighted in the model (figure 1). On the whole it is about taking a fresh approach to finding solutions. Thinking carefully about who is or could be involved at each stage will enable us to see who is involved in the system as a whole.

  It must be noted that this model is itself within a much wider framework of efforts to fight poverty and reduce inequality. It is clear that the majority of patients are from the poorest parts of society both in the UK and worldwide. Efforts to control TB on the ground will inevitably be hampered by poverty and deprivation so policies to address these in the UK as well as in the rest of the world will also help to reduce the overall incidence of poverty-related diseases such as TB, AIDS and malaria.



  Notification of all cases of TB is a legal requirement. It is vital for initiating contact tracing and for gathering information for epidemiological purposes and service provision. Notification of infectious diseases is statutorily the doctor's responsibility, however, the fact that the TB nurse aims to provide care to all TB patients from the time they are diagnosed, gives them the ideal opportunity to organise notification of TB. There is evidence to suggest that this improves the rate of notification (Pym et al, 1995) especially where cases are being diagnosed in departments other than respiratory medicine eg genito-urinary medicine, renal, paediatrics etc.

  In some, more often, lower incidence areas, TB nurses or health visitors rely on the notification process to find out about local cases, before they become involved in the care and initiate contact tracing. As well as producing in accurate epidemiology, under-notification can lead to patients being denied access to care and contact screening not taking place. Contacts of known cases of TB are at the highest risk of developing TB and additional cases can be missed if screening does not take place.

  At the time of notification, additional information is collected in the form of enhanced surveillance, which provides valuable data on trends associated with TB. The data are largely demographic and disease-related and only clinical outcomes are assessed. Routine collection of socio-economic data would assist in both planning services, which can respond appropriately to a wider range of patients' needs, and implementing more carefully targeted screening programmes.

    —  Key Points: Appropriate systems are needed to collect relevant information, with clearly identified responsibilities for all those involved in diagnosing and treating TB (inside and outside the NHS).


  The screening of high-risk groups is an important way of finding previously unknown cases of TB in the community. These cases can then be treated promptly and further contact tracing can be initiated. Screening is organised according to a person's risk of exposure to TB.

Contact tracing

  Contacts of known infectious cases are the most likely to have been infected and/or to have developed active disease. Their level of risk will vary according to the amount of exposure and their general state of health. It has previously been shown that 10 per cent of tuberculosis cases have been identified through contact tracing (Kumar et al, 1992, Ormerod 1993). Contact tracing of children is also particularly important as they are vulnerable to more serious forms of TB, such as TB meningitis and miliary TB. Paediatricians may need to be consulted to read paediatric chest x-rays and manage treatment.

  In sputum smear positive index cases, the aim is to investigate household, occupational and social contacts. In smear negative cases and children with non-pulmonary TB, only household contacts may be investigated. Almost without exception, contact tracing will be the responsibility of the local TB services. Good collaboration between services is needed when contacts live over a large geographical area. If a different approach to contact tracing is practiced in different areas, there may be duplication or omission and cases may be missed. Apart from this, mixed messages may be given to people attending different services for their screening.

Screening of other high risk groups

  While contact tracing identifies specific individuals who are known to have been exposed to TB, the screening of other people considered to be at risk, relies on the identification of groups or communities where TB is known to be more common. Their risk can be exacerbated by poor general health and lack of access to health care facilities. This relies on routinely collected data to identify high risk groups and target screening effectively. Having identified who needs screening, it is then essential to work out how best to organise it.

  In the past, the recommendation to screen all new entrants to the UK from countries of high incidence has been very difficult to implement due to the fact that information provided to the chest clinics is often out of date by the time an invitation is sent. Uptake is often very low and time is wasted looking for people who have already moved on. As a result there is now a great variety between services as to who is offered screening and how it is done. Different methods are being evaluated, for instance, in Hackney, there is a study looking into screening on registration with a GP practice and in Newham, there has been a screening project running in collaboration with the asylum team. It is likely that a number of different approaches will be needed in all areas in order to be effective.

  The planned acquisition of a mobile digital x-ray unit, such as those commonly used in Holland, will provide an opportunity to carry out targeted mass screening in a relatively quick, cheap and acceptable manner. It will be available to implement screening in prisons, homeless hostels, and so on all over London, if not further afield. It will also be available for one-off mass contact screening in a potential outbreak situation.

  In order for any screening activities to function properly, they have to be fully integrated with existing services. That is, there has to be a process for planning where and when screening will take place with the collaboration of local TB services as well as the institutions involved. Any screening requires collaboration between numerous partners. Screening initiatives require detailed preparation and publicity beforehand, and continued commitment to following up suspected and confirmed cases identified during the screening. Everyone involved needs to understand their responsibility before, during and after screening has taken place.

School screening

  Mass tuberculin skin testing continues to be carried out when children are offered their routine BCG in school. Children who have a strong tuberculin reaction are referred to the local chest clinic. They may have been previously vaccinated or alternatively they may have been exposed to TB and require preventive therapy. They are sent for a chest x-ray and depending on the result and the presence or absence of symptoms, they are either started on full treatment or are given preventive therapy. They should then be followed-up regularly by the TB nurses in collaboration, if necessary with the school nurse.

Occupational health

  The role of occupational health departments, particularly in higher education and organisations recruiting from overseas is becoming ever more important to TB control. There should be good links between occupational health departments and TB services in order to ensure that adequate screening is performed and appropriate action is taken when TB is suspected. This is particularly true of health care providers from hospitals to community trusts. This is required to protect both staff and patients and prevent outbreaks.

    —  Key Points: Contact screening procedures should be consistent with good communication between centres, to enable the appropriate management of contacts, if necessary, across a large geographical area.

    —  Any type of mass screening must be properly planned (in terms of publicity, process and follow up) and integrated with the local TB service.


  Passive case finding relies on people's general level of awareness of TB symptoms, having somewhere to go for the necessary help and the appropriate action being taken. Good communication with GPs and organisations working with groups such as the homeless and refugees is essential in order for potential TB cases to be recognised, referred and investigated quickly. The earlier a case of TB is found the less likely it is to be infectious and the more successful (in terms of lasting damage to the lung and other body tissues) it is to treat.

  The highest risk groups often have the poorest access to both passive and active screening so a network of linked organisations is required to give appropriate guidance to people needing help. Good access to primary care which can respond appropriately to patients presenting with TB symptoms is essential to effective TB control. A number of chest clinics provide the facility for the immediate referral of suspect cases picked-up in screening projects, by GPs, by themselves and so on. This can significantly cut down on delays in diagnosis thereby reducing the length of time a patient may be infectious.

  Although most attention is paid to groups with the highest risk of contracting TB, it is vital to guard against delayed diagnoses in lower risk groups. The latest outbreaks have occurred in these groups ie where TB has been least expected. There needs to be a minimum level of awareness in primary care and local network of community, voluntary and statutory organisations in order to avoid this.

Awareness raising

  In order that the service is used appropriately, it is necessary for TB service staff to act as a resource, providing advice and information, on the telephone as well as delivering talks to staff, students, refugee groups, the homeless and organisations working with people who may be at higher risk of suffering from TB. In this way more people can be alerted more promptly to potential cases and can react appropriately. It is also a way of making the service more accessible to people who would otherwise be suspicious and to feel apprehensive about attending for screening.

    —  Key Point: Primary care staff and other key local partners must be regularly updated on TB and the service available locally.


  Prompt diagnosis is essential to controlling TB in the community. Achieving it, relies on an appropriate index of suspicion, knowledge of appropriate tests and local referral procedures as well as good diagnostic services. It is recommended that physicians and nurses with appropriate training and experience manage TB and this can only be achieved if there is good networking across different specialities. As with many other diseases, there is a need for specialists to manage the particular challenges associated with TB but people working in related specialities play a vital role in recognising and diagnosing this disease.

  Local diagnostic services including microbiology, radiology and histology are all essential to the prompt diagnosis of TB. There needs to be good communication between these and the TB services with provision for the rapid feedback of results. This is essential for a number of reasons. Firstly, it allows for patients to start treatment as soon as possible rendering them non-infectious and reducing the opportunity for further transmission. Secondly, it informs decisions regarding infection control ie whether a patient should remain isolated or not. If not, it is important that the information is fed back as soon as possible to the ward in order to "release" the patient and free up the side room. Thirdly, patients, who are under investigation for TB can be very anxious and it is important that they receive rapid feedback regarding their results. External reference laboratories are also essential for the identification of drug resistant cases.

  Diagnosis can become complicated if it involves different institutions, for instance, when a case is suspected within the prison service. Not only does there have to be equally good communication with the local diagnostic services, the mobility of prisoners both in and out of community and between different prisons requires careful management. It is essential to have a clear process for tracking potential and actual cases through the prison service, with good links to local NHS TB services wherever the prisoner is based. There is an opportunity to develop a more robust process than currently exists, when the prison health services become allied with the NHS in April.

  Apart from being managed between more than institution patients may also have a dual diagnosis which requiring input from more than one specialist service. TB patients may suffer from a range of other conditions including drug and alcohol problems, HIV, diabetes, renal problems, psychiatric problems etc. One condition cannot be successfully managed without addressing the other and good collaboration between services is essential in order that any intervention will accommodate rather than compromise the other.

    —  Key Point: All those involved in diagnosing TB need to work together to avoid delays and losing patients. Special care is needed when more than one organisation (eg prison service, private sector etc) or department is involved.



  In order to achieve a successful outcome it is essential to find out what is important to the patient as well as what is important to treating the disease. There has been a tendency to focus on the latter with the result that people have tried to control the disease by controlling the patient. Although a standardised treatment regimen should be used, care needs to be planned on an individual basis. Different patients will have different concerns and will require a different level of support in order to complete treatment as well as ideally improving any circumstances which may have led to the patient becoming ill with TB in the first place. A patient-centred approach requires patient involvement and good local networks with strong links to voluntary and statutory organisations such as housing and social services.

  If on assessment it appears likely that the patient will have difficulties taking the treatment they may be offered additional support such as directly observed therapy. This has to be arranged with the agreement of the patient and if possible offering some flexibility with regard to time and location of treatment as far as possible to suit the patient. Staff from other organisations such as district nurses, school nurses or hostel workers may be involved (with the support of the local TB nurse) if they are able to offer a more convenient service to the patient.

    —  Key Point: Holistic individual assessment of each patient is required in order to develop an appropriate plan of care which will maximise the chances of a successful outcome.


  Care has to be planned with the patient—if a patient is unable to attend at certain times or does not understand certain instructions then the treatment will fail. It also has to be realistic and planned in collaboration with any services being offered, so that patients maintain confidence in the system. It is no good promising something, which cannot be delivered.

  When negotiating the involvement of other services it is important that they also participate in discussions as to how TB is managed locally at a strategic level. For example, if local social services departments are asked to become involved on a patient to patient basis it will be difficult for them to see the relevance of that involvement and offer it any type of priority within their already pressurised workload. Partnership relies on participants being fully engaged with a clear role to play as part of the whole system. Local authority departments and other services need to understand the contribution they make to TB control from regeneration to case finding to case holding.

  Planning can often be compromised by inequities in services in different areas. For instance, some services are able to offer incentives such as food and travelcards to patients attending regularly for directly observed treatment, and others are not. There continues to be discrepancies regarding the cost of treatment. Most health care professionals believe that TB treatment should be free of prescription charges but this is not the case. A number of clinics try to ease the cost for patients who are eligible to pay and are invariably on low incomes. Where this is not the case, patients may be faced with the high costs of paying for repeat prescriptions for the combination of drugs they need over a six month period. Cost is a significant barrier to treatment and with an infectious disease such as TB it should not be borne by the patient.

  The availability of negative pressure isolation rooms is also an issue—not only the number of rooms available, but also their monitoring and maintenance. Different hospitals have different types of rooms which may not, strictly speaking, meet the criteria of a negative pressure isolation room. For instance, they may not have a lobby or en suite facilities and the extractor fan may not be filtered. Some can offer isolated patients TV and telephones, which should be a minimum requirement, some allow patients to smoke, while others offer none of the above to ease the boredom and frustration of isolation.

    —  Key Points: Services which may be involved in the care of TB patients should also be involved in planning at a strategic level.

    —  Local services should meet nationally agreed standards eg with regard to provision and type of isolation facilities, efforts to reduce costs for patients, incentive schemes etc.


  Care should be implemented by those identified during the planning process and ongoing communication is required throughout the treatment period. Minimum routine follow-up involves the patient being seen at least monthly by the TB nurse and at significant times for the treatment (ie diagnosis, change from initial to continuation phase and on completion) by a physician who has specialist knowledge of TB. If any clinical problem arises at any other time, the patient is referred to the physician.

  The TB nurse sees each patient on their caseload at least monthly to monitor treatment and progress, offer support and advice and pick up any problems promptly. All patients should be able to phone the TB nurse specialist directly if they have any problems. They can then be given information or advice they need or an earlier appointment can be made to see the physician if necessary. Clear processes are needed for the follow up of patients who fail to attend for routine appointments. If support and advice are accessible and problems are dealt with promptly, breaks in treatment can be reduced and compliance maintained.

  Providing care can be complex if the patient has a dual diagnosis or lives outside the area covered by the treatment centre. Each patient should have a case manager who is able to liaise with a number of colleagues across organisational and geographical boundaries. The case manager is usually a TB nurse. While they may not always be the most significant person involved in a patient's care, nurses can organise the service so that the patient gets the best support from the most appropriate person or people at the appropriate time.

    —  Key Point: Flexibility is required across organisational and geographical boundaries to ensure that problems are identified and dealt with promptly and appropriately.


  Evaluation should occur for each individual patient, which will in turn provide information as to how the system is performing overall in relation to its aims. There are a number of clinical factors such as treatment outcome, drug resistance levels etc which should be routinely evaluated. As well as evaluating the patient's clinical progress, there should also be ongoing evaluation of the appropriateness of the care being offered and a review of that care according to the patient's needs and circumstances. As well as during routine follow up, there should be other mechanisms for patients to give feedback, anonymously if necessary, on the service provided.

  There should also be the opportunity to evaluate more structural factors such as the effectiveness of relationships with other organisations and the need, availability and use of negative pressure facilities. Useful evaluation requires agreed standards with processes for performance management and clear lines of responsibility. Having said this, if the system is working as a whole, responsibility is shared so that problems, such as the failure to meet targets, can be addressed in a collective and supportive way in order to find an appropriate solution.

    —  Key Point: Evaluation of factors from treatment outcome to the provision of care to liaison with other organisations, is essential to ensure that the system can measure and maintain its effectiveness at all levels.

How this can be applied to other diseases

  From looking at the different elements involved, it is clear to see how important it is to be working with a whole network of services in order to achieve the necessary levels of case finding and patient holding. The principles are likely to be similar for other infectious diseases, especially when there are similarities in terms of the stigma associated with the disease; social aspects (lifestyle, environment, education, contact etc) outweigh clinical aspects; and management and patient behaviour are crucial not only to the patient but also to their "community".

  People with infectious diseases must be made part of the solution and treated as partners so the need for patient-centred approaches is essential. People with non-infectious diseases can choose their course of action without affecting others physically, however, they may cost the health service more by suffering increased acute episodes. In this sense, management of TB may even have lessons for non-infectious diseases.

  In terms of related infectious diseases, no strategy for either HIV/AIDS or TB should be independent from the other as they are so closely associated. The development of specialist areas has led to different diseases being seen as separate issues, which has been exacerbated by the need to compete for limited resources. Within the old health authority structures, communicable diseases have often fallen between public health and infection control with little involvement of health care providers. The Health Protection Agency can help to address this through close links with primary care trusts and local providers such as GPs, acute trusts, private providers, local authority organisations etc. Provision also needs to be made for prison health care when it comes within the NHS remit. This will be a particular challenge due to the mobility of prisoners in and out of the community as well as between different prisons and other institutions.


  In Getting Ahead of the Curve (DOH 2002) the Department of Health acknowledges the need to address the TB situation on a nationwide basis. This gives us the opportunity to look with fresh eyes at the issue of TB control rather than assuming that we simply need more of the same. There is no point in sorting out one issue while ignoring others as all parts of the system are related in a number of ways. It is not a case of either or (eg screening or negative pressure), the whole system needs strengthening with collaborative planning, costing and implementing. Once TB control is seen as a whole system it is possible to recognise how many other agencies are integral rather than peripheral to the fight against the disease.

  This paper has described how diagnosis may be made and appropriate treatment prescribed but without notification or appropriate referral to specialist services, care and contact tracing may not be adequate. It has also pointed out that although treatment may be started within the TB service and all information provided, if a patient remains homeless or is suddenly required to move (eg as a prisoner or an asylum seeker) they may be lost. A broad range of services involved in case finding as well as patient holding. If we stop thinking of TB control as a list of separate tasks and look at it as a whole system, fragmentation and inconsistency can be addressed and people can be offered the access to the care they need.

  It is essential that the systems we have for controlling TB and other infectious diseases remain adaptable and able to respond promptly to inevitable ongoing policy changes. Reconfiguration of health services change commissioning processes; asylum law has an impact on the movement, location and, ultimately, health of asylum seekers; prison health becoming part of the NHS: all these things present challenges and opportunities for the management of infectious diseases such as TB.


  Department of Health (2002) Getting Ahead of the Curve: A strategy for combating infectious diseases. London: DOH.

  Kumar S, Innis J, Skinner C, Yield from Tuberculosis Contact Screening in Birmingham, Thorax 1992;42: pp 179-182.

  Pratt J, Gordon P, Plampling D (1999) Working Whole Systems: Putting theory into practice in organisations. London: King's Fund.

  Pym A, Churchill D, Coker R, Gleissberg V, Reasons for increased incidence of tuberculosis BMJ 311: 570, 1995 August 26.

  Ormerod LP, Tuberculosis Contact Tracing, Blackburn 1982-90. Respir Med 1993; 87: 127-132.

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