Melanie Ripley, head of the winning team in the cancer category of the <i>Guidelines in Practice</i> Awards 2006, discusses the Oldham Cancer Family History Service


The Oldham Cancer Family History Service is part of a national seven-site pilot project, which was funded by the Department of Health and Cancer Macmillan Support for 2 years until March 2007. Funding for the continuation of the service is currently being sought from Oldham PCT and the cancer network.

The development of the service follows the recommendations in the NICE guideline for familial cancers,1 and research into breast,2 colorectal,3 and gynaecological4 cancers that supports delivery of 'risk assessment' for hereditary cancer by the primary care team. The service began taking referrals for the risk assessment of breast, ovarian, and bowel cancer in December 2005.

Objectives of the Oldham Cancer Family History Service

The service was developed using the 'Kenilworth' model offered by the Department of Health and Macmillan (Box 1).5 It is aimed both at those people who perceive themselves as needing advice, and at individuals and their families who are identified by a health professional during a routine consultation as being at possible risk of familial cancer.

The Oldham Cancer Family History Service aims to:

  • be client centred, with a self-referral pathway
  • raise awareness of hereditary cancer in the population of Oldham
  • reduce anxiety and offer support for the population/average risk group
  • educate health professionals in the primary care team—GPs, district nurses, health visitors, school nurses, practice reception staff, and managers—about hereditary cancers
  • set up and run local clinics
  • achieve, ultimately, a reduction in mortality rates.

Box 1: The 'Kenilworth' model for service delivery

  • Provide consistent, correct, and appropriate information
  • Carry out risk assessment according to an agreed framework
  • Streamline referrals in accordance with agreed pathways
  • Arrange consistent management of individuals according to their level of risk
 

Building the team

The bid from Oldham PCT was accepted in December 2004, and the first year was devoted to recruitment of staff, training, education, promotion, and building solid foundations.

The team comprised:

  • the project manager
  • a GPwSI in cancer genetics
  • a nurse specialist
  • a clerical assistant and a data coordinator for the decisions support unit, who provided administrative and evaluation support
  • two patient users.

Recruitment of patient users was vital to ensure all locally-produced literature was consistent and user friendly. These patients were invaluable when presenting this innovative service to local cancer support and voluntary groups, and in media interviews.

The GPwSI and nurse specialist were trained in risk assessment for breast, ovarian, and bowel cancer, under the guidance of the local tertiary centre and in accordance with the NICE guideline. This ensures all clients are managed consistently.

Informing primary care

In order that all practices were familiar with and aware of the service, a presentation was offered to all GPs and their staff prior to the launch, and information packs were given to senior partners and practice managers. Literature was also distributed to all local health centres, chemists, voluntary groups, libraries, and many other locations to raise awareness of the service.

Referral pathways

It was decided from the inception of the service that there would be a self-referral pathway for use via telephone, letter, or email, as well as a traditional health professional referral system (Figure 1). The team worked closely with the secondary and tertiary care sectors to develop pathways to ensure seamless referral for screening and genetic counselling/testing (Figure 2).

Figure 1: Self-referral pathway


 

Figure 2: Flow chart to indicate the pathway for breast cancer patients who have been assessed


Accessibility of assessment clinics

The whole concept of delivering 'risk assessment' in primary care is about improving accessibility, and reducing travelling time and expense. This was achieved by holding clinics in four local health centres across the borough each week, at locations known to most users of the service. At initial contact, individuals are offered the choice of health centre that they would like to attend. Appointment letters give information about buses, and directions for car users. Parking space is adequate and within reasonable distance of the health centres. Two of these are based in brand new state of the art buildings; the others are in older premises, which have a client-friendly feel. The consultation rooms are spacious and can be arranged informally, and waiting times are minimal.

Clinics are held on days when the resident GPs have no surgery, so that patients are not sitting alongside people with infections. Evening appointments are available for those who cannot take time off work.

Success of the referral systems

The project is achieving its aim of raising the awareness of hereditary cancer, as indicated by the number of referrals (Table 1). The self-referral numbers are almost double those from GPs, and, interestingly, mothers have also contacted the service on behalf of their children and referred them.

As is to be expected as a result of the publicity given to high profile patients and consequently women taking this aspect of their health more seriously, breast cancer accounts for the largest number of referrals (Table 2).

Interestingly, there have been 16 out of area referrals, including one from North Wales. This is a result of the lack of clinics in other parts of the country and word of mouth reporting of the Oldham Cancer Family History Service. The 'Other' category includes mainly lung, throat, and cervical cancers, which do not usually have a hereditary link.

Table 1: 'Referred by' data*

Referring person
Patients
 
n
%
Self
189
61
GP
108
35
Mother
7
2
Practice nurse
2
<1
Consultant
2
<1
Breast CNS
1
<1
Friend
1
<1
Total
308
 
*from 1 December 2005 to March 2007; CNS=clinical nurse specialist

Table 2: Cancer category necessitating referral*

Reason for referral
Patients
 
n
%
Breast
166
54
Bowel
76
25
Ovarian
28
9
Other
22
7
Out of area
16
5
Total
308
 
*to the Oldham Cancer Family History Service from 1 December 2005 to March 2007

Risk assessment results

A total of 174 patients have been seen at the clinics: 30 (17%) were assessed as being at high risk; 70 (40%) at medium risk; and 57 (33%) at population/average risk; 11 (6.5%) are awaiting assessment; 5 (3%) attended on family advice; and there was 1 (0.5%) inappropriate referral (Table 3).

Of those individuals who were referred to the tertiary centre, only one was risk-assessed at a different level, which we feel validated our risk-assessment process.

Continuing support from primary care is offered for clients with population/average risk, and one client is receiving ongoing counselling.

Table 3: Risk assessment results

Patients  
GP referral
Self-referral
Other
   
n
n
n
Breast  
 
 
 
  High risk
6
9
2
  Medium risk
16
31
2
  Population/average risk
8
22
1
Bowel  
 
 
 
  High risk
1
5
  Medium risk
4
15
2
  Population/average risk
5
9
1
Ovarian  
 
 
 
  High risk
4
2
  Population/average risk
2
9
Womb  
 
 
 
  Population/average risk
1
 
Awaiting assessment  
11
Family advice  
5
Inappropriate referral  
1
Total  
47
102
25

Benefits to patients

The Oldham Cancer Family History Service has several benefits for patients:

  • providing a client-centred approach
  • reducing travelling time and expense
  • consistent management
  • provision of consistent and user-friendly local information
  • seamless referral to secondary care for screening, and to tertiary care for genetic counselling/testing
  • availability of health promotion literature and advice on cancer awareness, diet, alcohol, exercise, and national screening programmes
  • patients are given a copy of the consultation summary letter and contact details should their family history change
  • external evaluation is being carried out by Nottingham University, as devised by the Department of Health and Macmillan Cancer Support—this involves interviewing members of the team and attendance at meetings by an evaluator
  • internal evaluation is being conducted through the decision support unit at the PCT–a specific database has been designed by the team and developed by a colleague in the tertiary care sector.

Lessons learnt

Several lessons have been learnt from our experiences of setting up the service. These include the following:

  • early recruitment of staff is important so that their skills and knowledge develop and promote the service from the outset
  • there should be clearly defined components for the service—planning, implementation, and outcomes so that there is a clear vision of its structure
  • it should have clear and realistic objectives
  • there is a need for flexibility: within working patterns so that these can be changed as the need arises to reflect the fluctuating numbers of patients attending health centres; in working with patient users and other partners in the secondary and tertiary sectors; in prioritising as the service develops; changing from risk assessment to health promoter, raising awareness, and dealing with the media
  • well-established links between the practice and secondary and tertiary care are important for seamless referral
  • patient users are key to the success of the project in developing literature that is consistent and user friendly, and when presenting the service to local cancer support and voluntary groups
  • it is important to have effective communication with all health professionals
  • education should be provided for stakeholders and service users to raise awareness of hereditary cancers, and the importance of how genetics may influence future management of people in whom a genetic fault is found when some cancers are diagnosed.

Conclusions

The Oldham Cancer Family History Service has achieved a great deal in a relatively short space of time. The team has gelled well, and referral rates have exceeded our expectations. The service has benefited from good project management. Recruitment of patient users has been pivotal, as their stories are far more powerful in raising awareness than anything health professionals can package.

Further developments of the service will include:

  • additional training for black and minority ethnic (BME) volunteers—three have so far been recruited but the lack of personnel has restricted the potential for raising awareness in their communities
  • establishment of a dedicated BME telephone line for self-referral—this is pending further recruitment
  • production and circulation of a satisfaction questionnaire for individuals who use the service
  • distribution of a user questionnaire for the health professionals using the service.

 

  1. National Institute for Clinical Excellence. The classification and care of women at risk of familial breast cancer in primary, secondary and tertiary care. London: NICE, 2004.
  2. National Institute for Clinical Excellence. Improving outcomes in breast cancer—information for the public. London: NICE, 2002.
  3. National Institute for Clinical Excellence. Improving outcomes in colorectal cancer. London: NICE, 2002.
  4. Department of Health. Guidance on Commissioning Cancer Services: Improving Outcomes in Gynaecological Cancers—The manual. London: DH, 1999.
  5. Her Majesty's Stationery Office. Our inheritance, our future: realising the potential of genetics in the NHS. White paper. London: HMSO, 2003. G