In control of their condition

Assessment and care planning for a healthy and active life after cancer is more urgent than ever, and Macmillan Cancer Support with the National Cancer Survivorship Initiative have developed the concept of health and wellbeing clinics in response to this need.

The clinics provide information and services for patients making the shift from treatment to life after cancer, enabling them to better manage aftercare.

It is envisaged that clinics could replace face-to-face review appointments with a doctor or nurse, while patients continue to receive their surveillance testing in addition to attending a clinic.

Macmillan is working to raise awareness of the clinics’ potential among clinical commissioning groups with a view to CCGs commissioning clinics as part of the services they provide to cancer patients.

The health and wellbeing clinics were piloted in 14 NHS trusts in England, Wales, Scotland and Northern Ireland in 2010-11. Across the 14 pilot sites, 87 clinics were held and attended by 764 patients.

The pilot was evaluated by the Office for Public Management using a three-stage questionnaire - completed by patients before a clinic, two to four weeks after attending and again after two to three months - and in-depth interviews with 60 patients.

Knowledge boost

Many patients reported benefits including increased awareness of symptoms and treatment and reduced service use, not only shortly after the clinic but persisting several months later.

Health and wellbeing clinics are not a “clinic” in the traditional sense, but more like a fair, where patients and families can browse stalls to pick up information on services, and listen to talks given by, among others, clinicians, dieticians, psychology services, complementary therapists, welfare and benefits advisers.

The idea is that, if patients can get all this in one place, as well as having the opportunity to ask questions and to chat with other patients and volunteers, they become better informed and more able to self-manage.

The evaluation found that patients and families who attended a clinic universally liked the “one-stop shop” format, because it offered something that was different from other aftercare.

The chance to meet volunteers and other patients and families gave a sense of shared experience, lessening feelings of isolation and providing reassurance.

The evaluation identified a range of benefits of the clinics in terms of patients’ health and wellbeing. Patients reported:

• Better knowledge of the treatment and support options available to them. In all but one of the pilot sites, patients surveyed two to four weeks after attending the clinics said that their knowledge was increased. When surveyed again after two to three months, in over half of the sites they said they had maintained or even increased further their knowledge of treatment and support options. They had: 
• Better knowledge of what signs and symptoms they should look for relating to recurrence. Patients in two thirds of the pilot sites reported improvements in what they know about symptoms of recurrence: this represents a considerable proportion of patients who can recognise symptoms, distinguish them from side effects or unrelated health matters and seek advice as appropriate.
• More confidence to question or challenge information about their health and make decisions about it. Again, patients in most sites gained in confidence, more so when surveyed two to three months after the clinic; suggesting that these effects are not just a temporary surge.
• More confidence that managing their own health would reduce the need to see a doctor. This is a key indicator from a service delivery perspective, where patients’ confidence translates into savings for services. Patients in three quarters of pilot sites reported an increase in this dimension of confidence after attending a clinic.
• More confidence to keep the physical discomfort and emotional distress associated with cancer from interfering with their everyday life. Fatigue management was key to this.

Patients also talked about gaining a strong sense of reassurance from attending a clinic, which services they should seek and how to access them in the future. As well as reassuring patients, this knowledge is likely to enable them to seek help earlier if symptoms do recur, and thereby improve the likelihood of positive outcomes.

Reduced use of services

Crucially from a commissioning point of view, patients reported that they reduced their use of statutory health services after attending a clinic. Most notable and sustained was the reduction in use of GP and district nursing, with patients in all the pilot sites saying they were using these services less when surveyed two to three months after attending a clinic. Self-reported use of hospital-based services was reduced by patients in two-thirds of pilot sites.

The small proportion of patients who were using or planning to use health services more than before a clinic were generally intending to do so in order to address previously unmet needs: seeking advice on side effects of medication, or seeking medical help rather than ignoring symptoms that were worrying them. Some patients said that after the clinic, they were more likely to call the Macmillan telephone support line instead of their nurse specialist, representing a cost saving to statutory health services.

Use of financial and employment advice services were also reduced, suggesting that information provided at the clinic on these topics may have reduced the need for patients to seek it elsewhere.

The picture was not all about less usage, however: a number of patients took up services related to wider wellbeing, such as complementary therapies and counselling - many of which are provided by voluntary sector agencies - saying that they hadn’t previously been aware of these services or how they could benefit from them.

Macmillan funded the clinics over the course of a year, while trusts organised and ran them. In some trusts, PCT commissioners sat on their local steering groups for the project, in order to find out about the potential outcomes for patients, the numbers of attendees, the risk stratification of patients and the potential cost savings.

Macmillan is currently in discussion with CCGs at different stages of their development, with the intention of making them aware of the potential benefits of the clinics in terms of changing referral pathways and the opportunity to get across health promotion and prevention messages.

During the pilot phase, clinics did not replace other kinds of follow-up care but were offered to patients as a complementary, additional service. However, some of the pilot trusts are continuing to run health and well-being clinics, which are now being funded as part of the tariff paid by primary care trusts/CCGs for their cancer patients.

Lucy Smith is a senior researcher at the Office for Public Management lsmith@opm.co.uk