Browser does not support script.
Skip to main content
Cancer diagnosis, treatment and aftercare usually take place in secondary care, with primary care and community services looking after people who require palliative or end-of-life care. Although post-cancer aftercare is beginning to change, the majority of organisations continue to provide aftercare and follow-up in a very traditional way.
People often attend specialist outpatient clinics simply to receive the results of any follow-up tests, a process repeated over many years until discharge. There is no systematic approach to addressing their other health needs.
In effect, the clinics look more at the cancer’s presence or absence rather than the whole patient. Other healthcare professionals, especially GPs, are capable of looking for, identifying or reporting concerns following cancer treatment, as are most patients provided they have the necessary information and are empowered to do so.
The problem currently is that GPs and patients don’t receive appropriate information from secondary care in a structured, practical, easy-to-read format. A key point for the person with cancer is when planned treatment (surgery, chemotherapy or radiotherapy - or combination of these) has been completed.
A clinical outcome has been achieved and no further treatment may be planned (depending on the cancer type, its stage and biology) or ongoing maintenance or hormonal treatment may be required. The patient will perhaps be cured, at variable risk of relapse, or have achieved a partial response with an anticipated period of disease stability thereafter.
There may be specific prescribing requirements, for example, hormonal treatments in breast or prostate cancer, or long-term Imatinib (Glivec®|) in chronic myeloid leukaemia. For a minority of patients, the outcome of initial treatment will be poor with a limited prognosis, and referral to palliative and supportive care is appropriate.
These aspects of care need to be identified and recorded. This has traditionally been done in the clinic letters that follow the patient’s review in secondary care. A critical review of a random selection of secondary care clinic letters following treatment of cancer is likely to show the majority to be not ‘fit for purpose’.
There is as yet, limited uptake of a formal ‘post-treatment’ summary letter that is practical and useful for both the GP and the patient. In some cases, the content may be good, but the letter written in such a way that it’s difficult to readily identify the relevant information. Others are simply inadequate, containing too much unnecessary technical information and incomprehensible acronyms. In reality, the clinic letters are not truly directed at the GP - they represent a combination of a printed account of the consultation for hospital records and are effectively directed at the next secondary care specialist seeing the patient.
The Treatment Summary pilot work stems from this context and is an attempt to improve communication and facilitate the exchange of key information about care and follow-up. The aim is to improve the engagement of patients and primary care clinicians in post-cancer treatment survival. The outcomes of the Treatment Summary can be summarised as follows:
- The patient has undergone a process of ‘formal’ post-treatment assessment from an appropriately trained professional, such as a specialist doctor or nurse.
- It records that the patient has received information and support to take a more active role in the management of their own health, including deciding when to have a test and when to contact a specialist.
- It recognises the need for specific, long-term follow-up for the consequences of cancer, eg osteoporosis following endocrine treatment. It provides information and guidance about appropriate surveillance and management.
- It encourages the primary care and secondary care teams to see themselves as one team looking after the patient.
- A key component is also to record what the patient has been told in respect of outcome and prognosis including, where appropriate, issues relating to end-of-life care.
Feedback from the project has been encouraging. There are those in secondary care who say they are ‘too busy’ to complete the Treatment Summary and some uncertainty has been expressed as to whether it is instead of, or additional to the traditional clinic letter. Given there is a greater amount of positive comment, the challenge now is to take this further and achieve a substantial cultural change in secondary care that has the potential to enhance and catalyse major changes in dealing with cancer survivorship.
An alternative way of looking at the Treatment Summary is to see it as simplifying the process of communication. With regular use and suitable adaptation for the specific cancer group or type treated, it should actually save clinician time.
It’s based on a series of headings and topics directing the secondary care clinician to identify information that is relevant and practical for both the GP and the patient.
A specific format has been tested - it shouldn’t be taken as in any way fixed or final, there is no one size-fits-all post-treatment summary. The learning from this work is that the principles embedded represent the direction that survivorship care needs to take. For example - focusing communication to address issues such as symptoms that would raise concern about recurrence, post-treatment side effects, and access to specialist advice.
Pressures on the healthcare system will increase as demand increases and funding does not. Separate from health-related politics, our approach as secondary care clinicians has to change. For too long we have continued with an over-medicalised, paternalistic approach to post-cancer management. For many cancer types, occasional follow-up is wholly ineffective at picking up relapse, thus ‘follow-up’ isn’t achieving what it’s thought to achieve and clinic capacity is compromised with patients who don’t need or wish to be there for the most part.
Cancer outcomes and management have changed over the last 10 years, but available services haven’t adapted accordingly to recognise and manage survivorship. To meet the needs of our patients in the coming decades, when the numbers of cancer survivors will increase substantially, medical specialists need to be at the forefront, leading the change to new models of care and follow-up for people with cancer.
Adoption of the Treatment Summary with structured, practical information, including a clear plan for necessary ‘clinical surveillance’ is long overdue. Primary care practitioners have welcomed it, based on experience from the pilot, and primary and secondary care should be working together to support patients. Working to a Treatment Summary that is relevant to the cancer type and the patient represents a logical direction of travel, and a challenge that we need positively to adopt. It has the potential to make life a great deal easier for all and underpin the long overdue change to follow-up care.
A process of gathering and discussing information with the patient and/or carer/supporter to understand what the person living with and beyond cancer knows, understands and needs. This holistic assessment is focused on the whole person. Their entire well-being is discussed. The process culminates when the assessment results are used to inform a care plan.
The care plan
A plan based on the diagnosis and holistic assessment of the patient. The essential components will include identification of issues related to the diagnosis. It will need to prioritise the patient’s issues and include a statement on the specific actions and approaches to address them, and recognise issues that may not be readily resolved.
1. National Cancer Survivorship Initiative. Assessment and care planning definitions|. (accessed 11 August 2011).
Alastair has over 28 years experience as a consultant haematologist, with an emphasis on management of myeloma, leukaemia, and related haematological cancers.
He led the production of UK guidelines for myeloma care between 1998 and 2006. He developed a specialist myeloma clinic in Southampton as well as an outreach clinic in the New Forest to manage chronic blood conditions. During the past 10 years he has championed the use of active triage and written advice to help colleagues manage increasing numbers of general haematology referrals from primary care, thus reducing the number of unnecessary clinic appointments and actively managing clinic capacity. Email Alastair|.
Part three - A primary care perspective|.
Part one - Treatment Summary: improving communication between cancer services and primary care|.
Part four - Policy|.
More from the latest edition of Mac Voice|
Macmillan Learn Zone|
Macmillan Online Community|
Writing an article for Mac Voice?
Download top tips|
Tel 020 7091 2219
If you have any questions about Macmillan we would love to hear from you| .
You can also follow us| on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2013
what are these?|