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Some months ago, a 50-year-old woman attended my surgery. She was a patient I knew quite well and had been receiving treatment for breast cancer diagnosed approximately six months earlier. I had seen her shortly after her initial surgery, but latterly not seen much of her.
I knew she had been up and down to the hospital (a 20-mile round trip), often on a daily basis, for both adjuvant radiotherapy and chemotherapy. I had received a letter outlining the planned treatment at one point, but knew very little of what the treatment fully entailed or how she had got on with it.
She started by telling me she had finished her treatment, but instead of seeming relieved that it was all over, I was surprised to find her upset and distressed. She told me that following this very intensive treatment, with frequent, regular contact with the hospital team, one of the doctors at her last treatment had said to her, ‘You are all done now. We’ll send you an appointment for a follow-up consultation in about six months’.
I remember vividly her description of how that felt to her – ‘I have felt so closely held throughout my treatment but now I feel as if I have just been dropped. I’m scared’. We spent some time talking through her concerns. Her treatment had left her very tired. She didn’t feel ready to return to work but was worried about the financial impact on her family. She was feeling pain near the radiotherapy site and wasn’t sure whether this was normal following treatment or a cause for concern.
To many GPs, this will be a familiar scenario. Although we know many of our patients well, primary treatment for cancer is often intensive, and during this period we may not see our patient at all. The information we receive may be incomplete or delayed. We know however, that there are certain key facts that are useful to us to provide good care for our patient when they finish initial treatment. To have all of these facts on a single sheet, easily extractable, so that we can see quickly what has been going on and record them in the patient’s notes, allows us to be much better able to provide good care for our patients at this time.
The Treatment Summary provides exactly that. The Macmillan GP advisers who helped develop it all have a particular interest in cancer, but are also working GPs and knew what information would be useful.
Letters during treatment or after clinic visits might typically provide some, but not all, of this information. For example, an oncologist may know immediately from looking at a chemotherapy regime what the likely treatment toxicities vii may be, but many GPs won’t. The oncologist may not think it necessary to document these in a clinic letter but when our patient returns to the surgery with symptoms, we need this information to understand their significance.
A GP will only see a relatively small number of people with a new cancer each year compared with a multitude of other conditions. Without a formal structure and framework, it can be difficult for a GP to know what form this review should take. Research has shown that many patients don’t even realise they have had a CCR when they have seen or spoken with their GP at this time.
GPs may well focus on physical symptoms and treatment when in fact, a patient may be concerned with loss of income, getting back to work, psychosocial issues or body image. Macmillan and the NCSI recognised how important these aspects are to people affected by cancer. Macmillan has supported the development and evaluation of structured templates for the CCR within GP software systems (INPS and EMIS). Use of these can help to inform the review and encourage a more holistic assessment.
Early results from this initiative show that 81% of GPs surveyed find the CCR template user friendly and 71% of patients found the process very satisfactory. It’s important that the CCR doesn’t become a ‘tick box’ exercise, but is seen as a series of prompts allowing the GP and patient to discuss a whole range of issues.
The GP may wish to use a general opening question and prompts to make it clear they are happy to discuss a whole range of issues, not just the medical aspects of having cancer. Areas on the template covering work and benefits remind GPs that these are very important to the person affected by cancer, and have as much impact on life as physical symptoms and treatment. Similarly, other parts of the template provide prompts to explore the patient’s understanding of their disease and the intent of treatment.
Currently, GPs are asked to complete this review within six months of diagnosis. This may coincide with the time when primary treatment finishes, when patients traditionally return to their GP. It’s easy to see how a comprehensive but succinct Treatment Summary, coupled with a holistic CCR with the GP, can provide a person affected by cancer with good care and support at the time of finishing their initial treatment.
It’s hoped that the use of both will become widespread over time, and that their combined use may revolutionise follow-up. The aim is to move away from the current model to one where people are empowered to self-manage with good primary care support and ready access to secondary care if and when necessary.
Lucy is a GP in Wiltshire and a member of the Macmillan GP Adviser group. She was first funded as a Macmillan GP Facilitator 15 years ago. Initially this role saw her concentrate on developing good communication between GP colleagues to cover out-of-hours care and educational initiatives, and tools to improve primary care palliative care.
She has been involved in national projects including the National Awareness and Early Diagnosis Initiative| (NAEDI) and the NCSI being part of the supported self-management work stream. She works as a GP three days a week. Email Lucy|.
Part one - Treatment summary: improving communication between cancer services and primary care|.
Part two - A secondary care perspective|.
Part three - Policy|.
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