On the record: patient phone calls
Ten years on from her breast cancer diagnosis Dr Ann McPherson is the driving force behind a website that highlights the importance of valuing patients' experiences
Anniversaries, be they birthdays or a bereavement, are important in our culture. For illness they also provide a time for reflection and at the very least a kind of mental follow-up appointment regardless of whether it's accompanied by a physical follow-up.
It is now 10 years since I was diagnosed with breast cancer. Like an increasing number of women facing this disease, I had months off work while going through chemo and radiotherapy.
Throughout my treatment I thought about having cancer almost every day. But the cliché 'time is a great healer' has also been true for me. Now, 10 years on, I rarely think about it except when I get a strange unexplained pain, or a friend rings me up having just received a similar diagnosis, or if a patient comes back to see me with a secondary 15 years after their own first diagnosis. I am one of the many thousands of 'cancer survivors' even though
I don't fully trust the concept or like this term.
During the last 10 years much has changed for patients with breast cancer in the NHS. Treatments have certainly got better and my own hospital the John Radcliffe in Oxford now has a dedicated breast cancer ward, which means women no longer have to compete for appointments and beds with patients undergoing other forms of acute surgery. The guidelines on 'best practice' for women with breast cancer have also been reviewed and most women are offered treatment with properly trained dedicated breast surgeons rather than generalists.
Further, the 'two-week rule' has revolutionised my life as a GP. No longer do I have to make desperate phone calls to beg a reluctant overworked surgeon to see a patient urgently. I can just say the magic words 'two-week rule' and send it off, to receive a practically instant appointment. The problem comes afterwards. In many areas such as radiotherapy, there are unacceptably long
waits causing uncertainty and anxiety for the patient.
As a result of my experience I do now find myself increasingly referring women with any kind of breast lump. Previously I might not have referred someone with a very small lump the size my own was.
I never suggest that someone fights their cancer by 'thinking positively'. If someone has a recurrence it is too cruel for them to feel it was their own fault for not 'having the right thoughts'.
My experience has also brought home that dealing with uncertainty is perhaps one of the most difficult things any of us has to face. Even once a proper diagnosis has been made, the patient then has to cope with the 'choice' between treatments and what that actually means.
And yet this concept of 'choice' is so high on the Government's NHS agenda.
Despite having good medical knowledge about breast cancer and being married to an epidemiologist who could provide all the information I needed, just being given the facts and being told to make a choice was not something that I felt I could easily do, or even wanted to do, by myself. I needed someone else to support me, help me make the decisions and generally care for me, and take some of the responsibility off my own shoulders.
I didn't want all that choice for myself, and neither, I think, do many of the patients I see. What I wanted was the highest quality of care as near to home as possible and as quickly as possible. Of course the choice offered needs to be realistic and practical. I was offered three hours travelling every day for radiotherapy or a 10-minute journey three times a week for a higher dose and probably more side-effects. It wasn't really much of a choice.
Another thing that having a serious illness has taught me is the information and support that is required.
When I had breast cancer I wanted to hear about other women's experiences but not just those who had survived to climb mountains, run marathons, and who had never taken a day off work. I wanted to know the full range of what people had been through, including the vomiting, the tiredness and the anxieties, so that when I experienced these things, I didn't feel that I was abnormal.
I can see that it could be dangerous to extrapolate from one person's experiences, which is why I have subsequently, with a group of colleagues, developed a project called DIPEx (Database of Individual Patient Experiences).
The project applies rigorous qualitative research methods to patient experiences rather than the previously acceptable (and now quite unacceptable) 'rent-a-quote', in order to illustrate, as broadly as possible, what it is like for a patient who is actually going through an illness.
The present DIPEx project actually arose out of a chance meeting between myself and Andrew Herxheimer, founder of Drugs and Therapeutics Bulletin, who had recently had a knee replacement. We put our heads together to look for better ways to collate a wide range of patients' experiences of health and illness which needed to be more than 'tick-box' patient satisfaction questionnaires.
The NHS talks of patient-centred care. This is not a new concept as many of us working in the NHS have delivered varying degrees of patient-centred care, or think we have, for many years.
I believe there is another way for the health service and medicine to become patient centred. It is time for all medical textbooks to include not only pathology, epidemiology, symptoms, signs and treatments, but also a summary of patients' experiences based on high-quality research.
Ann McPherson is a GP in Oxford
How breast cancer has changed my approach
changed my approach
·Never quite trust a breast lump to be benign until proven to be so however small it is
·Refer more frequently the referral system
is now infinitely better
·Illness can be very isolating I phone patients during treatment to give support
·Other people's experiences of the same illness are hugely reassuring, important and informative
DIPEx is a UK registered charity. Its website www.dipex.org is aimed as a support and information tool to patients, their family and carers, but is also being piloted as a unique teaching resource for doctors, nurses and other health professionals.
Patients' experiences of the following conditions can be found on the site:
High blood pressure, epilepsy, congential heart disease, heart failure, heart attack, cervical screening, breast cancer, cervical cancer, bowel cancer, lung cancer, prostate cancer, testicular cancer, living with dying, ovarian cancer and depression, with several more in the pipeline.