Exasperation

Not for the first time, I find myself exasperated by the patronising attitude of a national cancer charity - and once again it is Macmillan who are the object of my exasperation.

This morning's news brought their comments on a YouGov survey of around 2,000 people with cancer.  The survey found that 45% of people who had had chemotherapy, 60% of people who had had radiotherapy and 61% of those who had had surgery went to "at least one" of their cancer-related medical appointments on their own. (Though only 5% said that this was because they had no-one they could ask to go with them.) 86% of those diagnosed in the past year went to at least one of those appointment alone. Macmillan said that they found this "deeply saddening"

Now this might mean that a substantial number went to all or most of their appointments alone or that most people had someone with the most of the time but went alone once.  Which means that without more information than they gave in their saddened press release, these figures are pretty meaningless other than in the case of the 5%.

One person they mentioned commented that staff had looked at him with a mixture of pity and intrigue when he turned up alone, but Macmillan didn't comment on the inappropriateness and unhelpfulness of that reaction.  What their Head of Health and Social Care is quoted as saying is this "There is no-one to act as their advocate, asking the doctor the questions they might not have thought to ask because they are too overwhelmed, or to calm them down if they are stressed or anxious."

Next week I will go to my appointment alone, as I have done all my others except one.  The exception was the one immediately after surgery, before I was driving again.  A friend drove me there but didn't come into the appointment with me and although I'm sure she would have done if I had asked her to, it didn't cross my mind to ask.

I will, as usual, prepare for the appointment in advance as I have done right from the very first one.  I will have thought of the questions I want to ask and written them in my notebook.  Yes, I will be anxious and it will be a bit stressful - not helped by the fact that the odds are that the clinic will be running very late.  However, simply having someone else there is not going to make that wait any easier and why would I need someone to calm me down?????? After all, I know it isn't the receptionist's fault that the clinic isn't properly planned and by then I will have calmed down from my current state of exasperation at the reaction to this survey.

There is nothing deeply saddening about me going alone to my appointments. They are my appointments and my opportunities to ask what I want to know. What is deeply saddening is that hospital and cancer charity staff have problems with cancer patients attending appointments on their own and it is an absolute scandal if staff regarded the patient quoted with pity.  I do know from conversations I have had when I've been at conferences that some who work in cancer services feel more comfortable if a patient has someone with them.  But that has more to do with their own feelings than the needs and wishes of the patient!

Instead of reinforcing a stereotype of the weak, feeble and overwhelmed cancer patient, charities set up to support us should be challenging the assumption that all patients should have someone with them for all or most of their appointments because they can't manage on their own.
We need empowerment, not patronisation!