Breast Cancer Care recently surveyed women and men affected by secondary breast cancer, which cannot be cured. We wanted to establish if they were in pain because of the side effects of their cancer and treatment. Shockingly, we found that 90% of them were, many of them on a near daily basis.
Here we are in the 21st century and living in a country with (what has recently been reported as) the best healthcare system in the world and yet, potentially, an estimated 32,400 people could be living with pain on a regular basis. The impact of this pain leaves many unable to take part in activities so many of us take for granted, such as getting the shopping done or looking after the kids.
As someone who has gone through some fairly extensive and invasive surgery in the past (albeit none of it cancer related), I was regularly told by healthcare professionals that any pain I did experience as a result of my surgery could be remedied; I just needed to let them know.
So why is the situation any different for people with a much more serious disease? Well, we're not sure exactly but we think there are a few reasons.
Firstly, pain management normally comes under the responsibility of a palliative care team. We know from our survey that 70% of respondents with secondary breast cancer initially associated the term 'palliative care' with the end of life. Many think: "it's not for me", "I'm not ready for this" and sadly: "I'm being written off".
You begin to get a more complete picture when you add to this the fact that 41% of respondents have never been offered a referral to a palliative care team. This is despite national standards which recommend offering the option of palliative care shortly after diagnosis. Some of this might be about a lack of awareness among healthcare professionals, but is there a reticence by them to talk about something that worries and frightens many patients? It can't be an easy conversation for anybody to have and must be made all the more difficult when the term 'palliative care' is so widely misunderstood. We're aware that our survey only asked patients to share their experiences and not healthcare professionals, so it's something I'd particularly welcome your comments on, especially if you're a healthcare professional working with secondary cancer patients.
What's the solution then? Is it a case of just raising awareness of the range of services a palliative care team offers and breaking down the misunderstanding and stigma behind the term? Yes, in a way, but it's more than that. Central to much of this debate is the need for those with secondary breast cancer having access to a clinical nurse specialist (CNS).
With expertise and knowledge of secondary breast cancer, the CNS plays a key role in supporting patients to navigate the NHS system (which can be very complex for secondary breast cancer patients), providing information and reducing feelings of isolation as well as supporting patients to manage their pain. But access to clinical nurse specialists for those with secondary breast cancer is patchy - and this needs to change.
Prompt and timely access to expertise in palliative care is also crucial. Not everyone's pain will be successfully controlled, but earlier input from specialists will reduce the duration and severity for many. Patients must be referred as early as possible to a palliative care team, preferably at the point of diagnosis and, crucially, before some of the most debilitating symptoms take hold. If those with a secondary diagnosis know about palliative care and what it offers, they're more likely to access the services they need, when they need them.
Nobody should have to live with pain that could be controlled. Secondary breast cancer patients should also not feel they're getting second rate care. That's why we're launching a petition today to improve the care and support for people affected by secondary breast cancer. Please sign and share: www.breastcancercare.org.uk/improvecare