For cancer patients, having access to trusted information when they need it, in a format that’s right for them, is invaluable. Patient support groups and charities can offer just that, and referral routes to services such as Breast Cancer Now’s ‘Here For You’ gives clinicians the opportunity to signpost patients to this ongoing support outside of the clinical setting, as Heather Pollard, the charity’s head of personalised support, explains.
It’s widely understood that not all breast cancer patients are aware of the support and information that’s available to them outside of their immediate clinical setting.
Some 70% of patients surveyed by Breast Cancer Now said they wanted to speak to an organisation for emotional support and information, and 52% wanted this to happen at diagnosis. A further 22% of patients reported not feeling confident to ask for information as the main barrier to accessing support.
However, 59% of patients surveyed were not offered information on support services at all, and over 80% of those said they would have accessed these services had they been aware of them.
The proportion of patients who say they needed information, support or advice but didn’t get what they needed has been found to increase in the period after treatment when returning to normality and maintaining quality of life and wellbeing are priorities. But the Big Breast Cancer Survey in 2024 showed that wellbeing is in fact a key challenge at all stages of people’s experience with breast cancer.
Breast cancer can be an isolating and anxious experience from diagnosis to treatment and beyond, and charity support services can help address concerns and provide connection to peers.
This can be of particular importance to patients with a diagnosis of secondary breast cancer, and early insight from Breast Cancer Now’s inclusion work shows that this can also be felt acutely by people who are already marginalised by their age, location or ethnicity.
For these patients, isolation can be greater, and more specific information and support can be required. This could be by enabling women to meet others of a similar age or background or using interpreters to enable full understanding of what support is available, for example.
Patient referral routes to ongoing breast cancer support
Breast Cancer Now’s direct referral route for breast cancer patients gives healthcare professionals the opportunity to refer their patients at any stage of their cancer journey, ensuring the provision of ongoing personalised support and information that can complement and enhance that provided by their clinicians.
Here For You is co-designed and co-developed by a lived experience project group, who inform its direction and development. The group inform Breast Cancer Now’s resources, recruitment and strategic direction, meeting monthly with staff members to share their insights.
The referral route was first piloted with four hospitals in 2019 and, following this success, has now seen 70 hospitals signing up and referring over 160 patients per month.
Any healthcare professional can complete a simple referral form for their patient, who will then receive a phone call to discuss their individual needs and how Breast Cancer Now can support them. Patients are offered further follow-up calls after three and six months to ensure that their needs continue to be met.
Patients can be signposted to as many of the charity’s services as required, from the clinically-staffed helpline, peer support service and events – for which there is an access fund for those who may find getting to in-person events difficult – to courses on moving forwards after a diagnosis and more specialised services on topics such as living with secondary breast cancer.
Services are offered in person, by email and online, and interpreters are available for all phone calls to meet language requirements as needed.
Healthcare professional feedback
Results from Breast Cancer Now’s healthcare professional survey, published in the Here For You annual report, showed that the referral route streamlines the signposting of patients to additional support. Some 95% of healthcare professionals said that Here for You means patients access more accurate information on support, and is easy for them to remember rather than juggling details on multiple different services.
All of the healthcare professionals surveyed felt that referral was simple and 98% trusted that the service offers patients the most appropriate support.
One healthcare professional commented: ‘Being a fairly new post, I am not aware of all the services on offer to patients, so I feel my lack of knowledge is supported by Here For You and I feel confident that my patients are being fully supported by the service and not missing out due to my lack of knowledge.’
Breast Cancer Now’s evaluation data shows that 96% of patients would recommend that their healthcare professionals refer other patients to Here for You as they have valued access to the support, information and the approach taken.
