The best treatment and care, delivered quickly, can save lives and ensure people with secondary breast cancer live as well as possible for as long as possible. Our new policy report highlights what can be done to improve treatment and care in the UK. 

Wednesday 1 November 2017      Policy and campaigns blog

Melanie Kennedy was forced to crowdfund for the breast cancer drug Kadcyla

Our new report, Good enough? Breast Cancer in the UK looks across the patient pathway in the UK, from prevention and early diagnosis to treatment and care, and demonstrates that while there is much to celebrate in breast cancer, there is still much more to do. By 2030, we believe we’ll be able to select the best treatment for every patient, and over 50% of those diagnosed with secondary breast cancer will survive beyond five years. But only if we all act now.

In this blog, we discuss two of the most pressing aspects of treatment and care highlighted in the report – access to clinically effective breast cancer drugs and patient experience. Breast Cancer Now continues to campaign to improve access to innovative breast cancer drugs like Kadcyla, which was the focus of our successful #KeepKadcyla campaign last year.

Access to medicines

The National Institute for Health and Care Excellence (NICE) makes decisions on which medicines will be made available on the NHS in England. Wales and Northern Ireland normally follow NICE guidance, although in Northern Ireland the process can take over a year. In the meantime, the Health and Social Care Board may make medicines available in individual cases in Northern Ireland. The Scottish Medicines Consortium makes decisions on which medicines will be available on the NHS in Scotland.

On the whole, the UK has one of the lowest uptake rates of new cancer drugs compared with the largest European economies. Over the last ten years, a series of promising new medicines have been rejected by NICE for not being cost-effective, meaning the benefits of research are not reaching patients. Although some breast cancer medicines have recently been recommended, the flexibility and willingness to compromise on price that enables this to happen can often delay decisions, causing unnecessary anxiety for patients.

Melanie Kennedy, 39, is a single mother with secondary breast cancer from Bangor, Northern Ireland. When Melanie’s request for revolutionary breast cancer drug Kadcyla was initially rejected, she was forced to crowdfund for the drug.

Melanie said:

The system is broken. Those with the power to fix it should remember that every time a drug stops working and a patient is denied their next best treatment option, they feel like they’re being diagnosed all over again.

Although NICE’s decision to endorse Kadcyla has now been extended to Northern Ireland, it’s still not clear when the drug will be available to patients there.

Patient Experience

The Cancer Patient Experience Survey (CPES) regularly measures the views of cancer patients across the UK. The survey provides valuable insight into patients’ experiences, which can be used to drive improvements in their care. The UK government is considering allowing patients to opt-out of sharing their health and care data for purposes beyond their direct care – including improving services – in England. Because this would impact on the number and quality of responses to the CPES, NHS England is considering discontinuing it.

Secondary Breast Cancer

The CPES does not currently differentiate between patients with primary and secondary cancer. This reflects poor data collection on secondary breast cancer more widely. We know that secondary breast cancer patients often experience a poorer standard of care – only 21% of organisations in England, Scotland and Wales report having one or more nurse dedicated to secondary breast cancer. We need to collect more and better data in order to ensure the necessary services are provided.

What needs to be done?

We want to send the message that Breast Cancer Now is ready to work with the Government and the NHS across the UK to take action now:

  • We need to see reform to the way that medicines are appraised and funded in England so that patients have timely access to life-extending medicines.
  • In Northern Ireland, the process for implementing NICE guidance should be reviewed so that new breast cancer drugs can be made available to patients more quickly.
  • The Scottish government should deliver the recommendations of their recent access to medicines review quickly and effectively.
  • Every effort should be made by the government to explain to patients the benefits of agreeing to share their data in order to improve patient experience.

How you can help

Contact your local politician now to ask them to represent patients with breast cancer where you are.

Help us fix this – your voice is the most powerful one we’ve got.

Email your local politician