Improving patient outcomes for people diagnosed with blood cancer

The chances are that only one in every 25 people reading this article might be aware of the true impact of blood cancer. Figures from Bloodwise show that 96 per cent of people are not aware that it is one of the biggest cancer killers.

The All-Party Parliamentary Group on Blood Cancer is trying to change this. A number of MPs and peers who serve have their own personal stories of blood cancer – mine is that my mother passed away from the condition, very suddenly, five years ago.

In the UK, around 230,000 people are currently living with blood cancer, and on average 104 people are diagnosed with the cancer each day.

An essential task in reducing these numbers is to increase awareness. With 137 separate diseases, some of which are rare or have complicated names, it is understandable that public awareness is low.

In some cases, the simple fact that a particular type of blood cancer does not include the word ‘cancer’ in its name means that this added confusion goes only to increase the difficulty in discussing diagnosis and treatment with family and friends.

The real problem caused by a lack of awareness is that people are unsure what to look out for. Delays in diagnosis can be caused by not knowing the signs – often similar to common ailments such as backache or flu-like symptoms – leading to a delay in a patient seeking medical advice, and GP referral.

To improve patient outcomes, there needs to be greater knowledge of the symptoms, which include fatigue, shortness of breath, fever and night sweats, bruising or bleeding, joint or bone pain, and problems sleeping. While these may not individually seem serious, if you have one or several of these indicators that are prolonged and unexplained, you should see your doctor.

This month the Group came together for the first oral evidence session of our inaugural inquiry into blood cancer care in the NHS. We expect this work to raise many questions, and identify areas for further follow up activity which we can revisit throughout the rest of the parliament.

Based on Cancer Strategy topics, we are looking at five areas of priority; awareness and early diagnosis, patient experience, living with and beyond cancer, research and treatments, as well as commissioning.

As part of Blood Cancer Awareness Month, the Make Blood Cancer Visible campaign have created an installation of sculptures of 104 people’s names, one for each person diagnosed with blood cancer each day. The display shines a light on each of their experiences of dealing with blood cancers, and these works, which are supported by nine charities, truly Make Blood Cancer Visible.

While it is important to raise awareness of the 137 different types of blood cancer, behind every statistic there is of course a patient. Angus Rowland died of acute myeloid leukaemia in 2011, at the age of 14. On 1st October, Angus’ friends and family in the village of Staplefield, just outside my Crawley constituency, will hold a Forget-Me-Not Walk & Run in his memory.

The UK, particularly through organisations such as Bloodwise, is a world leader in blood cancer research. These pioneering efforts lead the way in developing precision medicine and targeted therapies that can treat disease more effectively.

Many treatments come with harsh side effects or lead to health problems in later life, we need to increase survival across all blood cancers and strive for kinder treatments.

Indeed, one issue our inquiry is looking at is the wider patient experience. We are keen to hear from those, who have been or who are currently undergoing treatment, about their experiences and where they believe improvements can be made.

To repeat, 104 people will be diagnosed with blood cancer today. By raising awareness and improving treatments we can reduce this number and make improvements for blood cancer patients now and in the future.

Henry Smith MP