Greater awareness of blood cancer and how it presents, alongside novel treatments to tackle the disease and an overhaul of the care pathway, are needed if patients are to receive timely diagnoses and appropriate care and support, urge United Kingdom legislators.
Members of Parliament from across the political spectrum call for “swift and comprehensive action” to prevent delayed diagnoses, as well as investment in blood cancer research in a new report.
The report was compiled by the All-Party Parliamentary Group (APPG) on Blood Cancer and published by the UK charity Bloodwise on January 17
The group was set up in 2006 to raise awareness about blood cancer. Comprising more than 100 individual diseases with different symptoms and different treatments, this is the fifth most common cancer in the United Kingdom and the third biggest killer — responsible for more deaths than breast cancer or prostate cancer.
The report highlights many areas where the National Health Service (NHS) could improve care, such as more frequent blood testing and greater availability of patient support.
In addition, it calls for greater coordination between primary and secondary healthcare services, for all patients to be assigned to a clinical nurse specialist, and for better education and training for doctors to identify blood cancer.
Henry Smith, MP, chair of the All Party Parliamentary Group on Blood Cancer, says in the report: “My hope is that the practical recommendations set out here will help to shape the future of blood cancer care and that these hidden cancers will be placed firmly on the political agenda.”
Helen Stokes-Lampard, MD, PhD, chair of the Royal College of General Practitioners, London, pointed out that recent data show that general practitioners (GPs) are referring patients to specialists after one or two consultations in over 7% of all cancer cases.
“This is really good news, particularly considering, as this report recognises with blood cancer, how difficult identifying symptoms can be in primary care, given that a GP, on average, will see less than one case of blood cancer every year,” she was quoted as saying in a new article in GP.
Reacting to the call for more blood tests in the report, Dr Stokes-Lampard said, “Any decision to pursue opportunistic testing must not be undertaken lightly, as GPs need a good scientific evidence base before they order any investigations.”
“What is certainly needed for GPs to continue doing a good job at identifying any cancers in a timely way, is better access to diagnostic tools in the community, so that we can appropriately investigate and refer patients as well as we can,” she said.
Developing the Report
To develop their report, the group focused on the five priority areas previously identified in the 2015 Cancer Strategy for England that were most relevant to patients with blood cancer:
The group then held an inquiry, during which it received more than 150 formal responses from patients, healthcare professionals, researchers, carers, charities, and NHS organizations, and held two oral evidence sessions in September 2017.
The inquiry heard that the low awareness of blood cancers has led to diagnostic delays, anxiety and isolation among patients, and difficulties in finding information and support.
This is at least in part because symptoms for blood cancer are similar to those of other, less serious conditions, which include fatigue, night sweats, weight loss, bruising, and pain.
The lack of specific symptoms has meant that patients often have to visit their GP more times than do other patients with cancer before being referred to secondary care.
Indeed, the inquiry heard that it is not uncommon for patients to be diagnosed only when they seek emergency care, with the result that, in some forms of blood cancer, diagnostic delays can affect patient quality of life and even survival.
Moreover, the reports notes that a recent survey showed that only 60% of patients diagnosed with blood cancer understood their diagnosis, well below the average of 73% for all solid tumors combined and the 78% recorded for breast cancer.
Responding to all the evidence, the APPG on Blood Cancer developed recommendations centered on the themes of the Cancer Strategy for England, including that the strategy itself should be reviewed to make sure that patients benefit from early and accurate diagnosis.
Smith says in the report: “Our overwhelming finding is that, whilst the Cancer Strategy is a welcome document that makes many important recommendations on improving patient experience and outcomes, the specific needs of blood cancer patients are not being fully met.”
To that end, they recommend that GPs should perform blood tests on patients with one or more symptoms of blood cancer and that GP education and training be improved to increase knowledge of blood cancer symptoms.
The report also recommends that information sources for patients diagnosed with blood cancer and their carers should be improved and simplified, and that the NHS work with charities, patients, and healthcare professionals to provide emotional and psychological support.
This should include a tailored approach to patients on a “watch and wait” follow-up, access to a clinical nurse specialist, and an increase in the number of patients with a cancer care plan.
It is recommended that after-care support programs offered by the NHS take into account the different experiences of patients with blood cancer, particularly patients who undergo stem cell transplantation.
The report also calls on the research community to develop novel, “kinder” therapies that have fewer adverse effects both during and after treatment, so that the impact of tackling the disease is reduced.
The government should also make “ongoing, stable” investment in research into blood cancer, the report says, as well ensure “earlier engagement” between drug manufacturers and the National Institute for Health and Care Excellence (NICE), the health watchdog.
This should improve drug appraisals and maximize the opportunities for new treatments, it states. Furthermore, the processes employed by NICE should be reviewed to determine how drugs used in combination or in multiple indications can better negotiate the system.
Finally, the report recommends, among other measures, that the “fragmentation between different stages of care” be reduced by commissioners bridging the gaps between primary and secondary care and between oncology and hematology teams and by more involvement of patients and charities in the provision of care and support.
Bloodwise provides the secretariat for the All-Party Parliamentary Group on Blood Cancer. The authors have disclosed no relevant financial relationships.
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