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Providing support to anyone affected by blood cancer
MPs in parliament are today (Wednesday 17 January) discussing the issues faced by blood cancer patients, in a drive to ensure that cancer policy within the UK is better focussed upon the needs of patients.
The foundation of the parliamentary debate is the first report published by the All Party Parliamentary Group on Blood Cancer (APPGBC), ‘The ‘Hidden’ Cancer: The need to improve blood cancer care’.
The report, launched today, focusses around the priority areas of the Cancer Strategy and provides evidence that this is failing to meet the specific needs of blood cancer patients.
We would like to thank the APPGBC and chair, Henry Smith MP, for producing this report and raising awareness of the issues faced by blood cancer patients. Here is a summary of some key findings and recommendations from the report:
In similar fashion to our ‘Spot Leukaemia’ campaign, the report identifies the need for improving understanding of what blood cancers are and awareness of the signs and symptoms to the public. Both of which could be leading to delays in diagnosis.
They also identified the need for supporting GPs to recognise potential blood cancer cases and refer for appropriate testing, based around the frustration of many patients who visit their GP numerous times before being diagnosed.
The final audience who the APPGBC suggest can improve early diagnosis is policy makers, so that Cancer Strategy recommendations can be more aligned to improve early diagnosis of blood cancers, not just solid tumours. In this vain, they recommend that patients presenting with one or more symptoms of a blood cancer should be sent for a diagnostic blood test.
Our response: “We are pleased to see that the importance of improving early diagnosis is being highlighted by the APPGBC, with higher percentage of all acute lymphoblastic leukaemia (ALL) patients being diagnosed by emergency than any other cancer type. We have been working hard over the last two years to support GPs in diagnosing blood cancer through our E-Learning modules and running our ‘Spot Leukaemia’ campaign to improve public awareness”.
Seven key areas are identified where blood cancer patients believe improvements are required. These are:
1. Post-transplant support, particularly for patients with severe long-term side effects.
2. Access to a Clinical Nurse Specialist (CNS) – Based upon the National Cancer Patient Experience Survey (CPES) the report suggests 1 in 10 patients do not have access to a named CNS. Our My CNS Matters report, however, indicates access could be much lower.
3. Ensuring all patients feel involved in decisions about their treatment.
4. Improving access to emotional and psychological support for patients and carers – Focussing on patients with chronic, slowly progressing and typically incurable, blood cancers who are offered little support to come to terms with their diagnosis and ‘Watch and Wait’.
5. Improving financial advice offered to patients regarding employment, time-off and travel.
6. Need to both develop, and improve access, to ‘kinder’ treatments to enable more patients to tolerate the treatment and fewer patients to have long-term side effects.
7. Increase use of cancer care plans for blood cancer patients.
Our response: “All of these areas of improvement highlighted by the APPGBC report are echoed by findings of our ‘Living with Leukaemia’ patient survey. We have identified that CNS access is an important factor in improving patient experience by ensuring patients are supported, receive both verbal and written information, and feel more involved in their treatment decisions. Therefore, we agree that improving CNS access is of crucial importance for patient experience”.
The Cancer Recovery Package has been developed as part of the Cancer strategy to help patients return to their every-day lives after cancer treatment. However, it appears that access to the recovery package varies significantly and it fails to account for the large proportion of chronic blood cancer patients who will never live “beyond” their cancer, but live with it.
The APPGBC recommend that NHS England consider how blood cancer patients are receiving support following care, particularly in the areas of chronic blood cancers and post stem cell transplant.
Our response: “There are significant challenges for patients and their families coming to terms with living with an incurable but slowly growing blood cancer. At current, the support offered to patients is lacking and therefore, it is pleasing to see the APPGBC are recognising the individual needs of this group of patients”.
Blood cancer is currently the 3rd largest cause of cancer mortality in the UK, despite it being only the 5th most common cancer. This reflects a need to develop better treatments for blood cancer, which is not treatable by surgery or radiotherapy commonly used for solid tumours.
The Cancer Drugs Fund (CDF) was set up to provide temporary access to new drugs while greater evidence and data on the effectiveness is gathered. The report expresses concerns that the time frame between CDF availability and NICE appraisal for routine availability on the NHS is not enough to gather evidence for some blood cancer treatments, as the patient group sizes are relatively small.
The APPGBC also state that an urgent review is required into the NICE drug appraisal system, to reflect new methods of treating blood cancer patients and enable affordable long-term treatment on the NHS.
Our response: “We are involved in providing the patient voice to NICE appraisals for new blood cancer treatments and a review into the current system is something that we strongly welcome”.
You can read the full report here.