This meeting was smaller scale than the launch event designed to provide an update on developments since the report launch and an opportunity for further discussion between members and blood cancer charities.
The meeting focused on patient experience, picking up on one of the key areas in the Hidden Cancer report and specifically watch and wait and living with and beyond blood cancer and the suitability of the Cancer Recovery Package to blood cancer patients. Attendees heard from two Bloodwise patient ambassadors, Katie Ruane and Vivien Dagley as well as two specialist nurses from Barts Hospital, Sarah Pearson (senior nurse for haemato-oncology) and Tina Brooks (CNS lymphoma), all of whom spoke passionately and gave real insight into the issues faced by blood cancer patients.
Vivien spoke about watch and wait and conveyed how hard it has been from a psychological point of view living with the knowledge that she has cancer but not being able to do anything about it. She called for better psychological support for watch and wait patients like her.
Katie, who is in her early 30’s, suffers from CML and has had to learn to live with a chronic condition. She spoke about the suitability of the recovery package and highlighted that as someone who will never recovery from her condition, she was not even aware that this package existed. She described how she lives with cancer every day. It is a constant struggle to find the right medication. She suffers with crippling fatigue and cannot have a normal social life. She spoke about how she would love to have access to the services offered by the Recovery Package such as a holistic needs assessment but feels that she has been excluded from these due to the chronic nature of her condition.
Nurses, Sarah and Tina spoke about how patients can find a blood cancer diagnosis confusing and alienating as it is so different from solid tumour cancers and emphasised that better support is needed to help patients navigate the often complicated pathway of blood cancer treatment.
The meeting was a really effective way of triggering debate and further raising awareness in Parliament. The Chair, Henry Smith MP is keen to continue focusing in on specific aspects of the report. The group also received responses from Steve Brine MP, Parliamentary Under Secretary of State for Public Health and Primary Care to the recommendations made in the report just before the meeting. The responses acknowledge that blood cancer should be treated differently and that further steps should be taken to take this into account in the context of general cancer services, which is in itself progress, although it remains to be seen if these steps will be taken.
Several actions arose from the meeting, as set out below, and it is good news that the momentum created by the report is continuing.
• Further examination of the role of multi-disciplinary centres – centres where GP’s can refer patients who have vague symptoms such as those often seen before a blood cancer diagnosis.
• The group awaits a response from RCGPs to the APPG report and then we may consider inviting them to the next meeting of the APPG;
• Further questions regarding the recovery package and its relevance to watch and wait and other blood cancer patients;
• Further investigation into the access to Clinical Nurse Specialists for blood cancer patients;
• Confirm what resource is left in the Cancer Drugs Fund.
• Also, on the agenda, it was proposed that that the APPG on Blood Cancer hold a joint meeting with the APPG on Cancer to discuss CAR-T cell therapy and Bloodwise are working with Macmillan, Secretariat of the APPG on Cancer to arrange this.