It will be hard to have not seen today’s news reports highlighting the plight of cancer patients post treatment and how Macmillan is working with the government to address shortcomings in care and support post treatment. This may also raise awareness in the general population that once treated cancer is not over for the patient and their loved ones. The provision of a recovery package is much needed and this news is encouraging, It could help many, but how much does it help the CLL community?
Reading the News reports and listening to the broadcasts I cannot help but think of the CLL community and how familiar many of the issues identified that treated patients experience will be to our own treated and those in “watch and wait”. W&W is sold to the patient as part of the treatment process of CLL but the symptom burden, physiological and physiological effects may not be recognised and consequently may not be addressed, rusulting in patients not having access to support. Currently therapy does not cure (apart from a few in SCT), so treated CLL patients do not just worry about if it will come back, but when. and the commutative consequence of different treatments over time as well as disease effects. This may bring different challenges to the table for a CLL patient and their loved ones.
The tag “cancer survivor” is hard to attach for me to those living with CLL pre and post treatments, after all most of the time we may just be trying to live with it. Does it mean you survived cancer or that you are one tough cookie having to live with the disease? I guess cancer survivorship is living with cancer.
The most commonly diagnosed adult leukaemia (CLL) and other chronic so called “indolent” cancers that require similar management and treatment approaches needs further data evaluation and representation following this research. Will we continue to be invisible?
MACMILLAN EASY READ SUMMARY: macmillan.org.uk/Aboutus/Ne...
"The soaring number of people surviving cancer should for the first time be given comprehensive emotional and social care support, as well as medical treatment, Public Health Minister Anna Soubry and Macmillan Cancer Support Chief Executive, Ciarán Devane, announced today (29 March).
As people are being diagnosed with cancer earlier and treatments have become more sophisticated and successful, more and more people are surviving cancer but many are struggling to get back to normality.
A national survey of cancer patients suggests a quarter (25 per cent) feel isolated to some extent after treatment1. Almost one in three (30 per cent) say they have numerous issues that are not being addressed. These include fear of their cancer spreading and not having the same member of staff they can speak to about all aspects of their condition2.
The Department of Health and Macmillan, along with other charities, have worked together to develop an assessment and care planning process to give patients the best quality of life after surviving cancer. This is a support checklist for doctors and nurses to make sure cancer patients are receiving the necessary practical, physical and emotional support depending on their need."
The recommendations are laid out in Living With and Beyond Cancer: Taking Action to Improve Outcomes, published on 29 March 2013. Gov.uk
This publication aims to support commissioners, commissioning support units and providers to take the necessary actions to improve cancer survivorship outcomes.
It sets out what has been learned about survivorship, including interventions to meet needs that have been tested and are ready to be spread across England. This includes the introduction of an integrated package of:
structured holistic needs assessment and care planning
patient education and support events (Health and Wellbeing Clinics)
advice about, and access to, schemes that support people to undertake physical activity and healthy weight management
Survey results The Quality of Life of Cancer Survivors in England gov.uk/government/uploads/s...
Improving Outcomes: Strategy for Cancer Second Annual Report 2012 northtrentcancernetwork.nhs...
“All cancer patients should receive a 'recovery package' at the end of their treatment offering ongoing support, the government has announced.
Currently as many as three in four patients do not receive any information on coping with the long-term effects of their illness, figures suggest.
The care plans will identify patients' financial, mental and physical needs.
Ministers called on the NHS to take "urgent action" to help cancer survivors in England.
Macmillan Cancer Support, who helped develop the proposals with the Department of Health, said at the moment many patients felt isolated once treatment had ended.
Very few cancer patients are given any written information on recurrence or side-effects of treatment, the charity said.”