PRDA has made the following written submission to the second Inquiry into the England Cancer Strategy by the All-Party Parliamentary Group on Cancer.
The text of the submission is as follows:
“The Pelvic Radiation Disease Association is the only UK charity that is solely dedicated to the needs of people living with the consequences of cancer treatment. We aim to give support and information to pelvic cancer survivors and to inform and educate health professionals.
Pelvic Radiation Disease (PRD) is defined as any, brief or long-lasting problems, which can be anything from very mild to very severe, arising in normal, noncancerous tissues and which start as a result of radiotherapy to a tumour in the pelvis.
PRDA’s submission relates to how it believes some of the key challenges of the Strategy have been addressed, and what needs to happen to make more rapid and lasting progress towards improving outcomes. We would welcome a renewed focus by the Transformation Board on the needs of people with, or at risk of, consequences of pelvic radiotherapy and other cancer treatments.
1. Radiotherapy infrastructure
PRDA welcomes the significant investment being made to modernise radiotherapy equipment in the NHS in England, to enable radiotherapy treatment to be given with the most advance techniques that help to minimise side effects from treatment. This should help to reduce the incidence and severity of pelvic radiation disease in future, however it will not eliminate it.
What must also not be forgotten is the hundreds of thousands of people treated with pelvic radiotherapy in the past, which, for some, has resulted in permanent tissue damage and ongoing debilitating and distressing symptoms that affects their quality of life.
We also understand that there will be a redesign of the service model for radiotherapy delivery.
PRDA proposes that:
(a) The programme of radiotherapy equipment upgrade must be accompanied by data
collection on both short and long term side effects. This is so that commissioners can
measure whether the investment in equipment and service redesign has been effective in
reducing side effects and improving quality of life, as well as improving survival, patient safety and patient experience.
(b) The service redesign process ensures that attention is also paid to other clinical
techniques that can help to reduce the side effects of radiotherapy. For example
Randomized Controlled Trial of Dietary Fiber for the Prevention of Radiation-Induced
Gastrointestinal Toxicity During Pelvic Radiotherapy. L Wedlake et al. Am J Clin Nutr. 2017
2. Living with and beyond cancer
PRDA welcomes the progress being made towards the roll out the implementation of the
Recovery Package, Stratified Pathways and the Quality of Life metric. All these initiatives will
continue to move the cancer agenda from being solely about increased survival, to one where cancer services are as equally focused on quality of life.
However, while the core purpose of these initiatives is to identify people who have, or are at risk of, long-term consequences of treatment, there seems to little or no progress by NHS England towards ensuring that these people receive timely and effective treatment or preventative interventions for their consequences of treatment. At PRDA, we regularly hear
from people who have devastating permanent damage to their bowel, bladder and sexual
functions, but who are unable to receive the right treatment due to barriers in the system and to the extremely variable and patchy provision of care.
The Cancer Strategy work does not seem to currently include one of the key LWABC actions in the May 2016 Implementation Plan, namely that “NHS England and partners will review good practice in approaches to reducing and managing long term consequences of treatment to produce improved guidance to the system to encourage spread and adoption of cost effective practice”. This is an extremely important objective to ensure that professionals, both within oncology and beyond, understand what can be done to better support people with chronic problems many years, even decades, after treatment.
We note that, in the guidance for bidding for Cancer Strategy transformation funding, that Alliances/Vanguards should have demonstrated “that services are in place to respond to needs identified through assessment and care planning, including rehabilitation services to support return to work and the reduction and management of consequences of treatment”.
Unfortunately, this guidance did not suggest which consequences of treatment should be
prioritised for service development. Nor how these services will be funded long-term.
PRDA proposes that:
(a) Work is started immediately on the Strategy Implementation Plan existing objective to
review good practice in managing all consequences of treatment, as mentioned above.
(b) As a number of evidence-based clinical guidance documents on consequences of
pelvic radiotherapy already exist, these should be disseminated and embedded now as an essential and integral part of all local Recovery Package and Stratified Pathway work plans on improving follow up after pelvic cancer treatment.
(c) Local service development for consequences of treatment should prioritise the
management of bowel difficulties after pelvic cancer treatments, to ensure equity of
access to the right gastrointestinal and dietetic care. This could transform the lives of many
people whose quality of life is affected by ongoing serious bowel problems.
(d) Work is undertaken to ensure that services for consequences of treatment are funded
through a tariff or other system that ensures these services are properly recognised and
supported alongside the treatment of cancer itself.
(e) Alliances’/Vanguards’ plans for Recovery Package and Stratified Pathway implementation should also ensure that information for patients on the short and long term effects of pelvic radiotherapy is provided at multiple time points during and after treatment, so that people are well-informed and can self-manage where appropriate, for example with dietary changes or exercise.
2nd August 2017