Survivors’ needs ignored
A Major new report issued by Macmillan Cancer Support, the Royal College of Anaesthetists (RCoA) and the National Institute for Health Research (NIHR) Cancer and Nutrition Collaboration calls for changes to the delivery of cancer care across the UK, with a greater focus on prehabilitation including nutrition, physical activity and psychological support.
The guidance report, Prehabilitation for people with cancer says there are 1.8 million people in the UK living with cancer (in other words they have finished treatment); 70% of these are also living with one or more other long-term health conditions. Then goes on seemingly to focus on prehabilitation being integrated into the cancer pathway: yet again focussing on newly-diagnosed patients, and totally ignoring the already mentioned 1.8 million survivors.
Its principles are sound, saying
- patients feel empowered and quality of life is improved
- physical and psychological resilience to cancer treatments is maximised
- long-term health is improved.
So why does the report highlight that 70% of survivors have long term problems, then ignores this fact to focus on newly-diagnosed?
Teams have worked together to develop these principles and guidance together with an action plan. This sets out how NHS organisations across the UK can replicate some of the pioneering work already taking place at a limited number of Trusts – all of which have demonstrated how prehabilitation has improved outcomes and reduced the risk of disease progression, and recommends
- interventions targeted at improving physical and/or mental health should start as early as possible and in advance of any cancer treatment (not just the first cancer treatment) – survivors need this too. It’s never too late to start.
- prehabilitation, as a component of rehabilitation, should underpin the whole cancer pathway and is an approach that should be adopted for all people with cancer and continued as long as is needed to deal with long term side effects
- all cancer treatments should be led through cancer multidisciplinary teams (MDT) which should have representation from those delivering prehabilitation, therefore providing oversight of the prehabilitation needs of the person to ensure prehabilitation is taking place – yet survivors constantly report they are abandoned once hospital treatment ends.
- all people with cancer should have a co-developed personalised prehabilitation care plan as part of their overall care – but once hospital treatment is finished, this is often unavailable
- education in nutrition, exercise, psychology and behavioural change, should be integrated throughout all training of health and care professionals – survivors need this to help deal with life after treatment
- services delivering prehabilitation should be co-designed and produced with patients and carers – ensure survivors are consulted
- implementation and effectiveness of prehabilitation should be audited as part of a quality assurance and improvement framework delivered and reported according to recognised standards – N.B. GPs don’t have time, resources or training to deal adequately with long term consequences of cancer treatment
- the Professional Standards Authority, Chartered Institute for the Management of Sport and Physical Activity and the British Association of Sport and Exercise Sciences should work together to define an approach to achieving accreditation and/or regulation for exercise professionals in prehabilitation. – particularly important for survivors
As far as I can see there is nothing about ensuring those living with cancer are consulted, although much of what is recommended can be helpful for us.
June Davis, Advisor for Allied Health Professionals at Macmillan Cancer Support says:
“We want to see prehabilitation implemented soon after diagnosis so that people living with cancer feel empowered to improve their health and get the personalised care they need.
What about survivors, June? Don’t let them dig into savings to get care.
Are survivors going to be able to tap into this programme, or as usual ignored? A lot of effort went into devising an HNA (Holistic Needs Assessment), sold to us the answer to on-going care. My mole at The Marsden says the nurses laugh at it – not surprising, when tick box questions ask ‘what was our mood a week ago’.
My reply would be unprintable.
Dr Mike Grocott, RCoA council member and Joint Project leader
“Prehabilitation offers people with cancer personal empowerment at a time when they often feel that they have little control over what is happening to them. As a consequence, we see better quality of life as well as improved resilience to the effects of cancer treatments resulting in fewer complications. All this adds up to happier patients experiencing real health benefits.
Really Mike? Valerie tells me “ten years on, I have a dozen long-term problems (osteoporosis, lymphoedema, hot flushes, diarrhea alternating with constipation. etc)”. She has to go privately for help, as her GP can’t get her an NHS appointment for many problems.
Dr Lucy Allen, Head of Collaborations, National Institute of Health Research, another of the report’s authors, says: “ people with cancer face many challenges”. What she goes on to say can also refer to the 1.8 million survivors – so what is being done for us?
THOSE WRITE REPORTS SHOULD THINK THROUGH WHAT IS GOING TO HAPPEN AFTER CANCER DIAGNOSIS. Long term side effects don’t finish the moment you walk out the hospital door. For Survivors it can mean a lifetime of trying to get the treatment we still need, for conditions such as Neuropathy, Osteoporosis, Lymphoedema, fatigue, etc; often presenting years after treatment ends. Why should survivors have to plead for what Europeans and Americans get as part of on-going care?
P. S. Outpatient Group comments
It wasn’t difficult to get a normally-morose group coming up with suggestions:
- GPs shouldn’t be expected to know about our complex conditions. I have to research whom I need to see and ask him to refer me. Why can’t we self-refer and save everyone’s time? They can in Europe.
- The National (now Royal) Osteoporosis Society are brilliant. I ask their Nurses, not my GP
- Lymphoedema comes as a result of cancer treatment. Yet we are treated as though it is our fault. Many services have been withdrawn
- I want more attention than I get when I present with long term side effects from the drugs the doctors promised would help me with cancer. Don’t brush me off – DO something helpful.
- Now I understand why fellow patients say they don’t want any more treatment. CNS are supposed to help us with all our problems but they don’t exist.