Here at Macmillan, our aim is for everyone who has cancer in Scotland to get the best quality treatment and care possible. Yet, unfortunately our experience in trying to deliver this has shown that only treating the illness isn’t enough.
This is because cancer has a huge impact on every aspect of a person’s life. It can bring potential emotional, financial, practical and physical problems that can last long after a person’s treatment has ended and too often people aren’t offered the help they need to deal with these problems – even though it’s often available.
The truth is that whether or not someone gets the help they need is too often down to luck, and this simply isn’t good enough. Macmillan believes everyone diagnosed with cancer deserves the highest quality of care and support available and that this is too important for this to be left to chance.
Our call’s to the next Scottish Government reflect this, which is why we’re asking the new Government after May to publish a cancer plan which puts better support for cancer patients at the top of their agenda.
The plan should set out how people with cancer will get the best possible support they need, from medical care and practical help, to financial aid and emotional support, from the moment of diagnosis onwards. And, if it is going to address the issues of the ever growing number of people being diagnosed with and surviving cancer, it should also be fully costed and successfully implemented across the Scotland.
It is also essential that everyone with cancer is offered an assessment of their physical, emotional, practical and financial needs and that this is followed by a written support plan.
Currently, there is no Scotland-wide requirement for cancer patients to be asked about their wider support needs or even directed onto any kind of support, which means that in reality, while some people get the help they need, others cope alone unaware help is just a phone call away.
By making it compulsory for every patient to be offered a needs assessment and written care plan which sets out how their support needs will be met, it means we can make sure this game of chance no longer exists and that cancer patients or someone who has finished treatment gets the help they deserve.
We already have a Holistic Needs Assessment (HNA) which is being used in parts of Scotland including Glasgow through the Macmillan-funded Improving the Cancer Journey service and we’d like to see this tool rolled out across the country to make sure that people have the same access to support and care, no matter where they live.
Thanks to the advances in cancer detection and treatment more Scots than ever before are surviving cancer. Whilst this is heartening to see this, it is not without its problems. Patients often tell Macmillan that while treatment can be very hard, their schedule of appointments and regular contact with their cancer care team makes them feel cared for and supported.
After treatment ends however, some patients talk of feeling as though they’ve been abandoned by the system. Left alone to deal with problems ranging from debt and depression to fatigue and pain, some people find their problems increase until they can no longer cope. Others find ways to deal with their issues but find the long term impacts of their illness prevent them living life as fully as they’d like.
Macmillan wants to make sure no one in Scotland needs to face any aspect of cancer alone and with this in mind, we believe it is vital that our NHS and social care systems are able to meet the needs of the growing number of survivors with long term problems.
Our Transforming Care After Treatment programme sees Macmillan working with the NHS and social care to address this issue, and we want the next Scottish Government to commit to using the evidence from the programme to vastly improve care after treatment across Scotland.
Finally, we want to ask cancer patients about their experiences of care and support via a regular Cancer Patient Experience Survey, bringing Scotland into line with the other countries in the UK.
Survival rates and waiting lists are important measures of our cancer care system, however numbers and statistics can only tell us so much. They can’t tell us whether those diagnosed with cancer were told sensitively. They can’t tell us whether they felt that they were respected by the staff they encountered, or whether they felt they received the treatment and support that was right for them.
A Cancer Patient Experience Survey asks thousands of people who had have cancer their views of the care and support they receive, and its results would provide invaluable insight into where our cancer care system is doing well and where it must be improved.
Although the Scottish Government did agree to the first patient experience survey last year (the survey was jointly funded by Macmillan with results set to be published in the summer of 2016), Government has not yet committed to carry it out again, unlike the Governments in England, Wales and Northern Ireland.
By having a regular survey of cancer patients the Scottish Government could use the data to guide future cancer strategies and services, helping to ensure everyone gets the best quality treatment and care possible.
by Peter Hastie
Peter Hastie is Macmillan Scotland’s Policy and Public Affairs Manager. His job finds him lobbying the Scottish Government and Scottish Parliament to make sure that people with cancer get the best possible support. Peter is also the Secretariat for the Scottish Cancer Coalition.