Janice Preston: Cancer patients need more than just treatment

Alan Rickman is one of the celebrities who recently died of cancer. More people are diagnosed with the disease every year. Picture: John Devlin

The recent deaths of celebrities Sir Terry Wogan, David Bowie and Alan Rickman from cancer have put the risks of dying from the disease very much in the spotlight.

However, even though more people are being diagnosed with cancer every year, the number of those surviving the disease is also increasing.

This leads to a different set of problems and despite best efforts by the professionals involved, pressures in the current cancer care system mean it often can’t provide the support patients need to cope or recover.

In Scotland, there are currently around 220,000 people living with cancer. This number is expected to rise to 360,000 by 2030.

While it used to be thought of as a death sentence, now only around half of those diagnosed with cancer in Scotland will die – and they may have many months or even years before they do so.

Unfortunately though, many of those living with cancer will be coping with the long term impacts of the disease – ranging from the physical and emotional to the financial and practical – that can last long after treatment ends.

And too often they won’t be offered the help they need to deal with these problems, leaving them to struggle on alone.

A Macmillan study in 2013 found 80 per cent of Scots cancer patients were £420 worse off after diagnosis. Another study in 2014 discovered a third of Scots with cancer were lonelier after diagnosis and 76 per cent struggled with practical issues such as washing themselves or leaving the house.

There is still a perception among many that helping people with cancer is about early detection and better treatments. While these issues are undoubtedly important, treating someone with cancer shouldn’t just be about treating the illness. Often it is after treatment ends that the full extent of the problems cancer has caused becomes apparent.

Many people 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 some patients say it’s like falling off the edge of a cliff or as if they have been abandoned by the system.

Often health services, the local council social care teams and charities do provide the services people with cancer need. However there is no easy way for patients and carers, or even their cancer team, to find out about all the help available.

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 the long term impacts of their illness prevent them living life as fully as they would like.

Macmillan wants to make sure no one in Scotland has to face cancer alone. This is why we are asking the Scottish Government to publish a cancer plan that sets out how people with cancer will get the best possible emotional, practical, medical and financial support from the moment of diagnosis onwards.

We also want everyone with cancer to be offered a Holistic Needs Assessment followed by a written support plan.

In addition, we’re calling on the government to ask patients about their experiences of care and support via a regular Cancer Patient Experience Survey. This would bring Scotland into line with England, Wales and Northern Ireland and help to shape the future direction of cancer care in our country.

If we focus solely on treating the cancer and ignore the collateral damage it leaves behind, we condemn many people to years of feeling alone, struggling with physical side effects, depression and debt, unable to get back to work or engage in life again.

This isn’t just about end-of-life care – although that does need to be improved. It’s about making sure no one spends their final years or months feeling alone when there are support groups and counselling services available. It’s about ensuring people aren’t worrying about paying their rent when specialist money and debt advisers can help, or struggling without the right housing adaptations when a call to the right person in the local council could help make life much easier.

Saving lives and cutting waiting lists grab the headlines, but to focus on this to the exclusion of providing all the other help people who have had a cancer diagnosis need, is condemning them to face their illness alone. Macmillan want to make sure this doesn’t happen.

• Janice Preston, head of Macmillan services for Scotland

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