Why our cancer care must go further

Race for Life helps raise cash for cancer research. Picture: Phil Wilkinson

Survival rates are improving but sufferers face major problems once they leave hospital, from loneliness to debt, says Janice Preston

MORE people than ever before are surviving cancer in Scotland. While that is great news, the bad news is that many people are left with long-term problems as a result of the illness or treatment, and our outdated cancer care system means they are not always getting the support they need to recover or cope.

Recent figures from Macmillan Cancer Support estimate 220,000 people in Scotland have been diagnosed with cancer and this is expected to rise to at least 360,000 in just 15 years.

We know many of these people will be coping with the long-term impacts of cancer.

These can range from the physical (incontinence, extreme fatigue and pain) and emotional (anything from feeling low to clinical depression) to the financial (the bills don’t stop just because someone has cancer).

Recent research from Macmillan also found that 76% of those diagnosed with cancer in the last 10 years have practical or personal care needs, from being unable to leave the house alone to struggling to wash or cook for themselves. Often, support is available to those trying to live their lives as fully as possible after a cancer diagnosis and treatment, but unfortunately patients and families tell us they don’t know where to find it.

There is currently no requirement for patients at the end of treatment to be asked what kind of help they need or to be told where to get it.

For many patients the endless – and often oddly comforting – round of hospital visits and conversations with health professionals is replaced with the instruction to come back in a few months for a short check-up.

Patients may be given a phone number to call if they need medical help but often they don’t want to disturb busy health professionals or the problems they have aren’t medical at all but emotional, financial or practical.

For some, those experiencing few physical side-effects, who are coping well emotionally and who have family and friends around them to offer support, this may be fine. But for those struggling with the great many issues cancer can leave behind, from extreme fatigue and depression to mounting debt, this isn’t what they need. It’s not surprising some patients say they feel abandoned.

The truth is that the current system of care after treatment just isn’t working as well as it should. We need a system that identifies and meets all the support needs of a patient after they finish treatment, whether they need regular contact with a cancer expert or help to deal with the emotional toil of being diagnosed with a life-threatening disease.

That’s why we at Macmillan Cancer Support have invested £5m in the Transforming Care After Treatment (TCAT) programme, a partnership with the Scottish Government, the three cancer networks and local authorities.

This programme is funding more than 26 pilot projects within the NHS and local authorities across Scotland.

Each project is different but all focus on identifying the kind of support patients need and putting a plan in place to make sure they’ll get it, mainly through a Holistic Needs Assessment and care plan.

The TCAT projects are also looking at ways to improve the communication and co-ordination of care between hospital health care teams and the health and social care support available in the community.

There has been huge support for the TCAT programme from the Scottish Government, NHS and local councils, but we are under no illusions.

Aiming to transform forever how patients are supported is a huge task; however it’s an absolutely vital one.

More people are surviving cancer and that’s good news. But it’s premature to celebrate if those people are living only half a life, suffering from depression and anxiety, struggling with pain and fatigue and unable to cope at home, terrified they’ll lose their home as the bills pile up. These people deserve the best possible support to help them get their lives back.

That’s why Macmillan are urging those working throughout health, social care and the third sector to make a commitment to use the evidence from TCAT as it emerges, to improve the support offered to patients and their families. Unless we do so, Scotland will continue to be a place where far too many people face cancer alone.

• Janice Preston is Macmillan Cancer Support’s general manager in Scotland.