How you can shape care for patients and their families

A generation ago, a cancer diagnosis was seen as a death sentence and treatments were lengthy and brutal.

Today, earlier diagnoses due to improved screening programmes and public awareness, plus medical advances, have transformed the landscape of cancer care. But the illness is now affecting more of us than ever.

Latest Scottish Government statistics show there are around 30,000 new cases of cancer every year. This is expected to rise to almost 35,000 annually between 2016 and 2020 as the population ages.

Now, in the first survey of its kind The Herald and Macmillan Cancer Support are teaming up to help compile a comprehensive map of cancer services in Scotland.

While there are many surveys which gather statistics such as waiting times and survival rates for cancer sufferers, a comprehensive survey of the quality of experiences of people across Scotland, through each step of the illness, is a first.

All this week, The Herald will feature a series of articles examining the experiences of patients and their carers at every step of the cancer journey. In the coming months, the survey results will be published in the paper.

Dr Elspeth Atkinson, Macmillan Cancer Support’s director for Scotland, is appealing directly to Herald readers.

“We want to know about the cancer treatment and support services, the positive as well as the negative, and we will use that information to develop better services in future, and meet gaps,” she says.

“The good thing is that more people are living a lot longer after cancer diagnosis, maybe 10, 20, 30 years. But what people are telling us at the moment is that they are not getting all the services they need during that time.”

As the needs of cancer patients change, the charity, which pioneered specialist cancer care, is broadening its remit.

“Our aim is to help and support people affected by cancer right through from diagnosis until wherever that journey takes them,” says Dr Atkinson.

“One of our main challenges is trying to support the increasing number of people who are diagnosed every year.”

Later this week, a new service launches in South Lanarkshire to help young people aged from 10 to 14 cope with bereavement. The eight-week programme, called Give Us a Break, was the result of a grant of £50,000 from Macmillan.

“Macmillan is still doing palliative care and medical care but what we are looking at particularly at the moment is living with cancer – supporting people and their families after their treatment and through the many years they are living after a diagnosis.”

Macmillan research estimates that there are two million people in the UK living with or beyond a cancer diagnosis – almost 180,000 in Scotland.

Macmillan bases its policies, campaigns and new services on information gleaned from cancer sufferers, says Dr Atkinson. “We constantly want to hear about real experiences because that is what we base our work on. We want to develop things that people actually need.”

Macmillan was set up in 1911 to provide information to patients, doctors and the public about cancer. In the 1970s, it pioneered the idea of specialist cancer care and now there are 4100 Macmillan health professionals in the UK including nurses, doctors, radiographers and dietitians.

Macmillan launched many of its current services in response to previous surveys. Information centres, both in hospitals and, more recently, in community settings, were introduced to address the need for information between hospital appointments, and emotional support.

A survey carried out by the charity in 2006 revealed just how large financial worries loomed for cancer patients.

“While the biggest impact is obviously the diagnosis itself, and people are worried about their health and the treatment, very close to that, they are very worried about money,” says Dr Atkinson. “People often can’t work when they’re getting treatment and if that’s the main income coming into the house it is particularly worrying.”

In response, benefits advisers were introduced to Scottish centres to allow cancer sufferers to get financial advice and find out what kind of benefits they are entitled to.

More recently, the charity has campaigned to end fuel poverty for those recuperating at home. “When we looked at the grants we were giving in Scotland, more than half were to help people pay their fuel bills.

“When people are unwell they are at home more and need to be warmer so their fuel bills are high.”

Macmillan has also called on the government to extend the winter fuel payment to cancer patients under 60 years old.

Readers of The Herald can now help shape future campaigns by sharing their own experiences and subsequently affect the lives of tens of thousands who will be diagnosed with cancer in Scotland within the next years.

‘I thank God the doctors helped me in time’

Rebecca McQuillan

More than 500 people a year are diagnosed with it in Scotland, the west of Scotland has the highest rate in Britain and it’s on the increase. Yet mouth cancer is little discussed and its symptoms often go unrecognised - until it’s too late.

This month a major campaign, backed by the British Dental Health Foundation, hopes to raise awareness of mouth cancer, so that it can be detected earlier and more lives saved. The disease is responsible for more deaths than cervical and testicular cancer combined.

Teresa Callery, 54, a housewife from Glasgow, knows from experience how important it is to act fast.

Mrs Callery was 52 when she developed ulcers in her mouth that would not heal. A regular visitor to Glasgow Dental Hospital, she was given creams to clear them up and when those didn’t work, she had an X-ray and five biopsies over two years. The biopsies repeatedly came back negative, until the last one, at the dental hospital, in November last year. “They discovered it was cancer. I could see the shock on my doctor’s face,” says Mrs Callery. She had never smoked or drunk, two risk factors associated with mouth cancer.

Mrs Callery was admitted to the Southern General for surgery two weeks later. She had glands in her neck, several teeth and half of her tongue removed.

The operation was a success and Mrs Callery did not require radiotherapy or chemotherapy. A year on, she is under regular observation but is hoping she has seen the last of the cancer.

She is determined to inform others about how to spot the signs. “If you have even the smallest sign, it doesn’t matter if it’s a wee light patch or a red patch, or how small it is, go and see your doctor or your dentist. Don’t delay. I feel very lucky and I thank God the doctors got the cancer in time.”

If mouth cancer is detected early, then in more than 90% of cases the person will survive more than five years. Yet a majority of cases are currently detected at a late stage. At present, the five year survival rate is less than 50%.

Signs to look out for include a persistent white or red patch in the mouth or throat; unusual lumps or swellings; and ulcers that will not heal after three weeks. Other symptoms include persistent pain; unusual oral numbness or bleeding and speech problems.

Jeremy McMahon, a consultant in oral and maxillofacial surgery at the Southern General Hospital in Glasgow, says there is a link between mouth cancer and drinking and smoking.

“If you smoke but don’t drink, you will increase your risk of mouth cancer by six to 10 times; if you drink but don’t smoke, you are increasing your risk by about five times; if you do both together, it multiplies to more like 20 to 30 times the risk,” says Mr McMahon.

It is not known exactly why the prevalence is so high in the west of Scotland, though there is a link between deprivation levels and the incidence of mouth cancer.

Quitting smoking, moderating drinking, and eating a diet rich in fresh fruit and vegetables, can have a protective effect. Mr McMahon stresses that early treatment can be “highly effective”.

Macmillan Cancer Support is appealing directly to readers of The Herald to help compile a comprehensive map of cancer care in Scotland based on their own experiences. Please download a copy of the survey using the link at the top right of this page , print out and send to:

Macmillan Cancer Support,
Freepost RRSA-LLLJ-CHYU
Edinburgh
EH2 3JD