Macmillan's Improving the Cancer Journey in Glasgow is hailed as the 'holy grail'

The academics behind the evaluation of the Improving the Cancer Journey service now say policy makers should use the project as a working model for other local authorities to follow.

Funded by Macmillan Cancer Support, ICJ was set up in response to people with cancer telling them they had no idea where to turn for emotional, financial and practical help after diagnosis.

Run by Glasgow City Council, the service was the first in Scotland – and it’s believed the UK – to proactively contact people newly diagnosed with cancer to offer them support.

Six years on, and the evaluation of the service by Edinburgh Napier University, says the Glasgow Improving the Cancer Journey services should be a model for the rest of Scotland.

Professor Austyn Snowden, who evaluated the project alongside researcher Jenny Young, said: “One of the main reasons the team and I wanted to evaluate ICJ was because it sounded as if it could be the ‘Holy Grail’ of health and social care services - a genuinely joined up, proactive service successfully helping people in distress with whatever was really bothering them.

“To our delight it turned out that ICJ was exactly this. Policy makers and service commissioners now have a working model to follow. I sincerely hope they do so.”

Between launching in February 2014 and June 2020, the service has helped around 7600 people with cancer in Glasgow with 37,000 issues, from debt to depression.

The top concern was money and housing problems, even among those receiving end of life care, followed by fatigue, mobility problems, breathing difficulties and worry, fear and anxiety.

An analysis of the data of 1142 clients, found the severity of their concerns dropped almost by half, from 7.1 out of 10, to 3.8 after support from the Improving the Cancer Journey service.

Anxiety and depression was particularly positively impacted by support from the service.

A deeper analysis of the concerns of 450 people, found the percentage of people who described their issues as “extreme”, dropped from almost a fifth (19%) at their first needs assessment, to just five percent at their second, after support from the service.

The percentage of people who reported they weren’t anxious or depressed at all, increased from 22% during their first assessment, to 36%.

Martin Morgan was supported by the service after being diagnosed with colorectal cancer in August 2018.

The 38-year-old was “shocked” by the diagnosis and then left completely floored by the effects of treatment, which included a 14 hour operation and six months of chemotherapy.

ICJ helped him with practical, financial and emotional aspects of coping with the illness, including helping to get a Blue Badge for his car and to navigate the benefits system.

Martin, who lives with his partner Mari and their dog Puddle, said: “It came completely out of the blue. It’s not something you expect at my age but it turns out I have a genetic predisposition to it.

“Cancer and the treatment hit me like a tonne of bricks. It was months before I was anything approaching normal.

“I had just finished my post-grad in adult teaching and had a lined up a job as a lecturer at City of Glasgow College that I never got to start. I didn’t know where to start with benefits. There’s no way I could have filled in the forms myself. They’d have been difficult enough at the best of times but at that stage there was no way I could have done it.

“ICJ were brilliant. They took the stress out of everything.

“I honestly don’t know how I’d have coped without ICJ.”

While the service has proven invaluable to patients, it has also been given the gold seal of approval by medics.

A survey of 55 cancer nurses and doctors in Glasgow found 92% agreed referring their patients to ICJ improved the patient experience.

Almost three quarters agreed putting their patients in touch with the service saved them time as they no longer had to try to support people with issues like claiming benefits or poor housing, freeing them up to focus on people’s clinical needs.

Lung cancer nurse Aggie Mackay, who works at Glasgow Royal Infirmary, said the service is invaluable to both patients and staff.

She said: “Every single member of that team is amazing. They have such care and empathy for our patients and know how to support them in certain areas that we wouldn’t have a clue where to start with.

“We have really high patients numbers because people are living longer with cancer.

“I have been doing this job for 13 years and the pathway is so much more complex. There are a lot of things I could do when I started that we just don’t have the time to do now so the Macmillan staff take on things that don’t necessarily need to be done by nursing staff.

“Cancer is a worrying and expensive illness to have so Macmillan helps to relieve some of those burdens so we and the patient can focus on the treatment side of their care.”

Since the Glasgow service launched in 2014, similar services have launched in Fife, Dundee, Renfrewshire and West Dunbartonshire.

Kirsty Whiteside, development manager for ICJ, said: "The service we provide is different for every single person that we support and that's as it should be because we're all unique and individual.

"As the world changes we will change with it and continue to develop and adapt services that meet our clients' needs."

Macmillan’s head of services in Scotland, Janice Preston, said: “We launched this service after people with cancer told us that while medical treatment was good, too often they struggled alone with the problems cancer caused, from money worries to mental health issues. It was down to pure luck whether they would get help, with many having no idea where to begin looking for support.

“This report is a timely remind that even with coronavirus taking up considerable time and attention, our promises to people with cancer can’t be forgotten.

“Something as simple as getting in touch with people to offer them help with any of the problems cancer has caused is life-altering.

“The results of the evaluation are very clear. Personalised care and support measurably improves people’s lives, whether the person has a treatable cancer and wants help getting back to normal, or has an incurable cancer and needs help making their final months as good as possible.

“Everyone with cancer in Scotland deserves the same support and it’s absolutely vital the pressures of coronavirus don’t stop that.”

Last year Macmillan and the Scottish Government agreed to jointly fund an £18m project to expand ICJ across the country.

City Treasurer Councillor Richard Bell said: “While this evaluation illustrates the real, human value of Glasgow’s partnership with Macmillan – it is also a stark reminder of the challenges facing people with a cancer diagnosis.

“Glasgow pioneered the principle that nobody need face cancer alone some time ago – but that commitment is of particular importance today, during a pandemic that could otherwise leave people isolated from the support they need – or exacerbate concerns about the financial impact of their illness.

“I’m delighted to see the service continue to deliver real and meaningful improvements to the quality of life of people living with a cancer diagnosis here in Glasgow – and to see the city’s success pave the way for more people to be supported all across Scotland.”