Transforming Cancer Care in Scotland

Scotland’s cancer care system is facing unprecedented challenges. There are currently around 220,000 people living with the impact of a cancer diagnosis in the country. This is set to reach 360,000 by 2030.

A diagnosis of cancer can affect every aspect of life, bringing emotional, financial, practical and physical problems that can last long after treatment ends. However, we know that too many people aren’t getting the support they need during treatment.

The current cancer care system just wasn’t set up to support the huge numbers of people living with the wide-ranging and long-lasting effects of cancer.

How we're making this happen

Recovery Package

Macmillan worked with people with cancer, carers, cancer clinicians and social care professionals to develop new models of care and support that place the needs of the person with cancer at the centre. Based on this work we developed the Recovery Package.

Macmillan wants everyone with cancer to receive its Recovery Package. Made up of four key elements, it aims to make sure everyone with cancer gets all the support they need for as long as they need it. The four key interventions of the Recovery Package are:

A Holistic Needs Assessment (HNA) and care plan. The HNA is used by health and social care staff to talk to someone with cancer to find out about their emotional, practical and financial needs. The care plan sets out how the person will get the support they need.  Macmillan want people to be offered an HNA at key times, for example at diagnosis and end of treatment.  Both health and social care services have a role to play in making sure people are offered the assessment and that it’s followed by coordinated care.

Cancer care review. This is a discussion between the person with cancer and their GP or practice nurse that takes place within six months of a cancer diagnosis. It’s a chance for the person with cancer to talk about the kind of support they need.

Treatment summary. This is a summary of the illness, treatment and side effects. It also outlines signs of recurrence to look out for. It should be given to the person with cancer and their GP and shared with other health and social care services as required. The aim of it is to make sure everyone involved in supporting the person with cancer, and the person themselves, has the information they need.

Health and Wellbeing events. These are events in local areas where health and social care services and charities come together in one place so people with cancer can find all the support they need in one place.

Personalised medical aftercare

Macmillan’s work with people with cancer, carers and clinicians, has led to the development of a new approach to hospital follow-up care for those who have finished cancer treatment.

Our new personalised approach means people get rapid access to their cancer teams whenever they need to see them, for example if they’re concerned about the cancer returning.

They are also offered all the other kinds of support they might need, from benefits and housing advice to counselling and help with mobility problems.

This is a move away from the traditional one-size fits all system. Under this system, often the only formal support someone finishing treatment would receive was a yearly appointment with a cancer consultant. This was normally at a pre-set time chosen by the hospital and wasn’t based on an assessment of what the person with cancer needed or wanted.

The new approach is about treating people who’ve had cancer as individuals and giving them the care and support they need and want.

This model is now being used across the UK, including in Scotland, and evidence is mounting that it’s better for people with cancer and helps the NHS focus on people with complex needs.

The Scottish Government and the three cancer networks support this new model of aftercare and have tasked every health board in Scotland with rolling it out.

Why Macmillan wants to support improvement in Scotland’s cancer care system

Research has found:

  • 80% of people in Scotland who have cancer are £420 worse off after diagnosis (Source: Cancer’s Hidden Price Tag [PDF]). Despite this, only half (51%) of those who would have liked information on financial help and benefits advice from hospital staff received this (Source: Cancer Patient Experience Survey Scotland).
  • 76% have social care needs, including needing help making meals or leaving the house (Source:Hidden at Home report [PDF]). Despite this, among those who needed it, only 54% got enough care and support from health and social care professionals during treatment and only 45% got enough care and support after treatment (Source: CPES).
  • Only 57% said that family or people close to them definitely got all the information they needed to help care for their patients at home (Source: CPES).

There is often support available from health and social care services and charities like Macmillan. But in most of Scotland, there’s no formal process in place to identify people’s support needs.

The Scottish Cancer Patient Experience Survey (CPES) found that only 22% of people diagnosed with cancer were given a written care plan, despite the survey showing that those who had a care plan were more positive about their experience.

Too many people with cancer struggle alone. That lack of support can become even more apparent when treatment ends.

Often the only formal support someone finishing treatment will receive is a once or twice a year appointment with a cancer consultant, normally at a pre-set time chosen by the hospital.

In many areas people are called for these ‘follow-up’ appointments even if their scans and tests are clear and neither they or their cancer teams have any concerns about their health.

Many people tell us they find the appointments stressful and disruptive. They’d rather be able to talk to their cancer care team when they needed them, rather than at a pre-set time chosen by an algorithm.

What they do want is to be offered help dealing with all their emotional, practical and financial needs.

The cancer care system is Scotland needs to change. As the number of people living with cancer grows, we need to move away from a one-size-fits-all system that doesn’t treat people like individuals or respond to their needs.

That’s why Macmillan is using its financial investments and influence to create a better system. One where everyone with cancer gets access to the best clinical care possible, alongside all the emotional, practical and financial support they need from the moment of diagnosis onwards.

Our programmes - Impact and evidence

Macmillan want everyone with cancer in Scotland to be given personalised aftercare alongside the Recovery Package. We’re funding two major programmes of work to spread these new models of care by demonstrating the positive impact they have on people with cancer, as well as how they can easily become part of everyday practice within health and social care.

Transforming Care After Treatment (TCAT)

The £5 million Transforming Care After Treatment (TCAT) programme is a partnership between Macmillan, the Scottish Government, the NHS, and local authorities. TCAT is made up of 25 projects all demonstrating how different elements of the Recovery Package and personalised medical aftercare can be offered to people with cancer in a variety of different health and social care environments.

Read more about TCAT on our web page.

Improving the Cancer Journey (ICJ) 

Macmillan’s Improving the Cancer Journey (ICJ) programme focuses on offering everyone with cancer an Holistic Needs Assessment and care plan, followed by coordinated support. Macmillan’s first ICJ service was set up in Glasgow in February 2014. 

Find out more on our ICJ page.

What's next for the TCC programme?

We want health and social care decision-makers across Scotland to look at the strong and ever-growing body of evidence for the Recovery Package and personalised medical aftercare and embed it into everyday practice within health and social care.

Macmillan will continue to spread these new models of care via Improving the Cancer Journey and Transforming Care After Treatment programmes, using our investment and influence to make sure Scotland’s cancer care system is ready to meet the needs of the vastly growing number of people with cancer.