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Caught in a Maze

Clare Woodford

Clare Woodford, Senior Policy Advisor at Macmillan, highlights the findings of a new report showing that personalised, integrated care is essential for people with long-term health conditions, particularly during the pandemic, and as we plan our way out of it.

  • Integrated care
  • Person-centred care
  • COVID-19
  • Communication and administration

Finding a way through the maze

Integrated care has become a ‘buzzword’ in health and care discussions. But what does it mean for people with conditions such as cancer, and why is Macmillan looking at it now – when health services are under such pressure?

Macmillan’s new report: ‘Caught in the Maze’ uses National Voices’ definition to capture [INTERNAL LINK]what personalised, integrated care means for patients:

“I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me.”

Why is it important?

Integration is the ‘glue’ that binds different parts of the health and care system together. Like a good theatre production, when everything is happening seamlessly behind the scenes we probably don’t notice, but we notice when it is not. People get ‘caught in the maze’, left unaware of when their next appointment is, or where their test results are, which can delay treatment. People with cancer we interviewed described ‘being in the dark’, or ‘left to sink or swim’. And support can be even more fragmented for people with multiple conditions.

During the pandemic, when so many have had their treatment disrupted and people are worried about accessing services, we need this personalised, joined-up approach more than ever. However, this crisis has exposed the cracks in the system. Many people with cancer said their GP was unaware that they had been discharged from hospital or about their ongoing health needs. Care often seems to be organised around hospitals’ convenience and not the extremely unwell person.

But it’s not all bad. We heard from service leaders that the response to Coronavirus has made it easier to talk to social care colleagues, the boundaries between primary and secondary care teams have disappeared and rapid investment in IT systems has allowed professionals in different NHS organisations to access patient records more effectively.

What needs to change?

  • Lots of people told us that a ‘care navigator’, for example, a social prescriber, to follow up appointments or signpost to services, really helped. We need to make sure everyone can access this support.
  • We still need to get better at treating the person not the illness. The strain of having a positive test and treatment for cancer and/or diabetes, heart disease and many other conditions can trigger a whole range of physical and mental health needs. We need services to be able to work together around the individual, whether that’s GP/primary care teams, social care or end of life care. Reforms to local services, proposed by NHS England, could be an opportunity to better connect care.
  • Our health and social care professionals are incredible – but there just aren’t enough of them. We need the Government to publish a fully-funded long-term workforce plan including wellbeing and career support to help our exhausted staff keep going. There is a lot that cancer services can learn from conditions such as heart disease and diabetes about collaboration across different teams and closing gaps between primary and secondary care.
  • Finally we need services to be shaped by the expertise and experience of the people who use them.

The NHS faces a long and difficult road to recovery. We cannot and should not try to wind back the clock to before the pandemic. Instead, as awful as this last year has been, we must try to learn the lessons, and use this ‘crossroads’ point to reassess how we deliver care in the future, to ensure that it is joined up and patient-centred.

Macmillan’s new report ‘Caught in the maze: delivering personalised, integrated care’ can be accessed here.


Clare Woodford is Senior Policy Adviser at Macmillan Cancer Support. Her career includes senior policy roles at UK and international health organisations, including Carers UK and the British Medical Association working on long-term conditions and health and care systems.