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England’s NHS to pilot measuring quality of life for cancer survivors in 'world first'

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The quality of life for cancer patients is be tracked as part of plans to “radically” improve care and support for people once treatment ends, NHS England has announced today.

The move is designed to drive improvements in aftercare, including personalised plans outlining extra support that may be needed, such as help at home or financial advice, on top of physical ones.

“One of our key ambitions is to put cancer patient experience front and centre”

Chris Harrison

NHS England noted that the latest National Cancer Patient Experience Survey suggested most people were really positive about the care they received, but there was currently no measure to assess how well patients were supported after treatment.

The new “quality of life metric”, though to be a world first for a quality of life metric at this scale, will use questionnaires to measure how effective support is.

Two validated quality of life questionnaires – one generic (EQ-5D-5L) and one cancer specific (EORTC-QLQ-C30) – will be used, according to NHS England.

The resulting data will then be made available on the website My NHS – in order to help patients, relatives, clinicians and service providers see how well their local after cancer care support is doing.

The first five areas to pilot the new approach were announced today at NHS England’s Health and Care Innovation Expo 2017 in Manchester.

The pilot sites that are groups into “alliances” of trusts, are are listed below, will run between September 2017 and early 2019.

  • Cheshire and Merseyside – Aintree University Hospital NHS Foundation Trust, Southport and Ormskirk Hospital NHS Trust, and St Helens and Knowsley Teaching Hospitals NHS Trust
  • Northern Cancer Alliance – Gateshead Health NHS Foundation Trust, Northumbria Healthcare NHS Foundation Trust, and Newcastle Upon Tyne Hospitals NHS Foundation Trust
  • East of England – Ipswich Hospital NHS Trust
  • North Central and North East London – University College London Hospitals NHS Foundation Trust, and Barts Health NHS Trust
  • Wessex – University Hospital Southampton NHS Foundation Trust

Professor Chris Harrison, national clinical director for cancer, said: “Cancer survival rates are at a record high, with latest data showing an estimated 7,000 plus more people surviving cancer after NHS treatment compared with three years previous.

“One of our key ambitions is to put cancer patient experience front and centre,” he said. “Everyone is unique, with different views and priorities, so it’s vital that they receive personalised support, this new measure will help ensure local NHS can see where things are going well and where improvements can be made.”

“Time and time again I hear people describe the sense of falling off a cliff when they have finished treatment”

Dany Bell

Work is also underway to ensure patients are supported during their treatment and that those most likely to need help once they have had treatment get the right follow-up support, said NHS England.

It highlighted a new “recovery package” for care during and after cancer treatment, the aim of which is to help ensure patients have more personal care and support from the point they are diagnosed.

The move should see patients working with their clinician to develop a comprehensive plan outlining, not only their physical needs, but also other support they may need.

It was vital that patients continued to have the right care and support once treatment had finished, said NHS England. It was important to develop an appropriate plan to suit them, instead of a one size fits all approach where people were booked in for appointments at set time scales.

Chris harrison

Chris harrison

Chris Harrison

This could involve personalised follow up to individual needs and preferences – for some, more intensive clinical support was needed, but others may feel confident to take control and manage their own care, seeking support when needed, noted the government arm’s-length body.

Meanwhile, it highlighted that findings from the latest annual national patient survey, published in July, showed key experiences of NHS cancer care continued to improve.

The National Cancer Patient Experience Survey 2016 asked people with cancer across England for their views on their care, with 72,788 responding.

Key findings included that 90% of respondents said they were given the name of a clinical nurse specialist who would support them through their treatment.

When asked how easy or difficult it had been to contact their clinical nurse specialist, 86% of respondents said that it had been “quite easy” or “very easy”.

Meanwhile 88% said that, overall, they were always treated with dignity and respect in hospital, and 94% that staff told them who to contact if they were worried about their condition or treatment after discharge.

The charity Macmillan Cancer Support welcomed the new metric and also called for the full adoption of the new recovery package, warning that there were gaps in aftercare.

Dany Bell, Macmillan’s specialist advisor for treatment and recovery, said: “Surviving cancer is not the same as living well, and time and time again I hear people describe the sense of falling off a cliff when they have finished treatment.

Macmillan Cancer Support

England’s NHS to measure quality of life for cancer survivors

Dany Bell

“As more people survive cancer in the long term, measuring their quality of life will become increasingly important,” she said. “That’s why we welcome this move by NHS England to track the support people receive after cancer treatment.

“If we are to see any meaningful improvement in the support people receive after their treatment, the recovery package – a personalised plan to help people manage the impact of their cancer – needs to be fully funded and adopted across the NHS,” she added.

Macmillan said it estimated that at least 625,000 people in the UK were facing poor health or disability after treatment for cancer – around 25% of those living with the condition.

The charity also warned that at believed at least 350,000 people living with and beyond cancer were experiencing chronic fatigue, around 350,000 were having sexual difficulties, and at least 200,000 were living with moderate to severe pain after curative treatment.

In addition, based on its predictions, around 150,000 were affected by urinary problems, such as incontinence, and around 90,000 were experiencing gastrointestinal problems, including faecal incontinence, diarrhoea and bleeding.

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