How confident are people about accessing NHS healthcare?

Healthwatch England – September 2023

This research shows low public confidence in being able to access NHS services. It finds that a third of adults in England lack confidence that they can access timely care, including GP services, mental health support and hospital care. It also suggests that perceptions of access to NHS care is a health inequality issue, with some of the most vulnerable groups having the lowest confidence that they will get the care they need in a timely way.

Read the Research – How confident are people about accessing NHS healthcare?

Improving patient experience in clinical trials using Trialmap

Cancer Research UK – Dec 22

Cancer Research UK has partnered with Stitch, a digital startup, to create the Trialmap app for clinical trial patients. The app provides patients with information about their trial, appointments, and the opportunity to give feedback on their trial experience. The app has recently gone live for its first clinical trial.

Trialmap has been co-created with input from ECMC research nurses and over 40 patients. The feedback that Stitch collects will be made available to help improve future Cancer Research UK studies, making them better for patients and more effective at investigating novel treatments.

Find out more

‘As a cancer survivor you’re expected to feel grateful’: Laura Fulcher’s campaign for better care

The Guardian | April 2022 | ‘As a cancer survivor you’re expected to feel grateful’: Laura Fulcher’s campaign for better care

News article in today’s (29 April 2022) Guardian explaiing former English teacher Laura Fulcher’s patient experience and life as a cancer survivor. Fulcher had agonising symptoms for 15 months before she was finally diagnosed with bowel cancer, then received little support after her treatment. So Fulcher set up a charity- Mission Remission- to help cancer survivors and to campaign for faster diagnoses.

Read Fulcher’s experience as a patient in The Guardian

Cancer Patient Survey 2021: Patients less likely to rate cancer care as ‘very good’ during pandemic #Covid19RftLks

Cancer Research UK | July 2021 | Cancer Research UK Cancer Patient Survey 2021 CRUK’s second survey studying the impact of COVID-19 on cancer patients in the UK

This report shares the findings of CRUK’s second survey of 900 cancer patients conducted December 21st 2020 –
March 25th 2021. The survey aimed to build a more complete understanding of how cancer patients’ perspectives of how their testing, treatment and care had been impacted by the pandemic since it began as well as impact on wellbeing and what they wanted the government to be doing. The survey also included new questions on clinical trials, COVID-19
safety measures, remote consultations and community-based treatment.

Key findings

• Almost a third (29 per cent) cancer patients reported that their treatment had been impacted since the start of the pandemic.
• Around 4 in 5 (80 per cent) reported that their care had been impacted in at least one way. The most common ways they were affected was going to treatment alone, having check-ups at hospital cancelled or postponed, and receiving less support both from support groups and clinical nurse specialists.
• The proportion of cancer patients who rated their overall cancer care as ‘very good’ reduced from 84 per cent for before the pandemic started (retrospective rating) to 60 per cent since the pandemic started, 33 per cent downgraded their rating since the pandemic started.
• The majority of cancer patients reported positive experiences of COVID-19 safety measures, particularly safe spaces (89 per cent), wearing masks (80 per cent) and home and community-based treatment (75 per cent).
• The most reported concern generally was of becoming seriously ill from COVID-19 (50 per cent) and catching COVID-19 (49 per cent).
• Patients reported feeling more “frustrated” (67 per cent) and more “anxious” (62 per cent) compared to before pandemic (Source: Cancer Research UK)

Cancer Research UK Cancer Patient Survey 2021 CRUK’s second survey studying the impact of COVID-19 on cancer patients in the UK [report]

Related:

Cancer Research UK Patients less likely to rate cancer care as ‘very good’ during pandemic

“Something told me I needed to get checked out, I noticed that it was different this time….”

West Yorkshire and Harrogate Cancer Alliance | nd | Ric’s Story – “Something told me I needed to get checked out, I noticed that it was different this time….”

The last five years have been a real rollercoaster ride for Ric Myers, after being diagnosed with lung cancer in early 2016.

“I’d always had what I called a smoker’s cough, but this time, something in me told me I needed to get it checked out, I noticed that it was different this time.”  

Ric was prescribed steroids, an inhaler to loosen his chest and enable the infection to clear, and was also referred to Harrogate Hospital that afternoon for a chest x-ray. He received a telephone call an hour later and was advised that his chest congestion was such that antibiotics were needed after all. 

Ric was told to take the full course and wait two weeks before being referred back for a second  chest X-ray, after which he was called back to the GP surgery and told that something abnormal could be seen on the film. An appointment had also been made for Ric at the Macmillan Robert Ogden Centre in Harrogate, pictured below.

“The doctor told me there was something there, possibly cancer, and the impact of that word really is what people say it is. You automatically assume the worse,” said Ric. “I was told not to look on the internet but, of course, you do and that can make things worse.”

Following CT and PET scans, and a needle biopsy, Ric was told  he had a tumour the size of a cherry tomato and underwent a  keyhole lobectomy of his right lung. It was found to be stage 1 lung cancer.

The operation went well but Ric’s road to recovery has been a complex one.

Despite a number of setbacks on his road to recovery, he is now progressing well and recently signed up as a West Yorkshire and Harrogate Cancer Champion, volunteering to use his own experience of cancer care to help others, through a programme of symptom awareness raising and prevention advice.

An infrequent visitor to his GP, Ric acted on signs and symptoms that he felt were unusual for him, and sought advice when he developed what he had initially believed to be a persistent cough and chest infection. He is now backing the national #HelpUsHelpYou campaign to encourage more people to do the same (Source: West Yorkshire and Harrogate Cancer Alliance).

Read Ric’s full story from West Yorkshire and Harrogate Cancer Alliance

NIHR: Active monitoring in early prostate cancer prevents as many deaths as surgery or radiotherapy, new research shows

NIHR| 4 February 2021| Active monitoring in early prostate cancer prevents as many deaths as surgery or radiotherapy, new research shows

New research indicates that ‘watch and wait’ also known as active monitoring in early prostate cancer prevents as many deaths as surgery or radiotherapy. The experts involved in this trial have observed that at 10-year median follow-up of patients with early prostate cancer, there was no difference in disease-specific mortality between active monitoring, radical prostatectomy and radical radiotherapy treatments, which caused different side-effect profiles.

It stuidied over 82 000 men between the ages of 50 and 69 who agreed to have a PSA test. Some 2664 were diagnosed with localised prostate cancer, and of this group, 1643 agreed to be randomly allocated to surgery, radiotherapy, or active monitoring. Urinary and sexual function was assessed by questionnaires completed by the men.

The results showed that in the ten years following their diagnosis:

• 99% of men were alive in each of the three groups
• compared with active monitoring, surgery and radiotherapy reduced the risk of disease spreading outside the prostate by half
• urinary leakage and sexual function were worst after surgery
• sexual and bowel functions were most affected by radiotherapy
• More than half (55%) men on active monitoring moved to a radical treatment but many (44%) remained disease free and avoided the side effects of treatments.

The study found that overall, quality of life was similar across all groups. Men on active monitoring had an expected gradual decline in their urinary and sexual function over time. The researchers concluded that longer follow-up is needed to determine the most cost-effective treatment for localised prostate cancer over a man’s lifetime.

This is a practice changer for the management of prostate cancer; many academics have called it the Greatest Trial Of all Time. After years of retrospective research with uncontrollable bias, it was the first large randomised controlled trial to compare surgery to radiotherapy and active monitoring for the treatment of localised prostate cancer. It showed no difference in survival in the different treatment groups which is essential news for counselling patients with a new diagnosis of prostate cancer.

Suneil Jain, Professor and Honorary Consultant in Clinical Oncology, Queen’s University of Belfast

(Source: NIHR)

The primary paper Active monitoring, radical prostatectomy and radical radiotherapy in PSA-detected clinically localised prostate cancer: the ProtecT three-arm RCT

National Cancer Patient Experience Survey 2018

The survey is conducted on an annual basis and includes all adult patients (aged 16 and over), with a confirmed primary diagnosis of cancer, who have been admitted to hospital as inpatients for cancer related treatment, or who were seen as day case patients for cancer related treatment, and have been discharged between the months of April, May or June 2018.

Full resource: National Cancer Patient Experience Survey 2018 – National and Local data

 

All.Can patient survey

All.Can UK | December 2018| First findings of All.Can patient survey revealed at UK Parliament event

More than a third (36 per cent) of cancer patients reported the greatest inefficiency as being their diagnosis finds the All. Can patient survey sought patients’ and carers’ perspectives on inefficiencies in cancer care.  40 per cent of people who participated in the survey had been initially diagnosed with something else. A similar proportion (34 per cent) also responded to say that they had a surplus of medication left over following treatment.

 

All.Can worked with Quality Health to develop the patient survey. Quality Health was responsible for all aspects of survey administration and data analysis, with input from All.Can national initiatives and the international research and evidence working group.

The UK piloted the All.Can patient survey ahead of roll-out in other countries throughout 2018. The survey closed in the UK in August, but continued running until 30 November in Australia, Belgium, Canada, France, Italy, Poland, Spain and Sweden.  Data from an international version is also being analysed (Source: all-can.org).

Further details from All.Can

Local-level data from 2017 Cancer Patient Experience Survey

NHS England has published local results from the 2017 National Cancer Patient Experience Survey.  The results, by trust and clinical commissioning group, are on the survey website alongside the national data, which was published in July.

• NHS Rotherham Clinical Commissioning Group
• The Rotherham NHS Foundation Trust

The annual cancer patient experience survey (CPES) suggests that services are improving.

National Cancer Patient Experience Survey

Patients scored their overall experience at 8.74 out of 10, compared with 8.70 last year. This year’s CPES sought views on the experiences of care of more than 118,000 NHS patients who had treatment in hospital from April to June 2016 after a primary diagnosis of cancer.

The report for The Rotherham Foundation Trust can be accessed here.

The report for Rotherham CCG can be accessed here.