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Involvement Opportunities

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Latest Cancer Quality of Life survey results published

By | Involvement Opportunities, Living with and Beyond Cancer | No Comments

The latest set of results for the Cancer Quality of Life Survey have been released.

The survey aims to find out how quality of life may have changed for people diagnosed with cancer, helping to identify where care is working well or not so well, and whether any new services are required to improve quality of life.

The inaugural Quality of Life survey results were released in September 2021 and are updated every six months, with the latest set of results released in late April 2022.

When the survey was first launched only people who had received a breast, prostate or colorectal cancer diagnosis were asked to complete the survey around 18 months after diagnosis.

Although since July 2021 the survey has been extended to capture the views of all cancer patients 18 months post-diagnosis, the results are still restricted to breast, prostate or colorectal cancer patients while results for other cancers are collated in numbers worth analysing.

The results show that quality of life for people affected by cancer in Humber and North Yorkshire (80.7 out of 100) was slightly higher than for those with a cancer diagnosis living in the rest of England (80.4).

Image of two people sat on an outdoor bench looking at each other.

The average overall health score for cancer respondents in Humber and North Yorkshire was 75.2 (out of 100) – the same as the national average. Unsurprisingly this figure is significantly lower than the average score for non-cancer patients which is 81.8.

To date the survey has been sent to 3,282 people in Humber and North Yorkshire and 1,795 of these people have completed the survey. The Humber and North Yorkshire Cancer Alliance’s response rate of 54.7% is the fifth highest response rate of the 21 cancer alliances in England.

Find out more: https://www.cancerdata.nhs.uk/cancerqol

Smokers and former smokers asked to share their views in a survey commissioned by the Humber and North Yorkshire Health and Care Partnership

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Humber and North Yorkshire Health and Care Partnership are inviting current and former smokers, living across our region, to take part in a confidential survey designed to find out how they feel about smoking and the support available to quit.

The information gathered by the survey will be used to inform communications as Tobacco Dependence Treatment Services are launched in NHS Trusts in the coming year, to support Smokefree hospitals, in line with the long-term plan. The survey, which closes on Friday 20th May 2022,  takes just 5 minutes to complete and those who do it will be entered into a prize draw to win a £40 Love to Shop voucher.

If you’re a current or ex-smoker, you can take part in the survey here. Or, you can share the link with friends, family, patients and colleagues to help the Partnership gather the widest possible data set.

A social media campaign supporting the survey is running. You can help spread the word by sharing posts. Follow the Cancer Alliance on Facebook and Twitter for updates.

Under 16 Cancer Patient Experience Survey

By | Involvement Opportunities, Living with and Beyond Cancer | No Comments

Children under 16 who received NHS cancer care during 2021 are being invited to take part in the Under 16 Cancer Patient Experience survey.

The NHS wants to hear from children and young people, and their families, about their experiences so it can continue to improve the care and services.

A diagnosis of childhood cancer understandably has a devastating impact on the emotional health and wellbeing of the child and their family, both during and after treatment. Children and young people’s treatment and experience of cancer differs greatly from adults and we recognise the need for a personalised approach to their cancer care.

It’s so important for us to listen and learn from children and young people in order to provide them with the best possible care and experience throughout treatment and to reduce the impact it has on them later in life.

The Under 16 Cancer Patient Experience Survey will inform how the NHS delivers cancer services with the aim to radically improve the outcomes for children and young people affected by cancer.

If you receive an invitation in the post please complete the survey.

For more information visit www.under16cancerexperiencesurvey.co.uk.

NHS seeks views on proposed new standards for cancer

By | Involvement Opportunities, National Campaigns | No Comments

The NHS is launching a consultation on proposed new standards that will help diagnose more cancers earlier and save more lives.

Developed with clinical leaders, the proposals – supported by NHS staff as well as patient groups and cancer charities – aim to simplify and update cancer standards, based on the recommendations of the Independent Cancer Taskforce.

Patients, clinicians and the public will be asked to share their views on the proposed standards over the next month, with a report setting out the changes published today.

Cancer currently has a complex set of nine separate performance standards, with different targets covering different routes into the system, for example, screening or a GP referral.

The new plan proposes ensuring patients have the same opportunity for faster diagnosis and treatment, including:

  • The 28-day faster diagnosis standard, which would see patients who have been urgently referred, have breast symptoms, or have been picked up through screening, have cancer ruled out or receive a diagnosis within 28 days.
  • A 62-day referral to treatment standard, meaning patients who receive a cancer diagnosis will start treatment within nine weeks from the date of referral.
  • A 31-day decision to treat to treatment standard, so that cancer patients receive their first treatment within a month of a decision to treat following diagnosis.

These new standards aim to make diagnosis and treatment timelines easier to understand for people with suspected cancer and their families, while also helping to diagnose cancers earlier and save more lives.

Before the faster diagnosis standard was introduced, access standards for cancer have remained unchanged since 2009. The current two-week wait target sets no expectation of when patients should receive test results or actually get a confirmed diagnosis.

Cancer care has been prioritised throughout the pandemic with the latest data showing the number of people getting checked for cancer increased by over half a million (512,110) in one year between December 2020 and December 2021.

In December alone, there were over 215,000 urgent referrals for cancer and more than nine out of 10 people started treatment within one month.

Dame Cally Palmer, NHS National Director for Cancer said: “Access standards have been key to improving timeliness of treatment for people with cancer since they were first introduced in 2000.

“As we see advances in diagnosis and treatments for cancer, it is only right that these standards are modernised – so that we can ensure patients are diagnosed more quickly and are given the treatment they need as soon as possible, helping us save even more lives.

“These proposed changes are an important part of improving cancer care and so from today, the NHS will be inviting views from patients, staff and the public”.

Professor Peter Johnson, National Clinical Director for Cancer for NHS England, said: “We know that people having tests for possible cancer want to know the results quickly, and updating the standards to reflect this will help us to make sure we are able to deliver the best possible care.

“We are encouraging colleagues in NHS cancer services to share their views on the consultation to ensure we have standards that are better for people with cancer”.

Health and Social Care Secretary, Sajid Javid said: “As part of our 10-Year Cancer Plan, we want to offer patients the best possible care and treatment.

“These proposals will help us speed up diagnosis times and treatment, and save more lives.

“The NHS wants to hear from as many people as possible – and is seeking advice from patients, staff and the public. Please, make your voices heard”.

Under the new proposals, the NHS would focus on the time from referral to people finding out their results within a maximum of 28 days. This faster diagnosis standard has a clearer focus on measuring and incentivising early diagnosis, rather than just time to first be seen.

Areas where the new standards have been tested have shown that performance against the 62-day referral to treatment standard was significantly higher (74.9%) than the control group (71.7%) when using the new measures.

Proposals are in addition to the target announced in the elective recovery plan, published last month, which outlined the NHS aim to return the number of people waiting more than 62 days from an urgent referral back to pre-pandemic levels by March 2023.

Catherine Harper-Wynne, Chair of the Breast Cancer Faster Diagnosis Group, said: “The proposed update in standards provides a better reflection of our current clinical approach and allows for greater flexibility to offer patients the most efficient route to diagnosis, allowing us to start treatment as quickly as possible. For breast cancer patients, there is evidence, from the pilot already completed, that a higher proportion of patients had cancer ruled out within 28 days”.

Jane Lyons, CEO of charity Cancer52, said: “People with rare and less common cancers often have vague symptoms and it can take longer for their cancer to be diagnosed. So a commitment to a diagnosis in 28 days for all cancers, including those that are more challenging to diagnose, is a good step forward. Earlier diagnosis can mean more people start treatment sooner and more lives will be saved, and we support work to help the NHS meet its ambitions to diagnose more cancers faster and earlier”.

Patients have told the NHS that the focus on achieving a rapid diagnosis or ruling out of cancer is the right one, and is more meaningful to patients than the timing of a first appointment.

Anyone wishing to submit their views to the consultation can do so on our website or by email to [email protected].

Cancer Patient Experience Survey 2021

By | Involvement Opportunities, Living with and Beyond Cancer

NHS England and Improvement has launched its 2021 national Cancer Patient Experience Survey (CPES).

The survey asks for feedback from patients, aged 16 and over*, who were treated for cancer as an inpatient or day case, and left hospital in April, May or June 2021, to take part.

Patient feedback is crucial in helping organisations that commission and provide cancer services across Humber, Coast and Vale understand what is working well and identify areas for improvement.

The results from CPES will help to improve local cancer services by enabling Humber, Coast and Vale Cancer Alliance to identify local priorities and work with patients and partners to deliver change.

This year the Cancer Patient Experience Survey (CPES) questionnaire has been redesigned, guided by the CPES Advisory Group, to reflect developments in cancer care and treatment, and national policy. The results of the survey will be available in Summer 2022.

For more information on the survey and how to access help and support in completing it, please visit www.ncpes.co.uk

*A new survey has been launched for those aged 16 and under, www.under16cancerexperiencesurvey.co.uk.

Image shows a NHS staff member operating a CT scanner. There is a patient lying on the scanner. Text on the image reads 'Cancer Patient Experience Survey. Help us to make meaningful change in cancer services.

NHS launches new national COVID Cancer Antibody Survey

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The NHS has launched a national COVID Cancer Antibody Survey to assess antibody responses to the COVID-19 vaccines among cancer patients

People aged 18 or over, who are living in England and have either been diagnosed with cancer in the last year or are currently receiving cancer treatment, are being asked to sign up to the survey at www.covidcancersurvey.uk. Registered participants will be sent a finger-prick blood test that looks for antibodies against COVID-19 in the blood.

Vaccination is an important strategy to protect society from the effects of COVID-19, but there is emerging evidence that a small number of cancer patients may have lower levels of antibody response than the general population. The NHS don’t yet fully understand what lower levels of antibodies mean in terms of outcomes, but it may mean some people with cancer are not as protected from COVID-19.

By signing up for this survey, registered participants can help the NHS to develop their understanding of what antibody levels mean for people with cancer and help to provide the best treatment, care and support for patients, as well as finding out about the participants own antibody levels.

Participants will be asked to fill in a short form before being automatically redirected through to the NHS Test & Trace antibody test booking page where they’ll be able to book your free test. There are 10,000 places on this survey and the NHS expects to be recruiting participants for the next two to three months. To sign up to the survey, please visit https://covidcancersurvey.uk/.

Image shows a man in a blue and white checked shirt looking down at a paper. The NHS logo is in the top right hand corner and there is text on the image that says 'the national covid cancer antibody survey' http://covidcancersurvey.uk

Please note: The NHS are aware that, once a registration has been completed, participants will be directed onto the gov.uk antibody test booking service and one of the questions on that website asks to confirm a participants current employment status. Please ignore the text underneath this question, which asks participants not to continue if not working – people do qualify for an antibody test, regardless of their employment status. Simply answer this question and click ‘continue’ to book your test. The NHS are assured that the website is being updated imminently, when this message will be removed.

For more information, please use the ‘contact us’ section of the survey website: https://covidcancersurvey.uk/contact/

Experiences of Prostate Cancer shared at Cancer Alliance Focus Group

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In February, the Humber, Coast and Vale Cancer Alliance facilitated a Prostate Cancer Focus Group event to understand patient experiences from referral, diagnosis, treatment to living with and beyond prostate cancer.

By understanding both positive and negative experiences of the current prostate pathways across the Humber, Coast and Vale area, the Cancer Alliance aim to ensure that any localised pathway steps that currently add value/increase positive patient experience are not lost when implementing against national guidelines.

The Prostate Cancer Journey map provides a picture of the main feedback from the event.

To view the full feedback report, click here.

Thank you to all those who gave up their time to attend this event. If you have been affected by cancer and would like receive updates from the Humber, Coast and Vale Cancer Alliance or take part in future engagement events, please email [email protected]

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