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Living with and Beyond Cancer

Jul 22
0

Cancer Patient Experience Survey results published

By | Living with and Beyond Cancer | No Comments

The 2021 Cancer Patient Experience Survey (CPES) results have been published.

The survey, which has been carried out annually since 2010, helps organisations that commission and provide cancer services to understand what aspects of cancer services are working well and identify areas for improvement.

The survey was completed refreshed in 2021 in response to feedback from patients, and providers and commissioners of cancer services, and therefore should not be compared with results from previous years.

The 2021 CPES survey was completed by 59,352 patients nationally, equating to a response rate of 55%. In Humber and North Yorkshire 2,433 patients completed the survey, resulting in a response rate of 60%.

As in previous years, the Humber and North Yorkshire Cancer Alliance will use the 2021 CPES results to identify local priorities and work with patients and partners to deliver positive change.

The areas for improvement identified in the 2021 survey across the Humber and North Yorkshire area include: waiting times for diagnostic test results; patients having a main point of contact in their care team; staff providing patients with information on available support; and cancer research opportunities being discussed with the patient.

Click here to view the Humber and North Yorkshire Cancer Alliance-area CPES results.

May 25
0
Image of two people sat on an outdoor bench looking at each other.

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

May 09
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Photo of Helen and her brother at a RideLondon event. Helen is wearing a t-shirt and has short blond hair. She is wearing sunglasses. Her brother is wearing a cycling top and helmet.

Living with Ovarian Cancer: Helen’s story

By | Living with and Beyond Cancer | No Comments

Helen Heagren, from Grimsby, was diagnosed with ovarian cancer in 2016. Six years later, she is living with cancer and has shared her story in the hope that it will help others to become aware of the symptoms and know that support is available.

In 2015, Helen was living in Essex and worked as a Teaching Assistant. In the run up to her 50th birthday, she noticed her weight had ‘crept up’ and decided she was going to fit and drop a few dress sizes.

“Having set myself target of becoming a size 12, I joined a local gym and took part in dance and aerobic classes most days. After 10 months, I managed to reach my weight loss target however, I still had a little belly so I decided to keep going.

“One Saturday morning, whilst doing pelvic exercises, I felt something strange move and it played on my mind after the class, although I can’t really say why. I decided to contact my GP and an appointment was made for three weeks later.

A photo of Helen's stomach which she describes as looking pregnant at the time of the photo.

“Whilst waiting for my appointment, I noticed my belly had started to expand and it looked like I was pregnant. Although pregnancy tests were saying I wasn’t, a concerned colleague who had also noticed that my belly was expanding quickly, advised me to see a GP urgently.

“I walked into the GP Surgery on 24th November 2015.  My GP examined me and thought I had Ovarian cysts. She arranged for me to have an ultrasound for the following morning at my local hospital.

“The next few weeks flew by with appointments, scans and a biopsy. Nine litres of fluid were removed but it quickly built up again and I was taken into hospital on New Year’s Eve in 2015 to have another eight litres drained. They then fitted a permanent drainage bag and at this point the word cancer had not been mentioned at all.

“In early January 2016, when all my results were back, myself and my husband were called to have a meeting with an Oncologist. There was also a nurse in the room who introduced herself as Tina. It was then I was told I’d been diagnosed with Stage 4 ovarian cancer. Wow. My emotions were all over the place. Cancer? Really? How? Why? Ovarian Cancer? Why don’t I know about this? What are and were the symptoms? I don’t feel ill. What is stage 4? Am I going to die? No one in my family has had cancer. Are they sure? So many questions.”

Helen’s Oncologist explained the options available, including information about trials. Helen accepted a clinical trial for a new drug call Avastin, which had shown good results in other cancers, and also started chemotherapy in February 2016.

“I have so many funny stories from the chemo room. I did try to be good but things just went wrong. For example, in my first session, I sat next to a lovely old man who was receiving treatment for throat cancer.

“I needed the toilet, so I unplugged my chemo stand on wheels and off I went. People around me started shouting “stop”,” look!” and I was mortified to see I had unplugged the wrong stand and was bringing the elderly man with me! Gosh, he and his wife did laugh and all the nurses came running.

“After three chemotherapy sessions, I went to a hospital in London for a full hysterectomy. The surgeon who carried out the operation spotted that it had spread to my bowel and other areas, so I had a stoma fitted. In total my surgery was 9 hours. I still have the stoma bag today and know now that this can happen with ovarian cancer.

“After my surgery, when I was fit enough, I went back to chemo and Avastin. I was also offered a genetic test which proved to be positive for the BRCA 1 gene. The enabled my mum, siblings, and son to be tested to see if anyone else had the gene. That was the scariest time.”

Helen was advised by her Clinical Nurse Specialist to look up some Ovarian cancer online charity groups and after looking at a few websites, Helen decided Target Ovarian Cancer was best for her.

“Their website was what I was looking for. I could find information about research and trials, and there was a nurse on hand that you could phone. In lockdown, they did some fabulous zoom seminars with clinicians that covered so many topics on ovarian cancer. There was also an online chat group which was full of valuable information and helped me to meet some ladies locally that I now catch up with over coffee and cake.

“There were also things I could involve myself in to help raise awareness and, as a person who has ovaries but who didn’t know much about the disease before my diagnosis, that is what I chose to do.

“As part of one of Target Ovarian’s awareness campaigns, I was lucky enough and honoured to be invited to Westminster to speak in Parliament. I also joined in with Target Ovarian‘s annual awareness walk at the Olympic Park and had fabulous fun with some amazing people and families.

“My family and friends have also helped to raise awareness for the charity. My brother is a keen cyclist and managed to get a charity place for RideLondon, so he can proudly say he’s ridden the Olympic 2012 course twice now. My friend’s husband completed it too, which allowed him to tick off a bucket list challenge whilst raising much needed funds and awareness for the charity.”

A photo of Helen speaking at a Target Ovarian event.
Photo of Helen and her brother at a RideLondon event. Helen is wearing a t-shirt and has short blond hair. She is wearing sunglasses. Her brother is wearing a cycling top and helmet.
A photo of a Target Ovarian Cancer digital billboard which includes a picture of Helen. The billboard reads '11 women die every day from ovarian cancer. It's time to take ovar.

Helen is now in her sixth year of living with ovarian cancer and hopes to help people talk about their ovaries more freely.

“The thing with ovarian cancer is that it doesn’t care who you are. It was always thought of an ‘older ladies’ cancer but it really doesn’t care what age you are.

“If your ovaries work then you should know the symptoms: bloating, needing to wee more, difficulty eating a full meal, feeling full, persistent pelvic or abdominal pain. I also suffered with backache.

“I have been amazed by the lack of education on ovarian cancer, especially about cervical screening not detecting ovarian cysts of cancer. I think there is a lot of misinformation about this and it’s important to know that cervical screening does not detect ovarian cysts or cancer. It would be great if they included information about this, and the symptoms of ovarian cancer, when giving talks about puberty to people in older years at schools.

“I’m currently having my fourth cycle of chemotherapy. I’m incurable and on maintenance treatment, which is keeping the Cancer at bay. I also have regular scans which gives my peace of mind that I know what it’s up to.

New treatments and drugs are being developed and evolving all the time. Some will suit and some won’t, so we need to find the one that does. Walking and climbing the stairs affects me getting out of breath but I do everything in my own time.

I am getting on with my life, especially after Covid-19 put a halt to things I had wanted or planned to do. I’ve resumed going to the Theatre in the West End and enjoy watching touring bands and musicals in Hull and Grimsby. I now meet friends for brunch, and I’ve been on the back of my friend’s Harley Davidson, which I wanted to do.

Headshot photo of Helen and her husband. They are both looking at the camera and smiling.

I hate heights but was challenged to walk over the O2 with a friend. It took a while, and the guide put us at the back which was hilarious, but we did it.

I’ve also joined groups locally recommended by St Andrews Hospice and Macmillan and I’m really enjoying meeting the different characters. It’s not morbid as I thought and they are a positive bunch, like me. We chat about anything and have fun. We do have a moan too, but that’s life isn’t it.

So, I’m still living my life. I just carry extra baggage. My message to anyone with ovaries is this:

  • Know the symptoms and look out for each other. You are not alone.
  • Know your bodies and see your GP at the earliest opportunity if you think something isn’t right. I am only here because I followed my instinct.
  • GPs have had extra training on Ovarian Cancer and spotting signs and symptoms, but if you are not happy with their explanation or diagnosis, don’t give up! Keep going back and be persistent.
  • Ovarian Cancer is a tricky one and clever but like all cancers, early diagnosis is key for survival.
Apr 19
0
Allyson is wearing a red coat and yellow bobble hat. It is a selfie photo which also includes a man standing in the background, smiling at the camera. They are both in an open field which has a mountain and water in the background.

Raising Awareness of Cancer: Allyson’s Story

By | Awareness and Early Diagnosis, Living with and Beyond Cancer | No Comments
The image shows Allyson with short hair and earrings. She is looking at the camera smiling. In the background their are company logos displayed on a white background.

Allyson lives in the East Riding of Yorkshire and began her career in the NHS at the age of 17. After retiring in 2018, Allyson noted that she had ‘never really been ill’ until she was diagnosed with breast cancer after attending a breast screening appointment in 2019.

Here you can read what happened after her diagnosis and how she is now helping to support others living with and beyond cancer:

“My breast cancer was identified during a breast screening appointment. Following my diagnosis, I underwent surgery and 15 sessions of radiotherapy.

“After finishing up treatment for breast cancer, I wanted to do something to raise money for Breast Cancer Now, so I applied to do The Moonwalk in London (walk 26.2 miles at night!).”

In December 2019, Allyson was training for the Moonwalk event and walking two miles a day but despite regular exercise, Allyson had started to notice that she was putting on weight around her stomach and in March 2020, she also started experiencing stomach pains.

“I spoke to my GP and one of my prescribed drugs, which prevented osteoporosis (a potential side effect of breast cancer) had recently changed from a branded product to the generic drug, so we thought this may be the cause. Since it was the start of the pandemic, seeing a GP for a stomach ache didn’t feel appropriate, but it only got worse over the next few weeks and by May 2020, I looked five months pregnant. I decided to contact my GP again and this time I was booked in for a face-to-face appointment.”

Allyson’s GP submitted a referral for an urgent scan however, two days later her symptoms had become worse so she returned to the GP and was admitted to hospital for a CT scan. Whilst in hospital, Allyson had six litres of fluid drained and five days later she was told that she had ovarian cancer.

“I was very weak and frightened. Following an MRI scan, it was decided I would have four sessions of chemotherapy and in September 2020 I underwent surgery.

“When I was diagnosed, I didn’t know the symptoms of ovarian cancer but I’d encourage women to familiarise themselves with B.E.A.T.

“As women, we tend to accept stomach pains and bloating but it’s important to understand what’s normal and speak to your doctor if you’re experiencing symptoms that don’t seem right.”

Coming to terms with a cancer diagnosis

“Receiving the ovarian cancer diagnosis was devastating for me and my family. It felt like being woken up in the middle of the night and thrown into the ocean without a life raft. I was so frightened and all I could think about was my death. I felt so alone.

“My husband became my carer and made sure I was eating and drinking properly. After a few months, I started to feel stronger physically and mentally and wanted to take back some control. I began looking at my diet and exercise, as well as investigating ways to manage my mental health.

“Women with ovarian cancer are three times more likely to develop mental health problems and I knew I was struggling. Thankfully, I found Ovacome, an ovarian cancer charity that supported me in my time of need.

“Through Ovacome, I met other women with a diagnosis who have since become dear friends that I couldn’t have managed without. I was a strong, independent woman when I was diagnosed with cancer for the second time, but it made me feel vulnerable, yet determined to do something to help myself and other women with a diagnosis.”

“I knew I needed to get fit for surgery and to help with the recovery after, so when I saw a challenge to run 60 miles for Cancer Research UK, I decided to try and walk it instead. I started to walk again, albeit slowly on some days following the chemotherapy. I was very weak, but feeling the weather on my face made me feel so much better.

“In the month prior to my surgery, I walked 70 miles. It wasn’t easy but I was determined to be as fit as I could be. In the month after surgery, I’m proud to say I walked 26 miles and have continued to walk every day since, whatever the weather.

“Walking has been my salvation. As I came to the end of my chemotherapy treatment, I set a goal of walking 1000 miles in 2021.

“When I realised I was walking a marathon a week, my goal changed to 52 marathons in 52 weeks. Sometimes I’d walk with my husband, other days alone, in silence, listening to the sound of each step like a sort of meditation.

Allyson is wearing a red coat and yellow bobble hat. It is a selfie photo which also includes a man standing in the background, smiling at the camera. They are both in an open field which has a mountain and water in the background.

“There were other times where I struggled, too, usually because of the ‘scan anxiety’ common among women like me. Slowly, I learned to face my fears. One day I loudly sang Gloria Gaynor’s I Will Survive while sobbing, which helped with my ‘I can do this!’ attitude. Luckily, we live in the countryside, so nobody saw me!

Walking together

“During one of my walks, at a time when I was receiving lots of messages of support from others, I came up with the idea of creating a virtual walking group for women with ovarian cancer. I got in touch with Ovacome, who had helped me previously, and we created the Walk With Me group.

Walk With Me is a friendly and supportive group that helps people with Ovarian to achieve their individual walking goals. The group connects virtually on WhatsApp to share friendship, encouragement, stories, and photos of the wonderful things they see on their walks. We also have a Strava club where people can share their routes and congratulate each other.

Allyson is stood in the snow with her arms out wide. She is holding walking sticks and dressed for cold weather.

“Walk With Me isn’t about the distance; it’s about supporting each other through ovarian cancer and sharing our experiences. With the support of the women in the group, I achieved my goal and walked 55.3 marathons in 52 weeks. That even included a few weeks with plantar fasciitis, but nothing was going to stop me!

“I now only do things that bring me joy every day and walking has become that for me, I face my fears as they arise, but know whilst cancer has changed me, it does not define me, but has been a real opportunity for change in my life for which I am grateful.”

Apr 11
0

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.

Apr 05
0
Andrew Markham and a friend raising money for Prostate Cancer UK. They are standing outside a Tesco and holding fundraising buckets. Andrew, who stands on the left, is wearing a purple wig.

Raising Awareness of Prostate Cancer: Andrew’s story

By | Awareness and Early Diagnosis, Living with and Beyond Cancer | No Comments

Andrew Markham, a Warehouse Operative from Brigg, was diagnosed with prostate cancer when he was 63. After receiving treatment in November, Andrew is now sharing his experience to encourage other men to become more aware of their risk, which can result in an earlier diagnosis.

Andrew Markham and a friend fundraising for Prostate Cancer UK. They are standing outside at a table with various merchandise.

Andrew (right) is passionate about fundraising for prostate and pancreatic cancer charities.

“In my late 50s, I had a problem with my tummy. I decided to speak to my GP about it, who asked me if I’d ever been tested for prostate cancer. Thinking back, I hadn’t, and so I went along for a PSA test*. After a slightly nervous wait, the results came back at just over four, which is a little high, but not necessarily a huge concern.

“Because my PSA was slightly high, I went back for a PSA test every six months after that. It always fluctuated between 3.9 and 4.2 and therefore seemed okay. This was until one test, when I was 63 in December 2020, which showed, despite a lack of any other symptoms, my PSA had gone up to 4.6, so the consultant suggested I have an MRI. I wasn’t too concerned, as my urologist assured me it was a precaution and my PSA still wasn’t very high.”

*A PSA test is a blood test to measure the amount of a prostate specific antigen (PSA) in the blood. PSA is a protein produced by normal cells in the prostate and by prostate cancer cells. It’s normal to have a small amount of PSA in the blood, and this even rises as men age because the prostate increases in size. A high PSA level can be an indicator of cancer or another problem with the prostate. Regular PSA testing can help GPs spot a problem early, even if there are no other symptoms.

“In May 2021, I received an MRI scan at Scunthorpe General Hospital. When attending my results appointment with a urologist, they said they’d found a lesion on my prostate and that it was best to investigate it further.

“I was then booked in for a biopsy, again at Scunthorpe General Hospital. My appointment took the full morning and I had 15-20 samples taken, but my wife Jenny and I were given plenty of cuppas – the nursing staff were brilliant. Two weeks passed and the results came – I had cancer. On the day of my results, my workplace has asked me to take part in a fundraiser for Men’s Health Week as they knew I fundraise for pancreatic cancer charities. It was ironic to receive the results I did.

“Later, another biopsy appointment confirmed a large tumour, bigger than I and they expected, and I was given a full diagnosis at the end of September 2021. My tumour was stage one with a Gleason score of 7.

“There are several options for treatment when it comes to prostate cancer, and I was given a choice between radiotherapy, hormone treatment, or surgery. After speaking with Jenny and some friends at a Brigg fundraising group, I decided to have surgery to remove the tumour.

Andrew Markham and a friend raising money for Prostate Cancer UK. They are standing outside a Tesco and holding fundraising buckets. Andrew, who stands on the left, is wearing a purple wig.

Andrew (left) and a friend fundraising for Prostate Cancer UK.

“On 28th November, I had a robotic-assisted laparoscopic prostatectomy (RALP) and have been recovering since then. I’m still tired, in pain, and have been off work for six months now, but I’m happy to have found my prostate cancer and had the procedure. In two weeks, I’ll be going for another CT scan to see if there are any other problems underlying.

“Although prostate cancer isn’t nice, knowing your risk and contacting your GP if concerned can help you get an earlier diagnosis. Men who are black or who are aged over 50, like I was when I was diagnosed, are most at risk. Knowing your risk is important, as it can help you and your GP decide whether you should be monitored or undergo tests, such as a PSA test, for prostate cancer.

“Prostate cancer doesn’t always have symptoms, but Prostate Cancer UK’s risk checker can help you determine your risk in 30 seconds. I’d encourage all men to use the risk checker and contact their GP if they have a higher risk.”

Dec 06
0

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.
Nov 18
0
An older woman holding a book, She is sitting on a sofa, wearing a yellow long-sleeved t shirt while looking into the camera. The image is used to represent a cancer patient who has completed the Cancer Quality of Life Survey.

First set of results released for national Cancer Quality of Life Survey

By | Living with and Beyond Cancer | No Comments

The first set of results for the NHS England and NHS Improvement and NHS Digital Cancer Quality of Life Survey have been released via an online dashboard.

The results show that quality of life for people affected by cancer in Humber, Coast and Vale was higher than for those with a cancer diagnosis living in the rest of England.

A graph showing the difference in overall health between cancer patients and the general population. Cancer patients scored 75.2/100, whereas the general population scored 81.8

Respondents 18 months post-cancer diagnosis rated their quality of life below the general population.

As well as measuring quality of life, the survey asks a series of questions to determine an overall health score. While quality of life was rated highly, overall health for those 18 months post-cancer diagnosis was lower than for the general population. Overall health was also slightly lower for the cancer population in HCV than for those with a cancer diagnosis living in the rest of England.

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

From 2020, people around 18 months past a breast, prostate, or colorectal (bowel) cancer diagnosis were asked to complete the survey. Those 18 months past any other type of cancer diagnosis began being asked in July 2021.

2,216 patients in Humber, Coast and Vale (HCV) were sent the survey. Of this sample, 1,241 people responded, achieving a 56% response rate from September 2020 to July 2021. The results are based on this time period.

Overall, feedback demonstrated a large amount of variation in cancer quality of life, and this was dependent on factors such as cancer type, age at diagnosis, and location.

Information from the survey, which will be updated on the dashboard approximately every six months, is one of a range of resources that will be used to work out where changes should be made to care, with the goal of improving services and quality of life for people diagnosed with cancer.

For a more in-depth look, the results dashboard for The Cancer Quality of Life Survey can be found at www.cancerdata.nhs.uk/cancerqol.

Sep 28
0

YOU CANcervive – Let’s Talk Cancer

By | Living with and Beyond Cancer | No Comments

A new podcast hosted by people affected cancer has launched in Yorkshire. YOU CANcervive – Let’s Talk Cancer aims to encourage more open conversation to raise awareness of common signs and symptoms and how people can reduce their risk.

Created by two people directly affected by cancer, Arzoo Dar from Dewsbury who experienced bone cancer as a child and Rob Husband from Huddersfield, who was treated for head and neck cancer and whose story features in the first episode of YOU CANcervive.

The episodes are suitable for everyone, not just those who have experienced cancer themselves, but also anyone affected by cancer in their lifetime.

The podcasts aim to help make cancer an everyday conversation and get people talking. Sharing signs and symptoms to look out for, what to do if you’re worried, how to lower your chances of developing the disease, and busting some of those myths that for so long have surrounded cancer, its impact and treatment.

Click here to start listening.

May 10
0

Under 16s invited to share cancer experiences to help improve services

By | Living with and Beyond Cancer | No Comments

A new survey to help understand and improve the care and experience for children under the age of 16 in care and treatment for cancer launched in April.

The Under 16 Cancer Patient Experience Survey builds on the work of the National Cancer Patient Experience Survey, understanding that cancer care pathways and care priorities for children often differ from adults’.

The results from the survey, available in summer 2021, will provide the first national-level insight into the experiences of children with cancer and will inform how the NHS delivers cancer services going forward.

Commissioners, providers and national policymakers will use the results to assess performance both locally and nationally, to help identify priority areas for enhancing children’s cancer services. The aim is to radically improve the outcomes for children and young people affected by cancer.

The survey, which began implementation across England from April 2021, invites children under 16 who received NHS cancer care during 2020 and their parents or carers to participate. They will be able to complete a paper questionnaire or an online version of the survey on any device.

Patient experience is extremely important to the NHS and the need for personalised care and treatment is well recognised. By contributing to the survey, young people and their parents or carers will help the NHS to continue to improve its services and better support children and young people living with and beyond cancer.

For more information on the survey visit www.under16cancerexperiencesurvey.co.uk.

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