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Living with and Beyond Cancer

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.
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.

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.

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.

Image shows two people sat on seperate benches, looking at each other whilst in conversation. They are surrounded by trees and grass.

People living with and beyond cancer are helping to improve cancer services by completing a new NHS Quality of Life Survey.

By | Living with and Beyond Cancer | No Comments

People living with and beyond cancer across the UK are helping to improve cancer services by completing a new NHS Quality of Life Survey.

Recognising that quality of life (QoL) outcomes are as important to patients as survival, the QOL survey asks people affected by cancer how they’re doing. Answers from participants can be related to their cancer diagnosis and treatment, other illnesses, or other things happening in their life.

Since its launch in September 2020, over 180 people across Humber, Coast and Vale have completed the survey and are therefore playing their part to ensure the information collected fully represents our local population.

To highlight the importance of understanding what quality of life means to people living with and beyond cancer, NHS England has released two new videos:

Barbara Griffin, a Trustee of local cancer support group York Breast Friends, features in the video and said: “To me, quality of life means being fit and healthy and being able to do the things that I want to do, and also having family and friends around me who also have good health, both physical and mental.”

Initially, people who have been diagnosed with breast, prostate or colorectal cancer will receive the survey around 18 months after their diagnosis. People with all other cancer types will then be included from July 2021 onwards.

To find out more about the new Cancer Quality of Life survey, please click here.

Carolynne, leader of the Myeloma North Lincs support group. She has short white hair, is wearing glasses and smiling at the camera.

Carolynne’s story

By | Living with and Beyond Cancer | No Comments

After attending Myeloma Support Group meetings in Lincoln, Carolynne decided Scunthorpe needed a group of its own, where those affected by Myeloma and other blood cancers could chat about their experience. Here, she tells us more about herself and the group.

After attending the Lincoln SMYLLE Haematology Support Group meetings, I realised something was missing from my local community. Although the meetings in Lincoln were excellent, a more local group would mean members could talk about news from their local hospitals and services.

Carolynne, leader of the Myeloma North Lincs support group. She has short white hair, is wearing glasses and smiling at the camera.

Carolynne’s advice is to stay positive and try to enjoy every day.

I went along to a couple of Myeloma UK patient information days in Leeds, which inspired me to inform local patients about the information and help

available from the charity. Soon after, the North Lincs Myeloma support group was formed.

We are an informal, friendly group, where members can come along to exchange news and experiences, as well as offer friendship and support to one another. I take the role of passing on any news items from Myeloma UK. They supply us with lots of different booklets on living well with myeloma, help for carers, as well as news about new drugs and trials.

At the moment, we only have a handful of members, as we find it difficult to get the message out, but we welcome anyone affected by myeloma to our meetings, whether that’s patients, carers, or family members. We would also be happy to welcome anyone with other blood cancers. I find our group members are very cheerful and supportive; even funny most of the time!

Many of us are required to shield at the moment, which means we can’t meet up for the social get-togethers that we enjoyed before the coronavirus pandemic. We have to stay safe, but shielding can be frustrating, so we try to keep in touch and stay cheerful. At the moment, we have a monthly virtual meeting, which is organised by Pat Chennells, Macmillan Information Facilitator for Northern Lincolnshire and Goole NHS Foundation Trust. We also keep in touch via phone calls and WhatsApp.

Carolynne’s Myeloma experience

I was pregnant with my second child at the age of 28 when results from a routine blood test showed high levels of some proteins in my blood. Initially, the doctors suspected something was wrong with the baby, but I was then diagnosed with monoclonal gammopathy of undetermined significance (MGUS).

On average, around 1% of people with MGUS go on to develop multiple myeloma. The doctors typically estimate a person’s risk of progressing using a test that measures the amounts of certain markers in the blood.

Since 2015, I’ve been on ‘watch and wait’ as my condition has remained fairly stable. I haven’t had any treatment since receiving Velcade injections for 3 months in 2015.

I am a very content person and enjoy life with my husband and family, who have always been very supportive. I have four grandsons and I love gardening, nature, walking, and being environmentally friendly. Gardening certainly keeps me happy and positive. If you sow, tend, or plant things, you are naturally optimistic for the future!

I will be 69 this year and one message I would like to send is that Myeloma is very different for everyone. Just because you’ve received a diagnosis, it doesn’t mean the worst. Stay positive and try to enjoy every day.

Looking for a support group?

If you’re someone who has been or knows someone diagnosed with cancer and are in need of support, head to our Support Group Directory. You’ll find local groups like Carolynne’s where others like you and healthcare professionals can help.

Christine, a pancreatic cancer survivor, looks into the camera and smiles. She is wearing a red sparkly long-sleeved top and has brown cropped hair.

Christine’s story

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

After experiencing persistent symptoms that weren’t normal for her, Christine was diagnosed with pancreatic cancer. Here, she tells her story and explains her advice for anyone experiencing something similar.

Towards the end of January 2019, my entire body began to feel itchy. I tried everything to stop it, from soothing sprays to creams and antihistamine tablets,  but nothing worked. I wasn’t in any pain anywhere, but I felt maybe a little more tired.

On 1st February at around 3 am, I couldn’t stand the itching anymore, and asked my husband to take me to A&E, where I’d hoped they’d give me a strong antihistamine injection or some tablets to help. However, the young doctor who saw me insisted on doing a blood test, which I think saved my life.

Christine, a pancreatic cancer survivor, looks into the camera and smiles. She is wearing a red sparkly long-sleeved top and has brown cropped hair.

Christine credits a blood test in A&E for saving her life.

After waiting a while, I received my results. The doctors said there may be a blocked liver duct, but I’d need more tests to confirm this. I was allowed to go home but would return for CT scans and MRI appointments. On Monday morning, I felt ‘out of sorts’ and fainted at home. Martin, my husband, took me back to the hospital, where they kept me in for 5 days to do some tests.

Over the next few weeks, I had various other tests done. I also started being jaundiced and my urine was much darker than usual. It was evident something was seriously wrong, so an appointment was made to see the consultant at Castle Hill.

The consultant at Castle Hill confirmed I had pancreatic cancer and was faced with two options. I could either have a Whipple’s procedure, which would give me at least another five years, or do nothing, which would leave me with five to eight months.

I returned for further scans the next day and would be back in hospital on the 13th March for surgery on the 14th. I brought an overnight bag with me for my scans, so the consultant decided to keep me in until the next day for my pre-op tests. However, whilst on the ward, I needed rehydrating, and was kept in the hospital until my operation.

My operation, which required two surgeons, lasted for 10 hours and I spent 10 days in the Intensive Care Unit (ICU) until finally arriving home on the 5th April.I felt isolated without the ward staff but was very well looked after by Martin and by friends who would do anything for us. Some kind friends had given us a hospital bed to use at home, and Martin made a bedroom for me in the dining room. I actually stayed downstairs until January 2020!

When I left the hospital, I was given a prescription of Creon tablets, which is a medication to replace the enzymes usually made by the pancreas to break down food. I have to take these tablets with everything I eat.

I also began chemotherapy in June 2019, which I had for six months. I recovered well from this and my main problem since has been with my digestive system. I have learned to live with this, however, and I am hoping to speak to the dietician again to see if anything can be done to ease my digestive problems.

I am now 20 months on from the major surgery and delighted to say I am in remission.

I still see my oncologist every four months to have my bloods checked, and then every six months for a CT scan.

If anyone has anything ‘different’ happening to them, i.e. it’s not normal for you, seek professional advice. Although it pays to talk things over with family and friends and look online,  you can’t believe everything you’re told or see on the internet. Speak to your GP as they have the experience and knowledge to help you best. Staying positive helped me with my recovery, so I’d always recommend that!

Symptoms of pancreatic cancer can include:

  • the whites of your eyes or your skin turn yellow (jaundice), you may also have itchy skin, darker pee and paler poo than usual
  • loss of appetite or losing weight without trying to
  • feeling tired or having no energy
  • a high temperature, or feeling hot or shivery

For more information, go to https://www.nhs.uk/conditions/pancreatic-cancer/.

Headshot of Margaret Allbones, a cancer survivor who shared her story with us. She is smiling, looking slightly to the right of the camera, and wearing a black jumper. She has cropped blonde hair and is wearing small gold hoop earrings.

Noticing what’s normal: Margaret’s story

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

Mum, grandma and former Medical Secretary Margaret didn’t experience any pain before her cancer diagnosis but still booked an appointment with her GP. Here, Margaret describes her cancer journey and highlights the importance of noticing whether a symptom is ‘normal’ for you.

My cancer diagnosis came as a shock. I felt well. I didn’t have a sore throat or any pain in my mouth, and I wasn’t experiencing any problems swallowing. The only thing different was that I felt like I had a hair in my mouth and needed to swallow more often. The symptom was persistent, so after a couple of months, I used a mirror to look into my throat, where I saw what looked like a tiny eye or shiny circle, and immediately booked an appointment with my GP.

Headshot of Margaret Allbones, a cancer survivor who shared her story with us. She is smiling, looking slightly to the right of the camera, and wearing a black jumper. She has cropped blonde hair and is wearing small gold hoop earrings.

Margaret’s symptom was persistent, unexplained, and unusual for her. Talk to your GP if you’re experiencing a symptom that is any of these.

My GP referred me to a consultant who, within 10 days, organised for me to attend the hospital as a day case and have the tonsil removed. Another 10 days after that, I saw the consultant again to receive the results of a biopsy on the tonsil. The consultant informed me it was cancer, more specifically, a lymphoma. My official diagnosis was a first-grade non-Hodgkin large cell lymphoma that had been caught early.

A couple of weeks later, I went for chemotherapy. In the end, I only had two sessions of the chemo, as it made me feel really unwell, and the results proved another session wouldn’t benefit me that much. Instead, I had radiotherapy a few weeks later.

Since my cancer diagnosis, I’ve tried to remain positive and keep looking forward. My role model has been my younger sister, who was diagnosed with pancreatic cancer six months before my own diagnosis. Like me, she didn’t have many symptoms – only an itch for a week or so. She has since had an operation and is now doing well.

I lost a lot of weight because of my tonsillectomy, chemo, and radiotherapy, and have experienced other side-effects such as a sore throat, mouth, and neck. Most of my other side effects have disappeared. I’m slowly getting back to a healthy weight and have been drinking nutritional supplement milkshakes to help. I began to experience extreme tiredness after undergoing x-rays, blood tests, a colonoscopy, and taking steroids to treat a cough I’ve had since my chemotherapy. I’ve stayed in touch with my Macmillan nurse, a dietitian and my GP practice nurse throughout everything.

I have COPD and diabetes, which have both made me feel weak, but since beginning to take long daily walks on the seafront, I’ve felt so much better. I still have the cough, but I’m using medication and a Flutter to manage it. I’m also having B12 injections and taking iron tablets to reduce my tiredness.

I have been continually checked on by health professionals, and the questions they asked ensured I informed them of anything and everything that was not normal to me. They never made me feel guilty about asking questions or getting in contact a lot. Everyone was helpful and caring. They let nothing go unchecked, which is what revealed my B12 deficiency – it may have gone unnoticed for some time otherwise.

My advice to others in my position would be to stay positive and see the future as something to look forward to – always keep the little things in mind. You can’t expect every day to be good so listen to your body. If you need to sit down or sleep – do so.

Always remember to talk to your GP about any problems or symptoms concerning you and get help when you need it!

If you’re experiencing a persistent ache or pain, unexplained weight loss, or an unusual lump. Speak to your GP. Remember, if it’s persistent, unexplained, or unusual for you, it’s important to get it checked.

Support Group Saturday: Pam and HER Breast Friends

By | Living with and Beyond Cancer, Support Groups | No Comments

Hull and East Riding Breast Friends, known as HER Breast Friends, is a small local registered charity founded in 2005 by two ladies, Jan Jones and Liz Drury, who at the time were both undergoing treatment for breast cancer at Castle Hill Hospital. While Jan and Liz are sadly no longer with us, every day the impact of what they achieved is felt by everyone at HER Breast Friends and beyond. Here, group Trustee and breast cancer survivor Pam tells us about everything the group does.

About the group

Jan and Liz realised there was a need for a group that didn’t focus on the disease, but more on the emotional and practical side of things. They wanted to use the experience they were going through in a positive way, to help not only themselves but others that would undoubtedly follow. The pair initially began by fundraising for comfy chairs in the breast care unit and oncology ward at Castle Hill Hospital. As more people became aware of their activities, the group grew and HER Breast Friends was formed.

The group’s aim is to create a positive environment offering encouragement and friendship, whilst also providing practical help for those going through their cancer journey.

From initially meeting in each other’s’ houses, larger meeting places were sought. Various church halls became our meeting place until 2011, when we acquired our own suite of rooms at the Chamberlain Business Centre on Chamberlain Rd, Hull. In 2018, the Charity moved to a more modern and accessible premises. The Octagon on Walker Street in Hull is where we’re still based today.

The charity is run by volunteers and supported by one full-time member of staff funded by grants. All of the aforementioned have been affected by breast cancer, either personally or through family, friends, or colleagues. After all, you do not have to have a diagnosis of breast cancer to be affected by it.

Membership for the group is open to both men and women and costs just £5.00 for the year. This money goes towards the cost of facilities, services and activities we run. As a member, you get a say at our AGM about how the charity develops, but you do not have to be a member to access all our facilities.

We are not medically trained and we do not offer medical advice about breast cancer or its treatment, but we are able to suggest and signpost to the people who can.

Our aim is to create a positive environment offering encouragement and friendship, whilst also providing practical help for those going through their cancer journey.

The butterfly was chosen as the symbol of the charity; while it means many things in different cultures, hope and transformation emerge as a common theme. The butterfly appears on our merchandise and can be found around the various rooms within the charity.

Possibly someone’s first point of contact with the charity would be if they received one of our patient gift packs, which we provide to the hospital for those having undergone surgery for breast cancer. It’s a small bag of toiletries and treats along with a cushion, currently made by our craft group and other voluntary groups. The cushion is ideal to rest your arm or head-on, but they come into their own when travelling home for seat belt comfort. More recently, we’ve also included our FUN stress-relieving dammit dolls and an information folder to let people know that they are not alone, we are thinking of them, and we are here if they need us.

Our support also includes a wig bank, which we’re currently providing via a home delivery service, our Buddleia therapy service, a bra service, a Wednesday craft group, dance night, and the occasional trip!

Our flagship event is our Pink Pamper Day, which caters for up to 100 people with a diagnosis of breast cancer to be thoroughly pampered, attend a variety of workshops, enjoy a lovely lunch and as in previous years make some long-lasting friendships. 2020 is the first year since 2006 that it has been cancelled. 

Usually, our premises are open Monday to Friday, from 10 am until 4 pm. for anyone to pop in if they wish… the kettle is always on! However, we’re currently closed due to COVID-19.

Since the start of the pandemic, we have engaged our members and supporters in various activities such as a weekly quiz provided by Simon, one of our Trustees, and a bakery corner with various delicious recipes provided by our members.

Our Buddleia therapists provide a calming distanced Reiki session each Tuesday at 3 pm. This can all be accessed via our website and social media pages.

Our Craft Group has continued their amazing work from home, providing the heart cushions, dammit dolls, seat belt cushions and face masks.

Unfortunately, activities such as the dance class and monthly meetings, which often feature guest speakers, have now come to a halt, along with all our fundraising events in what would have been our celebratory 15th year supporting local people affected by breast cancer!

About Pam

In November 2010, I was going away for a weekend with friends. I had lost my hair through chemo and therefore thought it would be a nice idea to get a wig. Little did I realise how expensive wigs can be! During a hospital visit, my husband came across a HER Breast Friends information booklet. They were a support group with a difference and of course they had a Wig Bank!

I contacted the charity and met the lovely founder, Jan Jones, who came with a variety of wigs for me to try. I must admit I had fun with my best friend trying them on!

I said earlier that HER Breast Friends is a support group with a difference. I think of these groups as people sitting around a table discussing their illness, but I couldn’t have been more wrong! The first meeting I attended, I thought I was in the wrong place, as all I could hear was laughter. Everyone is so positive.

I began volunteering with the charity by helping at events, but when a Breast Awareness Team was developed in 2012, I quickly became involved. After all, if I didn’t know the signs to look out for, I imagined there were others who weren’t aware too.

The team (all volunteers) deliver talks to groups such as WI’s, ladies groups, schools – basically anywhere that we are asked! These talks cover the signs and symptoms to look out for and help encourage the uptake of breast screening while also dispelling some of the myths and fears that may accompany breast cancer and screening in what has been described as a fun but informative manner on a serious subject.

We also hold events at various locations, such as leisure centres, shopping centres and markets.

Ten years on, I am now a Trustee of the Charity and lead the Breast Awareness Team. This year, due to COVID-19, our talks have been halted, although I did take part in my first webinar talk to the Hull Women in Business Group. Online is currently the way to go but myself and the team much prefer that face-to-face social contact, which we will hopefully, soon be able to get back to!

 

Find out more about the group at www.herbreastfriends.org.uk

You can also find them on Facebook, Twitter, Instagram and even YouTube.

Contact the team by email on generalenquiries@herbreastfriends.org.uk or call 01482 221368.

Image containing a blue background with 'Cancer Support Group, Share and Learn event' written in white text across the centre of the image.

Free Share and Learn event for cancer support groups within Humber, Coast and Vale region

By | Living with and Beyond Cancer

Humber, Coast and Vale Cancer Alliance (HCV CA) is inviting cancer support groups to take part in a free online share and learn event.

Support groups from Scarborough and Ryedale, Hull, Vale of York, North Lincolnshire, North East Lincolnshire and the East Riding of Yorkshire are invited to take part in the free event which will take place via Microsoft Teams on Wednesday 4 November 2020, 7pm – 8pm.

Recognising that many support groups across the HCV region have either paused or adapted their services as a result of the coronavirus pandemic, the event aims to provide local groups with an opportunity to share experiences, ask questions, meet similar groups from across the region and learn about the work of the Alliance.

The Cancer Alliance brings together all the organisations that commission and provide cancer services in the HCV area, enabling effective and co-ordinated partnership working to improve patient experience. By working in collaboration with local cancer support groups, the Alliance aims to ensure their work is informed and influenced by patients, carers, the public and other key stakeholders.

Alison Cockerill, Macmillan Living With and Beyond Cancer Programme Manager at HCV CA will be leading the online event and said: “Since the start of the coronavirus pandemic, we have spoken with several cancer support groups from across our region that have either paused their activities or have had to adapt in order to continue supporting those living with and beyond cancer.

“As an Alliance, we want to ensure our population is aware of the health and wellbeing support available and that groups have an opportunity to network, share and learn from each other within a supportive environment.

“We will also be using the event to update local support groups about some of the exciting work that is taking place across the Alliance, for example the recent launch of a new NHS England and NHS Improvement Quality of Life Survey which recognises that quality of life (QoL) outcomes are as important to patients as survival and asks patients ‘how are you doing?’.

Representatives from Macmillan Cancer Support and Cancer Care Map will also be attending the event, as the Alliance continues to raise awareness of health and wellbeing support from across the HCV region and beyond.

To find out more about Humber, Coast and Vale Cancer Alliance, visit www.hcvcanceralliance.org.uk or click here to sign up for the event.

If you are interested in adding your cancer support group to the Humber, Coast and Vale directory, please email karenlindley@nhs.net.

Image containing a blue background with 'Cancer Support Group, Share and Learn event' written in white text across the centre of the image.
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