Personalised Care

Gyn & Tonic is the name of the Gynaecology support group for North Lincolnshire and the surrounding area. Here, Pat Chennells, Macmillan Information Facilitator at Northern Lincolnshire and Goole NHS Foundation Trust, tells us a bit about what they do.

The group has been meeting every month since January 2018 at Robert Holme Hall, Scunthorpe General Hospital. The group was established

The group hosts seasonal craft activities – including Christmas wreath making.

following a consultation with ladies with gynaecological cancer led by the Gynaecology Clinical Nurse Specialist and the Macmillan Information Advisor.

The name of the group was chosen by the members who attended the first meetings, obviously a play on Gin & Tonic, the Gyn for gynaecology and tonic because that is what the ladies wanted the group to be. A safe space where they could get to know other ladies going through the same things, a space where they could say exactly how they felt, a space where they could get professional advice in an informal way and, above all, a space where they could laugh and have fun.

There is laughter in all of the meetings, sometimes some tears too, but there is always time for a private chat with another member, the CNS, or the Macmillan Information Advisor.

The group have even enjoyed non-alcoholic gins during one of their meetings!

The group meets on the last Wednesday morning of every month and the programme is quite varied with craft activities, quizzes and speakers usually a topic chosen by the ladies. There is also lots of tea, coffee and biscuits and if you’re really lucky… cake! We have even had a gin and tonic tasting session, non–alcoholic of course!

During the COVID-19 pandemic, we have started meeting using a virtual platform and whilst it has been good to see each other the ladies are desperate to meet each other face to face again as soon as the current situation allows. While they’re better than no meeting at all, virtual meetings simply don’t replace the face to face group meetings we’re used to and we can’t wait until we can safely get together again.

For more information about the support group, contact Pat Chennells. Telephone 03033 305372 and leave a message. On mobile, you’ll catch Pat on 07858 924 283 or email [email protected].

For information on our other support groups, visit https://hnycanceralliance.org.uk/support-groups/

With flu season fast approaching, NHS North Yorkshire Clinical Commissioning Group and NHS Vale of York Clinical Commissioning Group, along with local authorities want to reassure eligible patients that they will get their free NHS flu vaccination this year – and health partners are working together to ensure people in high risk groups get vaccinated.

The flu vaccination programme in North Yorkshire and York will begin at the start of this month. To reduce the amount of pressure on the NHS, this will be rolled out in phases, with children, care home residents and high risk groups vaccinated first.

GP practices will start sending letters out to eligible patients classed as ‘high risk’ from this month with details on how they can receive their vaccine. Alongside this the school immunisation service will contact parents and carers of children in years reception to (and including) year 7 for consent for their child to have the flu vaccine in school.

High risk patients will continue to be contacted by their GP practices and vaccinated throughout September and October. This includes: residents in care homes or other long-stay care facilities, people aged 65 and over, pregnant women, front-line health and social care workers, carers and personal assistants for someone with a Personal Health Budget, those living in a household with people who have shielded and any people in a clinical risk group (aged from six months to less than 65).

This year, in addition to the normal flu vaccination programme, 50 to 64-year-olds who do not have a health condition putting them at risk of the flu will also be eligible for a free flu vaccine later in the year. GP practices will keep this group of patients informed and are likely to invite them for a flu vaccination in November and December once all other higher risk eligible groups have been vaccinated.

Dr Bruce Willoughby, GP Clinical Lead for Primary Care and Population Health at NHS North Yorkshire CCG, said:

“Flu vaccinations are required every year as there are different strains of the influenza virus in circulation each season; immunisation is the best way to help protect people from flu. It’s a virus that has the potential to leave people very poorly, lead to hospitalisation and sometimes even death.

“We know that clinically vulnerable patients who have been shielding during the Covid-19 pandemic are still extremely worried about having contact with anyone outside of their household ‘bubble’, but I want to reassure those patients that practices will have arrangements in place to ensure they can administer vaccinations in a safe and bio-secure way. There will be strict safety measures in place, including social distancing, appropriate PPE, and strict hygiene protocols.”

Dr Nigel Wells, Clinical Chair of NHS Vale of York CCG added:

“I would urge anyone who’s in a clinical risk group to take up the vaccination offer when they receive the letter from their surgery. It will give them a much-needed layer of protection and there is absolutely no evidence that getting a flu vaccine increases the risk of getting Covid-19.

“There are many benefits from flu vaccination and preventing flu is always important, but in the context of the Covid-19 pandemic, it’s even more vital we each play our part and do everything possible to reduce illness and protect NHS and health care resources for those who need them the most this winter.”

Dr Lincoln Sargeant, Director of Public Health at North Yorkshire County Council said:

“Having the flu vaccination is one of the most important steps people can take to protect themselves and others from flu and we encourage everyone who is eligible for a free NHS flu vaccine to have one this year, gaining early protection from influenza this winter.”

Councillor Carol Runciman, Executive Member for Health and Adult Social Care, said:

“This year it is more important than ever that we protect ourselves and each other by getting a flu jab. We are working with partners to ensure people are able to get a flu vaccination as quickly as possible and to ensure high risk groups have access first.

“We will be sharing information throughout the coming weeks and months and I would urge everyone to play their part.”

Patients who do not fall under any of the eligible categories for a free vaccine should not worry as they will also be given the opportunity to be vaccinated at local pharmacies. However, it is crucial that those patients identified as ‘at risk’ are protected first.

For more information about at risk groups and what counts as a clinical ‘at risk group’ go to https://www.nhs.uk/conditions/vaccinations/who-should-have-flu-vaccine/

Back in 2012, at the age of 36, Joanne was diagnosed with breast cancer. She underwent a lumpectomy, chemotherapy, radiotherapy, oophorectomy and was given a drug called Anastrozole for ten years. Here, she tells us why she began a support group and what Hope House has done for her local community.

Even with a supportive family, close friends and three small children, my breast cancer diagnosis made me feel isolated. I wanted to ask questions and talk to others in a similar situation. I was 36 and expected to meet others like me but most people I came across were a lot older. They were amazing people but I wanted to see how others in my position had dealt with this, especially concerning my children. I could cope with anything thrown at me; I just didn’t want my children to have to cope with it. During chemo, I used to daydream; I even planned a place called Hope House where people could come together for support.

In January 2014, Bosom Family Support held its first meeting. A local piano school kindly donated £600 for me to get the group going, and we met in a local Village Hall, each with a cup of tea and a slice of cake, ready for a chat. Ten of us met that first night, shedding tears of all kinds as we told our stories one by one. This was the start of our support group.

Reflecting on the session, I knew we couldn’t emotionally process that much crying every time, so we introduced activities. We did everything from Easter bonnet parades, flower arranging and book folding to golf, decoupage and art classes – never forgetting the tea and cake! To date, we have supported around 80 ladies. Some people stay for years, some people come and go as they need us, some people move on after our support and the group simply isn’t for others.

Since then, we’ve gone on to support a group for children called Liferafts. It’s based on the same ideas as Bosom Family Support but specifically for children whose parents have or have had cancer.  Over the years, our meetings have become more about friendship. We’ve gone on bus trips, had afternoon tea, and even formed a choir.

The constant throughout everything was that support was there for the many challenges that people face after a diagnosis of cancer. When the hospital appointments stop, our comfort blanket is removed, I see our group as one that fills a gap. We are not medically trained, nor experts in cancer, but we have an understanding; we know that it is not only an emotional battle but a physical battle as our lives return to this new normal. For someone to be able to say “I get that”, “I understand” or “that happened to me, too” makes us instantly feel less alone. As a group, we have experienced highs and massive lows, and the support that this group has given to one another, especially during those lows, has just been incredible.

That daydream of Hope House was never far from the back of my mind and, last September, we successfully opened our doors to welcome even more people from the local community. Hope House is always buzzing with different activities held there; the cuppa and chat, the treatment room, the counselling room and the children’s room. It is a warm, welcoming and friendly place to visit. It’s a hub where we can help all members of the family after a cancer diagnosis – cancer doesn’t just affect the patient.

Like many others, our world came to a standstill back in March and I really struggled to think of how we could continue to help others. We did the online quizzes, discos, but knew those having active treatment for their cancer would be struggling as they had to shield at the same time.

We came up with the idea to deliver a nutritious meal to families once a week so they had one less thing to worry about. At the beginning, we thought we could run it for around four weeks, but we’re now into August and have provided over 2800 portions of food to approximately 73 families. We’ve had fantastic support from The Wortley Hotel, local Lions Groups, Rotary Groups and other local businesses and are now able to fund the meals until the end of September.

More recently, we’ve been able to reopen the doors at Hope House to resume counselling and are planning a phased return to normal from September. We can’t wait to get back to providing support to anyone in our local community affected by cancer because we know that no one should face cancer alone.

For more information about our group, please contact Jo on [email protected]. You can find the group on Facebook here.

For a map of cancer support groups in the Humber, Coast and Vale area, click here to head to our directory.

Mum of three, Lizzie Parker was diagnosed with brain cancer in 2019. Since her diagnosis, Lizzie has been using her own experience to raise awareness and help others by sharing tips and advice on how to “live your best life despite the forecast”. Here Lizzie shares her experience of living with cancer through the coronavirus pandemic:

As the world begins to think about returning to ‘normal’, as a cancer patient this seems like something only I could wish for and consider. ‘Normal life’ goes out the window the day you are told you have joined the cancer community and this is not something anyone ever thinks might happen to them, so when preparing for this world you find yourself in, it is something none of us are prepared for.

What I haven’t stopped thinking about is the hundreds and thousands of people who have been diagnosed in the last three months during this pandemic and how being hit with cancer diagnosis in the midst of minimal community support and with the global pandemic of fear, must be ever so frightening. Because they won’t even have found their ‘normal’ in the cancer community and the fear of infection mixed with treatment and recovery is terrifying.  However, there are positive stories.

“People are being treated and people are living with cancer through Covid-19.  I am living proof.”

My story through Covid-19 started with brain surgery on Monday 6 April.  First week of lock down!  What a way to begin!  It was expected but unexpected and that unfortunately is the world of cancer.  You think you are on a path and it can change instantly with no notice just like diagnosis, it comes out of nowhere!  Or maybe it didn’t. Maybe you knew something wasn’t right a long time ago and just ignored the symptoms.  Maybe you have symptoms right now but are putting it to the side because you fear entering a hospital or GP setting or perhaps you are fearing what they might say.

If you look at national statistics right now the probability of having cancer is much higher than having Covid-19.  But are you driven by statistics?  Unfortunately, as a society we let numbers rule us and not our heads and even less likely our common sense.  So when I got the phone call four days before to say, ‘You have 24 hours to decide Mrs P whether you are going forward with brain surgery on Monday at 7am, and I will ring you Sunday night to confirm that I am ready to see you 7am on the operating table’.  Bear in mind the world was shutting down that week and patients where coming in thick and fast. This potentially was a very daunting prospect.

What went through my mind? I needed the surgery. That was not up for negotiation.  Three months of living with this tumour could have a dire outcomes without surgery.  It was a mass and it was operable and the surgeon was positive it could come out successfully but obviously surgery comes with its own risks and then the added risk of infection.  I have been on a Therapeutic diet now for a while which sees my blood profile as being very positive so this made me more positive that my immune system was strong enough to cope.  If I contracted Covid-19 I wouldn’t avoid the hospital because that is the best place to be and there are plenty of other highly infectious viruses and diseases in society that one can catch in a community of people.

I have faith too and this is what I went with. Also with the knowledge that through treatment last year, when my bloods were pretty thin to say the least, and I needed transfusions, I didn’t avoid treatment once or entering the hospital environment then, and I was at much greater risk of infection last July with my lack of immunity or blood stability.  You are well looked after and they really are doing their best to keep you contained and everyone else.  In fact this year the environment was much better regarding contamination and infection.

So I climbed my way onto the surgery table at 7am on Monday 6 April and I walked out of Hull Royal Infirmary on Tuesday 7 April and had tea with my kids at the table that evening just like ‘normal’!  Success again!  I couldn’t have any visitors while I was there, but I was fine with that and it was very surreal waking up after surgery to face masks but think of the positives.  I didn’t have to worry about any of my family being at risk and the visors etc just reminded me how much care the nurses are taking to ensure you are not at risk of infection.  They are not enjoying this, as it is not their natural bedside manner but they still continued to care as best they could in the circumstances. I couldn’t have asked for better care.

Returning home to recover in lockdown has had its ups and downs.  The initial thing that was really hard to deal with was that we all felt that we were starting again.  Life was turned upside down the first time and we worked hard to find a new ‘normal’ and then again that got thrown up in the air.

The support that once was, had changed again. So with talking to friends and family we found our support network again because there are plenty of people who want to help.  The thing that I have learnt through this is that people can’t read minds and you have to ask for help! Once you ask, you really will find that people want to help you.  You just need to ask the right people.

So all in all I think I can say so far that I am living and recovering well with cancer through Covid-19 and it hasn’t been in any way that bad despite surgery right at the beginning.

My points to everyone in this piece are:

–  If you have symptoms that you are concerned about then contact your GP surgery because cancer doesn’t disappear on its own and you are safer getting treated than not.  Time is of the essence in diagnosis.  Don’t sit on it.

– Hospital admission is scary but read the positive stories.  Hundreds of people are entering hospitals everyday and coming out better for treatment.

– If you or anyone you know has cancer and you want to do something to put yourself in the best possible position.  Research the best possible lifestyle and diet/nutrition for your condition.  Get your body in the best possible health and prepare your body for treatment.

Finally believe that you are going to be fine and even in the darkest hours have faith that you can do this.

If we could bottle positivity, it would be the best medicine on the shelf.

Lastly, If you felt that this post helped you in anyway follow my blog on Facebook GameChanger where I discuss the ins and outs of living through adversity in the most positive way possible.

“It’s about living your best life possible despite the forecast.”

Thank you to Lizzie for sharing her experience of living with cancer through Covid-19. If you would like to follow Lizzie on Facebook, please click here.

The government has updated its guidance for people who are shielding taking into account that COVID-19 disease levels have decreased over the last few weeks.

Around 200,000 cancer patients who are shielding remain vulnerable and should continue to take precautions but can now leave their home if they wish, as long as they are able to maintain strict social distancing.

Doctors in England have identified specific medical conditions that, based on what we know about the virus so far, place some people at greatest risk of severe illness from coronavirus and the list of extremely vulnerable people includes people with specific cancers and those at certain points in their treatment.

If any of the following applies to you, please follow the updated advice on shielding (detailed below):

• someone with cancer undergoing active chemotherapy
• someone with lung cancer undergoing radical radiotherapy
• someone with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma at any stage of treatment
• someone having immunotherapy or other continuing antibody treatments for cancer
• someone having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
• someone who has had bone marrow or stem cell transplants in the last 6 months, or are still taking immunosuppression drugs

Shielding advice

Those classed as clinically extremely vulnerable are advised to take additional action to prevent exposure with the virus. If you’re clinically extremely vulnerable, you’re strongly advised to stay at home as much as possible and keep visits outside to a minimum (for instance once per day).

The updated guidelines are:

1. If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping 2 metres apart.
2. If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household (ideally the same person each time).
3. You should stay alert when leaving home: washing your hands regularly, maintaining social distance and avoiding gatherings of any size.
4. You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
5. You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).

The Government is currently advising extremely vulnerable people to shield until 30 June 2020 and is regularly monitoring this position.

For more information on government-led guidance on shielding, click here.

If you’re currently shielding and are looking for support, click here for details on how local groups have adapted to be able continue supporting cancer patients and their families.

You can also view our Project Officer Zoe’s top tips for shielding below.

Registered charity, Pancreatic Cancer UK is providing a range of support for those living with pancreatic cancer.

The charity is a useful resource for anyone affected by pancreatic cancer and is offering the following help during the pandemic.

Support Line

A team of pancreatic cancer specialist nurses are available to offer information and support to anyone affected by the disease and can answer concerns related to coronavirus (COVID-19).

Freephone 0808 801 0707 Monday – Friday 10am – 4pm. Or email [email protected].

Expert information to order or download

Booklets and fact sheets, which have been reviewed by clinical experts, are available to order or download. The charity will regularly be adding new information about how people with pancreatic cancer can improve their wellbeing during the outbreak.

Discussion forum

Pancreatic Cancer UK’s online discussion forum is a supportive place where everyone affected by pancreatic cancer can be there for each other, any time of day or night. It is a place where you can discuss everything from how to navigate the healthcare system, to how to talk about cancer with your loved ones.

Nurses will be producing short video clips and blogs to help people access support and information. The forum can be accessed here.

Pancreatic Cancer during COVID-19 (PCC) Network

Pancreatic Cancer UK is developing a network which will aim to allow pancreatic cancer specialists to discuss and develop treatment and care pathways for patients with pancreatic cancer during the pandemic; develop and share consensus approaches; and allow clinicians to discuss specific, local issues with colleagues from across the country. It will support management planning for patients with pancreatic cancer and help the charity begin to create a database during the outbreak to inform future clinical decision making and clinical trials.

The below resources and support of the Network will be available throughout this time for you to access if and when you wish:

Virtual Meetings: attend/view virtual meetings to share and discuss the latest updates, approaches and challenges

Shared Folder: access the most up-to-date guidance notes around the treatment and care of pancreatic cancer in the UK during the pandemic

Newsletter: their newsletter will share a summary of the latest updates, documents, recorded webinars and any other useful information

Discussion Forum: the charity is looking into creating a secure forum for you to ask questions, share and collaborate with others

For access to any of the above, if you have any updates or information that would be useful for the wider community, or if there are any other ways Pancreatic Cancer UK can support you, please get in touch with the team.

Freephone 0808 801 0707 Monday – Friday 10am – 4pm. Or email [email protected].