Category Archives: info

In Conversation with Macmillan

When is the event?
Wednesday 25 November, 6-7pm

Background to the Event
During the pandemic, Macmillan has discovered from our social media shout-outs in September (Instagram, Twitter and Facebook), that 94% of people want to hear from a case study, 94% want to hear about how to manage side effects, 95% want to hear about emotional support and 91% about rights at work.

It is hoped that this event will connect people with cancer together and highlight some of the support that is available during the pandemic. It will provide an opportunity for people to hear from Macmillan professionals and other people living with cancer on themes around: treatment and care since the pandemic; signposting to Macmillan support; loneliness and isolation; rights at work; and some of the queries that may come up in the live chat.

What’s the Event Format?

6-6.30 pm Mandy, a person living with cancer, in conversation with Terri (Macmillan communications manager).  Broad discussion on themes.
6.30 – 7pm Presentations from a panel of colleagues across Macmillan, a Clinical Nurse Specialist and the Macmillan Cancer Information Support team. Broad themes will be: treatment and care since the pandemic, and the implications of the pandemic on loneliness and isolation, signposting to Macmillan support, works assessments and rights at work.

During the event, people will be able to submit questions via a live stream.

After the event, the video will still be available to view on Facebook and YouTube and there will be a shareable link to the recording.

Please find the link below to the Facebook page.

https://www.facebook.com/macmillancancer/photos/-mark-it-in-your-diary-and-set-your-alarm-our-in-conversation-with-macmillan-eve/10158591812647199/

Mark Witcomb
Macmillan Engagement Lead – Surrey and Sussex
Telephone: 07458 056996
Macmillan Cancer Support 
3 Fawcett Street, York, YO10 4AH

For information, support or just someone to talk to,
call 0808 808 00 00 or visit macmillan.org.uk
Tailored resources for people with cancer concerned about the coronavirus are available at macmillan.org.uk/coronavirus
Further resources to support Macmillan professionals are available on Learnzone

The Forgotten “C” Campaign – A Message From Macmillan

Cancer care is at a tipping point. During the first wave of the pandemic, thousands of vital appointments, surgeries and treatments were cancelled. Our new report, which launches in the media on Thursday 29 October, reveals the devastating impact this has had for many people living with cancer.

We are extremely concerned to see this happening again in the ‘second wave’, with staff being redeployed and intensive care wards filling up in the worst affected areas.

That’s why we’re asking everyone to get behind the Forgotten ‘C’ campaign, as we call for UK Governments to ring fence cancer services to prevent the backlog from growing. 
This is the most worrying time in recent history to get a cancer diagnosis. Now more than ever, people living with cancer must be able to get the right treatment and care, with the right support, at the right time. 

Take action, and show that you see the forgotten ‘C’

  1. Sign and share our open letter, calling on the decision makers for health in England, Wales, Scotland and Northern Ireland to take urgent, radical action now to ring-fence services and prevent the backlog in cancer care and treatment from growing.
  1. Add our frame to your profile picture on Facebook, to help Macmillan make sure the needs of people living with cancer aren’t forgotten.
  1. Visit our website to choose a poster to print and display in your front window, showing others you see the forgotten ‘C’.
  1. Read our new report ‘The Forgotten ‘C’? The impact of Covid-19 on cancer services’, and media coverage to learn more about how the cancer backlog has impacted so many people living with cancer, and why urgent action is needed to prevent the backlog. 

Message from the BSUH Lower GI Macmillan Team

“ Hello all, I’m glad to share a brief update from RSCH.  We are all now back in our ‘normal’ jobs after a brief period of redeployment during the acute phase of the Covid pandemic earlier this year.

It has been fabulous to welcome two new team members recently, Leanne Tory is our new junior sister, she is working with the team three days/week. Leanne has a wide range of experience including GI surgery and cancer care. Molly Hughes is our new part time Macmillan Support worker, she will be supporting the team two days/week, she is also currently completing her Masters and has a particularly interest in radiotherapy.

The lower GI Macmillan team is still short staffed due to vacancy and maternity leave. We are re-advertising for a band 6, junior sister/charge nurse role and hope we will be able to appoint at the interview late November. The post holder will work three days a week. We look forward to welcoming Zoe our Support worker back from maternity leave in March next year.

In order to ensure people at home have support the team is working differently and have been focussing support on the helpline, to respond as quickly as possible to enquires and help deal with issues and concerns. Due to the reduced staffing levels we have not been able to run our nurse-led clinics or support consultants in clinic but hope to restart these vital services as soon as we can once the team is fully staffed again.

Some tests both in diagnostic phase and follow up have been delayed by Covid but the teams involved are doing their utmost to get investigations done in a timely manner, if you experience any delays please do not hesitate to contact us or if it is a follow up test, contact Claire Theobald and do feedback to the Patient Advice and Liaison Service team about how the delays have left you feeling (01273 64511 or 01273 64973 or email at bsuh.pals@nhs.net

The Macmillan Horizon Centre is slowly reintroducing services so it’s worth keeping an eye on the web site every few weeks to make sure you don’t miss out on any services

https://www.macmillan.org.uk/cancer-information-and-support/get-help/centres/macmillan-horizon-centre

We wish you all well and hope you and those important to you are keeping well during these ‘unusual’ times”

from Gill & The Team

Holistic Health Assessments

Click within the picture on the left to view this leaflet …


A Holistic Needs Assessment is a vital component part to a patient’s Cancer Recovery Package.

C-Side is proud to have lent its support to our CNS team as they have helped develop and deliver the package. Click here to view a previous posting.

 

 

Stressed ??

These are difficult times for everyone, especially those worrying about their health. Here’s an interesting video showing you how to manage that stress-

 

 

Coronavirus, Cancer and You

These are worrying times for everyone, especially for those with pre-existing medical conditions, such as cancer. Please follow this link to see what Cancer Research UK has to report on:-

  • coronavirus and cancer treatment
  • coping with cancer during the coronavirus outbreak
  • what to do if you have symptoms of cancer during the coronavirus outbreak
  • cancer screening and coronavirus

For many of us there are concerns that the pressures on medical workers and the necessary measures being taken in surgeries and hospitals are already having the unforseen consequence of the under-reporting of possible cancer symptoms in both new and current cases. Reasons for this include a) patients being fearful that hospitals may not be safe places to be, whether they are or not, and b) patients simply not wanting to burden an over-worked NHS.

We All Need Exercise

Convatec is well known as a manufacturer and distributor of products necessary for those living with a Colostomy, Ileostomy or Urostomy. Its website, through its me+ programme,  also contains a mass of useful information on factors playing a major role in the life of those with a stoma. A key feature in the recovery from stoma surgery and going on to life a full-life is exercise. Click on the image or go here to see their advice.

 

What happens after Brexit and what could it mean for cancer?

What follows is a blog by Mark Heffernan, who is an EU public affairs manager at Cancer Research UK. To see it in the original form follow this link.


At 11pm on Friday 31st January, the UK left the European Union. It’s a day that’s dominated UK politics for almost 4 years, and now it’s arrived the question becomes – what happens next?

In short, very little will change in the first few months.

That’s because while the UK will no longer be part of the EU, it’s set to enter a post-Brexit transition period. And during this period, which is due to last until 31st December 2020, negotiators from the UK and EU will decide what our future relationship with the EU will look like.

While these talks are happening, most EU rules will continue to apply in the UK. Travel and trade to and from EU countries, for example, will stay largely the same as when the UK was an EU member.

If the talks are successful and a deal is agreed, the ‘new relationship’ is due to start on 1st January 2021. And that’s when the biggest changes are likely to happen, including some that could impact cancer research and patients.

Here are some of the key issues that we want prioritised during post-Brexit talks.

Continuing to collaborate on clinical trials

Right now, the UK and EU work together very closely on trials. Around 3 in 10 Cancer Research UK-supported trials take place with a country in the EU, and there were 4,800 trials between 2004 and 2016 that involved the UK and other EU countries.

These international trials are particularly important for testing new treatments in rare and childhood cancers, where there may not be enough people to take part in a single country.

It’s vital that any future relationship continues this collaboration, which means ensuring the UK and EU have compatible rules on how trials are run.

The EU is bringing in new rules for how trials are run through a Clinical Trial Regulation. The changes are popular with researchers, who believe they’re a big upgrade on the current system.

We want UK Government to look at becoming a part of the new system – including negotiating access to the Regulation’s new database, which will make setting up UK-EU trials safer and easier.

Getting access to the newest treatments

Another key post-Brexit issue is ensuring people in the UK get access to the newest treatments without delays. And that means looking at how drugs are licensed.

When we were a part of the EU, the UK worked closely with the European Medicines Agency (EMA) to assess if new medicines were safe and effective. This was a mutually beneficial relationship – the EMA benefits from the UK’s expertise though our own national medicines regulator, the MHRA. And people in the UK benefit too – the EMA is responsible for an area worth about 22% of the global pharmaceutical market, the UK on its own is worth only 3%.

There are concerns that a split from the EMA could introduce delays in the UK, with pharmaceutical companies going to the bigger European market first, and to the UK second.

It’s in everyone’s interest for the UK and the EMA establish a new way of working post Brexit and continue to work together closely on the testing and licensing of new medicines.

Attracting top scientists from around the world

We’ve blogged before about how important it is for researchers to move between countries to live and work. It’s essential this can continue

Half of our PhD students aren’t originally from the UK. And this flow works both ways – 72% of UK-based researchers have spent time at an institution outside the UK between 1996 and 2015, building both their expertise and crucial links with international partners.

To enable this to continue, the UK Government must design an immigration system that allows us to attract, recruit and retain researchers from all around the world. But the future UK-EU relationship will also be important.

As Freedom of Movement ends, the UK and EU will need to decide new rules for how researchers can travel between countries. There have been some promising signs that the Government understands how necessary this is, but the next step is to protect researchers’ ability to move across borders to work on vital shared projects like clinical trials.

Collaborating across borders

It’s not just trials that benefit from collaboration across borders.

Shared research programmes – where scientists in the UK and their partners in the EU work together – are not only a source of funding for UK researchers, they also help build the cross-border collaboration which is so important for medical research.

And while Cancer Research UK doesn’t directly receive money from these EU funding schemes, we know how valuable they are for building a world-leading research environment in the UK. And we think UK research should continue to benefit from them after Brexit.

That’s why we’ll be pushing for Government to seek access to big European research projects, like the forthcoming Horizon Europe – which is worth about £80 billion over the next 7 years.

Beyond Brexit

Brexit day has been the source of intense discussion for the past 4 years. But when it comes to determining our future relationship with the EU, it’s just the beginning.

A lot remains to be worked out over the next 11 months. And we’ll be working with people in the UK and across Europe to ensure the issues that matter for patients and research are brought to the table, and that the new relationship is one that helps us drive progress against cancer.

 

The NHS Dismantled – In Support of the Original Article

On 7th November we copied an article published in the LRB (London Review of Books) by John Furse which outlined what in his view is the ongoing threat to the NHS posed by privatisation. In a subsequent edition the LRB published two letters criticising the article. The authors of these two letters were Helen Buckingham (a Director of the Nuffield Trust) and Mary Guy (a lecturer at Lancaster University). In the next edition of the LRB the following letter was published by Roy Macgregor (a front-line GP) applauding and supporting John Furse’s original proposition.


As a GP, I sighed with relief reading John Furse’s article on the NHS. No lies on the side of a bus, just home truths. The critical letters the piece received in response do not reflect the changes that have already occurred on the frontline.

Frank Dobson, as Tony Blair’s first health secretary, oversaw the introduction of the National Institute of Clinical Excellence (NICE), intended to help end the ‘postcode lottery’ in the availability of treatments. It has been a partial success but huge variations in availability of treatment remain. What has followed is an ever increasing barrage of guidelines, pathways and directions for clinicians, setting the parameters for what they can and cannot do. Young doctors and nurses, with no memory of any other way of doing things, treat these guidelines as if they were rules while general practice has been transformed into a Kwik-Fit operation that doesn’t give you the freedom to choose even the tyres your patient should have for their onward journey.

An elderly patient with a bad head injury attending casualty is seen by a triage nurse who is obliged to follow specific guidelines. He is treated for a facial cut and broken nose. But severe symptoms persist for four weeks. Only when he returns to see a doctor is a CT scan requested. The scan explains the symptoms. Had he been just a few months older at the time of the accident, he would have been old enough to qualify automatically for a CT scan.

Ankle and knee injuries used to be judged on their severity and other factors specific to the patient. Now the only pathway permitted is to direct the patient to make contact with his local ‘musculoskeletal service’, which is delivered by an outsourced private, profit-driven provider. After telephone consultations, he may, eventually, get to see a physiotherapist; only then might he be referred to an orthopaedic consultant. This may be more than six months after the initial contact. What cost the time off work, the limiting of mobility and exercise, the weight gain, the consequences for the patient’s mental health?

Another patient survives a heart attack because someone in the community performs CPR on her. After being taken to a major hospital, she is given a full cardiological and pulmonary work-up. Two weeks later a request arrives to refer the patient to cardiology for review. When the question is asked what blood tests or other cardiology tests were done when she was admitted the answer is none. New referral, further costs, more anxiety for the patient and her family.

The NHS is being dismantled, and the effects are felt daily by patients and staff alike. Everyone is struggling to practise safe care. So long as sensible thinking and commonsense selection of tests and referrals – specific to each individual – are excessively restricted by guidelines and by fears over costs, we will all suffer; and in the end, no money will have been saved.

Roy Macgregor
Cambridge