A Talk Given By A Consultant Colorectal Surgeon From The RSCH.

Notes from the talk given by “JC” at the C-Side meeting on Tuesday 30th October, 2018

JC gave a detailed, personal and informative talk, answering all the questions we had prepared for him:

  • How do surgeons combat tiredness?  What is the limit on hours they can work?
  • Do surgeons get nervous?
  • Regarding long term symptoms : what ought we to worry about?
  • One of our members has a split in the wound following a stoma.  It requires packing every day.  He had no warning that this might be a result of the operation.  How common is this situation?
  • How do you deal with a blocked ileus?
  • Can you explain the research you are doing  in Italy regarding the colon when re-sectioned.
  • What is the current expected waiting times for treatment  and the situation regarding cancellations?
  • How much theatre time are surgeons allotted each week?
  • How are the cuts affecting Bowel cancer operations?
  • Do you have any statistics for the year regarding the number of operations/ survival rates/ costs?

The personal questions provided an insight into the work of JC and his colleagues.  He made the following points:

  • Operations can take between 1.5 and 6 hours, and can last 9- 10 hours.  He can get tired and can deal with two major cases in one day.  There are no limits to the hours that he works, although it is supposed to be 56 hours.
  • He does get nervous as he has an understanding of all that can go wrong.  He downplays these but is often working to within fractions of a millimetre.  Sometimes difficult decisions have to be made such as whether to sacrifice the spleen instead of the bowel.  There is a high level of stress in the operating theatre which is difficult to differentiate with nervousness.

Regarding surgery:

  • There is altered bowel function after surgery that can take anything from 8 weeks to 2 years for the system to settle. Lower rectal surgery can cause difficult day to day functioning.  Complications in the anal canal system has a risk of infection.  Perineal wound surgeries can have more prolonged problems.  This is not something that can always be predicted.
  • Ileum surgery often causes vomiting and there can be a danger of aspirational pneumonia.  The contents of the bowel must be kept out of the lungs.  Tubes are inserted to alleviate vomiting.  Most blockages to the ileum correct themselves and are often twisted or pinched.  If there is a food bolus obstruction this may require surgery.  If there is a parastomal hernia as a result of a stoma where several bits of bowel stick out outside the muscle, it can be decompressed to see if it will settle.  Further surgery may be necessary.
  • Italian research has shown that a fluorescent substance can show up under ultraviolet light indicating blood supply to the bowel during surgery.  This can very effectively show whether there is a sufficient blood supply for an operation, which can reduce the likelihood of failure during  anastomoses (join in the bowel).  Anastomotic failure can be reduced from 10% to 1.5% using this system.  At present the Consultant Colorectal Surgeons are trying to persuade the Trust  to use this technology.  NICE should make it a mandatory part of the surgery.  It also has benefits in other surgeries such as gall bladder surgery.  This massive piece of research adds about 3 minutes to an operation and costs about £10,000 – £100,00 with the higher figure being for a laparoscopic stick.  It makes operations much safer.

Economic and administrative considerations:

  • Brighton does have an issue with waiting times for Colorectal Cancer surgery but is experiencing the best situation for years – diagnosis, decision to treat and date for surgery is approximately 2-3 weeks.  But there are still delays before the decision to operate as this depends on colonoscopies, MRI scans and CT scans.  At present there is a shortage of scanners and radiologists.  Ideally diagnosis to surgery should take 4 weeks.  However, although cancer takes priority, there are cancellations when the hospital is too full or overstretched.
  • In Brighton of 300-400 patients are diagnosed, 70-100 need surgery.  There are  150-250 Bowel surgery operations annually.  4 surgeons are rectal specialists and 6 specialise in colonic surgery (the 4 who do rectal surgery plus 2).  They are audited nationally and outcomes are well within the accepted range of mortality.
  • Fortunately government cuts do not affect serious health problems such as cancer, heart disease and diabetes.
  • As a final note, JC explained that Dukes staging (A, B and C) is now historic.  Now TNM (Tumour, Node and Metastasis) staging is  used to describe where a patient is in his or her bowel cancer.

Cancer Recovery Package

On 29th March 2013 BBC News on-line broadcast this:-
“All cancer patients should receive a “recovery package” at the end of their treatment offering ongoing support, the Department of Health (DoH) has said. It calls for care targeting patients’ financial, mental and physical needs. Macmillan Cancer Support, which helped develop proposals for a recovery package, estimated that about 200,000 people were not getting a package of support following their treatment.” You can read the entire news report here:  http://www.bbc.co.uk/news/health-21968714

Since then the National Cancer Survivorship Initiative (itself set up in 2008) and Macmillan have developed and refined the Recovery Package; NHS England are encouraging  all CCGs, as a matter of urgency to adopt it. Whilst there is no lack of enthusiasm and support amongst front-line NHS clinical staff, the full implementation of the programme is tardy; during a future meeting we hope to be able to report on the actual progress being made. In preparation for this you are invited to click on the above diagram, you’ll be directed to more details of the Package. In summary it has four main components:-
a) Holistic Needs Assessment & Care Planning.
b) Treatment Summary
c) Cancer Care Review.
d) Health and Wellbeing Events.

For a further description of the Recovery Package and one presented in a slightly more patient friendly fashion click on this; there are one or two faces in it that you may recognise!

Life Kitchen

The idea of Life Kitchen is simple, but enormously persuasive. As anyone who has undergone chemotherapy will tell you, one of the most frequent and demoralising side-effects is a loss or dramatic change in the sense of taste. Life Kitchen is designed to try to help mitigate that loss, to teach cooking skills and recipes that might restore some pleasure in food, and to do so alongside others facing similar challenges.

Read more about Ryan Riley, who lost his mother to cancer, and his achievements in gaining the interest and attention of well known chefs and TV cooking personalities such as Nigella Lawson, Hugh Fearnley-Whittingstall and Ton Cenci, who features particularly in this recent article in the i newspaper, or this one in the Guardian newspaper.

Screening for Bowel Cancer – An Update

Presented by Nicola Nye, SSP and Theresa Ayres Lead SSP to Mid Sussex Bowel Cancer Support Group 17th July 2018

The Sussex Bowel Cancer Screening Programme was introduced in 2008 to lower the mortality rate of those people with CRC and bring it in line with the rest of Europe. We serve a screening population of approximately 978,000 people which incorporates two Trusts – Brighton and Sussex University NHS Trust and East Sussex Healthcare NHS Trust. Under the umbrella of Bowel Cancer Screening there are 2 screening Programmes

Bowelscope – once in a life-time Flexible Sigmoidoscopy offered to all those aged 55 years old in our catchment area. This test looks at the left side of the bowel  and can remove polyps which  means you are less likely to get bowel cancer as we know that 70 -80% of bowel cancers start in this area.

Faecal Occult Blood test (FOBt)  – 60-74 year olds

Presently participants complete a home sampling kit called a Faecal Occult Blood test, sending off a sample of faeces to the Screening Hub laboratory in Guildford. The kits are sent out every 2 years and If the sample is positive for a pigment found in blood the participant is offered a clinic appointment with a Specialist Screening Practitioner for review. They are then assessed for suitability for a colonoscopy. In some instances a CT scan of the Colon may be discussed instead.  

Colonoscopy is the gold standard procedure offered because it allows us to diagnose and treat certain abnormalities. A colonoscopy will identify 98% of abnormalities whereas a CT scan of the colon is comparable but could mean a colonoscopy is still required to remove any polyps or take tissue samples.

 The stool test kits are sent out from a central booking hub in Guildford. At a national level there are plans for the FOBt test to be changed to a more sensitive and specific test namely, the Faecal Immunochemical test (FIT). . The age group offered FIT may be extended to include younger patients possibly from 55 years; this is not confirmed at present.

Due to the more accurate outcomes of FIT and the fact that the home test will be easier to undertake the suggested impact on screening will be an increase in uptake. This will result in more referrals for   colonoscopy and increasing support services, in particular the pathology service.   The new test will be easier to undertake at home so it is expected that uptake will increase resulting in more of the Sussex population taking up screening with the benefits of early detection of any abnormality.

At present after the age of 74, people can choose to opt in to Bowel Cancer screening by phoning the Guildford programme hub on 0800 7076060 and requesting to be sent out a test kit.

Those diagnosed with bowel cancer within the screening programme who remain within the age range are offered an FOB test 2 years after diagnosis. At this time, they may still be under the care of the cancer services and may choose not to participate in screening at that time; those overage can also request a test kit by phoning the Hub.

We promote awareness of symptomatic changes in health. Sometimes there are no symptoms of bowel cancer in the early stages. We encourage people to report any rectal bleeding, change in the frequency of their bowel habit and any abdominal pain to their GP rather than waiting for the next round of bowel cancer screening. We encourage people to be aware of life style changes that can influence their health and reduce the risk of bowel cancer; Such as stopping smoking, reducing alcohol intake, increasing physical activity and increasing intake of fruit and vegetables.

The Specialist Screening Practitioners have completed extra training to undergo this role, they are qualified senior nurses who also offer support when a patient is first identified with a suspected cancer and who coordinate the progress of the patient from presenting the patient at the Multi-Disciplinary Meeting (MDM), liaising with the Cancer Nurse Specialists, and organising any further investigations or informing the patient of our suspicions.

Some facts and figures from the FOBt programme

In 2017 in the Sussex programme the uptake was 59.55% (uptake is the number of eligible participants who return the FOBt kit)

The positivity in 2017 was 1.18% (positivity is the number of kits testing positive, from all those returned)

In 2017 the Sussex programme undertook the following investigations:-

663 colonoscopies

44 CT colonogram

20 limited colonoscopies /flexible sigmoidoscopies

Cancers detected since the start of the programme in Nov 2008 to date = 558

The BCSP nationally, since inception in 2006 has detected 29,134 cancers to date.

In Sussex since 2008, left sided cancers detected = 453

In Sussex since 2008, right sided cancers detected = 103

Treatment

Surgical 389

Endoscopic 79 – removal of polyp cancers

Non-invasive 49 – includes chemo/radiotherapy

If you have any questions or would like further information please email BCSP@bsuh.nhs.uk

Macmillan Coastal Garden Trail – 28th/29th July 2018

Take part in the 7th Coastal Garden Trail to raise money for Macmillan’s Horizon Centre.

Driftwood Fundraising Group is holding the 2018 trail on the weekend of 28 and 29 July. Popular gardener, Jim Buttress, will open the trail at 11am at Driftwood in Seaford on the 28 July. Click on the image to find out more on the important event taking place on our Sussex doorstep.

Now, these are all going to be fantastic and C-Side wouldn’t want to promote any particular garden – but you might want to have a look at Annelise’s poster.

Family History Service

At our June meeting KIrtsteen Daly gave a talk on the role that the Family History Service and genetics science plays in establishing the risk of inheriting diseases – particularly colorectal and similar cancers. It was a brilliant and thought provoking presentation and Kirteen has given permission for her notes to be recorded here in video form.

Please use the control bar at the bottom of the screen to manage the video playback, sound level etc;, it may also be viewed full-screen.

 

Here’s some related links (just click on the icon):-

The Colorectal Family History Service is based at the Royal Sussex County Hospital. The service assesses your family history of cancer to determine appropriate screening and whether or not genetic investigations are possible within your family. The service is lead by Dr Suzi Green and managed by Family History Nurse Specialist Kirsteen Daly. A referral from your GP or hospital consultant is required.


We’re passionate about our guts! Guts UK’s vision is a world where digestive disorders are better understood, better treated and everyone who lives with one gets the support they need.

 

The Hereditary Colon Cancer Foundation is a nonprofit organization serving the hereditary colorectal cancer community. Our vision is to be a beacon of light – extending life expectancy, enhancing life quality, and instilling hope in those diagnosed with hereditary colon cancer syndromes.

LSUK was founded in early 2014 by a group of people that originally met on a social media support group. Being frustrated by the lack of information and stories of erratic screening regimes throughout the UK, we came together to change things for people affected by Lynch Syndrome for the better.

 

Molecular testing strategies for Lynch syndrome in people with colorectal cancer. Diagnostics guidance [DG27] Published date:

SBS – Financial Wellbeing Webinars for People affected by Cancer and other Illnesses

St Bernard Support (SBS) provides assistance to people affected by life limiting illnesses such as cancer, heart disease etc. The people they help include people diagnosed with life limiting illnesses, their families and their carers. They also provide assistance and training to medical professionals and other organisations (charities, support groups etc) to enhance their ability to support people.

On 14th June and 25th June 2018, SBS will be hosting Webinars covering the following topics at the stated times:-

  • 11 am – Pensions
  • 12 pm – Wills, Trusts & Lasting Powers of Attorney
  • 2 pm – Welfare Benefits

Please contact admin@s-b-s.org.uk or call 0800 7720723 to participate in the webinar. Click on the logo to connect to their website and find out more.

Free Macmillan Training Courses

Jane Viner (Macmillan Engagement Lead – South East) would like you to be made aware of this programme of training opportunities. To see a brochure for details of all courses to be run throughout the South-East click on the picture. Here is a list FAQs (frequently asked questions). As you can see, some courses are designated for Macmillan and Health care professionals, but those suitable for Cancer Support Groups, Macmillan Volunteers and People Affected by Cancer are summarised below:-

Listening and Responding
We all like to think of ourselves as good listeners, but do you want to do more to develop our listening skills, so that you can better support people affected by cancer? This workshop will help you to identify the differences between listening and other helping strategies such as providing information and advice as well as developing and practising your listening and responding skills in a supportive environment.

5th February 2018 – Guildford
15th June 2018 – Maidstone
21st September 2018 – Brighton


 Speaking with Confidence
This one day introductory public speaking workshop will bring out your natural speaking strengths.
Learning outcomes:-

  • Learn to speak with clarity and confidence.
  • Address fears and overcome nerves.
  • Learn how to engage an audience.
  • Use your experience to write a dynamic speech, structuring your content to greatest impact and then deliver a speech with confidence and authority.
  • Dealing with questions during speaking.
  • Applying these skills to next steps in your volunteering or public life.
  • Find a way to enjoy speaking.

14th March 2018 – Guildford
6th April 2018 – Maidstone
9th May 2018 – Brighton


Group Facilitation Skills
This one day workshop will help to develop your skills in working with groups in a facilitative style.
Learning outcomes:-

  • Create a positive environment for group learning.
  • Identify key skills and qualities of a group facilitator.
  • Enhance communication and influencing skills.
  • Learn how to manage challenging behaviour
  • Raise awareness of learning styles and the impact of group dynamics.

27th April 2018 – Stevenage
6th June 2018 – Guildford
29th August 2018 – Eastbourne


 How do I apply?

To book on to a course or for further details about the venue, facilities, and timings, please contact your Learning & Development Team on: LondonSELearning@macmillan.org.uk  or Tel: 01904 756447 


Help develop How Macmillan Engages with People Affected By Cancer and Local Communities

We would like people living with cancer to have a role in shaping the future of Macmillan, this work will help us to understand the best ways of including people living with cancer in the planning, delivery and evaluation of our work in the community.
We are engaging people living with cancer in a number of different ways. We are visiting local support groups and asking for opinion and feedback from members during the meeting. We are also carrying out 1 x 1 sessions with people if they are unable to join us in a meeting.

If you would like to get involved and for us to come along to your support group or meet you on a one to one basis please do let me know: jane Viner – Macmillan Engagement Lead – jviner@macmillan.org.uk

We would like to learn about the experiences and needs of LGBTQ people in Brighton and Hove and Sussex who are affected by cancer 

Macmillan Cancer Support and Brighton & Hove LGBT Switchboard are working together to engage with the local community to learn about the experiences and needs of LGBTQ people in Brighton and Hove and Sussex who are affected by cancer.  This engagement work will be used to inform how LGBTQ people affected by cancer can be best supported; and to identify areas where improvements to patient experience can be made through Macmillan and in collaboration. 
Switchboard has created two surveys as part of the project and would love to hear from as many people as possible.  One is for LBGTQ community members affected by cancer (including partners, carers and family members of people with cancer); the other is for professionals (including volunteers) supporting LGBTQ people affected by cancer.  Switchboard is also holding two focus groups to learn more about the experiences of these community members and professionals.  Take either of the surveys to receive details of the focus groups, or email chris.brown@switchboard.org.uk.

Survey links:
LGBTQ community members survey: https://www.surveymonkey.co.uk/r/J7H7R7X
Professionals supporting LGBTQ people affected by cancer survey: https://www.surveymonkey.co.uk/r/J98DWHT

Have Your Say About Macmillan’s Community Engagement Values and Principles

At Macmillan Cancer Support we understand how important it is for people living with cancer to have their views and opinions heard, particularly about their cancer experience. We want to be clear in our commitment to engaging with people living with cancer and their families in their own communities. As a part of this commitment, we are developing a set of community engagement values and principles and we need to ensure that they are meaningful and have people living with cancer at the heart of the process.
For us to do this well, we need to really understand how you feel about the values and principles that we’re proposing. We’d really like your feedback on what they mean to you; whether we have missed something important; what it would look like to you when they are working well and anything else you think we need to know. 


So now you’re ready to get involved, we’d be grateful if you could take a short survey (it shouldn’t take longer than 10 – 15 minutes) via the following link.  https://www.surveymonkey.co.uk/r/EngagementVP


If you would like more information about any of the above please do let me know.

With kind regards,
Jane Viner
Macmillan Engagement Lead – South East
Email: jviner@macmillan.org.uk  
Telephone: 07790 015 448

Administrator for South East Service Development Team
Email: south&eastadmin@macmillan.org.uk
Telephone: 01904 756 463
Address: Macmillan Cancer Support, 3 Fawcett Street, York, YO10 4AH

 

 

David Schneider talks to palliative care consultant Kathryn Mannix

David Schneider is terrified of death. In his two editions of One to One, he wants to try to overcome his fear by talking to those who have first-hand understanding of dying. In this programme, he talks to Palliative Care consultant, Kathryn Mannix. With almost forty years of clinical experience and witnessing over twelve thousand deaths, she believes that a ‘good death’ is possible even when you are seriously ill. She explains the process of dying to David. This, she believes, if accepted by the patient, removes much of the anxiety and fear surrounding the end of life.

 To listen to a short, edited, clip from this episode just operate the controls below:-


Jenny Diski, a writer, died in 2016. She was also interviewed a few months before her death by David Schneider about her struggle with cancer and her feelings knowing that death was approaching.  To read and hear David’s interview with her please visit this page.

The Elephant in the Room?

In this unprecedented book, palliative medicine pioneer Dr Kathryn Mannix explores the biggest taboo in our society and the only certainty we all share: death.

Told through a series of beautifully crafted stories taken from nearly four decades of clinical practice, her book answers the most intimate questions about the process of dying with touching honesty and humanity. She makes a compelling case for the therapeutic power of approaching death not with trepidation but with openness, clarity and understanding.

With the End in Mind is a book for us all: the grieving and bereaved, ill and healthy. Open these pages and you will find stories about people who are like you, and like people you know and love. You will meet Holly, who danced her last day away; Eric, the retired head teacher who, even with Motor Neurone Disease, gets things done; loving, tender-hearted Nelly and Joe, each living a lonely lie to save their beloved from distress; and Sylvie, 19, dying of leukaemia, sewing a cushion for her mum to hug by the fire after she has died.

These are just four of the book’s thirty-odd stories of normal humans, dying normal human deaths. They show how the dying embrace living not because they are unusual or brave, but because that’s what humans do. By turns touching, tragic, at times funny and always wise, they offer us illumination, models for action, and hope. Read this book and you’ll be better prepared for life as well as death.

(n.b. the above review is by Goodreads – for further information go here. The book is also available in the UK from other on-line sources such as Amazon and stores such as Waterstones).