Sarcoma UK Voices – The Big Conversation

Sarcoma UK are today holding their first Voices event.  ‘Changing the landscape for sarcoma’ AKA The Big Conversation.

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An early start for me to travel from London to Birmingham for a 9am start.  Eeek that’s a time of day I try to avoid and I can report that the only others I spotted as I ventured to the tube line was 1 dog walker, 1 jogger and the binmen!

If I’m honest, I wasn’t sure what to expect from today. I’ll do my best below to summarise for you.

9-10am – Registration.  I was very pleased to see some familiar faces and be able to catch up with them, find out how they are, what’s happening in their lives and receive/give a few hugs too!  I so value the camaraderie between patients, carers and patient/carer advocates.  The positive actions of each person attending and sadly often news of those who have passed away.

10-13:00 – The Current Landscape for Sarcoma

Welcome – Lindsey Bennister and Roger Wilson

I have attached links to the presentations given however have also added a few of the notes/highlights that I wrote down during the day.

Key challenges in sarcomaPresentation 1 – Professor Rob Grimer, Professor of Orthopaedic Oncology at Royal Orthopaedic Hospital Birmingham; Sarcoma UK trustee

As reported in the Mail newspaper – 1 in 4 cancers are missed or misdiagnosed in the UK.  However the headline they omitted was – 90% of sarcomas are missed or misdiagnosed in the UK.

1% of radiotherapy patients may get a radio-induced osteosarcoma in later life.

85% of people with 4 of the following ‘signs’ will be a sarcoma:
– lump larger than 5cm
– increasing in size
– deed to the deep fascia
– pain
– any recurrence of a previously excised lump.

Only 15% of sarcoma patients make it onto the 2 week wait rule.

Average time that people live with symptoms BEFORE visiting a doctor for sarcoma is 1.5 years.

Shocking results that younger people don’t tell their parents/teachers/friends about lumps until they have to!  Speak out about lumps – the earliest they are diagnosed they can be excised and treated.

Rob also spoke about a campaign that was carried out with GPs and golf balls. 988818_630607356993015_844328854_nThe premise was to alert GPs that any lump bigger than a golf ball (42mm) should have a diagnosis at a specialist sarcoma centre.  Help spread the word!

The sarcoma patient experience (findings from the National Cancer Patient Experience Survey) – Presentation 2 – Reg Race, Quality Health

Reg talked about the changes that have been influenced by the National Cancer Patient Experience Survey and some of the information that was highlighted by the results.  For the most part the attached presentation slides are self-explanatory but the main highlights were:

Patients with a named cancer nurse specialist have a better prognosis.  We need to ensure that within the NHS CNSs are available to all.

Did you know you were entitled to free prescriptions when undergoing treatment for cancer?  Most don’t but the difference in cost to a patient can be crucial to them keeping up with the drug treatment.

Not enough information about sarcoma available AND given to patients. How can we improve this?

Sarcoma patients fare badly in referral and diagnosis times.  More awareness needs to be made to the public but also referral routes for the professionals.

There is still a large (unresourced) quantity of emotional and psychological aspects to a sarcoma diagnosis.

Education for the younger population to be ‘body aware’, open to speak with adults about concerns and to report lumps and bumps when they first are noticed.

Some improvements have been made and we, collectively, need to continue to get changes made.

NHS sarcoma services: how are sarcoma services set up in the new NHS? –  Presentation 3 – Professor Jeremy Whelan, Professor of Cancer Medicine & Consultant Medical Oncologist at The London Sarcoma Service, University College Hospital; Chair of the Sarcoma Clinical Reference Group

This presentation (see attached) shows in detail the structure (as it stands today) for the NHS within the new ‘world’.  This may well change.  However it’s clear from the slides that it’s complex, there are a great deal of aspects to consider and there are voices much louder than the sarcoma and rare cancer ones.  We need to ensure that we are not forgotten.  That our pathway is as robust as that of other more common illnesses.

Maximising the voice of sarcoma patients and carers in changing the current landscape –  Presentation 4 – Derek Stewart OBE, Chair of Throat Cancer Foundation; Associate Director for Involvement in National Institute for Health Research, Clinical Research Network UK

Derek, as always, gave a truly engaging presentation.  Derek spoke about the importance and value of the patient/carer voice.  The various places that you can be involved and the level of involvement that you may wish to offer.  There is much more available than there ever was and don’t be put off and assume it will become a full time job!  Some committees and boards only meet twice a year.  Others more often.  Some roles can be done by email or online feedback and others require you to attend offices.  Some simply by speaking about sarcoma or offering to drop in leaflets to local medical facilities.

The important message however is that no matter how you are involved, your voice is crucial to ensuring improvement and changes for the sarcoma landscape.

14-16:15 – Changing the Landscape for Sarcoma

There were four workshops arranged for the afternoon and we were each asked prior to attending the day to choose two to attend.

Supporting others/protecting yourself – practice techniques – Jo Ham

I had chosen this session as I have, within the past 4 years, supported others, spoken at events and participated in conferences without thinking about the impact it has on me.  Of course I’m happy to give of myself whenever asked however often ‘retelling’ my story or delving into my experience can take me back to a place I never wanted to return.  Supporting others I’d like to be better at, listening without offering answers or advice is something that I know I can improve upon.  Lastly, loss.  Losing friends to cancer, whether they be people I’ve known for years or know because of my diagnosis, is incredibly tough.  Learning how to manage those emotions but not to switch off and stop feeling is also something I’m aware of needing.

Jo Ham, the facilitator for this session started by turning the workshop heading on it’s head.  She explained that we should protect ourselves BEFORE helping others.  A little like the oxygen masks on a plane – fix your own before helping anyone else!

Jo explained some techniques to protect yourself relating to anxiety, relaxation and breathing.  Noticing anxiety appearing and how to take control of it.  The A-W-A-R-E technique:  Accept the anxiety; Watch the anxiety; Act with the anxiety; Repeat the above steps; Expect the best.

She explained about Dr Siegal’s hand model of the brain and how to use it effectively.  Here’s a great clip

Breathing into the diaphragm and counting… in for 7 and out for 11.  The 7/11 technique.

Below is a picture with a couple of the exercise notes.  You should be able to click on the picture to enlarge and read.

Recently Updated3We then did a short exercise about ‘reflective listening’ to help us support others.

A very useful workshop but indeed way too short in time to really be effective.  Many of the exercises and principles were similar to ones I’ve learnt at Penny Brohn Cancer Caring Centre in Bristol.  I was pleased when another workshop attendee suggested that people should get in touch with Penny Brohn and attend a Living Well course.  Within my feedback and a conversation with Lindsey Bennister, I also suggested a collaborative event with Penny Brohn to host a Living Well course.

The power of your personal story: how to tell your story to raise awareness and bring about change – Graham Bound

Graham’s introduction to this workshop was to tell us about his experience with sharing his story, raising awareness for Sarcoma UK and the profile of Sarcoma generally.  His background is as a writer (http://www.penguin-news.com/index.php/component/flexicontent/23-features/25-a-stange-sense-of-bereavement-by-graham-bound) and therefore has experience of dealing with written publications and telling your story.  Graham explained his ‘journey’ and how valued a patient/carer experience is in so many ways.  He spoke about how to write or be interviewed for a piece, the pros and cons, pitfalls and tips and tricks.

The main point was to ensure that we not only mention cancer but our types of rare cancer, Sarcoma and the charity Sarcoma UK in as many appropriate places as possible.

Graham’s account was very insightful, from the point of someone who has used the written word to speak about his experience and raise awareness.  I wonder though if this workshop should be co-hosted by a media professional who can provide small vignettes and tips and tricks to work with the media – TV, radio and written word.

Final Plenary – Lindsey Bennister and Roger Wilson

I don’t think I was alone in wondering where the day had gone.  Seriously it had flown by in what seems like minutes.  The closing plenary reflected the same.

Recently Updated4

A wonderful day, too short in time, lots covered and lots to take forward to making it an annual event.  Clearly it was a valued day by so many people.  People at differing stages of their experiences and journeys and I hope one where all attendees came away with ‘action points’, clarification and new friends.  I also hope the ‘professionals’ present also learnt from their day with patients/carers.

One thought on “Sarcoma UK Voices – The Big Conversation

  1. Pingback: Sarcoma Support | AnnaGoAnna Wallace

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