Sarcoma SPAEN Conference – Day 3

Posted on 12/10/2013 by AnnaGoAnna

PATIENT INVOLVEMENT IN CLINICAL RESEARCH
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Derek Stewart, OBE Associate Director for Involvement at National Institute for Health Research – Clinical Research Network, England
Public Involvement in clinical research
Improving Research – Involving patients, carers and the public

“Whilst you have your voices, use them and use them to effect.”

I’m not a researcher, a doctor, etc but that shouldn’t stop us getting involved in research. We don’t need to know what they do but we need to sometimes tell them what we see. It is our job to bring the professionals back to earth. Never think you need knowledge, a university degree, particular skills… all of us can get involved in research.

From patient … to advocate, activist, ambassador and associate

www.throatcancerfoundation.org
Twitter
http://derek-online.blogspot.co.uk

Participation – taking part in a trial
Engagement – I get a newsletter, find out what’s going on, I’m asked to go to meetings.
In the middle – Patient Involvement. Where we actually hold hands with each other working together as clinicians, researchers and patients.

Why is it important for SPAEN?
Your Patient and Carer EXPERIENCE is of VALUE
Gold dust to researcher… they can work on it forever more. YOU have knowledge.

Did you know about cancer before you got it?

Your knowledge is fantastic.
You still have questions that are unanswered. How do I get those answers? That’s research.

Our bodies. When they ask us to get involved. It’s our bodies. We should have a say in that. It is our DNA what happens in it, what happens in genetics we should be able to speak about.

It’s our money £££$$$$. The charities are not the funders of research… it’s our money given to them directly or via taxes. Never forget it.

How can we make a difference?

Inform -> Form -> Influence

Inform – your experience can help. Tell them what happened but remember that sometimes researchers live in a little bubble and think that their idea is the best ever. They need the experience to understand… that’s us. We can work with them to learn and influence to improve the system and the policies.

Consultation -> Partnership -> Patient centred culture (bring fresh air to open the doors and windows)

Clinical Research Network in England. Supports the infrastructure in England Funding an integrated Clinical Research Network.

Supports Involvement of Patients, Carers and Public involvement
£3m put into it. 1,200 patients.

It is 70 days from accepting the trial to the first patient involvement.

A Movement for Change
Fight for Sarcoma, GIST and Desmoid. Bang that drum at all times.

But on the bigger picture. We’re all aiming to create better research. Based on our experience ad patient outcomes as a result.
We are all wanting to see simpler and more effective systems that get research on to the books.
We should all be making sure there is clearer access to research studies. (Hospitals claiming they’re a world leader in research but reception didn’t know… no leaflets etc… On the website ‘get involved in research’ it says how to donate body to research.
Improved recruitment. If we’ve not helped with the leaflets, what time, etc Think about what’s needed to improve the recruitment process.
Open access for results. We need ALL trial results to be published. They cannot hide the results.
Speedier application. Good research needs to be applied not sit on a shelf somewhere. The clinician (ALL) should be up to date and giving us the best and up to date information available based on the research. Always ask your consultant – ‘What’s the research on this?’ Is this the latest research?’
Better patient outcomes. Sometimes research is done for clever researchers but we need to ask what is the outcome and what is the difference that this is going to make.
Satisfactory experience. Do we ask people what their experience was like when they participated in trials?

Are we making a difference?

Action on Access booklet
Impact of Patient, Carer and Public Involvement in Cancer Research – NCIN leaflet.
Sarcoma UK’s Research Advisory Committee

Getting Involved
Understand the context. No point in going into a meeting with a researcher – are they looking at recruitment, funding or what?
Be clear about the goal and the purpose. Don’t expect an answer… Goal and Objective Settings. If you ask researchers you often get the answer – I’ve just been told to involve patients. Discuss.
What happened? What was the impact? If we don’t’ have a goal we won’t know if we’ve achieved it.
What was the benefit? (Benefit may be negative – feed it back to them..)

Context – purpose – impact and benefit.

What can you do? 20th May International Clinical Trials Day.
Let’s have you doing something. SPAEN members… promote it. Raise the profile of research.
Simon Denegri’s lay review

Involvement for Access
UK Clinical trials database

When we first got involved the British Medical Journal wrote an article about patients getting involved in research about patients being aliens at the table.

View from the Top
Dame Sally Davies – “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.”

Signpost people to consent form, finding out information, exploring impact. Learn the language of trials. Do not give up…

When patients are present, we make a difference.

Q&A Session
Q – we are trying to involve Europe wide in clinical trials. One more problem is that European Clinical Trials Register is not suitable for giving information to patients as it’s not accurate or complete.
A – It’s why we need to be at the table and keep doing this. Danger in Europe from some drug companies fighting against open access. We mustn’t do solely fight for one cancer against another disease… we keep on.

Q – Inspiring presentation. Positive energy thank you. How do I respond to my Dr that once I have mentioned that I am participating in a patient group, they close all the doors and windows?
A – Only tip I can give you is try to find another Dr in the area, another clinician, another group…. Because when your Dr hears you are talking to them, they often think ‘I should be doing that too’. Often Derek asks ‘what are the problems you’re facing and how can I help?’. Ask them about why they get involved, what their passions are etc… build a rapport.

Q – We have the opportunity to create a patient group in bone sarcomas. Do you have the experience and wish to be involved?

Q – What would you say are the three main points to get involved?
A –
– Knock on the door.. if you can’t get through the door, go through the window.
– Never feel that you haven’t got a right to be there.
– Keep a simple diary, a few notes about what it felt like not knowing. We need to remember what it’s like for someone starting out. “I walked ½ way round the lake but was too tired, so walked all the way back”. As you know as you learn you improve… remember what it’s like at the start.

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Markus Wartenberg, SPAEN, Germany
Practical experiences and examples from patient organisations

Patients Involvement in Cancer Clinical Research.

When we look to our experience as patient groups.

Majority of patients. No or less knowledge about trials or experience. Perhaps about experiments not trials.
Very often we see we have no transparency about access. Where do we find Clinical trials in rare cancers?
Access and specifically in rare cancers. Access beyond borders in EU.
Access in the direction of losing patients who are not being referred to trials because doctors are losing the patients.
Practical issues – schedule? Distances? Costs for the patients.
Informed consent. Very often a medical legal wording that is too much to understand for patients.
Some patients are not aware they are on a clinical trial!
Is the right trial centre the real experts?
Sensitive topics like placebo trials in cancer.

Cancer patients 6-12% of cancer patients are participating in clinical trials.

Public image vs guinea pigs
Barriers to clinical trial accrual/recruitment

This leads to delay in knowledge/innovations, slower progress etc.

Trials and Endpoints?

Patients don’t care about ‘endpoints’
Their personal status/pathway/options -> important whether they ‘hope for/expect a
- Cure
- Stabilisation of the disease
- Slow progressing disease
Important
- Expert care in rare caners (centres of excellence)
- Multi-model approach
- Drugs – resection – radiation – clinical trials

Often it’s a ‘game’ against time…

Trials and Treatments?

Critical – how close are trials/trial results to daily practice?
Difficult:
- Meaningful?
- What drugs can deliver and what we need?
- How to measure an innovation/a breakthrough?
- What is value for money?
- Target therapies – how to define progression?
- Do we need more ‘me to drugs”?
Targeted therapies – Belittlement of the side effects
Quality of life is a very individual topic
Individual and ethical
Very critical – if treatments are/would be available but are not reimbursed.

Big issue at the moment is we need future options. We need better treatments for the future. But at the moment we also see that we are not able to get the best out the therapy. We need innovations but also need to be involved with the industry and experts to get the best out of the treatments at the moment.

Each patient is unique. There is no THE patient. The obvious differences, gender, age, ethnicity etc but so much more!

Patients who are going into clinical trials. They have an emotional overload as they enter the trials. Fear, shock, hope life death, new territory, confused, depression, anger, need support, options expectations.

Patients have physical aspects: Family commitments, work commitments, side effects, job career, fatigue etc.

Cognitive Aspects; regarding cancer but also for the trials. A new area to learn about.

What’s the role of patient organisations in clinical trials:

Information, knowledge, education, inclusion criteria.
Inform about background of clinical trials.
We can communicate as a patient organisation about available and upcoming trials. Work closely with the medical experts to find out, seek information and work ‘with’.
Making trial issues more understandable. Our job to interpret.
Supporting recruitment in specifically rare cancer sub-types.
Informed consent
Aspects of quality of life
Dissemination of the results… positive and negative results.
Involvement at the design stage. Work together on the issues for the future.

Dialogue with the Customers!

Patients are the customer… previously it was always the doctor… needs are changing

Partnership: Translate From/To The Patient/Customer
Physicians/Researchers <–> Patient Group <–> Researching Industry
<——————————————————————————->

Other players in the room – research organisations, regulators, HTA, payers etc.

Patients/Patient advocacy groups have a lot to offer

A common patient voice
Patient advocacy groups can argue in a way – experts/pharma can’t
Motivation to be involved
Needs overall
Expert patients
Etc
Etc

Clinical Trials’ offer some collaborate fields
Information access, design/quality and recruitment.

INVOLVE: Challenges

The general challenge is not specific enough for rarer cancers
Current trials system vs practice
Pharma/ experts often have no experience why and how.
EU trials directive – legal, confidentiality, regulatory aspects etc.
Involvement as early as possible. Not as troubleshooters but from the beginning.
Public media opinion. Collaboration is vital.
Patient organisations. How to identify patient organisations who are interested, prepared or willing to be involved in trials. Perhaps knowledge.
Patient organisations as a professional behaviours. Set rules with industry and behave!
We need to go back from talking more to action. Are there pilot projects to learn from.

INVOLVE: Solutions

How can we get the best out of our current therapies? Looking at them in practice and work out what to get out of them and improve.
New mindset: Patient centric research = Collaboration. Not lip service!
Awareness. Bring the topic to policy, healthcare, regulations and the public. Sometimes we need to seek it out other times people will come to us.
Working in initiative s for rarer cancers.
Working through a better approach for the informed consent EORTC.
Intense discussions with our industry colleagues. Getting feedback following completion of a clinical trial… this surely would improve the next one!
Training of patient organisations. Understanding cancer clinical research.
Medical advisory boards – we need to be involved in a collaborative way in each of these boards for the whole process and have the opportunity to talk to the regulators
Look at pilot projects.

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BASICS OF STRATEGIC PLANNING FOR PATIENT GROUPS

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Markus Wartenberg, SPAEN, German and Lindsey Bennister, Sarcoma UK
Lecture: The basics of strategic planning and practical experiences from a patient group

Strategic planning is an important part of business skills for patient groups. Idea of session is introduction to the topic…

Questions to consider:

Is your group thinking/planning strategically
Are you creating strategies from a share vision
DO you learn from the past and gather information from and about the external environment
Do you have immediate measurable goals in place
Are individuals or the boards (teams) accountable to plan
Is the organisation creative and flexible
Does it recognise, reward and institutionalise positive change.

What about shared vision?
Often people have a difference expectation and view of what is needed or required. You need to find a common shared vision.

A lot of areas in modern life are using ‘strategies’

marketing strategy
politics
elections
survival strategy
military
etc

What about patient organisations and non-profit organisations… makes sense to use strategies.

What is a strategy?

A method of plan chosen to bring about a desired future, such as achievement of a goal or solution to a problem.
The art and science of planning and marshalling resources for their most efficient and effective use. The team is derived from the Greek word of generalship or leading an army.

Your team! Your goal! Your proceeding? What Questions? How do you do it?

Setting part goal posts, markers to get there.
What materials do I need? What resources, tools, people?
Sharing responsibilities amongst the team members
Assuming responsibility as a team member.
What experience does the team have?
What conditions, environment etc influence your planning?

We have to think about the process and plan. Discuss and build up a strategy and planning process to get there.

What is Strategic Planning?
A systematic process of envisioning a desired future, and translating this vision into roadly defined goals or objectives and a sequence of steps to achieve them.
A systematic approach through which an organisation agrees on the priorities that are essential to its mission and responsive to its environment.
Future/Vision Mission
Goals
Analysis
Agreement
Strategy
Etc

What is strategic planning NOT…

A prediction for the future
A smooth, predictable, linear process
A substitute for judgement of leadership.

Hope is NOT a strategy.

Benefits of Strategic Planning.

Defines mission, vision and values
Establishes realistic coals, objectives and strategies
Ensures effective use of resources
Provides base to measure progress – need to assess value and feedback
Develops consensus on future direction
Builds stronger teams. A lot of people coming together motivated to do things but are they doing things in the right direction and utilising their skills and strengths.
Solves major problems.

Some thoughts for the process

Strategic planning involves choosing the highest priority achievements over the period of 3-5 years.
What is the strategy to achieve goals.
Strategic planning builds commitment to the vision.
Important for all levels of the organisation to be involved.
A strategic planning committee
Outside consultant/facilitator to facilitate conversations, capture external interviews, move the process along or to maybe draft the final plan.
In the end, Plan must be owned by the board/staff in order to move it successfully and strategically into the future….

First activity:

To assess the current situation and review the relevance of the mission and programs
Developing a ‘plan for the plan’ ie this means that if this is a big organisation how will you develop and implement the plan.
What is the outcome of the strategic process?
What is the time frame?
Strategic planning committees composition. Full board members, staff involvement and perhaps an external facilitator?
Thinking, collective experience, external and internal research.

Second activity:

Summarise the organisational history
What has been accomplished and what has NOT been accomplished between the plans.
Collecting data and information to make decision.

Book – strategic planning for non-profit orgs

The big 5 for strategic planning:

Mission
- Why does the organisation exist?
- What is the reason for being?
Vision
- How will your community be changed and made better by what you have done?
- What is your organisations vision of excellence
Value/Beliefs
- What core principles should guide your organisation in the present and into the future?
Goals
- SMART goals. These are outcome statements
- Strategies
- How are you going to meet the goals?

Remember if strategies get too detailed, you are moving away fro m strategic planning and into annual operational planning.

Swot – Analysis

What are strengths and weaknesses of organisation. Opportunities, threats etc facing us. This will help with key priorities and process.

Strengths and weaknesses

How is your organisation positioned?
What are the internal challenges?
What are the areas where the organisation shines?
Organisation reputation and history
Weaknesses such as capacity, funding, infrastructure etc

Questions:
Resources or strengths that help us to accomplish our mission or mandate or create value for our members (and their patients).
Internal weaknesses are deficiencies in resources or capabilities that hinder us to accomplish our mission or mandate or create value for our members (and their patients).

Opportunities and threats
These are the external factors to the organisation.
Are there new programme areas where you should be new, new funding, community collaborations, regulations, government, economy dependencies etc.

Questions:
External opportunities are primarily outside factors or situations that we can take advance of to better fulfil our mission or mandate or create.
External threats or challenges

SWOT and other tools
Identify the current environment and will inform your plan. You need to understand what is going on with your environment otherwise you will l have problems about reaching the goal and implementing the strategy.

Screen external relations. Who are the people the organisation are working with? Medical experts, Industry, payers, regulators etc.

What are the main stakeholders the organisation is dealing with. What are their roles, influences, interests, expectations? Are they target groups/audiences for future actions?

But also collection of available data? Do you know everything, have information on target groups, how do they behave etc. About environment and perhaps legal influencers in anyway. Do you know what the needs and expectation of your patients and carers really are?

To complete ‘your picture’ you can also initiate surveys, interviews focus groups etc.

All required to build your strategy for the future.

Putting Patients at the Centre of Healthcare – Strategic Plan 2010-2014 – iAPO

Measurable Activities…

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Lindsey Bennister, Sarcoma UK
Transforming the landscape for sarcoma
Sarcoma UK’s Goals and Strategy 2014-2020

“If you don’t know what you’re going to do, you can’t know that you’ve made an impact”

Lindsay summarised further the importance of planning and strategising that Markus had referred to in his presentation.

Sarcoma SPAEN Conference – Day 2

Posted on 11/10/2013 by AnnaGoAnna

Dr Rachel Brindley (Clinical Psychologist) and Elaine Stewart (Cancer Support Specialist), London Maggie’s Cancer Centre
Morning Talk – What to do when treatment comes to an end? – Practical, emotional and psychological issues

What’s it like to be facing this diagnosis in your country?
What are the challenges?

Majority of people say they weren’t offered support. But the search for information helped however it was their way of coping which might not be right for others.
Misunderstanding of what palliative and hospice care is. Perhaps the communication isn’t good enough to understand what options are. Discussions between Patient and Dr need to be better to understand the options but also to think about what is the job of an oncologist, palliative care, hospice etc. Learning a new language.

What are the supports?
What are the main psychological issues that people with advanced disease face?

Living with uncertainty. Realise the disease is progressing and recurrences but not knowing and living along side the disease whilst maintaining a quality of life.
Significant adjustment process that needs supporting. Adjusting to the knowledge of advanced disease but finding your new place.
Fear of future of family if I die?

Ripple effect of cancer:
Medical – treatment effects, nutritional needs, physical
Quality of life – Sleep, leisure activity, shopping, socialising (eg meals)
Relationships – Changing roles, sexuality…
Difficult emotions – Low mood, anxiety, guilt, shame, anger (at disease, at family at God)
Self Image – Body image, self-esteem, confidence
Existential–Spiritual – Meaning of life, create a legacy, purpose…
Financial/Legal – Work status, holiday insurance…

Q – Psychological support to the physicians?
A – It’s also a burden on the clinicians and medical team. Is this why they’re not best to share bad news.

Fears and questions about death and dying?
What are some of the fears?
What do people want to know?
What is it like talking about these?

Can be victims of complementary and alternative therapy?

Italian Dr shared a story – Shocked on his very first day of work in new role in LA, he was taken into patient’s room. Colleague starts talking.. in next few hours/days explains respiratory and cardiac arrest is near. We can resuscitate and will only delay a few days. Shocked about how brutal they were with the patient.
In Italy the percentage of patients with this kind of information is only 1% or less that are given details about death and dying. In Italy many patients don’t want to know they are going to die. Physicians problems start much earlier than this point.

Very individual choice about knowing what is going on.. time to clear things, discuss with relatives, friends etc think about funeral and future of family.

Patient choice… has to be a sensitive and individual choice by patient.

When do you discuss?
Again very individual to find the time to discuss. Discuss in part. Listen to learn what the other person needs to hear.

Fears about death and dying
Fears about dying:
1.     Fear of the process of dying
2.     Fear of the consequences of death for loved ones
3.     Existential fear of death itself

Planning Ahead
What does this mean to you?
What would be helpful for you to think about?
What resources are available to help you to plan ahead?

Comment from member of the audience: for many in the UK we have never experienced death in the first 40 or so years of our life. Death isn’t talked about.
Comment from another member of the audience: – Clinician discussions are often very different and difficult. Training for clinicians and learning to signpost and be honest to refer.

Stages of Grief – Kubler-Ross
Denial -> Anger -> Bargaining -> (Anxiety) -> Depression -> Acceptance
Not a case of working through but cycling back. Perhaps anxiety is missing on the diagram?
Perhaps should be ‘Not knowing’ at the beginning of diagram.
Some people may never get to the Acceptance phase but back and forth earlier on –ie they’re not able to accept death.
Perhaps include Guilt

Self-Care
Close involvement with people at end of life involves managing complex medical problems and working with high levels of emotional distress

Discussion
Consider the impact that working with people with advanced disease may have on you and other professionals.

1.     What signs would you want to be alerted to in
a.     Yourself?
b.     Others?
2.     What strategies do you feel would be helpful/important in preventing and managing these?

“The heart must first pump blood to itself” – S.L. Shapiro
Support staff teams
Opportunities to debrief and reflect after difficult/distressing incidents
Opportunities to discuss what went well
Peer or individual supervision
Access to training, appropriate information
Time – to reflect on work, and for own needs
Feedback from senior management: positive, constructive
Balance between work and home life.

How might you be able to carry on some of these conversations/ideas when you get home?

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ADVOCACY MARKET PLACE SESSIONS
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Barbara Dore. Chair, Gist Support UK, SPAEN
How to Organise Patient Group Meetings

Think about and objectives for patient meeting.

Objectives

Information/Education
Exchange between patients
Support (you are not alone)
Patient empowerment
Relationships with
- Experts who may speak at meetings
- Industry experts.
- If near clinic/training/university then perhaps invite team/students etc.
Reasons to donate (not just in terms of money. Can also be their time).
Finding volunteers

Session formats

Lecture presentation
Workshops
Case studies
Panel discussions
New experiences (yoga…)
Background sessions psychological support etc)
Vary the pace of the meeting during the day/meeting
No more than 2 hours without a break.
Networking time!

Topics/Speakers

Consider the audience
- Previous feedback
- Newcomers/experienced
Variety of subjects – from the academic, technical and practical
Structure the day – after lunch spot needs interactive and care in planning.
Interaction keeps the audience engaged.
Brief the speaker as to content
- Ask them if they want time cues
Reminder 1 week beforehand
Prepare some questions for Q&A
Write and thank speakers afterwards

Location

Budget
Site visit
Accessibility
- Travel easy?
- Disabled access
- Car parking?
Layout – flow
Resources
- A/v
- Poster display
- Flip charts
Registration desk.
- Name labels,
- programs
Signposting to meeting
Refreshments (every 2-2.5hrs)
Networking

Volunteers
Staff during the meeting

Registration Desk
Assistance to guests
Passing microphones around
Collecting evaluation form
Taking note from the meeting report
Distributing papers (Agenda etc)
Photographing
Getting Contact details
Circulating and meetings/ welcoming all participants
Getting photograph permission

Announcing the meeting

Inform and invite all attendees
Experts physicians nurses clinic
Invitation letters/leaflets posters
Invite by Email postal delivery, Facebook, twitter, website, email group
Press
Online calendar
Continuity slides. Welcoming slide before presentation and also slide for lunch or welcome back to the afternoon session.

The Day

Meet and Greet
Network in Breaks
Feedback?
Think about next time.

Enjoy

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Roger Wilson and Claire Kelleher, Sarcoma UK
Patient Group Survey

Why do we do questionnaires?

need to get information
need to get opinions
experiences
often get new ideas

Need to be quite clear about objectives for survey.

Sarcoma UK is a patient led organisation. Likes to involve patients in any initiative and involvement. Part of Information Standard process is you must involve target participants ie patients. Done by various means, feedback or through email, telephone, speak to people at support groups etc.

Clear objectives in mind when thinking about questionnaire.
Who do you want to contact? Patients? Carers

How will you contact them?
How are you going to find them?
How will they respond?
How will you record numbers in a meeting and is there any value?
Do you need documented or formal responses?

Once you’ve got data from responses what will you do with those replies? Putting the data from the questionnaire into a spreadsheet for analysis is time-consuming.

How will you handle their replies and analyse the responses?
Once you have an analysis what are you going to do with it?

Got to have these things sorted in your mind before you start the survey process. Otherwise it may be past its use by date by the time you use the analysis.

Claire – How we’ve used our surveys. At British Sarcoma Group Conference in February we asked specifically about written information.
Asked the group in workshop (patients, clinicians and CNSs) what they thought of information (using Macmillan and Cancer Research UK’s written info). Most people said too complex and difficult to understand ie the lesson learnt use simplest terms that we can.
Negative feedback re glossaries – most people in the workshops found it difficult to flit back to glossary rather than explaining what a word means as they go along.

Survey about information and support – what info have you found? When did you receive it? Etc… so Sarcoma UK can understand what patients are experiencing and better support patients as they should be.

Collate research data. One reason why survey used?
Use methodologies and tools that have been validated academically. So that the data can be taken seriously by professional bodies (wherever possible).

One of the tools that is most readily available is the EQ5D which looks at quality of life.

Is this form truly useful for cancer/sarcoma patients?

Currently working with Royal Marsden for sarcoma patients with advanced cancer.

Claire – Example of how patients’ information can be used within gynae-sarcomas.
There is a gap of information around this type of sarcoma.
People upon diagnosis not given information… there is very little.
Sarcoma UK are developing a booklet.
They have an information review panel (both patient review panel and a professional review panel).
All information goes through the process first with the professional panel looking for inaccuracies.
Next to the patient review panel – is it easy to understand? Is it the information they want to see?

One problem we had is that there isn’t that many people we have on the information review panel with this type of sarcoma.
We put a call out to the women we knew about to invite them to be involved in the review panel.
In January we’re holding a Webinar (with Maggies) to offer information and advice to ladies with gynae-sarcomas and also to gather information about what they would like to include in the information leaflet.

The information leaflet is then due to be published early next year and will be available on the Sarcoma UK website to download.

We do get it wrong as well…

80 responses.
People had written all over the form and written on the back of the form. Realised they were only scratching the surface with this survey. Didn’t look at it well enough or in depth.
Hadn’t expected to also see hospital doctors lack of sarcoma information as well as GP (which had been expected).
If we’d been able to test the survey with 10 or 12 patients beforehand, Roger thinks a very different survey would have gone out.

Ended up writing a three page analysis of this survey which frankly was a load of waffle as the real conclusions had no data to support them as it was supplied anecdotally in the margins of the form rather than as answers to not very well worded questions.

Lesson – get objectives right before you start and test the questions to ensure you are asking the right questions in the right way to the right people.

Q – how would you deal with when a patient asks for privacy in answering a questionnaire.
A – Responses are anonymous. Don’t ask for other personal information that might identify someone.
If someone doesn’t want to give information… they don’t have to.

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Ian Judson, The Royal Marsden Hospital UK
Marco Fiore, Istituto Nazionale Tumori Milan, Italy
Strategies for Metastasis in Sarcomas and Gist – Perspective of oncologist and surgeon

50% of people diagnosed with sarcoma will NEVER have another problem after primary treatment.

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Ian Judson – Sarcoma Unit, Royal Marsden
Management of metastatic disease – soft tissue sarcoma and GIST

What are the roles of chemotherapy for soft tissue sarcomas?

Palliation of advanced local or metastatic disease
Pre-operative treatment for large tumours?
Adjuvant chemo in large, high grade, extremity tumours?

Palliative treatment of advance disease. Crudely if you lump all sarcoma together the median survival isn’t great. Probably about a year.

We did a trial in the EORTC combination v single agent – the 62012 trial

Slight improvement in progression free survival but no significant improvement in overall survival.

How can we use this data?

If objective is response – tumour shrinkage or remove specific symptom (pressure on nerve) then justified in using combination therapy.
If objective is palliation, then no real value in using combination therapy… single agent treatment (consequential if needed) is probably best.

What subtypes are particularly sensitive to chemotherapy?

Most sensitive subtypes appear to be
- Synovial sarcoma
- Myxoid/round cell liposarcoma
- Uterine leiomysosarcoma
- Other?
But N.B. – data are sparse on individual disease outcomes.

Other effective agents. We use a combination of agents depending on the sarcoma type. But we’re dealing with small numbers and difficult to assess.

Hormone sensitive sarcomas

Endometrial stromal sarcomas & some low grade ER/PR+ leiomyosarcomas, respond to oestrogen deprivation
In premonopausal women GnRH agonists or oophorectomy
In postmenopausal women – aromatase inhibitors
We usually use letrozole

When is chemo unhelpful?

What’s the future?

Molecular biological information that we can translate into new treatment.
In part:
Some tumours, types, mutations can be difficult to treat or apply a ‘rule’.

Some progress with translocations (chromosome swapping) ie synovial sarcoma translocations
Chromosomal amplifications – ie when it copies and becomes a driver for the sarcoma.

Median survival is improving as we discover more. We have more drugs being used. Differing regimens.

Conclusion
Range of treatments available for treating metastatic sarcoma.

PHYLLODES – COULD BE SARCOMA OR CARCINOMA (hence confusion about where it sits in medical teams)

~~~~~~~~~~

Marco Fiore, Instituto Nazionale Tumori Milan, Italy
Strategies for metastases in Sarcomas and GIST – A surgeon’s perspective

Looking at surgeries about how we run trials.
Conclusion should perhaps be that it is about patient choice and perhaps the studies should be addressed retrospectively in order to obtain patient randomisation. Patient choice needs to be made with sufficient information to make an informed choice.

~~~~~~~~~~

AFTERNOON SESSION – SARCOMA TRACK

~~~~~~~~~~

Jean Yves Blay, Centre Leon Barard Lyon, France
Update on new and ongoing trials

There are many clinical trials….

You understood for clinical trials that we are dealing with a very well structured setting. The majority of trials are done in multiple continents.
We are moving from a situation doing trials in all sarcoma sub-sets to a situation where we are targeting histologies. This is changing the landscape an adds a level of complexity. The end of the story will be not only focusing on sub-types but molecular sub-types within. Results in small number of patients and work collectively globally. It will not be possible to demonstrate the use of an agent

3 messages

Global approach
Histology Driven
Very important in know randomised trials, approval of the agent and prove that something is superior to another.

Bone sarcomas

Osteosarcoma
- OS2006
  - Exploring bisphosphonates in a randomised setting
  - FSG, EORTC, others
- Euramos 2? 5 years to do the first trial. What next in Euramos 2 trial?
- Country specific trials.

Ewing
- Ewing 2012 (FP7)
  - Comparing VDC/IE to VIDE (comparing US regimen to the European regimen)
  - Exploring bisphosphonates
- EuroEwing trial
  - Piloted by the German group.

PoC studies in Ewing/Osteo
- Mifamurtide, linsitinib (EuroSARC WP6)

Chrondrosarcoma
- PoC study of neoadjuvant mTOR inhibition
- Hh inhibitors (vismodegib) negative
- EuroSarc projects

Chordoma
Trials on mTOR, TKI (imatinib, sorafenib) completed

Soft tissue sarcomas

Neoadjuvant
- Histology tailored treatment in EuroSARC (WP5)
  - ISG, GEIS, PSG, FR

Trying to address if we should give the same treatment.

Adjuvant chemotherapy
- IRCI Uterine LMS 0 vs 4GT/4Doxo
  - US, EU (GOG, EORTC, UK)

Unsolved question in soft tissue sarcoma. This is not the standard for all patients and we do not know who will or won’t benefit.
IRCI – this was the first trial in the US.. no treatment –v- combination treatment. It’s hoped it will answer the important question on this sub-type.

Surgery
- Prospective trial of no treatment in desmoids (FR)

Phase 2 study of no treatment. Often not mentioned. This is where desmoids are not affecting other things.

(Neo)Adjuvant radiotherapy
- Retroperitoneal sarcoma (EuroSARC WP4) exploring in selected localisation of disease.
- Vortext tiral (UK)
- SAR01 trial (FR) no radiotherapy with wide margin

Largest clinical trials are in the advanced phase:
Advanced phase – randomised trials
First line

Palifosfamide (closed Ziopharm sponsor)
TRS trial (Pharammar, completed) – Needs further investigation.
NCRI GT vs Doxo (UK) – Recruiting well – 220 out of 250 patients. ASCO 2015
EorTC Trust Trial (closed for accrual). Exploring agent in first line setting.
Dox +/-TH302 (ongoing, Threshold sponsor)
IRCI EORTC/UK in HGUS High grade undifferentiated uterine sarcoma.
Taxol+/-Bevacizumab (FR, Angiosarcoma) – Close to completion of accrual.

Only a few trials are addressing in histological sub-types.

Subsequent lines

Trabectedine vs DTIC (JNJ, US, L-sarcomas)
Eribuline vs DTIC (Eisai, World, L-sarcomas)
Sunitinib vc cediranib (US NCI, ASPS)
Regorafenib vs – 0 (FR, all comers)
CDK4 inhibitor vs 0 in (US/World WD/DD LPS)
MV vsPazopanib (FR, Desmoids)
Cediranib vs BSC (UK ASPS)

Phase 1/11 trials

Subset specific (right question?)
Target specific (phase I/II)
Molecular immunotherapy. Contrasting what was done in the 90s. Watch in next 2 years to see new trials of this kind.

Passive immunotherapy. Means antibody which is labelled with a nesotope and recognised.
Treated the driver target across histotypes

EORTC Network of Core Institutions
EORTC protocol 9010 (EudraCT number 2011-001988-52 NCT01524926)

Probably the future of what we are going to do in sarcoma.

Q&A Session
Q – Moving much more to molecular selection of patients in clinical trials. Is the pathologist going to become more important in making the selection decisions.
A – The role of the pathologist is central. This question is debated often. How do we link pathologist to molecular biologist? Research to routine is very challenging.

We need to bring up a budget wall with people talking to each other and exchanging information. Challenging not sure. If a pathologist is a real molecular biologist you’re fortunate!

~~~~~~~~~~
Short profiles of sarcoma subtypes
~~~~~~~~~~

Hans Keulen, Chordoma Foundation NL
Chordoma

Brief introduction into Chordoma and introduction to clinical trials
What is Chordoma?

Malignant tumour arising from the bone of the skull base and spine
It is a cancer and has a tenancy to be locally invasive and a tenancy to spread (metastasize)
It’s origin is traced to remnants of primitive embryonal cells called the “notochord”

Demographics

5 % of the primary bone tumours are located in the spine
8% of the spinal tumours are Chordomas
Incidence <0,7-1:1,000.000
Grows at skull base (Clivus, 35%), sacrum (50%) other spinal (15%)
Strikes people of all ages, most diagnosed in the 50s for sacral and 40s for other types
More frequent in men than women.

Phylum Chordata: Subphylum vertebrata

550 million years ago Chordates emerged from the common ancestor
Presence of the notochord is the most prominent feature of the Phylum Chordata
Notochord is ectodermal and guides developed

Fate of the notochord

The notochord is essential for the creation of the embryo
Usually disappeared 10 weeks after gestation
The notochord should not be there at the latest after 10 years.
There are a lot of factors that can arrest the disappearance.

Recent discovery is that a certain gene called Brachyury (t-box gene). Essential for development. Absence is lethal.

Notochord and brachyury
Brachyury is over expressed in chordomas and many epithelial cancers.
Brachyury is expressed in chordomas but not in other bone and cartilage tumours.
Approximately 10% of chordoma patients it is familial.
Duplication of brachyrury gene has been observed in familial chrodomas.
When you inhibit brachyury in chordoma patients you will stop it growing.

Recent discovery from UCL – www.ncbi.nlm.nih.gov/pubmed/23064415

97% of chordoma patients harbor at least one allele of the common nonsynomymous SNP rs2305089 in the brachyury gene

Research is imperative.

Benign notochordal cell tumour (BNCT)
Should anything be done at this point?

Current treatment of chordoma
First line is still surgery. Piece by piece or enbloc depending on location.
Sometimes stabilisation of the spine is required.
Radiation therapy is a high dose (usually 3x dose of breast cancer) Specialised types, mostly proton beam or carbon ion.

Implications

Prognosis for chordoma patients Is not that good.
High rate of recurrence
A lot of people get a lot of mutilating surgeries.
Sacral chordoma usually in a wheelchair
Survival rate has gone up but sometimes at a cost of added mobility.

In the past we saw only 10% of mets. However recently mets in sacral chordoma has recently been recorded that these are as high as 30%. There is doubt if this might be due to surgery not being good enough – possibly caused by seeding.
No chemotherapy
20-20% cure rate.

Survival
Median was 6.29 years

Remarks – survival is increasing to 7-9 years, but with increased morbidity from surgery and radiation.

Chordoma vs Chondrosarcoma
Mistaken on routine histology
Epithelial v Mesenchymal origin
Immunohistochemistry
Cytokeratin
Brachyruy
Survival
Much better for chrondrosarcoma (gr1)
Misdiagnosis is less common now.

Recent developments
Using Carbon Ion instead of Proton radiation particularly in sacral chordomas night even replace surgery as first line treatment (ECCO 2013)

Radiation before or during surgery offers promising results with respect to recurrence and seeding.

Increasing number of target identified for trials with existing drugs.

Other trials….. not just drugs
e.g. Carbon Ion vs Proton Beam radiation – HIT Heidelberg

Carbon Ion vs Proton Beam radiation – HIT Heidelberg

About Chordoma Foundation
We are a very small patient group. Worldwide we are less than Sarcoma UK!

Our mission is to improve, extend and ultimately save the lives of chordoma patients by:
Accelerating the development of more effective treatments
Helping patients across the world.

One in a million, on a mission – Chordoma Foundation

~~~~~~~~~~

Beatrice Seddon, UCL Hospital NHS Trust UK
Uterine Sarcoma

Gynaecological sarcomas – where are we in 2013?

Incidence of gynae sacomas
1985 – 2009 5950 gynae sarcomas diagnosed in the UK
9.2 case per million female population
285 cases diagnosed in 2009
Peak incidence 30-60 years

NCIN Gynae sarcoma report soon to be published.

Classification WHO 2003
Uterine Mesenchymal tumours *****
Smooth muscle tumours
Endometrial stromal tumours

Do not include malignant mixed Mullerian tumours

Location of tumours
85% of gynae sarcoma arise in the uterus
7% I the ovary
4% in the uterine malignancies

Sloan Kettering uterine leiomysosarcoma nomogram – overall survival probability prediction tools

Management of gynae sarcoma
Surgery – Most important component of treatment

~~~~~~~~~~

Marco Fiore
The interdisciplinary process of diagnosis in soft tissue sarcoma

MDT involved
Pathologist, medical Oncologist, thoracic surgeon
Web based National Rare tumours network, radiation oncologist
Surgical oncologist Radiologist

Sarcoma MDT
Many specialists have routine activity with MDT team.

Weekly routine meetings with the specialists, pathologic round, clinical round and MDT outpatients.

Biopsy
Any deep mass OR bigger than 5cm OR increasing in size

Hystologic exam (better than cytologic)
Think about possible surgical incision
Keep high-level of clinical suspicion
- Be aware of usual misdiagnosis -> deep large ‘hematomas’ are virtually impossible if no trauma history and/or anticoagulant drugs.

Core-needle biopsy
Local clinic
Usually two samples.

Pathologist – new classifications WHO classification of soft tissue tumours

In common cancer they are white or black
Benign – no problem.
Malignant – diagnosis of cancer.

Within soft tissue transfer it is a scale of white, greys and black,
Benign, Intermediate aggressive tumour, (locally aggressive) or (rarely metastasizing) Malignant.

Different decision for soft tissue sarcoma diagnosis.

Soft tissue sarcomas can be diagnosed anywhere in the body and surgery on sites can be very varied yet the tumour type could be the same histology. Anatomic constraints.

First think the overall strategy:

Histology specific (and grade)
- Combination of natural history
- Different sensitivity to different drugs
- Different radio-sensitivity
Site specific
- Respectability
- Reconstruction needs

What I can do + what the tumour can do = What I should do.

Please note, overall strategy should think in advance.

Sometimes it’s important for the surgeon to consider what to do rather than rush into it… difficult as most patients want surgery immediately but caution may in fact be best for the outcome.

Pushing tumour margins Or with infiltrative margins.

External lesions it may be better (angiosarcoma photo used) to have any chemo after surgery… that way the surgeon can see exactly where they need to perform surgery.

Functional outcome is an issue. Needs planning to ensure that particularly with arms etc that reconstruction of nerves etc is also planned to provide patient with best outcome.

Cosmetic outcome can be problematic. Such as on the head and neck. Plastic surgeon should also be consulted as part of the planning.

INT – treatment criteria
Changing over time 1987-2007

Less amputations. Decreased from the 1st to the 4th period (9% -> 3% -> 1% -> 1%)
Concurrent chemo—radiation therapy. Preoperatively

Local recurrence was improved. Survival did not change. Functional outcome and quality of life did.

One-shot approach. You need to think in advance for this strategy.

Re-excision: up to 50% of the cases referred to tertiary centres.
Impact on public health costs /reimbursement criteria??
Impact on extension of final surgery and functional outcome.
Psychological impact on patient and family (unexpected diagnosis: whoops! – delayed diagnosis – second opinion change diagnosis in 30%)
No prognostic impact.

Retroperitonal soft tissue sarcoma
Probability of finding via CT scan is low.

Biopsy remains the gold standard in diagnosing sarcoma!

~~~~~~~~~~

Julia Hill, Deputy National Programme Director, National Cancer Peer Review, UK
Peer review of quality of treatment, access to treatment and centres of excellence.

What is Peer Review?

Quality assurance programme based on National Guidance and National Standards.
For Sarcoma this wa the Improving Outcomes Guidance.
Guidance by nature is guidance and cannot specifically be measured. Need to be benchmarked.
It’s not a statutory function but well supported in NHS.

Development of peer review

Developed initially around cancer services. Broadening outside of cancer.
First reviews took place in 2001. Been through many reviews and remodelling.
Number of independent reviews support the continuation with recommended support.

Aims of Peer Review

Providing safe services
Improving quality and effectiveness of care
Improving the patient and carer experience
Undertaking independent, fair reviews of services
Providing development and learning for all
Encouraging the dissemination of good practice.

Key principles of Peer Review

Clinically led
Consistent in delivery
Developmental
Focus on coordination within and across the organisation and pathway
Peer to peer. Clinicians working in the area reviewing clinicians and teams.
Integration with other review systems. Hopefully no duplicating information.
User/Carer involvement.

Benefits of the Peer Review Programme

Proven to be a catalyst for change.
Developmental programme
Provides director of services and information across the country
Identify any risks in the service by visiting and bringing to the attention we can get these involved quickly
We have a lot of clinicians involved in process (3-3,500 clinicians who review)
Rapid sharing
Provision of timely benchmarking data.

The Peer Review Methodology
Annual Self Assessment -> Internal Validation -> External verification -> Peer review visits.

Reviewing evidence

Quality measures. Ask teams to provide evidence documents to keep workload minimal. We ask for doctors that the team would be using in every day… work programme, operation policy, annual report.
Narrative report against key themes… for structure and function. What membership of teams. What’s the training. Patient pathways and clinical guidelines. Patient experience. How do get patient feedback.
Clinical outcomes. We are moving toward looking at clinical outcomes.

Development of the measures
National guidance
Expert Groups – nurses, allied health professionals, dieticians etc and also patients.
Consultation – get together to create a set of measures for the service.
Formal consultation – for approx 3 months.
Editing – meet again and edit etc.
Publication – measures reviewed on an annual basis to take into account changes in national guidelines.

Measures for Sarcoma published in August 2011 – NCAT Manual for Cancer Services – Sarcoma Measures
Cover aspects:

Sarcoma Advisory Group
Trust – inc Diagnostic Clinics
MDT – Bone and soft tissue.

What makes up a peer review visit:
Purpose:

Provide an opportunity to meet with members of a service to determine compliance with the quality measures.
Identify any broader issues relating to the delivery of a quality and safe service including a review of clinical indicators.
Provide a further external check on internal quality assurance processes.

Look at the wider picture of how the team functions against how they’re delivering against clinical indicators.

Who are Reviewers?
MDT – service users, clinicians, AHPs, Managers and commissioners…
Peers are people who have been trained and working in the same discipline as the people they are reviewing.

We don’t have reviewers reviewing the trust next door but are objective of the pathways.

Selection Criteria for a Peer Review Visit

We don’t visit all the centres but do a risk based target for the visit. Are they meeting national guidance.
Were there any risks identified previously that have still not been involved.
We’re asked by organisations to visit.
Compliance against measures with lowest performance grouping… If teams are still not reaching 50% of measures then we need to go in and see what the problem is.
Concerns regarding the Internal Validation process.

2012/13 Peer Review Visits
12 Sarcoma Advisory Groups
145 Trusts, 19 Diagnostic teams
15 MDTs

Good Practice
Generally good provision for TYA Support for this patient group nationally
Good patient involvement overall and good examples of support
Good entry into clinical trials

Immediate risks
Inadequate referral population
Below 100 patients

Serious Concerns

Inadequate CNS provision
Lack of attendance at the SMDT by radiology and pathology
Lack of oncology capacity (non-surgical oncology)
Ambiguous/fragmented pathways (retroperitoneal and site specific)
Poor pathway/MDT governance / Data

Recurring Themes
Reiterate points before, particular issue was some Self Assessment Groups do not benefit from same support as more matter NSSGs

Clinical Outcomes
Clinical Indicators for sarcoma were introduced in April 2013:

% patients treated in Sarcoma centres
Caseload by Sarcoma centre
% patients receiving surgery
Readmission rates within 30 days of surgery
% patients with a recorded stage.

Working with NCIN to provide service profiles for each of our teams. Ie Cancer Service Profiles for Breast cancer Comprise of demographic data, specialist team, throughput, meeting times, practice, outcomes and recovery and Patient experience.

Outcomes of Peer Review

Confirm quality of services
Identify shortcomings and publish
Publish reports about quality of services
Timely information for commissioning
Validate information which is available to other stakeholders

My Cancer Treatment – is the website that patients can then see and compare local services and check what the results are for their local hospital etc.
Click on Find out more to see the narrative of the report.

We know that not only patients are looking at the website – commissioners are also doing so.

Sarcoma UK have prepared and posted on their website a summary of the Patient Experience Survey results

~~~~~~~

SPAEN Partnerships and Collaborations

Progress in Rare Cancer Care
Collaborations and Networks

EORTC and EURO/SARC
Winette van der Graaf, Chair EORTC STSG, Netherlands and Estelle Lecointe, SPAEN France

What drives us as a sarcoma specialist?
If you work on frequent cancers, do randomised trials. If you work on rare cancers – find friends..

What is EORTC
Exists for 50 years.
Important institute in Europe. Main aim is to collaborative academic research throughout Europe to improve the outcome for cancer patients.

There also groups that breaching these tumour groups such as elderly, quality of life, biomarkers etc

One family of sarcoma group.

Throughout Europe
Soft Tissue Bone Sarcoma Group

Throughout Europe
Randomised phase 2 an 3 studies
Interesting partner for Pharma. Difficult in a rare disease to get pharma involved however with big databases they’re interested!
Big and relevant data bases
Gets support from EORTC,
Platform of discussing studies in such rare disease. But also a platform of finding friends and collaborations. We are all busy with a very rare disease for which there are not so many people available.
Collaborative spirit.

Organisation of STBSG

Board of group, period of 9 years
ExCo with charis of the subcommittees
2 group’s meeting a year
Young investigators of the group. Welcome new members interested in doing studies in sarcoma.

Group gets a scientific audit every 3 years. So we are audited on the way we behave and want to see minutes and outcome and publications and all activities. Proud to say the last audit took place this year and we ranked very high. Always hope that you will have good advisors to make it even better.

Subcommittees

Local treatment – radiotherapy, surgery
Systemic treatment – chemo targeted agents
Pathology
Imaging. Radiologist part of design of studies.
Quality of life since 2012
Public relations, starting from 2013
… pre-clinical group to look at what’s going on in other institutes (to be set up)

Collaboration with…

National groups in France, Germany, Spain, Italy, British, etc
Some members are members of World Sarcoma Network. Number is increasing.
Pharmaceutical companies
EU grants and education (this needs to be extended)

Open studies…
Very few later stage open studies at the moment. Working hard to get new studies active.

STRASS and CREATE studies.

New intiatives

Many database studies

Discussions about

Osteosarcoma French Study
Ewing sarcoma (FP7)
Liposarcoma CDK4 inhibitor
GIST: fist line, second line, third line
Elderly study: cyclophospharmide/prednisolone
Imaging studies on STRASS

World Sarcoma Network
This is a totally different institution created in 2009 by enthusiastic people in the sarcoma field. Cooperative group gathering the main reference centres to stimulate rapid clinical drug development for sarcomas.
Enable clinical studies that could not be completed by the cooperative groups or at a national and continental level. Where it needs a global level to discuss.

In Europe, in Australia Peter Mac, Ludwig Institute Australia

World Sarcoma Network the challenges

If you have no institute location and no funding how can you organise it. Busy of thinking of a model of how to do this. We have the international rare cancer initiative.
Very rare disease – unattractive for Pharma
‘Sarcoma of the year’ 2013 gynae sarcomas. If we are not more concrete what we are aiming at then for the outer world it will be a vague institute of nice people but no objective.
Biannual meetings during ASCO and CTOS

Examples of successful collaborations

Trials in GIST
EORTC – Italian and Australasian Sarcoma Group Centres in the US

With the input from all of you, there will be many more studies to come…

~~~~~~~~

EuroSARC

Jean Yves Blay, Centre Leon Barard Lyon, France
European Clinical Trials in Rare Sarcomas within an integrated translational trial network

How do we get funding for collaborative working?
Each network gets funding from different parts but how do we bring these together?

Where grants from EuroSARC came together. Tools to enable this network of networks to move in the right direction.

Some times successful in some projects but other times on our own we may be unsuccessful.

We can build something on the basis of international grants.

GOAL – EuroSARC project – Academic clinical trials with a limited number of partners but inclusive for all networks and all groups.

Interaction between clinical research <-> Translational research <-> basic research

Objectives
To address major academic questions
Involve reference centres
Tod design structure and implement 9 innovative investigator driving clinical trials of different scales on a multinational level, evaluating novel

Conclusions

An important support for Ebased on previous work
Academic research only
Difficulties/problems
Adaption to the context/change of plans.

www.eurosarc.eu website

Website
1.     About sarcomas
2.     2 Eurosarc project
3.     Eurosarc clinical trials
4.     Patient and public info
5.     Utilities
6.     Members section

Vintage Afternoon Tea – Fundraiser for Penny Brohn Cancer Care

Posted on 06/10/2013 by AnnaGoAnna

It was a pleasure and a joy to attend a vintage afternoon tea fundraiser this afternoon. I have attended and benefited from the Penny Brohn Cancer Care Centre in Bristol AND believes in the importance of ‘Living Beyond (a) Diagnosis’ so it’s great to be able to support them.

A super splendid location, The Secret Garden on the top floor of the private members’ club, Shoreditch House. When we arrived we were to walk around the edge of the bustling open air swimming pool… where ‘beautiful people’ swim! Through a small doorway and we found ourselves in this delightful area arranged with tables laden with vintage crockery and tableware. Pastel shades of bunting and flowers created an amazing setting. We were also blessed with some glorious October sunshine!

As we sipped our bubbles from champagne coupes (nice vintage touch!) we listened to the pop of balloons around us. Each colour of balloon was a different price (£10, £25 or £40) and contained a little strip of paper detailing the prize won. I am, as a consequence, looking forward to attending an Insight event at the Royal Opera House; drinking some Fair Exchange Merlot Malbec; and bathing in Wild Olive bathtime treats… but not (necessarily) all at the same time!

After a short time of networking and meeting new and familiar faces, we took our seats for tea.

Jessica Brohn (Penny’s daughter) welcomed us to the event, told us a little about her mother and Pat Pilkington, the Centre and why we were all here. During the course of our tea, we heard from a lady who had also attended the Centre. She who was able to share her journey with cancer and how she benefited from her courses at the Centre.

After tea, we had an auction with some incredible prizes that had been donated by Soho House, Cecily, Maire Weaver, Suranne Jones, Toby Whitehouse, and more.

Jessica then spoke again to update everyone on the national roll out of the Living Well project. It’s been coming on leaps and bounds since it’s launch (see previous post) and I’m very excited that so many more people are able to participate in the magic of the Living Well courses. I will be tweeting via @BeyondDiagnosis when new dates and locations are proposed.

A lovely afternoon and I believe, in excess of £5,000 raised for the Penny Brohn Cancer Centre as well sharing the awareness of the Centre and it’s valuable work for anyone affected by cancer.

Macmillan Cancer Voices Conference 2013

Posted on 05/10/2013 by AnnaGoAnna

As a Cancer Voice and patient advocate I attended the Macmillan Cancer Voices Conference. This is held each year in a hotel at Gatwick and runs for 2 days with plenaries, workshops and networking. The attendees are a mix of people newly affected by cancer (diagnosed or carer) together with some old stalwarts who are, like me, advocating for themselves and others. Many of us ‘old guard’ sit on various other tumour working groups, networks, research, NHS or hospital boards, Healthwatch/LINk, charity or patient groups. My aims in attending this conference is to be able to share my experience (and that of others I’m familiar with), contribute to discussions at workshops and also come away with more knowledge about new and ongoing projects. I also like to take the opportunity to share with Macmillan projects that are underway or consideration by other organisations and that perhaps they could work collaboratively or in conjunction with these others rather than reinventing the wheel.

The agenda is, as always, busy. Attending these conferences isn’t for the faint-hearted and for some can be difficult.

I hope you find my notes from the Conference useful (my additional comments are in italic):

————————————–

Welcome from Julia Palca, Macmillan Trustee (Chairman of Board). Julia explained that she joined CancerLink in 2008 after her own diagnosis. CancerLink was taken over by Macmillan and is now known as Cancer Voices.

Why are we here today:

“You are at the heart of everything we do”
Cancer Voices tell us what people affected by cancer need and how they need it.
Your Voices are influencing changes in cancer.
Challenging times for the health service. We continue to fund-raise, deliver services and influence.
2012 was the most successful for fundraising. £115m raised. £112 spent on people affected by cancer. 8,000 more people reached than the year before.
Big part of reach is our Macmillan professionals. 3,000 funded last year.
Influence and force for change work. e.g. free social care at end of life. Welsh care delivery plan. Northern Ireland cancer commissioning plan.

Specific examples of user involvement:
Early diagnosis. A GP will only see 8 or 9 new cancer patients a year (on average). We need to raise awareness for GPs and have developed ClinRisk Tool (QCancer Overview). It has now been piloted in 500+ GP surgeries. Over 800 GPs attended training for early diagnosis.

Improve patient experience. We’ve been working toward: High quality communication patients and staff; Patients involved in decisions; and Coordinated care between settings.

NHS National Cancer Experience Survey. Macmillan is working with partner organisations to improve on results. Cancer Voices and Healthwatch to co-create Macmillan’s guide to using the survey. Copies can be obtained from BeMacmillan.

Campaigning for carers. 1.1m cancer carers in the UK. 50% don’t identify as carers or realise there is support available to them.

This month Macmillan are launching a new campaign to reach carers and also lobby care bill to strengthen and support carers.

Redesigning cancer care systems. Macmillan are encouraging user involvement working group as part of the programme of changes in the NHS care system.

Exciting programme ahead and a great deal of opportunities for patient/carers to get involved and improve care.

————————————–

Neil Stevens VP of Skype – keynote session.

Neil described his own experience. At the time of his diagnosis, he thought nothing of jumping on a plane for a day of meetings in Sydney and did this regularly! He was focused, impatient, driven and busy. Life was good. At the young age of 43 he noticed a lump on his hip. He was overseas on a business trip. A local Dr told him not to worry. He carried on with his business trip. Back to the UK he sought more medical advice and scans. Initially he was told it was nothing to worry about. He was fortunate to have private cover and once again pushed for more tests.

Eventually he had a diagnosis – a rare form of sarcoma – extraskeletal osteosarcoma. So he knew the name but little else.

The tumour was removed by surgery and he was back at work in 3 weeks. His life returned to ‘normal’ as if it never happened.

At a routine scan 6 weeks later life however he was told that the sarcoma was back and now in his pelvis and lungs. They stated that there were over 100 tumours in his lungs and told he probably had 18 months.

So he put on his business head. After all he was driven, focused and able. He became the Cancer Elimination Officer (CEO) of his cancer. Neil said that he had to address the cancer in the same way he addresses any business problem. He first gets all the facts and data (no small task when there is so little), he would then build a strategy to eliminate it. He was sure he would be able to do so.

He’s fortunate that he had money and contacts to track down and seek advice from the world’s expert at Sloane Kettering in the USA. When he met with them, the consultant told him ‘You can beat this’. Neil said that hearing that meant he knew it was true. Once again an incredibly positive attitude.

He started chemotherapy immediately. He knew that there was no sign of activity after round 1. He kept telling everyone he could that he would beat it. He kept a positive mind.

The final round scans couldn’t find anything!

What he learnt was the power of his own mind. He’s very factual and needed information. BUT he knew he could take control and manage it. Neil went for counselling, took up pilates, changed diet, aware of power of his own body and mindful meditation.

The hardest part was telling the children. Macmillan helped.
“Ask all the questions and let the children talk.”

He knew deep down he could do this. He knew that by addressing it as he would a business deal, he’d be able to command what he knew he needed and be in control.

He wrote a document justifying why Cyberknife should be used not radiotherapy.. he got it.
He found a trial in the US. He did a PowerPoint presentation of why he should get on the trial. He got it.

He’s now been back at work full time for a year. He’s moved to a new role which is less stressful. He believes fitness and Pilates played a part in his health. He meditates whenever he feels worried or panics. He’s learnt to keep perspective.

He did have a small relapse in June with tumours in his lungs however is now completely clear following surgery.

As with everything in his life, he wondered how he can use his experience to create change. “I was given cancer for a reason. I can do something with this.” He met with Ciaran Devane (Chief Executive at Macmillan)

Skype’s amazing and free and global. He works for Skype. What if we built a tool that allowed people with cancer connect?

Now the Skype Buddy system has been built and is being piloted. The principal is to enable people affected by cancer to be able to talk to specialists (financial counselling, medical etc) or patient to patient or carer to carer. (I’m not sure if there will be group discussions but hope there will be as it would be a great opportunity to have group chats on specific subjects with perhaps nurses or clinicians on the call too).

Digital advisory board for Macmillan that he’s putting together has representatives from the likes of Facebook, Expedia, Amazon etc.

What is Skype Buddy system? Click here for explanation.

The system is being piloted currently and looking for people to get involved, use the system, provide feedback and evaluate.

At present the system appears to have a small number of cancers and a limited sign up criteria. I wonder if this will be increased in order to match Buddies on better criteria. I am an Imerman Angel whereby we mentor others with the same cancer diagnosis by phone, Skype, email, letter etc, as required. I’m a little disappointed that when I spoke with a number of charities, NCAT and NHS representatives about the Imerman Angels some years ago it was dismissed as a crazy idea to ask people to use technology to speak to someone similar! Hey ho, I guess time and mindsets have moved on. Imerman Angels match us on a huge number of criteria including age, marital status, children and cancer. Although it may seem excessive, I know that some of that criteria would have been critical in my journey.

I have offered my experience to this project as I have worked with IT online projects for many years and also the Imerman Angels system (which I continue to mentor for).

We need more types of cancer in Skype Buddy project so that there is perfect matches. For example (and perhaps selfishly for me) ‘soft tissue sarcoma’ is not defined enough. Sarcoma cancer can occur anywhere in the human body and issues that may affect someone with Phyllodes in the breast will no doubt be different to someone with an Leiomyosarcoma.

Skype Buddy is about 1:1 relationship. I do hope this will open up to group chats on specific topics.

We also need to ensure the supporting Buddies are provided with good (ongoing) training. They should also be provided with the ability to reach out for support for themselves.

We need to use technology better and use it as a key element of the broader strategy.

Neil closed by saying that his views of life have changed as he enters the 2nd half of his life:

Seize the day… Enjoy the day, your life, that moment, value it. Be present with people. Engaged with people. He shared with us a very powerful statement from James Dean: “Dream as if you will live forever and live as if you will die today.”

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We then split out into different conference rooms for Welcome groups. The purpose was to meet other Cancer Voices and Macmillan team members. After introducing ourselves and finding out what each of us had done in the past 12 months for Macmillan we discussed what do we want from the conference? The main points from our group were:

Not reinventing the wheel.
Feedback on the projects we’re involved in.
Updates from the previous conference.
Sharing information, data and reports with others.
Working collaboratively to provide information.

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Workshop – Improving Cancer Patient experience in the New NHS

Following an exercise to introduce ourselves to other Voices at our table and then a ‘ice-breaker’/competition, the workshop began.

3. Mid Staffs and the Francis Report. The final report and executive summary can be viewed here.
4. Macmillans’ work to improve cancer experience
5. Group Exercise – using tools to improve patient experience

Mid Staffs
Failings of Care at Mid Staffs – Robert Francis QC Feb 2013 stated “This is a story of appalling and unnecessary suffering of hundreds of people”. The priority of his report, he said, was not to find a scapegoat, but find ways of putting patients and the quality of care first.

Not just cancer.. of course the mortality of all illnesses was too high at Mid Staffs.
Waiting times for cancer patients to see specialists were far too long which meant that many people died where as they should have been saved.
Chronic understaffing on cancer wards. Lack of commitment to improving outcomes for cancer patients.
Obsession for reaching targets but not standard of care for living longer and better quality of life.
No rapid referral system to oncologists which should have been in place.
Lack of support for the clinician from the MDT surgeons.

Failings on cancer care at Mid Staffs

Not listening sufficiently to patients and staff
Failing to tackle a negative culture involving a tolerance of poor standards and disengagement.
Increased focus on reaching national access targets, achieving financial balance and seeking foundation trust status.

How do we know if patient experience is good/bad?
There’s the NHS cancer patient experience survey, peer reviews and several different areas.

Information and Support
Emotional Support
Holistic plan
Dignity and respect

Francis Inquiry Report recommendations

Transparency
Fundamental standards
Accountable
Compliance

Macmillan have devised

The Macmillan Values Based Standard
The National Cancer Patients Experience Survey Guide

Value Based Standard is a set of behaviours that is practical developed by patients and carers.

There are eight behaviours in the Macmillan Values Based Standard:
1. Naming – I am the expert on me.
2. Private communication – My business is my business
3. Communicating with more sensitivity – I’m more than my condition
4. Clinical treatment and decision making – I’d like to understand what will happen to me.
5. Acknowledge me if I’m in urgent need of support – I’d like not to be ignored.
6. Control over my personal space and environment – I’d like to feel comfortable.
7. Managing my own – I don’t want to feel alone on this.
8. Getting care right – my concerns can be acted upon.

Sadly a great deal of these ‘standard’ points should be what we do every day as humans. Why do we need standards to ask a medical member of staff to remember to ask how someone wants to be addressed? Anna, Ms Wallace, Miss Wallace etc.
Common courtesy!!

What is the NHS Cancer Patient Experience Survey (CPES)
The survey was completed by over 70,000 people and covers care before, during and after hospital. Does it survey the family of deceased cancer patients about their experience?

We spent a short amount of time looking at extracts of the Survey and attempting to work out where we might feel improvement should be focused. The Survey results are lengthy and difficult to interpret. There are many tips on doing so, such as look at the figures for last year and this year to see if there has been an improvement. How does that Trust compare to other Trusts? If many Trusts performed badly, could you Trust improve sufficiently to be hailed as the ‘gold standard’?

In the final minutes of the workshop we discussed what we might do as patient/carers/advocates to ‘encourage’ our local Trusts to improve, with measurable improvement and to be held account.

I had been booked into a workshop by Healthtalkonline. Disappointed that they weren’t in attendance at the conference as I wanted to find out first hand more about their work, strategy and future plans. Perhaps next year?

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The first day of Conference ended with a networking opportunity via drinks and then dinner. It is always a joy to meet up with friends at this Conference, many of whom I don’t see from year to year (except on social media). This year the entertainment was provided by a singer who crooned his way through a whole host of fabulous tunes. On our table we seemed to know all the words and were (I think) the first ones up for a little dance! Great fun and perfect entertainment for this event as it appealed to pretty much every age group (the joy of Robbie Williams doing covers!).

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The second day began with the second workshop of the conference.

Workshop – Commissioning the bigger picture

What is commissioning?

Purchase/buying services.

The theory is that we are all commissioners.

I’m buying for my needs. I look for value for money, choice, what I need, who am I buying for, can we afford it and quality.

Health service commissioning is similar. It happens all the time. Some stuff will be bought every week. some things might be purchased for special occasion.

The commissioning cycle.
Assessing needs -> Needs assessment -> Planning -> Specifying -> contracting -> evaluation.

Clinical Commissioning Groups (CCG) now do the ‘buying’ of services in the new NHS.

CCGs are a group of GPs that come together to form a group to commission services.
No boundaries are set as to how many GPs are required or the maximum number either.
There are now over 200 CCGs.
£100bn is the NHS budget and £65bn of which goes to the CCG.

Do GPs know what to buy? How are these different CCGs going to ensure that nothing slips between the geographical groups of CCGs?

Kings Fund video – An alternative guide to the new NHS in England.

Sadly we didn’t get to see it as the broadband was too slow.. perhaps it should have been downloaded prior to the conference to play locally?

We then worked (as best we could) through picture handout (final slide of video below – click to enlarge).

All organisations involved have a duty. Briefly, who is involved?

Public Health England – more proactive, awareness and prevention (sit within the council – local government.
Social care – care of the elderly, supporting people with disabilities, someone post cancer treatment needing assistance at home.
Health & Wellbeing boards – brings together main leaders in particular area.
Healthwatch – responsible for supporting public voice in monitoring health and social care locally.
Cancer Commissioning. Commissioning Support Units support the CCGs and, in the most part, are made up of the original ‘commissioners’ in the old NHS structure.

HOWEVER one of the significant rules for CCGs is that they have to engage with members of the public.

Most of these are linked to the clinical senates within the new strategic clinical networks

How can you influence what is happening locally?

Clinical Commissioning Groups,
Patient Participation Groups – ask for information at your local GP surgery.
Hospital boards – find out which boards have patient representation.
Health and wellbeing boards making decisions about the needs of the local area.
Healthwatch/LINk

Or at a regional level. Make enquiries. Ask where you can be involved.

If interested in cancer commissioning get involved with strategic clinical network.

Not sure where to start? How do you get involved?

Start with Macmillan involvement coordinators who can advise on where to go.

A useful 7 point ‘reminder’ for consideration and preparation before going into any patient involvement group or meeting:

Define your preferred outcome and retreat outcome
Consider the second position – what does the other person think?
Be clear with benefits for both sides
Present evidence and proof to reassured
Think about your delivery
Anticipate barriers or blockages
Explore the barrier, empathise, re-present.

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My final workshop of the conference was on a subject I’m passionate about. I hoped to find out more about initiatives that Macmillan are involved in to improve care for people living beyond diagnosis.

Workshop: Improving Care for people living with and beyond cancer
Sandra Rowlands and Gloria Payne

National Cancer Survivorship Initiative (NCSI):
Survivorship being from the first thought of cancer until the last breath… not just post treatment or for a set period of time.

Recovery Package:
They showed a slide to show the numbers of people living with cancer and how they are projected to boom:

In 2010 there were 220,000 living with and beyond cancer.
In 2030 it is projected that there will 370,000 (1 yr survival); 570,000 to 990,0000 (1-5 yrs) and 1,290,000 – 2,680,000 (more than 5 years).

Often it is spoken about that the number of people living with cancer is set to double by 2030.

We are already struggling to accommodate the increased numbers of cancer patients. If the numbers are correct we need to be collaboratively working for survivorship – charities, NHS, local health, patient groups etc.

Another projected figure that truly is worrying is that by 2020 almost 50% of Britons will get cancer but 38% will not die FROM cancer.

38.7% of cancer survivors are of working age ie 18-64 = 38.7% If this percentage of working people living with a cancer diagnosis continues at almost 50% of the population then it will have a huge impact because of needs and use.

Median survival times are improving. 1971-72 = 1 year whereas 2007 5.8 years.

NCSI 2010 Vision

There are five key shifts:

Cultural – focus on recovery, health and wellbeing.
Holistic assessment 9 individual and personalised care planning.
Self management – not clinical follow up.
Tailored follow up support.
Patient Reported Outcomes Measures (PROMS) not clinical activity.

My cancer treatment – gives national cancer experience survey results, and peer reviews, what hospitals are centre of excellence, mortality rates and survival rates etc.

New document prepared by the NCSI “Living With and Beyond Cancer: Taking action to improve outcomes 2013 “.

Also detailed is a Recovery package to support the new NHS commissioning and includes:

Supporting self management.
Physical activity and healthy lifestyle.
Information financial and work support.
Managing consequences of treatment.
Assessment and care planning.
Treatment summary and cancer care review.
Health and wellbeing event.

Macmillan Identifying your concerns checklist (white form) which is completed by the patient/carer and then returned to the specialist (holistic needs assessment).

This is then discussed and worked through with the Care plan which then has a plan of action etc.

There is an excellent piece on the NCSI website which explains each part and also has downloadable forms to adopt for good practice.

These are also available on the BeMacmillan website.

A useful tip for the Treatment Summary use was for the purpose of travel insurance. As any cancer patient knows travel insurance can often be difficult and expensive to find. Macmillan advised that the Treatment Summary form could be used as the basis of medical information for this purpose. My own travel insurance is through InsuranceWith who specialise in travel insurance for people with long term conditions.

We spoke about the importance of Health and wellbeing events being held locally. It was suggested that through the patient participation groups this could be set up and achieved. Also to contact your Macmillan Involvement Coordinator to assist and perhaps provide some funding.

In order to sustain recovery, perhaps via self care with support and open access to the medical teams. Shared care within the hospital environment and local, social and self care. However complex cases must be managed through an MDT.

Care co-ordination and remote surveillance. This needs collaborative working between the clinical setting and local/social care together with third sector organisations.

Walking for health is a scheme whereby walks are organised for free locally. However could more be done. If you have high blood pressure or a heart complaint you are entitled to some physical exercise grant/access however as a cancer patient there is no physical exercise grant/access available yet. This should be highlighted.. could you raise this with your MP?

Work and cancer – Often this is overlooked during treatment but essential for so many to be able to return to work in some capacity. Macmillan advise people NOT to resign but to find a working solution with your employer.

Taking action – Innovation to implementation: Stratified pathways of care for people living with or beyond cancer- A “how to guide” was published by NHS improvement in 2013, and provides local teams with a very practical ‘how to’ guide based on the experience of the test sites.

What does success look like?

Improved outcomes for people living with and beyond cancer.

Can you help ensure that this happens?

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The final plenary session, “A journey with a view from 3 sides of the fence”, and close for the Conference was given by Johnny Browne who was a GP, was a carer for his wife with cancer and is a Macmillan GP advisor for Northern Ireland.

Macmillan GPs special interest in cancer and their role is to promote best cancer care in their area/locality. (Macmillan fund GP training and I would love to know which GPs had received the training so that if I was to move locality I could ensure my GP was familiar with cancer treatments. Is the list of Macmillan GPs available to the public? I can’t find it!)

In an attempt to point out areas where I think cancer care can be improved and looking from 3 very different perspectives:

Do not forget as a GP the importance of self esteem and body image in cancer patients.
1. Look Good.… Feel Better programme
Diagnosing cancer early:
1. Awareness
2. Difficult journey, sometimes truly difficult, often symptoms mask as something else. Patients should be aware of symptoms and not be afraid or embarrassed to say anything. “If you were meant to be shot, you’ll not drown”
3. Diagnosing Earlier App?
4. Take pity on the poor GP who is like a penguin. Don’t refer too many patients. Make sure all your referrals meet the referral guidelines?
5. All cancer studies ask “how many times you attended the GP before diagnosis”
6. Most of the time the GP didn’t miss anything as often symptoms can be something else too… but we’re improving in seeing patterns.
Improve communication
1. As a carer I realised how important it was. Written communication and results. Between patients, medics, staff, GP etc etc
2. How many people do you get in contact with during your cancer journey?
3. Sensitivity, know your patient, what they want, how they should be addressed etc.
4. Difficult for me as a GP to navigate the cancer journey. It can be extremely difficult for someone who is new to the NHS and ‘cancerland’.
5. Treatment summary – Macmillan have developed this and it explains what happened to the patient. 3 copies – patient, hospital and GP. You can take this with you in the case of emergency, insurance or advice.
6. Twitter showing how the world really looks from his photos posted. (Commander Hadfield)
7. #hellomynameis campaign on Twitter
Four things I’ve learnt about communication
1. Health care professionals can do better.
2. Look patients in the eye
3. Difficult care pathway – passport to death. Talked to the patient to obtain the information rather than GO through a form. People and organisations have made the form more important than the patient – we need to change that back and hear the story rather than fill the form.
4. 1 or 2% who give you bad communication can undo all the good of the rest of the team who give great communication.
When you are going through you cancer journey, we don’t or are reluctant to complain.
1. Perhaps it’s up to us to put the message out there or complain for others (factually, professionally and politely).
Spread the word ‘Living with Cancer’
I knew nothing as a GP nor as a carer but as a Macmillan GP I do… from you.
All cancer patients need follow up and review.
Travel insurance for those affected by cancer.
Remember to live.. we did House building in Zambi, white water rafting and more… remember to Live.
Don’t remove Hope.
1. Why can’t you be one of the small survival percent.
Spread the word about exercise
1. Any exercise is good.
Remember no one should face cancer alone.
Keep a diary.
1. Not of medical things but also happy fun memories and thoughts. It can be a lonely disease even with family and friends.

General Practice 2013.
Its changing. How does someone with a chronic condition have a relationship with the GP? It’s in change or flux.

GP out of Hours 2013.
Important to a cancer patient to be able to access GPs out of hours. Could they avoid the A&E admissions?
But A&E is often not a great place for a cancer patient to be first hand and stuck on a bed in a hallway. We need to get quicker access.

In his wife, Lynda’s diary was a note:

“I hope you enjoy your new job with Macmillan to help people with cancer and to bring your personal experience to this”.

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General comments for this Conference:

Time is short to discuss fully all the topics and workshops and listen to the plenaries. Perhaps we should consider:

1/ Sending out by email or post preliminary information for reading prior to the Conference.

2/ All Voices are attending to participate. I don’t think there’s a need for an ‘ice-breaker’ in each session. It just wastes time and irritates those who want to get on with the discussion.

3/ Whilst all Voices attending have a personal experience of cancer (diagnosed or as a carer) it should be encouraged to, if required, use snippets of their experience if pertinent to the workshop.

4/ Should some of the workshops be for newbies and some for ‘old stalwarts’?

5/ Should there be a workshop on ‘how to complain’ so that many of the ‘negative’ experiences that participants feel they need to share can be addressed in this workshop in a constructive manner?

6/ So often during the conference people bring up negative experiences and complaints with the health system. Could Macmillan also encourage people to report when things have gone well and encourage best practice by highlighting that someone has excelled at their job! We all like to be appreciated and there are a great many people doing a fantastic job in the NHS and cancerland – we must learn to say thank you!

Breast Cancer Care Fashion Show 2013

Posted on 02/10/2013 by AnnaGoAnna

It’s is fair to say that Breast Cancer Care have once again managed to host an incredible Fashion Show in London. As usual there was laughter and tears. Once again we are reminded that cancer can have a much bigger effect on life than treatment itself. The fashion show models were, as always, ladies and gentlemen who had themselves been diagnosed with breast cancer and representing the many 1,000s of others. Some a little nervous, others relishing the opportunity and sashaying with the best of them! They strutted their stuff down the catwalk looking absolutely incredible.

I was invited to attend this afternoon as a guest of Breast Cancer Care as Issy’s +1. Kelly was also able to join us so the ‘Three tits on tour‘ were back in town! Both Kelly and Issy were models last year, as were a couple of the other ladies at our table.

I love the whole afternoon. We had a very warm welcome with a glass of bubbly and then made our way to the Grand Ballroom. It looked stunning. All glitzy and glamorous (as did the guests!). Opening the show with an act, the Dixie Dinahs. Followed by a short and emotional welcome from Jane Hinnrichs, Chair of the Board of Trustees to tell us about Breast Cancer Care, their work and also about their new branding.

Personally, I’m a huge fan of this new orange and pink. I think it will stand out from the ‘pink melee’ and, for those of us who feel breast cancer is not pink and fluffy, I believe it to be a stronger message with these bold colours. Well done Breast Cancer Care.

Our afternoon tea was plentiful with lots of delicious sandwiches, teas and cakes. Ooh a happy place to be!

Edith Bowman gave a short speech about why she supports Breast Cancer Care before introducing us to the inspirational models for the day.

The models clearly had quite a task to change for the many themes and managed to look incredible in every one. As always the chaps did a sterling job and my heart always goes out to them as their journey must also have been tough being diagnosed with breast cancer in a world of pink. We loved the bright fashions for the first set (surprised not to see Mike Myers show us his moves on the runway). The fifties set was also fabulous – loved the frocks by Candy Anthony.

We were then treated to ‘Winners’ Enclosure’ and ‘Cocktail Hour’. Finishing the fashion show with ‘Gold!’.

After the fashion show had concluded we were introduced to Breast Cancer Care’s new campaign about body confidence. It’s an issue that affects so many people following surgery of any type. Living with scars, one or no breasts, mis-shapen or ‘damaged’ bodies can be devastating to many people and have a huge impact on their lives, relationship and outlook. Learning to accept your ‘new’ body can be, for some, bigger than the diagnosis. The new campaign aims to show others how some people have dealt with their new body image. Bring about a discussion and for some, allow them to open up and discuss what they see under their clothes. Issy was one of the models and you may have seen her image on buses, posters and in magazines.

Do take a minute to look at the video here

The afternoon finished with an auction. Then the results of the raffle – I won a prize! A hamper full of chocolate and flowers (to be ordered) from celebrity florist Simon Lycett. What more does this girl need?

Healthwatch – Cancer Project Group

Posted on 23/09/2013 by AnnaGoAnna

It’s been quite a while since this project group met up. There’s been such a lot of confusion as to what’s going on and whether Healthwatch (or LINk) will even exist in the new structure.

The Central West London group has created a number of smaller specialist groups and the cancer project group has been terrifically active and positive. There are a number of projects that we can measurably show have improved the cancer services in the area, particularly the regard to the ethnic minority groups now attending screening appointments and seeing Drs when symptoms first appear.

Today’s meeting was called to explain, as it stands at the moment, about the transition from LINk to Healthwatch. What it means? How it will impact current projects?

Healthwatch is the new consumer champion for health and social care in England. It provides a voice for the community to improve care, to complain, to acknowledge good care etc in your local area. It should also be used as a place to signpost to other health and wellbeing charities and organisations in the area and for those organisations to work with Healthwatch.

We are all aware of national projects looking at hospital care or home care. Perhaps you could get involved and make a difference locally by using your experience to make your voice heard DIRECT to the local area. There are a lot of opportunities to get involved. Attend meetings. Be part of a project group inspecting hospitals, surgeries, clinics etc. Feed back on your experiences. Membership is free and you can choose how much time or experience you might want to dedicate.

There was also a presentation by User Involvement Lead for the new Cancer Commissioning Team to tell us all about the new Cancer Services in London. There has been a lot of confusion about what is to happen. How London is to be divided into regions to work within the new structure. How we can improve cancer services for the many people diagnosed each year in London.

A few facts:

Around 13,600 people die from cancer in London each year.
More than 50% of whom are under 75 years of age. The number of new cancer cases in London is predicted to increase from around 27,000 in 2002 to 28.500 in 2022

Londoner has historically reported a poorer experience of cancer care than compared with other regions of England. This needs to improve. Not only for those being diagnosed but those living with and beyond a diagnosis. We have so many cancer specialist hospitals in London but we need to ensure that they are working together for the benefit of all patients and carers. We need to ensure that the service provided is of the best possible care but that it is equitable no matter which hospital you attend. Collaborative working and less ‘competition’ between hospitals and trusts. I personally feel that we, patient and carer advocates, need to continue to remind the people in charge that the service they offer should be the best and should be patient-centric!

London cancer services have been divided into two areas:

London Cancer Alliance – West and South London
London Cancer – North and East London

Although that sounds a clean division. In fact it’s more of a crescent and geographically cover a vast area. There have been huge concerns about the spread of hospitals and trusts and how they are going to communicate. Just to host a short meeting will take many hours for some participants to attend.

It’s also very important that we, as patient and carer advocates, participate in the new structure. There are opportunities to sit on committees and boards. There are also user groups, pathway groups and many other opportunities. Not all of them are regular commitments. Not all of them require you to attend meetings. Your experience as a patient or carer is critical to ensuring improvements can be made. Often, and at a simple level, the wording in leaflets and information can be improved by patients reviewing it!

Below are a few links:

North West London Commissioning Support Unit – Patient focus. We’re passionate about helping you improve services for patients and will work with you to deliver the change and benefits you’re striving for.
West London Clinical Commissioning Group
London Cancer Alliance – Improving Cancer Outcomes through partnership
London Cancer – London Cancer is a partnership of NHS, academic, charity and cancer specialists dedicated to providing expert, compassionate care for every patient, every time.

We also discussed briefly the results of the 2013 National Cancer Patient Experience Survey. Disappointingly London doesn’t fair too well. There are even a few points where it appears some of our hospitals are doing OK… until you spot that in relation to other hospitals we all did badly! Do have a look at it. Perhaps your input and shared experience could help improve the services.

Macmillan have also commented on the survey here.

Tera Younger Memorial

Posted on 19/09/2013 by AnnaGoAnna

During my time in Cancerland I’ve been blessed to meet and get to know a number of wonderful people. One such person was a lady by the name of Tera Younger. I had the honour to work with her on a couple of projects and also to be part of the same committees and boards. Tera always amazed me at the amount of positions she held, the knowledge that she had obtained and also the tenacity to see a project through. She was an incredibly positive person with a warm heart and a kind smile.

There was no doubt that some people referred to her as ‘Terror’ and wished she’d give up on projects affecting them. But Tera didn’t. If she believed in something she would research it, back it with facts and figures and do her very best to improve, alter or advance.

For me, Tera was also an incredibly positive person. On more than one occasion she mentored me regarding projects. She put me forward for more senior voluntary roles. She asked my opinion and review. More than that, she believed in me. In my ability and my voice of experience from my own cancer ‘journey’ and also representing others.

Today a group of us gathered in the Chapel at the Chelsea & Westminster Hospital and celebrated the life of Tera.

It was clear from the stories being told, as part of the service as well as before and after it, that Tera will be truly missed. Missed as a person for sure and also for the dedication made to her work.

Rest in peace Tera. But also rest assured that your legacy will live on to improve, advance, alter AND importantly make all healthcare more patient-centric.

Shine Fundraising Tea

Posted on 08/09/2013 by AnnaGoAnna

As you know I belong to a support group for younger people diagnosed with cancer. Shine Cancer Support was set up by cancer patients who realised they didn’t quite fit into the ‘norm’. The organisation has groups through England (more all the time) who meet up regularly. The London group meets every month, usually in a pub or a bar. We talk about our experiences sometimes, we share what we have learnt and sometimes we don’t mention cancer at all but simply talk about getting on with life. It’s not like many groups where you may sit around a circle and discuss problems. More like a group of friends with a common interest.

Today was a fundraising afternoon tea in order to raise funds to keep the group going. We don’t have huge costs but the charity likes to pay for the first drink so that anyone affected by cancer in their 20s, 30s or 40s can pop along for a drink with some new friends.

Great afternoon. A few introductory stories from Ceinwen and Richard. Fun entertainment. Always fun to catch up with my Shine friends. Hopefully raised lots of money too… if we have more than enough for the London group, the excess will go toward other groups being set up or a retreat that is hoped to happen next year.

Cancer Research – “Your Say, Your Day, Your CRUK” event

Posted on 06/09/2013 by AnnaGoAnna

Today’s excitement was that I have been invited to attend a Cancer Research UK event in London. 10 other similar events are taking place around the UK simultaneously with the hope that together we (at all 11 events) will provide Cancer Research with valuable input with regard to more patient/carer engagement in research together with policy and campaigning.

In London there were approximately 100 patient/carers in attendance and I was really pleased to note that Cancer Research had been able to get a good balance of men, women, older, younger, working, not working and different stages of cancer diagnosis/treatment/remission. I’m always very aware that often the people who dedicate time to attend these events are often those who are no longer working and often older – we need to get more younger participants so that the views of young adults, new parents etc are also represented. But Cancer Research appear to have done this today!

Having just made that point all girls in this pic!

The day’s agenda is focusing mainly on two main discussions (below) followed by a talk by Professor Bob Brown, Head of Division of Cancer and Chair in Translational Oncology at Imperial College. Then (thanks to technology) a message broadcast to all locations by Harpal Kumar, Chief Executive of Cancer Research UK.

The first discussion – Involving people affected by cancer in research. On our table it was a lively discussion leading to our facilitator writing super fast to take down all the notes. We divided the discussion into three main categories:

What patients could be involved in
Helping to train researchers in how to talk to patients
What motivates people to be involved.

In summary (and believe me this post would be pages long if I put it all down), we said that we believed patients/carers should be involved in everything Cancer Research did. We asked that there should be more of an open dialogue between the organisation and patient/carers. We could help with reviewing documentation, website, information and also media. Don’t assume that patients won’t want to be involved, have an opinion or perhaps enhance the services and products. We advised that patient/carers can provide input at meetings, events and in person but also by email or via online surveys and forums. This additional way would allow people who aren’t able to leave the house to also provide their input. Could the researchers/scientists provide more information to the patient/carers about what they do? Perhaps tours of research facilities. Leaflets and newsletters with updates. We also asked if results could be published… even for projects that didn’t complete or failed. Collaborative working between the researchers and the users… think of it like translational research! If we can take research from the lab bench to the patient bedside then we should consider the same for patient/carer involvement.

We suggested that patients/carers who were advocates or past clinical trial patients could train utilise their experiences to train others. Nurses and doctors could understand the patient journey with regard to clinical trials. What they had been worried about. What could have been explained differently or in more/or less detail. What their experience was and why it was important to them to participate. We felt that these people could also be part of a video/tv campaign to educate the public about clinical trials. Not just the ones that include taking medicines or drugs but also those that mean tissue samples being sent from operations or perhaps completing surveys or research about side effects etc. So many people, until they need to understand, don’t come into contact with clinical trials and therefore many just remember the ‘elephant man’ trial a few years ago and assume this risk for all. Utilising the patient/carer message could dispel this myth and many more and encourage people to always consider a trial as part of their medical journey (if available).

Patient/carers input needs to be valued. After all, all these people were also someone before they were diagnosed or cared for someone who was. Maybe worth remembering that in one chemo ward an organisation may have all the skills they need for the whole project AND now they all have first hand experience too!

What motivates people to get involved? In the most part the answer is usually because they have been affected by cancer. However it can’t always be assumed that this is the case as often it may be more altruistic.

Everyone needs to be realistic and understand the requirements on the participants. Perhaps they have time but don’t have energy. Perhaps they have a great deal of time at the moment but know they have treatment coming up. Perhaps they want short term assignments or to help remotely. Ask. Ask the participant and also build rapport so that they don’t feel overwhelmed or ‘put upon’. We discussed that usually you get a better response and longer involvement.

The second part of our day regarded ‘Involving people affected by cancer in policy and campaigning’.

Something that was raised in the earlier part of the day was that patients and carers should be involved in deciding WHAT is to be campaigned for and what policies were prioritised. We felt it was a little patronising to be told what we should be campaigning for without knowing that there was sufficient patient/carer input at the start of the discussion. After all if it was something we were passionate about, would we not then put more emphasis on getting the message heard?

We asked for training, support and feedback for all participating. For many public speaking is part of their career however for some talking about something so personal can be difficult. Perhaps as part of the training use other patient/carers who have previously spoken publicly to talk about their experiences, how they overcame their nerves, what they felt got the point over etc.

We also felt that it was important for Cancer Research to publicise more the work they do with regard to influencing policy and campaigning.

This posting is only part of what was discussed and Cancer Research have also put together a blog with some more of the points raised. Do post any feedback or comments on their page.

In London, we were also treated to a performance by the Combination Dance Company – Code. Code are preparing a performance project that will be seen throughout the UK which will, through dance, words and music, tell a story about cancer and particularly research. Do keep an eye out for Code where you are. In the meantime you can follow their progress on Facebook and Twitter.

Research interviews

Posted on 05/09/2013 by AnnaGoAnna

I was invited to undertake some research for a pharmaceutical company. I’m not sure which one but was delighted to be asked, particularly as all the participants they asked are all cancer patients who have been diagnosed within the past 4 years and consider themselves currently in remission. I fit all categories and was interested to hear the questions to understand what they wanted to know.

An hour of questions. Predominently about the level of information, support and services available to me before, during and after my diagnosis. Where did I seek information? What sort of information did I find? What would I have liked etc?

Importantly the interview went on to ask about what I would have liked to have found. Where I would have liked to have found it. What would improve the information.

I was able to speak not only from my personal experience but also using anecdotes that I’ve gleaned from all the people I’ve met online and in person. I hope I was able to represent a number of people (and their carers and families) with the input I gave.

Overall I was pleased that a pharmaceutical company was looking for patient/carer engagement. Our views. Our opinions. Our experiences etc. Let’s hope the information provided and gleaned from my answers and other attendees will guide the pharmaceutical company to improve their services or indeed change the method of their delivery.

AnnaGoAnna Wallace

Glass, craft and me

Category Archives: Volunteering

Sarcoma SPAEN Conference – Day 3

Sarcoma SPAEN Conference – Day 2

Vintage Afternoon Tea – Fundraiser for Penny Brohn Cancer Care

Macmillan Cancer Voices Conference 2013

Breast Cancer Care Fashion Show 2013

Healthwatch – Cancer Project Group

Tera Younger Memorial

Shine Fundraising Tea

Cancer Research – “Your Say, Your Day, Your CRUK” event

Research interviews