Tuesday, 9 October 2012

Mesothelioma UK conference - report of the day

This is my report of the day. It is a little choppy but I think I got most of it. Apologies for my choppyness : )


Jeremy Steele - opened the conference.
He talked about funding nurse specialists in every hospital/mesothelioma centre.
Personally I would love to see this happen.
Dr Steele also explained pleural mesothelioma in detail which was very informative.
He showed diagrams of where the disease attacks and ikened it to moss on a church tower.

He explained that when someone is diagnosed with mesothelioma, the most important thing to do is to deal with the fluid and collapsed lung.
Staging - helps dr have an idea how advanced the cancer is.
There is no staging system of mesothelioma that is of any value at present as it is so difficult to determine.
It is also important to know about how symptomatic the disease is with breathing and pain.
A PET scan was explained as well, the  patient is injected with glucose with a radio active marker.
Areas of high cell activity of cancer turn black. there is a lot of uptake in kidneys as it is to be excreted.
This technology will be very important.
Stem cell, basic cell from where all cells are developed.
Stem cells marked with tracer, found there way to the heart of the cancer.

Mesothelioma and radical surgery- MARS-

Trial being co-ordinated by royal London hospital Eric limb, half the patients will have operation. it isn't know if removing the lung is a good idea. It is done in the UK but does it help?
A randomised trial would be done to see if it works.
The MARS 1 was difficult as there were not enough patients for the trial, not all are suitable for the operation and when it comes to choices, not surprisingly, some didn't want to take that risk. There wer 50 patients in the MARS 1 trial,  25 had lung removed. It showed more damage with removing the lung.
It was considered too dangerous to remove mesothelioma  off the surface of the heart. the surgeon would remove as much as possible. The patient was treated with radiotherapy, chemo therapy or both after the op.

Trial has received funding from cancer research UK.
Patient who are happy to participate will be given permetrexed. It would then be decided If they are suitable for the trial or not.
Want to improve survival of patients.
there would be a detailed quality of life analysis
The trial should begin early next year, it is agreed by cancer research to fund the first part of the trial.

Meso 2
Chemo study. Dean fennel, professor of oncology. Based at Leicester.
Patient will be randomised to receive permetrexed and cisplatin or
Ganetespin, permetrexed and cisplatin.

Liz Darlison - ganet for meso cells.
John Edwards couldn't attend the trial so Liz Darlison stepped in in his place..
She talked about the UK thoracic surgical centres
All centres offer thoracic surgery of some sort, they may not offer all available surgeries for mesothelioma.
Cancer networks.
Showed the East Midlands cancer network.any mesothelioma operation you can get in the East Midlands centres.
She expalined that there is no national guidance on how to treat mesothelioma.
British thoracic society, lung cancer and mesothelioma advisory group recognise there is no guidance.
Mesothelioma UK have produced a document about good practice.
Peritoneal mesothelioma is rarer than pleural mesothelioma, fewer people are affected and there is less evidence to underpin surgical peritoneal mesothelioma.
There are 2 centres of expertise in peritoneal mesothelioma, these are Manchester and Basingstoke .
The treatments and options are not widely known about.


Control symptoms of the disease.
Remove the disease if possible.
Part of multi modality treatment.
Surgery not always necessary.
Thorocoscopy
Video assisted thorocoscapy
Mini thoracotomy
Mediastinoscopy
Thoracic surgery- to control symptoms of the disease
Vats biopsy
Pleurectomy
Debulking

Thoracotomy

Remove the disease
Radical decortication
Ltsp- lung sparing total pleuractomy
Diaphragm
Pericardium. Involvement

Extra pleural pneumonectomy EPP is not done in the UK
David Sugarbaker
International mesothelioma program
Still remove lung if they can' t do anything by a lesser procedure.
Recectable  vs operable
Should be based on fact not opinion
Opinion should be comprehensive if you decided to have disease removed has the case been considered, was there a surgeon present?
If you don' think you have had a comprehensive opinion, ask the be referred to a centre, do it through local teams, ask GP to do it any doubts, contact mesothelioma UK

Access is variable and opinion differs from dr to dr
Surgery does not offer a cure and can't guarantee it will lengthen life.
The patient is in control and at the forefront of making decisions.

Faye's Mohamed - peritoneal mesothelioma
It was great to see this subject covered as anyone diagnosed with peritoneal mesothelioma doesn't always feel as supported as those with pleural mesothelioma.
Consultant general and colorectal all surgeon
Combine surgery with hot chemo wash.
First centre to be funded to treat pseudomyxoma
Peritoneal mesothelioma - Sugarbaker technique- accepted treatment.
Only pseudomyxoma funded by government
The procedure is offered to appendix cancer patients.
People who develop disease may have had parents who worked with asbestos
Peritoneal mesothelioma rarely spreads outside abdomen
No clear definition of natural history so it is harder to find the source of the exposure.
Systemic chemo is not affective when treating peritoneal mesothelioma.


Symptoms -
Tummy getting bigger
Lose weight from face but tummy getting bigger
Pain in the abdomen.
Problems with opening bowels
Trouble with vomiting

Containing nutrition is a difficulty due to the disease.
David and Paul Sugarbaker (USA) are brothers.
The procedure strips all surfaces involved with disease, bowl,spleen,etc.
It does requires PCT approval
Intraperitoneal chemo hpec
The chemo is heated to 42 degrees centigrade, it is then swished around the area for about an hour which mops up cells .

Not everything that counts can be counted, and not everything that can be counted counts - Albert Einstein.

10 hour operation and a 3 week hospital stay
There are 3 tumour markers, if the markers are high then mesothelioma is aggressive.
PET scan of abdomen,  not all disease lights up so is under played.
Median survival rate is 45 months

Jan Egerton - patient
Jan thanked John Edwards for his support, she said he has passion.
Jan was diagnosed with pleural mesothelioma in 2004
She suffered from pain in the back, why would a woman in her early 40s have mesothelioma
she was shocked when she was told she had terminal cancer.
She had to prepare for an operation and was the 3 rd woman ever diagnosed in her hospital.
She expalined how mesothelioma classed as an old mans disease and that the disease was a man made cancer disaster.
She had her first chemo in December 2004. At one point she had her gall bladder removed.
She contacted Jeremy Steele and di some research in USA, ucla
Fear of dying from mesothelioma was less compared to her will to live.
She had a procedure called cryoblation this wasn't  a success for Jan because she had too many tumours
Contacted John Edwards who debulked the tumours, luckily it hadn't gone through the schist wall.
She then had surgery in 2009 this success gave Jan a full year cancer free.
April 2010 mesothelioma was back, her own team said it wasn't but she knew it was.
in 2011 she went back to the USA.
Jan says going for a trial is her only option now. With no team backing Jan, she does everything herself
She explained how each patient brings something different as symptoms are different from patiemnt to patient.
Only 40% of patients get success with permetexed, Jan's question is "what about the 60%"?
She told all listening that this was not an old mans disease anymore, there needs to be action, and money.
She said Meso warriors would carry this battle forward.
Such an inspiring talk from a very brave lady.

Dawn mckinley
Patient and carer survey

Dawn opened with how very privileged she was to follow Jan.
She talked about the patient and careers experience survey and thanked patient and carers for their support with the project.
She thanked Chris Knighton from the Mick Knighton Mesothelioma Research Fund for contributing to the cost of commissioning the survey.
The people who filled in the survey, 42% were patients and 34 % were carers/partners/relatives who are bereaved, others were 24 % patients/carers/relatives who are still fighting the disease. 80% of the people were men and  20% were women.
Survey can be found online at mesothelioma UK website
The results will be used to educate drs and specialist teams in hospitals.
Mesothelioma UK will make recommendations and the survey results will be embed in the mesothelioma UK action plan.
The aims and objectives are to improve patient care.

Jill lemon - fund raising meso UK

Mesothelioma Uk became an independent charity 2008, the aim is to raise funds for resource centres.
£2065.000 a year needs to be raised to run the charity.
Every little bit helps.
Mesothelioma UK have a fund raising pack for anyone wanting to raise money to keep their good work going.
The charity has gone through some changes, they have new branding, a new logo for 2012, Forget Mesothelioma not and a character bear called Thelma.
Jill welcomed Gerry Slade to mesothelioma UK team.
The team would like to see a specialist nurse in every net work.
Danny Parr  is the son of  Richard Parr who passed away 3  years ago after a battle with mesothelioma.
He was 51 years old when when diagnosed and passed away 19 months later.
He had always worked, 30 years in industry. Richard had a car accident and it was suspected that he had a cracked rib due to the pain he had, mesothelioma was found and he used it as a catalyst to do things he wanted to do.
He was inspiration to fund raise with his son, Danny. Fund raining was done by taking part in triathlons which raised  £10,293-83 in 3 years for mesothelioma UK.
What an inspiration to other families.

Jacquetta fewster - project manager

Jaquetta talked about walking for health.
She told the listening audience that you need to listen to your body, wear comfortable shoes and make sure you take advice from your GP.
She advised doing a walk10 mins 2-3 times a day and build it up at your own pace.
Walking for health was developed 12 years ago, Dr William Bird's idea.
Website details where walks are
Similar schemes in Wales, scotland and Ireland
Mesothelioma UK sell pedometres for anyone who wants to do this.

Questions

Meso 2 trials will be early 2013, the patient must not have had previous chemotherapy.

NPRO 15 is a second line study
Previous chemo
Contact mesothelioma UK for details.
No test to diagnose before disease takes hold, no tests, meso marker is not in standard practice and not accurate at  present.
No one is spared from asbestos, everyone is at risk.
The screening program's in Western Australia.
Talked about hospices recouping costs from insurers, hospices can get around £8,000 per patient for the care the patient has with them. This can be agreed within a settlement. This is only for settlements that are going through now and not for anyone who has already who has already received their payment.
Why is it difficult to get insurance? Travel insurance was discussed. MIA is one company that will insure mesothelioma patients and another is insurewith. There is no insurance for anyone having treatment abroad.
Mesothelioma UK have an information pack and any doubts, please contact them for more information.

Liz Darlison

Liz talked about getting the most out of your treatment and care.
She talked about the hotspots around the country- 4028 registered
The mean age of patients is 71.5, 75 % new cases 2006 -2009
Mesothelioma is more common on the right lung, not the left and is more common in male than female although the ratio is evening out and the exposures are now more casual.
Variations are across the country, Only 3% - 35%  patients get chemotherapy treatment.

Cancer networks
NICE
national action cancer team
LCMAG
There are 28 cancer networks, East Midlands cancer network
Network site specific group
There is a lung cancer Multi Disciplinary Team (MDT) in each hospital.

Liz asked us all to rememeber that knowledge is power.

Every cancer centre will have an information centre
Be aware of what you are entitled to
Find out about your disease and treatment
Learn as much as you can about mesothelioma
Seek out trustworthy sources of information

Mesothelioma UK has put in a legal section on website which is why the site is being revamped.

Standards and guidance criteria :

Two week wait
31 to 62 day targets
Key worker (ask who is my key worker)
Holistic needs assessment
Gold standard framework (GPS have a GSF register)
Advanced communication skills ( training for breaking bad news, actors, feedback)
Free prescription (every cancer patient has free prescriptions)
If these are not adhered to, money is lost

Trials
NHS trust website ( NHS . UK) meso trials
Trials .gov

Develop a team
You are in the driving seat, take control.
Identity a responsible consultant
GP
Always take a buddy/partner with you to an appointment.
Key worker
Lung cancer nurse specialist

Asbestos support groups, more in the North of country as this is where the top hot spots are.
Meso support groups, in health care centres
News letter meso UK
Communication is the key.
Don't wait for appointments, contact your Dr with any queries you have.
Be direct and in control.
Ask questions.
2nd opinion not a legal right but an option.
Be prepared to change exercise, eating etc.
HOPE seek it and identify it and avoid those that crush it
If you have it, share it

HOPE IS FAITH HOLDING OUT ITS HAND IN THE DARK - Christopher reeves

Robert Thomas consultant  oncologist at Bedford and added rookies hospital

Common symptoms of cancer.
Fatigue and tiredness
Mood, anxiety
Depression
Poor appetite

Cancer net.co.uk

Self help strategies
Smoking, here is an interaction of getting more affect from exposure if you smoke
Carry on smoking your chance of reaching 2 years survival is lower

Exercise - walking for life, mproves fatigue and tiredness
Quality of life
helps with a poor appetite
Muscle power
Exercise capacity
Psychological well being
Bone health - eating protein
The wright foundation
Instructor for cancer patients

Diet
Carcinogen - antioxidant
Acrylamines
Poly phenols
ORAC
Super foods
Antioxidants
Herbs, spices, berries, wild variety. Green tea, prunes
Turmeric broccoli pomegranate green tea
Pomy T study
Essential minerals vitamins and fats
Long term,
Zinc long term duration had a higher instance of cancer
Selenium
Vitamin deficient - high risk of cancer, too much vitamin also a high risk of cancer.
Omega 3 95%

Being over weight

Carcinogen avoidance

Christine Winter -IATP

R
IATP runs on good will , knowledge is power
The organisation has a social conscience
Sharing information and awareness is difficult
IATP has a mission to raise awareness and teach skills to those who need it
Homes not covered by regulations unless it is a business
Give people the knowledge to know the risks in their homes.
HSE has requirements on its website for companies working in the home
Ordinary people are vulnerable
Artex, contains chrysotile
Organisation has a responsibility to share this education
Nation of DIYers
If in doubt, seek a professional
Engaging work from a tradesman, do you ask if they have training?
Non licensed training, refreshed every year.
Always ask the question
The HSE had a successful Hidden killer campaign 2008
You can take a virtual tour round a house, find where asbestos is in the home
Take 5 stay alive, BLF campaign.
AIS ASBESTOS IN SCHOOLS
75% of schools contain asbestos
With every teacher exposed, 10 children are.
Resources of free information
Campaign to educate

Never doubt that a small group of dedicated people can make a difference

Laurie  Kazan Allen
(Kicking ass)
Laurie started her talk by telling Danny parr, your dad must have been some guy because his son is pretty impressive
Laurie had £170 raised for meosthelioma UK which she presented to Liz. It was raised through selling her magazine.
Industry propaganda is being challenged now.
She talked about the global ban asbestos campaign.
IBAS
Victims groups

Laurie spoke of her diary of events this year.

February 13 th 2012
Italy eternit
16 years in prison
The law is equal for all
Justice for eternit victims
It took 3 hours to read the verdict.


March 2012
Canada crysotile institute shuts up
30 years institute exported asbestos around the world

April 2012
Press conference held by world health organisation
Oranit

Thailand used promotional t-shirts saying that asbestos was safe. Their quote "a tooth pick is more dangerous than asbestos" It also claimed that only chrysotile can be digested in the body and doesn't build up.


May 2012
There was a 600 kilometre walk in Australia a walk for Wittenoom's children

June 2012

Asbestos scandal
Brazil is the third biggest producer of asbestos
Out side factory, protest
Eternit factory in Rio

UK
Annual asbestos ceminar
Westminster
Talked about situation in India
British banks and institution are funding that asbestos industry
Push Australia to take a regional role miss Singh

August

Asbestos hotspot in Russia
27 th aug heard about asbestos threat for the first time

September
New asbestos mine Canada
£58 million loan was granted
Sept 4 th that government were thrown out of power
New government have revoked the loan
70% asbestos imported to UK is from Canada
Russians are trying to get positions reversed on asbestos
China - biggest user
India
Russia

Russia global asbestos producer
China
India
Meeting in Brussels European asbestos catastrophe
Poland wants their country free of asbestos
Justice for all asbestos victims
IBAS partners MKMRF - June Hancock Mesothelioma research fund - hazards - GMB and another one I couldn't see as I didn't bring my right glasses!
Laurie ended on saying how proud to work alongside mesothelioma UK

Helen Ashton - legal situation
Compensation via court
Talked about what is involved in bringing a claim
Have to show the other side was negligent
Employer has gone out of business but need to find the liability insurer
Try to get as much evidence as possible
Schedule of national insurers contribution
Former colleagues can help, do witness appeals in the newspaper, social media etc.
Freedom of information acts request
Companies house for information about companies and employers
Nobody knew asbestos was dangerous? 1898 it was known
And in public domain
How long will it take for a claim to go through ? Most cases will settle out of court 95%
Timescale for British rail is done quickly
Can't identify employer makes it a difficult case, other medical complaints can impact on the case can take 2-3 years with difficult cases
Royal court of justice fast track procedure
Specialist mesothelioma unit
If other side can't say why they are not to blame it will go through.
4-6 months
Compensation,  how much depends on each individual case.
Financial losses are taken into consideration.
Whether undergone radical surgery or not
Duration of symptoms
Effect that has had on the patient.
Whether it is pleural or peritoneal

Other things looked at are :

Special damages
Care and assistance
Alternative therapies
Aids and equipment
Travel and other expenses
Assistance with house and garden maintenance
Loss of income in the future
hospice costs
Claim dependency

Complementary and alternative treatment
Could prolong life  John Laing plc 2011
What will it cost me?
No win no fee agreement basis
Should receive 100%

Natalie Doyle




Questions
Managing your cough
Common problem with chest problems
Always rule out causes, don't presume it is meso, look at other  causes
Gastric reflux
Chest infection
Ask your dr or hospice centre

Access and care proving difficult because he has no pain
Care decided at a local level, pain shouldn't be the only marker
Any symptom there is support
Are there any other services to access?
Cancer information centres

Common myth passing on meso through breathing and coughing
.???
Absolutely not

Natalie Doyle

What is the gap
A break in a line of defence
An interruption of continuity

What falls into the gap
Huge expectations
Knowledge
Attitude
Communication styles
The future
Hope
Plans
Facts

The patient is in charge

"The single biggest problem in communication is the illusion that it has taken place"  George Bernard Shaw

Natalie told everyone that she didn't have the sporting gene like Danny, she got the tea and cake gene.
Those of us in the profession do care, reign us in and tell us if we are not.
They are there for one reason only, to make sure you get the best care possible
If someone you love and care about was on the other side you would build a bridge.
It is not easy to live alongside someone who isn't well.
Work together and bridge that gap.
TEAM YOU

Liz thanked everyone who attended the conference and hoped they all had a safe journey home.


Results of the patient and carer survey done by Mesothelioma UK 2012.

EXECUTIVE SUMMARY

652 patients and carers responded to the survey, carried out between December 2011 and April 2012.

Overall experiences of care varied widely from “wonderful” to “barbaric”.
Nearly 20% of responders saw their GP five or more times before being referred to a
hospital specialist.

Many responders commented that GPs should have more training in recognising the signs and symptoms of mesothelioma.

About 50% did not fully understand their diagnosis when they were first told about it.

34% of responders felt that their diagnosis could have been explained more sensitively.

At diagnosis, 30% did not receive written information about mesothelioma.

Over 36% would have liked more involvement in making decisions about their care.
Several people commented that variations in the care available to patients in different geographical locations were unfair.

Just under 50% thought that their outpatients appointments were not frequent enough.

Just over 50% said that doctors “always” gave understandable answers to their questions, and several commented positively on doctors’ willingness to respond to 
their questions.

40% said they were told different things by different doctors and nurses.

Around 27% thought doctors treating them did not know enough about mesothelioma.

88% were given the name of a Clinical Nurse Specialist and many positive comments were made about the specialist nurses.

Just under 50% felt they were not given emotional support in dealing with mesothelioma.

71% said they were given information about self‐help and support groups. Many said they found support groups very helpful, and many mentioned Mesothelioma UK.

About 50% would have liked more support at home (such as home helps or district nurses).
 
Almost all responders got the information they needed about getting financial help.

Many comments about Macmillan nurses were very positive, but there were a fairly high number of negative comments about Macmillan nurses.

Most thought their care was well co‐ordinated between different organisations, but several found a lack of communication between organisations, which caused them distress.

55% of responders said they definitely received good support from their GP and community nurses, and there were many positive comments about GPs and community nurses.



http://www.mesothelioma.uk.com Survey courtesy of Mesothelioma UK 2012




















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