Working mainly on a voluntary basis for cancer charities, I involve myself in patient advocacy, and support following a diagnosis of cancer. This includes being a patient representative working within my local hospitals cancer services.
I have also worked within the NHS to help raise awareness of patients and carers usefulness in helping to shape the future of cancer services, and encouraging patients to `have a say' about the service they use. I feel this helps with the healing process, as being a patient or carer, there are often issues about one thing or another along the treatment pathway. (It can be such a long, complicated pathway for some). I also work for Macmillan Cancer Support as a trainer, helping patients/carers and health professionals to have confidence to work together and be effective in shaping the delivery of cancer policy.
My aim is to gain the best practice for patients in clinical treatment and for everyone faced with a diagnosis of cancer to have the same access wherever they are in the UK.
On a personal note, I would like to hear from people
who want to talk about their experiences of cancer, good
or bad. For instance, what do people think makes a high
quality service ? Please e-mail me and
tell me what you think.
The UK Breast Cancer Coalition was a charity run by a group of women who have personal experience of the disease and who are dedicated to improving services and raising awareness of patients needs. They assisted their members to help them achieve these goals by empowering them with information, so that they can become well informed advocates and so actively participate in working towards changes in policy, nationally and locally. At the beginning of 2004 the UKBCC merged with Breakthrough Breast Cancer a national charity specialising in fundraising, and set up a Campaigns and Advocacy unit within this charity. The most successful event that was run by the UKBCC was the annual Westminster Fly-In where members meet up with their MPs and present campaigns for the MPs to take up for the coming year. This is an exhilarating event over two days and the picture here shows our delight in partaking in it. The event takes place every October now under Breakthrough Breast Cancer's banner.
There's an event in London put on by Breast Cancer Care every year, it features ordinary women (and men) who have had a diagnosis of breast cancer modelling designer clothes at a huge fashion show. I took part in the show a couple of years ago and post a few pictures here. If anyone out there would like to give it a go, contact Breast Cancer Care, their website is listed below. This was an exhilarating experience and on the day I took part £230,000 was raised for the charity. We were made up by expert make up artists, and had our hair done by top stylists. The clothes were beautiful and the whole event was tremendous fun.
Have you heard of Race For Life ? This is a 5 km race/walk (whatever you feel comfortable with) put on by Cancer Research UK every year at venues all over the country. It is only open to women and people of all ages and abilities join in, raising money by sponsorship. I have put a picture here of the Peninsula (Devon & Cornwall) Cancer Network taking part at Exeter at one of these events. It's a fantastically spiritually uplifting event, and I can thoroughly recommend taking part.
Exeter, Race for Life
Trip to Washington to see how the Americans campaign
A couple of years ago I attended the annual Advocacy and Training Conference of the National Breast Cancer Coalition of America in Washington DC. This is a five day conference attended by over six hundred women which culminates in a lobby day on Capitol Hill. This was a busy, tiring, but thoroughly enjoyable experience. The Americans are excellent hosts, and I so admired the many, many women who had travelled across America to attend. These cancer survivors are an inspiration to us all. Can't wait to go back another year !
Me on Capitol Hill !
Ever heard of Cancer Voices ?
CancerVoices - your chance to help shape the future of cancer care. This is an independent UK-wide network of people affected by cancer who are helping to shape the future of cancer care.
How does it work ?
People who want to be involved can register on the Cancer Voices website. Opportunity exchange, Cancer Voices, Macmillan There are several ways in which you may choose to participate, including joining a *local user group and working on health forums or committees, giving views through discussion groups or questionnaires, training other service users, etc. alternatively you can visit http://learnzone.macmillan org.uk. Here you will find details of workshops.
*Below is a picture of a Local Cancer user Group In Action
A bit more fundraising took place in June ........
An enterprising lady decided to show how great you can look even after the diagnosis of breast cancer. With the help of friends she got together 14 women who had had cancer and set about organising a sensational fashion show ! The show made £4,000 on the night for a local cancer charity situated in the local hospital. Here is a picture of 3 of the models inbetween sets.
People can get involved in all sorts of ways, just meeting up with others who have also had cancer can be incredibly empowering and helps build confidence and self esteem. Here are some pictures of three events where people gathered together to discuss where they could make a difference to the thousands of people diagnosed with cancer every year.
Above are pictures from Breakthrough Breast Cancer events and a Breast Cancer Care event
Above is a picture showing a scientific advisory group at work - the committee has 2 patient representatives on board - illustrating that ex-patients can work alongside the research community.
Visit to San Antonio,Texas
Following on from the picture of the Breakthrough Generations Study scientific committee, with myself at the back left, - I have just come back from attending a Breast Cancer Research Symposium in San Antonio, Texas. This event takes place every year in San Antonio and is a cutting edge cancer research event. Around 9,000 delegates attended this year with just about 200 patient advocates, mostly American, but a few from around the world. Breakthrough have funded 2 volunteers this year to experience this prestigious event first hand and bring back and pass on their experiences as patient advocates. It was very noticeable how professional the American advocates were, most of them having attended a scientific training course beforehand and so were able to communicate fully with health professionals at the sessions. Wonderfully empowering.
The Breakthrough group including 3 patient advocates in San Antonio, December 2007
Time off for a little sightseeing - The Alamo !
The beautiful Riverwalk - meandering under street level through the city centre.
Here are some informative websites: