Category Archives: Blog

“On the Ball”

So pleased to receive this email from another member of our support group about feedback from the “On the Ball” campaign.

“I did apply for ‘Sarcoma Golf Ball’ pack, which I took to our local GP surgery.  I decided instead of making an appt. I would attach a short personal note explaining our interest.  One never knows what is the best thing to do.

Anyway today, I had a telephone call from one of the Doctors at our Surgery, who was phoning on behalf of all the Doctors, who wanted to find out our story, and also to confirm that whilst it may still never be the first thing they look for in a diagnosis, it would be the second.  Great news!

Hope everyone else has had such positive feedback from the ‘golf ball’ .“

This is the second support group member who has received a phone call from a GP in response to receiving the “On the Ball” pack. This is so encouraging!

Tricia

Older People’s Advocacy Alliance

OPAAL and Macmillan Cancer Support want to make sure that older people are supported and enabled to exercise their right, express their views, explore and make informed choices about their care. Yesterday I met two of their volunteers who work with cancer patients in Dorset. I didn’t know anything about this organisation and was very impressed by them and their organisation which is supported by Macmillan.

OPAALOPAAL’s new Cancer, Older People and Advocacy project publication “Every Step of the Way“: 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer  was launched on March 25th 2014. You can download a copy here.

Clinical Research Network: Wessex Launch Event

Went to the launch event of the Clinical Research Network Wessex on 5th June in Basingstoke. There were speakers from the National Institute for Health Research, Southampton University and Portsmouth Hospitals and there are research trials in many areas of health, not just cancer.

Wessex is third in the Top Ten of Networks in England with the greatest  of number of trials. In 2001 only 4% cancer patients were recruited into clinical trials and in 2013/14 it has risen to 20%. Rarer cancers are described as “orphan” cancers as it is more difficult to open and recruit patients to trials. The aim is to enable more patients to enter trials. The quality of research trials is among the best in the world but there is more work to be done.

If you are a cancer patient or carer and  would like to become involved in the Cancer Research Partnership Group based at Southampton Hospital please contact
Jac Samuel Cancer Research UK senior research nurse

The Cancer Research Partnership Group helps refine cancer research activities, raise awareness of trials and support research through advocacy and engagement, making a valued contribution to all areas of cancer research across the South Coast.

Two appalling numbers

As part of their On the Ball campaign, Sarcoma UK has tweeted two astonishing statistics:

  • Only one in four of sarcoma referrals are to a specialist centre.
  • Sarcoma patients wait on average 1½ years for referral.

I find those numbers terrifying and so I applaud Sarcoma UK’s efforts to dramatically improve them. In their strategy for 2014 – 2020 Transforming the landscape for sarcoma they have two targets to deal with this:

  • 100% of people diagnosed with sarcoma will be treated under the care of a sarcoma multi-disciplinary team (compared to only 60% in 2013) (page 19).
  • 80% of people with suspected sarcoma will be referred to hospital for further investigations on their first or second visit to their GP (compared to 2013 where one third of sarcoma patients visit their GP three times or more before referral) (page 15).

Sarcoma UK’s twitter page

Dorset magazine

In June’s edition of “Dorset” magazine there is an article about living
with cancer in Dorset. Included in it is a little bit about my diagnosis and our
support group. The article is timely as this is “Sarcoma Awareness Week”.
Included in the article is a piece about the excellent Grove Hotel where we have
our support group and will be meeting for our Tea Party on Saturday 28th June
from 2 p.m. “Dorset” magazines tend to be in dentists and doctors surgeries so
you may come across it there, but I bought mine in Sainsbury’s and W.H. Smiths
stock it.

Best wishes,

Tricia Moate