NET Patient Foundation

Work Capability Assessment for cancer patients

maiasissons — Wed, 22 Feb 2012 13:28:07 +0000

On the 16th December, the Government launched a consultation on reforming the Work Capability Assessment. This was with a view to increasing the number of cancer patients who receive unconditional support through the benefits system while they are receiving treatment.

For ease of reference, I attach a link to the consultation document which is located on the DWP website:http://www.dwp.gov.uk/consultations/2011/wca-assessment.shtml

The DWP wishes to gather as wide a range of views from organisations and individuals affected by cancer – and your views as a patient would be extremely valuable to them.

They have therefore arranged an informal seminar which will take place on 27th February 2012 between 14:00 and 15:30. The seminar will take place at DWP, Caxton House, Tothill Street, London SW1H 9DA.

If you would be interested in attending please let them know as soon as possible at email address: WCA.team@dwp.gsi.gov.uk.

You will then be sent further details about the meeting. This is a great opportunity to help the DWP to gather views and evidence to inform their consultation and contribute to changes that will increase the number of cancer patients who receive unconditional support through the benefits system.

High Grade NETs

maiasissons — Wed, 15 Feb 2012 10:57:43 +0000

This is our newest publication; a booklet on High Grade NETs. Click on the image to download.

Join our Patient Panel

maiasissons — Tue, 31 Jan 2012 18:44:41 +0000

We are hoping to form a Patient Panel, with representatives from around the country, and with different types of NETs. Would you like to join us? Our first meeting will be on 29th February near Heathrow. We’re looking for a group of patients who can help us to make the voices of all NET patients heard – amongst the media, government, and the medical profession. Or you may like to help fundraise, or bring together patients in your region.

If you’re interested, please contact Cathy Bouvier on 0800 434 6476 or at catherinebouvier@netpatientfoundation.com by 6th February. If you’re interested, but unable to make this first meeting, we’d still love to hear from you.

Thanks.

Updated Gastrinoma booklet now available

maiasissons — Tue, 31 Jan 2012 10:27:45 +0000

We are in the process of updating all of our patient information. The Gastrinoma booklet is the latest, and is now available by clicking here.

Updated Phaeochromocytoma, Glucagonoma and VIPoma booklets will soon be available, and we are also producing a brand new High Grade NETs booklet.

New patient groups in Scotland and Southampton

maiasissons — Tue, 31 Jan 2012 10:22:15 +0000

This month has seen the launch of two new patient support groups – the Ann Edgar Charitable Trust in Edinburgh, and Planets in Southampton. Both of these groups will be organising local patient events, as well as raising money to fund equipment and research in their regions. These groups will soon have their very own ‘micro sites’ here at www.netpatientfoundation.org

The Ann Edgar Charitable Trust is holding its inaugural patient forum on 15th March in Edinburgh. For more information, see the Forum Invitation and Forum Agenda. Planets will be holding its first patient meeting soon – we’ll keep you posted.

The Ann Edgar Charitable Trust

Planets

Son of NET patient runs the London Marathon

maiasissons — Thu, 19 Jan 2012 10:55:59 +0000

Best of luck to Steve Meigh, who will be running the Virgin London Marathon on 22nd April in support of his mum, Jo, and to raise funds for the Foundation.

To donate, please visit Steve’s page at: http://uk.virginmoneygiving.com/SteveMeigh

RCF online survey: Improving outcomes for patients with advanced cancer

maiasissons — Wed, 18 Jan 2012 12:29:01 +0000

The Rarer Cancers Foundation is keen to do all it can to support the NHS in ensuring that people with rarer and less common cancers have the best experience of their care and treatment possible.

In order to do this, we need to learn more about the experiences of the people we support around what they value when they have advanced forms of cancer. Your feedback is vital so please do take the time to complete the on line survey at https://www.surveymonkey.com/s/Patients_views.

Your response is really important to us so we can have as broad a picture as possible and therefore we are seeking input from cancer patients, their family members, carers and others who have an insight in this area.

Please do take the time to complete the survey so we can collectively help to make a real difference to the outcomes for those with advanced cancer. The survey will close on the 30 January 2012 and the findings from this survey and other research that we are currently undertaking for this project will be published late February/early March 2012.

Should you have any queries or need help with this survey please do not hesitate to contact me.

With best wishes

Debbie de Boltz

Executive Director

The Rarer Cancers Foundation

Incorporating the Rarer Cancers Forum

debbied@rarercancers.org.uk

Tel: 01227 738279

“United by our experience of a rare cancer”

maiasissons — Mon, 16 Jan 2012 15:37:47 +0000

Joan Wells and Esther Edwards met at a NPF patient meeting, and have since become great friends, and helped to raise more than £2,000 for the Foundation. We’d like to thank them for all of their hard work, and also for telling their story and helping to raise awareness of NET cancers through their local press.

To see the article, please click here.

Wednesbury woman’s appeal to find other patients with rare type of NET

maiasissons — Mon, 16 Jan 2012 14:38:42 +0000

Stephanie, from Wednesbury in the Midlands, was first diagnosed with a neuroendocrine tumour in her breast in 2007. There have been very few recorded cases of this rare type of NET, and Stephanie is keen to make contact with anyone else who has had a similar diagnosis.

To read Stephanie’s story in full in the Sunday Mercury, please click here.

Bizarre Christmas challenges raise funds for research into NETs

maiasissons — Wed, 04 Jan 2012 12:19:00 +0000

This Christmas, friends of Natalie Lobel, have embarked on a series of challenges, including dancing the conga, and gatecrashing Hamleys.

Natalie was diagnosed last year with malignant insulinoma, a rare type of NET cancer, after suffering a seizure and discovering that her blood sugar levels were dangerously low.

She set herself the goal of raising £70,000 to fund a research project into the treatment of insulinoma and neuroendocrine cancer and enlisted the help of her friends.

One of them, Colin Burcher, 32, who works for the sales team at Google, devised a webpage where people could donate money and ask him and his friends to complete a Christmas-themed challenge in return.

So far the group have done a three-legged race along the Southbank, danced the conga over the Millennium Bridge, sung Christmas carols in Covent Garden in fancy dress and gatecrashed Hamleys to have their photo taken with Father Christmas.

Mr Burcher said: “Natalie is an inspiration. She has been through an awful lot in the last year and I thought Christmas would be an excellent time to lift her spirits.”

To suggest a Christmas challenge to Mr Burcher and donate to the NET Foundation, which funds research into cancer visit www.justgiving.com/GoogleAutoCharityChallenge

To read about the challenge in London’s Evening Standard, click here.