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Rhondda Breast Friends > Get Involved > Cancer Focus Groups

Cancer Focus Groups

RCT Cancer Focus Group, 13th October

RCT’s Cancer Focus Group re-started after the summer break on Tuesday, October 13. It consisted of representatives from local cancer and carer groups, national charities and healthcare representatives. Gemma Elsworth, who is launching a new support group called “Lets’ Face it” for people with facial disfigurement, has joined and we also welcomed prostate cancer campaigner Keith Cass who has called his group, "The Red Sock".

Chairman Diane Raybould presented her report as follows,
" The Focus Group met on 13^th October after the summer break. What an inspiring meeting! When it launched in April 2008 only three cancer organisations attended: Rhondda Breast Friends, Cancer Support Cynon Valley and Interlink facilitated the meeting. 18 months later, 20 organisations gathered together to celebrate our progress and look to the future with many more on the circulation list.

In December 2007, I stood up in the Health, Social Care & Wellbeing Forum and commented on the new 2008 -2011 Strategy by saying, “There’s nothing in there for people affected by cancer!” Focus groups followed to better meet the needs of the people of RCT and the Cancer Focus group’s first meeting was on April 28, 2008.

The first point in the agreed Terms of Reference was, “To promote the (RBF) Charter of Rights and its aims”:

· To fully involve people affected by cancer in developing cancer services.

· To set up a partnership between statutory bodies, cancer charities and local cancer groups who will work together to improve services.

· To gain public support that will ensure these aims become reality. 18 months later, by the end of September, we had achieved our aims and many of our schemes had actually been launched! It was all ground breaking stuff! Calendar of Achievements April 2008 - July, 20092008

April : The Cancer Focus Group launched, it was the 1st of its kind in Wales.

NNovember:   The Carers’ subgroup held Carers workshops in December, with feedback
                      and follow up 20^th Jan 09. RCT’s Carers’ Strategy launched 21^st Jan 2009.

DDecember:   1st Representation at Cwm Taff’s Cancer Services Strategy Group
    2009

2^nd July, Launch of Breast Cancer Care Information Stands in Royal Glamorgan
Hospital, the first not just in Wales but in the UK.

9^th July, Visit of Edwina Hart, Minister for Health and Social Services
& Leighton Andrews A.M. for Rhondda.

14^th July, Carer’s Champions launched in GP surgeries.

25^th July, Cancer Information in Libraries Scheme, first in Wales.

Challenges
Our main challenge lies with medical staff and colleagues from Social Services. For our library scheme to fulfill its potential we need our healthcare providers to refer patients, carers and family members to the scheme for valuable information and support.

Likewise GPs in primary care need to support our Carers Champions initiative.

The future

My proposal is for a common goal to run through all our partner organisations next year, ie "Cancer Awareness." Saving lives through prevention and early detection means raisng public awareness but also training of GPs in identifying symptoms and prompt referral for investigation, again a challenge for the LHB and Primary Care.

Concluding my report, I thank everyone for their continued support of the Cancer Focus Group and look forward to the future with renewed faith in statutory organisations and partnership working, because we can and are….making a difference!"

Sally as Vice chair thanked Diane for her hard work in making the projects happen.

Matters of concern for the group included the closure of Cancer Care Cymru and the funding for Macmillan Benefits advisers which the group will be persuing further.

Cancer Focus Groups

Introduction

Cancer Standards were introduced by the Welsh Assembly in 2005 with the promise that they would be implemented by March 2009...........not long to go!

Our community cancer conference and launch of our Charter of Rights in 2008 identified shortfalls in implementation of the standards in RCT by the agreed timescales. The Health, Social Care and Wellbeing Partnership's 2008-2011 Strategy also showed little support for people affected by cancer.

We started up the Cancer Focus Group in RCT to empower cancer patients and carers to have their say and work with health professionals to implement the standards and improve cancer services. The group is open to all cancer and carer groups and we aim to involve and engage as many cancer service users as possible, to identify shortfalls in information and services and work towards finding solutions. The group is facilitated by Interlink and reports to RCT's Health, Social Care and Wellbeing Partnership.

Information needs and Carers were the first to be addressed and Cancer Information and Cancer Carers’ sub groups were set up.

Achievements:

Information
The group includes patients, carers, support officers in Velindre, Royal Glamorgan and Prince Charles Hospitals, the Princess Royal Trust for Carers and advised by Macmillan, Breast Cancer Care Cymru, and Carers UK.

The Cancer Standards 2005 introduced patient centred care with cancer patients and carers being promised "support and all the information they require regarding the diagnosis, treatment options and treatment care plan." We found information supplied was patchy, inconsistent and sometimes non-existent.

We are now working with the Cabinet Minister for Health and Adult services in RCT, Councillor Mike Forey, and Macmillan to pioneer cancer and carer information in libraries. Information on prevention and early detection, an understanding of cancer, what care you can expect if you are diagnosed and information for carers, should be available in 2009.
We are working with Cwm Taff's Cancer Strategy Group to provide patient and carer information packs on diagnosis, complying with the Cancer Standards.

Carers
November 2008: We held a Cancer Carers Workshop (see carers section for report) to identify the needs of carers and engage with healthcare providers to improve services and enable carers to continue their invaluable work supporting loved ones through difficult times while also looking after their own health .

January 2009: we held a feedback session.

Since that time RCT have now launched into a new Carers' Strategy with a carers' workshop which identified the need for representation by all carer groups and the first Carers Strategy Group met in February 2009.

I am very proud that we have achieved so much since our focus groups were set up in April 2008. We have succeeded in setting up a mechanisms to enable people affected by cancer to have their say in improving cancer services.

I am also grateful to the Trustees and members of RBF, the members of the Cancer Focus Groups and Sub Groups, our supporters and members of the public who have given of their time to attend meetings, organise events, promote events, support or fundraise for us, it would not have happened without you.

Diane Raybould