|
Hi everyone, my name is Diane Raybould, I’m the new kid on the block. I represent carers of people with cancer. As part of a joint venture with the Carer’s Support Project we held a workshop in November 2008, followed up by a feedback session in January, 2009.
(photo of workshop in report below). Issues identified in the workshop led us to RCT Carers’ Strategy 2004 -2009, which it has now been recognised was never jointly implemented. Carers needs for: information, support and knowledge of their right to a Carers Assessment went unrecognised in GP surgeries and on Hospital Discharge. Following on from the workshops, RCT look to a new Strategy. 1. I attended the first Strategy meeting in Heddfan with carers from various groups on 21st Jan 09.
The past frustration and disappointment of carers was unmistakable. I was upset that identification of carers was not seen as a priority because existing carers feared that any crucial support services being received to help them continue caring may be reduced or withdrawn to provide services for carers yet to be found. I hadn’t even considered that a possibility.
The lack of recognition, respect and value attached to the caring role by decision makers across health and social care was voiced. This illustrated the lack of a joined up action plan for the last Carers Strategy 2004 – 2009.
Disappointment was felt at the lack of feedback and acknowledgement from previous involvement. It was believed that feedback was crucial to acknowledge and value carers’ time, difficulties and commitment, to attending meetings and informing other carers.
There was recognition that the needs of all carer groups should be represented and systems should be put in place to engage and inform all carers of progress. Expenses should be paid for meetings and training should be provided to help carers’ voices be heard.
The role of Carers’ Champions with our Health and Social Care providers needed to be clarified, together with their accountability to the Carers they represent. There were many unsung carer champions at that meeting, but their voices had gone unheard and their suggestions unsupported.
2. Carers Strategy (2009 -2012)? Meeting, 5th February
How could I have expected anything else? Strategies, Legislation, Mapping, future Carers’ and Officers’ workshops and then a steering group, just how long is this going to take? There is no duty on partner organisations to do anything and no duty on the Council to provide benefits advice, there is limited resources……I thought about how many more barriers they could put our way. I felt weighed down and disappointed, not a single action proposed. Why can’t we just have an action plan I thought? I already knew the 2004 Strategy was only implemented by the Council and not its partners, would this Strategy be any different. I knew this view was reflected by many other carers. The next meeting of this group is 7th May.
3. In the meantime, having set up a Cancer Focus Group in RCT, we then set up a Cancer Carers Sub Group with the Carers Support Project.
Our joint achievements so far include: a. Our Patient representative on the Local Health Board is now taking GP Champions forward on behalf of all carers. b. We are pursuing a Carers Hospital Charter in Cwm Taff, (draft attached) recognising a carers right to be involved in the care of their loved ones while in hospital and information on their right to an assessment and support services which we hope all carers will support. c. Our Carers’ Champion on RCT Council, Michael Forey has supported our workshops and is working with us to progress information needs, as is Macmillan and patient support officers in Velindre, Royal Glamorgan & Merthyr. d. We are working on a pilot scheme for information packs to be made available for cancer carers on diagnosis in hospitals, GP surgeries and from libraries. If successful, this can form the basis for information packs for other carers groups.
I am proud of our achievements and of all those dedicated people who have helped us. We have worked long and hard for these achievements with no pay, but I believe we are making friends and influencing more and more people, let the force be with us! 4. Carers UK training days March 3rd & 4th
What a breath of fresh air. We worked together and in groups, encouraging and supporting each other and producing 3 wonderful presentations at the end of the 2nd day.
There were many issues identified but our voted priorities were: the need for information, for training, and for knowledge of the structures and personnel set up to provide support and involvement for carers, eg with Carer Champions in organisations.
The three presentations have been written up by a member of the training group and it is our intention to present it to as many Carers, Carers Champions and organisations providing carer support as possible. We hope they will share in our frustrations and feel our despair, and then realise how crucial a days respite here, or a listening ear there is to just survive. Do the care providers really know what it is like to give up their job, their social life, their health, their home to watch their loved one die without their needs ever been identified..……I do and so do others. “A life of their own” can seem very far away from reality.
5. And a final statistic
I attended a much needed pamper day on March 11th. I met some very dedicated people and was moved by their experiences. I asked the following questions of 40 people, a. How many carers have heard of a carer champion…..none = 0% b. How many people know what their rights are………..none= 0% c. How many people have had an assessment? 2 = 5%
Pretty damning wouldn’t you say? I think for all the dedication, the emotional and mental trauma and stress and the physical burdens carried, CARERS DESERVE MORE.
I hope to use Carers News to keep you informed about what is happening and give you feedback from the meetings going on. We encourage you to contact RCT Carers Support Project for further information or if you want to get involved. Freephone Carersline Tel 0808 100 1801 or e.mail
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
If you want to contact me my details are: Diane Raybould, tel: 01443 683220 e.mail:
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
|
