Dorthy Thomas, Irish Cancer Society
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Dorthy Thomas, Irish Cancer Society
- 2. Overview The affiliation programme is a network of more than 40 community based cancer support centres and services that have come together under the umbrella of the Irish Cancer Society.
- 3. Aim of the project • Improve the quality of life and psychosocial well- being of people in Ireland who have or who have been affected by cancer directly or indirectly. • Heighten awareness of the efficacy of psycho- social support for people affected by cancer. • Broaden access to and utilisation of psycho-social support services across Irish society.
- 10. • Training • Grants • Networking • National statistics and trends • Meaningful Evaluation
- 11. Conditions for Affiliation • CHY number • Policies on confidentiality, data protection and complaints • Signed up to the Governance Code & Guiding Principles of Fundraising • Have a clear mission and vision/values statement • Have a strategic plan/ plan of activity/business plan
- 12. • Attend a minimum of two affiliates’ meetings per year and the National Conference for Cancer Survivorship • Show that volunteers & staff are trained/qualified for their roles • Be able to send and receive emails
- 15. THE BACKGROUND STORY…. 2008 The story began 2009 The house was purchased Sept 3rd 2010 we opened our doors, initially for 2 days a week Currently we are open Monday-Thursday in Tralee and we have an outreach service in Killarney 2 days a month.
- 17. It is the Mission Statement of Recovery Haven to deliver caring and therapeutic services to those who have experienced cancer, their families and carers, in a tranquil and relaxing environment and to the highest standards
- 23. HOW DO WE MAKE IT WORK? Currently we have staff of 1.75 WTE (Manager/Nurse and administer) Over 100 volunteers (listeners, complementary therapists, gardeners, cleaners, fundraisers, board of Directors) Professional counsellors and group facilitators CE Scheme reception staff. Grant from ICS for Counselling services No other state funding!
- 26. WHAT ARE OUR OBLIGATIONS? Most importantly to our service users to ensure we provide a high standard of supportive care, our volunteers that we provide a safe environment & our community that we are delivering the best service in the most appropriate and cost effective way. We train all our volunteers listeners within our service and through the ICS and other bodies We offer training and on-going support to our complementary therapists and all volunteers. Supervision to our counsellors and group facilitators Affiliation requirements to the ICS Charities Act 2009 which leads to conforming with requirements of Charity regulator, Companies Registration Office and Revenue. National Volunteers guidelines including recruiting, interviewing and Garda vetting of all volunteers Children First Health and Safety HSE & local government requirements (fire safety, disability etc)
- 27. DECLARATION OF GOOD PRACTICE
- 28. BEFORE AFFILIATION…. ‘Paddling your own canoe’ ‘No yardstick to measure your centre against’ DURING AFFILIATION..... ‘Suspicion initially, what would we lose’ ‘Worried that the I.C.S. would come in and take over what we had’ ‘Glad we had the courage to move with it’
- 29. WHAT HAS THE AFFILIATION PROGRAMME BROUGHT TO RECOVERY HAVEN Personally you can be isolated in your role within a voluntary/ charity sector so having support is vital In today’s world policies and procedures are the framework for your organisation Advance Standards within cancer support services Communication Public Confidence The power of collective collaboration Provides a base and focus
- 30. DRAWBACKS…. Paperwork Good ideas and progress may appear be hampered within the system. Some worry about losing what is unique to each centre. Confusion between us and the ICS. When Society events are run locally the communities often think the support centre get the funds.
- 31. WE HAVE A DUTY OF CARE ….
- 32. THE FUTURE… Continue to work together Recognition at a national level for the Cancer Support Centres Await the NCCP report
- 34. Psychology of Affiliation • Guidance and support • Shared learning through experience • Strength in unity • Knowing the anchor of good practice • Move from the individual to the collective • A sense of belonging
- 35. Technical Steps to Affiliation Concept • Affiliation as a concept • Affiliation as a process Design • Research • Consultation • Resources, e.g. Guidelines, quality standard, manuals, workshop Implementation • Communication • Training Programme • On going consultation and refinement
- 36. Learning..if we were starting over • Tune into and encourage expectations • Enliven early engagement • Work from a point of appreciation and positive energy • Create a groundswell • Communication – constant flow • Allow time to work its magic
Editor's Notes
- In 2006 the National Cancer Forum published A Strategy for Cancer Control in Ireland. This strategy made a number of observations and recommendations about how to improve cancer services in Ireland. It discussed things like diagnostics and treatment and also the psycho-social care of cancer patients. The strategy observed that the vast majority of the work being done in the field of psycho-social care was taking place in the voluntary sector where people in communities felt the need for a cancer support service and so created one. They also observed that the quality of service being provided depended on who was leading the organisation. They recommended that that Irish Cancer Society become the umbrella body for all these groups and services and develop a code of practice.
- The Society was not actually in the business of providing community based cancer support and although we had relationships with many organisations around the country, we weren’t too sure how they would feel about the Society providing them with a code of practice. So we took an action research approach and we went out and asked them. We said, here is what the National Cancer Forum has said… what do you think about it? Is it a good idea? And if so, what should it look like?
- Overwhelmingly, people said that they thought it was a really good idea, particularly in the absence of legislation around counselling and complementary therapies.
- What they wanted the Society to do was promote them. To medical professionals, to patients and their families and to the public at large. In principle this was something we were happy to do, however, we needed to agree on what exactly we would stand over…
- So, we invited representation from every discipline we could think of to form a steering committee and came up with 4 guiding principles. They were – Equity, Governance, Service and Confidentiality. At this stage, it was agreed that every group that signed up to these four principles would be “Affiliated”. When they signed up we asked them how they were doing in these areas and they let us know where they have everything complete and available for review, the things they had in hand and the things they needed help with. We then set about drafting the guidelines.
- We knew that the expertise was in the network, but there was a bit of concern about how we’d pull it all together and into a shape that made sense. So, we met with a few people and settled on a consultancy service called Eustace Patterson that had helped the Family Support Network develop their guidelines. We then set about developing the guidelines. Anne and Ann put the framework together and then we workshopped the chapters all around the country. We met in Cork, Sligo and Dublin and invited everyone along and spent a full day going through the documents line by line and worked hard to get consensus on the content. Once we got that right, we had the guidelines printed and sent them out to everyone… and then the phone started ringing. People were saying that they didn’t feel they were living up to the standards as well as they should or could. And what we needed was a training programme.
- The first training that we developed was actually a programme called “Core Skills for Volunteering in a Cancer Support Centre”. It’s a basic training package that runs over four days and attempts to introduce the volunteer to as many of the elements of the work as possible. It has been really very successful and more than 400 people have completed this programme to date. We also have introduced training in the areas of Governance and Management as well as specific Train the Trainer packages for programmes that the Society has piloted and rolled out. In order to remove as many barriers to participation as possible, each organisation that is affiliated is awarded an annual grant for travel. The Society then provides grants for proven programmes such as professional counselling, a physical activity programme, a psycho-educational programme for men with prostate cancer and for people who have been diagnosed with a secondary cancer. We undertook an evaluation led by DCU School of Nursing near the end of the first programme of affiliation. We were able to see where the programme’s strengths were and also what we could improve on.
- Around the same time, we were being advised that the new charities regulator was about to be appointed and there were some key areas that this office would be looking at which were covered by the governance code and the guiding principles of fundraising.
- Recovery Haven was a long time in the making. When the breast cancer services were closed in Kerry and transferred to Cork, Marian Barnes (Breast Care Nurse) and a group of like minded people came together 2008-2009. A committee was formed, money was gathered and in 2009 the house which was previously Enable Ireland was purchased. Work began mainly using the Ballymacelligott Employment scheme and in Sept 2010 Recovery Haven opened its doors.
- While the building works were going on the Board of Directors were very conscious that we would have policies and procedure documents guiding our work. Our listeners undertook a 22 hour training programme which is based on listening skills. Where possible they also do the core skills for volunteers with the ICS . Our founding document was our ‘Guiding Principles and policy and procedure document’
- As the affiliation programme was in place RH used its guidelines for the beginning. The guides for cancer support services was an excellent platform from which to launch.
- As well as the day to day drop-in support services.
- With the affiliation process you sign up, commit and this is a positive driving force.
- We have a duty of care to our service users and also our volunteers and staff.
- Hello, I am Anne Eustace, one part of the partnership, Ann Clarke and Anne Eustace of Eustace Patterson Ltd. Our role was technical support and facilitation of the affiliation support, working alongside Dorothy and the support services affiliated. We brought independence and technical support to the ICS in the design, development, implementation and ongoing review and refinement of the Affiliation Process and its component parts. My role here today is to share the learning with you of the technical aspects. This includes the psychology of affiliation, the learning from the process and the challenges encountered along the way.
- The psychology of affiliation centres on the sense of value and belonging that we receive from sharing, learning and working together. The affiliation process and programme offered and continues to offer Cancer Support Service: A forum for networking and opening up of ideas A safe space for sharing challenges and concerns Over time and with the support from Dorothy and the refined programme of support and development affiliation offers: Training programme – interactive learning through experience and sharing real life stories Guidelines Insights into good practice Standards to work with A shift from the individual (organisation) to a collective (national)
- Within our role as technical support to Dorothy and the ICS, there are a number of sequential steps and building blocks. These commenced with the concept of affiliation, what is it and why bother – what is the draw? Networks and affiliated structures are one natural way for separate and independent organisations to come together in some form of unison that allows them enjoy their independence alongside the benefits of belonging to greater structure. In tune with good practice this ‘greater structure’ must offer guidance and stretch the organisations to grow and see beyond their current horizons. There must be appreciation, gravitas and benefits (known and unknown) from affiliation. In turn the greater structure must guard through set values, standards, protocols and procedures. The sum becomes greater than the parts. The process of affiliation involves movement and growth and continuous refinement – this is at times organic and yet is also driven by pressures and requirements, international good practice, policy, politics, organisational expression, etc. The steps we engaged in were: Desk research – tuning into current international best practice Consultation – drafts, workshops, feedback, etc. Design of resources – good practice guidelines, governance workshops, ethical workshops, interactive learning approach Communication Delivery of training programmes – across the regions – built around real life case stories and scenarios.