This week to highlight #cancertalk week Irene Wilson, Macmillan Cancer Information and Support Service Development Manager provides a guest blog on ‘Macmillan Cancer Information and Support Service’
“Working in partnership to change lives” states that for more than 20 years Macmillan Cancer Support have invested in Cancer Information and Support Services (CISS). It explains that Macmillan do this because research suggests good information and support can improve not only the healthcare experience, but it can also make a real difference to quality of life, which may in itself lead to faster recovery, earlier discharge from hospital and a reduced use of statutory services. Good information and support can also improve a person’s mental and physical health, enable them to manage their finances more adequately and support them to cope better with their diagnosis. Which leads us to ask the question: do you provide enough of the right kind of information and support to those affected by cancer?
At the start of #CancerTalk week we showcase the development of one Macmillan Cancer Information Support Service; as with more than 170 Macmillan supported services throughout the UK it is likely there is a service near you, and perhaps by investing in local partnerships and working together you could change the lives of those affected by cancer.
In partnership with Macmillan Cancer Support, local authorities and other voluntary sector organisations, NHS Ayrshire and Arran are developing a network of Cancer Information and Support Services. The vision of this innovative Information and Support service is to build community capacity through a shared partnership approach and provide information and support for people affected by cancer throughout Ayrshire and Arran.
In 2010 a significant consultation process established the information and support needs of local patients, carers, voluntary support groups and professionals. Scoping results and a detailed gap analysis showed that although a large number of varied resources were previously available to people affected by cancer, many patients and family members found it difficult to access appropriate support. This highlighted a continuing need for:
- Assistance with system and service navigation, and the
- Provision of focussed and appropriate information.
Consultation also revealed that libraries were seen as the hub of the community and as such they provided a valuable way of offering information to everyone. As a result a handful of local libraries were developed into service hubs.
Finally, research showed that first-hand knowledge and experiences of cancer could add value to information and support services, and so a group of volunteers were recruited and trained to help deliver the new services.
The main needs of people affected by cancer
Progress to date
Macmillan Cancer Information and Support Services are now available throughout Ayrshire with two library services (Saltcoats and Cumnock) launched between 2011- 2012 and another Boots partnership (Ayr) launched in September 2013. This later service is the first Boots Macmillan Information and Support Service in the UK and it has proved extremely successful and led to the developments of additional services such as look good feel better events, awareness sessions for pharmacy staff and increased promotion in other high street stores. A further service is planned to open in March 2014 in Boots in Irvine which will increase the support available to those in North Ayrshire.
Since 2011 these services have dealt with over 1200 enquiries and many people who have been struggling to find the appropriate help have been assisted in finding the information and support they require. The extent of the information and support provided has varied from a simple leaflet or a chat in one of the hubs, to spending time with individuals and their families when they needed support to come to terms with a cancer diagnosis.
“For us, the Macmillan service was a springboard to other sources of support. We got much more than we expected out of it and got advice from Macmillan Money Matters, and access to complementary therapies from Ayrshire Cancer Support. We started out going in for advice but we’ve made friends with the volunteers and other people like ourselves.”
“As the spouse of the person diagnosed with cancer, it has helped me understand and cope. It has provided me with advice, reassurance and hope. I have been able to express my feelings in a confidential, relaxed atmosphere.”
In short the service offers:
- a confidential support service
- time to talk
- a relaxing place to meet others affected by cancer
- access to complementary therapies*
- guided internet use
- links to support groups*
*via Ayrshire Cancer Support
Service access and processes
Whilst the number of support services available to people affected by cancer have grown, with rehabilitation courses, health and well-being events, palliative care services and interventions such as counselling, complementary therapies and financial advice being provided by various voluntary organisations and NHS healthboards, it should be remembered that some people do not require this level of support and many find that a chat with a volunteer in an information area can meet their needs.
“One of the things that I like about it is the volunteers. They are company, there’s always somebody there that understands what you’ve been through and what you’re going through. They’re always that cheery and willing to listen to whatever I want to talk about. It’s the only place I know of that does this.”
Locally a referral policy has been developed with the involvement of key stakeholders and levels of intervention agreed. Four levels of intervention ensures the appropriate and standardised handling of cases and onward referral when necessary. Cases labelled level 1-2 are handled by volunteers, and levels 3-4 are referred to project staff for further assessment (completion of a full holistic needs assessment) which helps to create a care plan.
Assessing and managing psychosocial needs has been seen as an essential component of care planning for people affected by cancer (Jacobson 2009). Psychosocial Health Care needs assessment are not seen to increase the burden on patients and have many possible benefits regarding communication and ensuring access to appropriate interventions (Howell et. al. 2009).
Model of Service
The non-clinical environment and the use of volunteers benefits the service as together they provides people affected by cancer with a familiar space, and the time and place to identify, express, prioritise and discuss the concerns that reflect the whole life impact of a diagnosis. This process is tailored and personalised and ultimately it is this which helps those affected by cancer cope with the physical, emotional and social aspects of the diagnosis.
Volunteers are not a cost free option or a replacement for paid staff as they require training and supervision; however they are central to the community approach which builds capacity and helps people affected by cancer manage their illness. Volunteer Champions, who recruit, train and support new volunteers, further sustain services.
Recruiting, training and supporting Volunteer Champions to take on responsibility for managing future service volunteers will be a key element in sustaining the service when Macmillan funding ends. Macmillan will sustain these roles providing access to a Macmillan volunteer co-ordinator providing on-going education and support essential to their role development.