Information and support is at hand
Cancer rates are rising every year, devastating people’s physical and mental health. But there is support out there, as Macmillan explains...
There are 130,000 people living with and beyond cancer today – and by 2030 this number is expected to nearly double to 250,000.
Cancer can affect the whole of a person’s life. It can have a physical and emotional impact, as well as affecting finances, selfimage and relationships.
The consequences of a cancer diagnosis may be felt long after treatment has finished.
There are more than 200 different types of cancer. The treatment a person is offered (surgery, chemotherapy, radiotherapy, gene therapy are just a few options) depends on the type of cancer, how big the tumour is, how far it has spread, possible sideeffects, patient preference and overall health. Sometimes the stark choice may be whether to choose to proceed with treatment or not. There is no right or wrong way to feel about a cancer diagnosis. Some people are upset, shocked or anxious, while others feel anger, guilt or a sense of isolation.
Yet it is at this highly charged time that a person with a cancer diagnosis may need to make life-affecting decisions about their individual treatment. At Macmillan, we think that people affected by cancer should be supported to make informed decisions about their treatment and care, as well as – crucially – being able to access information and support about the non-medical aspects of their cancer and treatments.
How do we help people access the information they need, in a format they want, in a time that they choose?
Unsurprisingly, there is no “onesize-fits-all” solution. Information about the complex needs of living with and beyond a cancer diagnosis should be available in different formats, on different channels and relevant to different points of a cancer journey.
The information needs to be accurate, consistent and adhere to content-related quality standards.
Sarah Russell-Saw is the Macmillan Cancer information and support service co-ordinator in the Hwyel Dda University Health Board area.
Speaking about the service, Sarah said: “We’re about person-centred care and making sure that people can make decisions that are right for them.
“It’s really important that people feel comfortable to ask questions about what matters to them.”
Sarah believes that the barriers to accessing high-quality information are exacerbated in this largely rural area which also has an increasingly ageing population.
Sarah describes people affected by cancer and seeking information and support as falling into two main camps.
“If you are computer literate and you find out information you are almost swamped by too much information.
“Then it’s about drilling down and trying to find that information that is appropriate to you from a trustworthy source.
“Obviously we can help. All the information that Macmillan provides is quality standard and you can be sure that you can trust that information.
“Then there is another camp. Carmarthenshire has an elderly and a very rural population.
“For many people it will be the lack of accessible information that is the problem. So we can be part of helping them with that too.”
Since the Glangwili Cancer Information and Support Service started in June 2015 around 1,000 people have accessed the service.
Sarah is determined to grow the service, taking cancer information and support to the places where people need it most.
She said: “There are a number of ways that people can get in touch. Lots of people just phone or email us. We also visit people in wards. We try to be as proactive as possible.
“It’s not just the people with the cancer diagnosis that we help. We support carers, families and friends of those affected by cancer.”
Plans are under way to extend cancer information and support services in Carmarthenshire which Macmillan hopes to announce in the very near future.
Speaking about the importance of the service to this area, Sarah said: “Our information and support service has been described as ‘the sand
between the pebbles’, which kind of means that we are the joining up of the services.
“We operate at a very local level and can signpost people to local charities and other external support services.
“We’ve been really successful in integrating ourselves in the cancer services delivery pathway of Hywel Dda”.
Macmillan’s Cancer Information and Support Services, located in the major hospitals in Wales, are just one way of getting information.
There are other ways to access our information and support which include face-to-face, over the telephone and online advice. These include:
MOBILE INFORMATION SUPPORT SERVICES
Our buses and mobile units park up in Welsh cities and towns, as well as attending major cultural and social events such as the National Eisteddfod of Wales and the Royal Welsh Show. Last year this service reached nearly 16,000 people in Wales.
Details of our planned visits can be found on our website, www.macmillan.org.uk
LIBRARY SERVICES
We also have information and support services at some Welsh libraries. Go to the ‘In Your Area’ section of our website and pop in your postcode to find their nearest services. www.macmillan.org.uk/in-your-area/ choose-location.html
MACMILLAN WEBSITE
Provides up-to-date, regularly reviewed information about individual cancer, diagnosis, treatment and living with and beyond cancer. www.macmillan.org.uk
MACMILLAN ONLINE COMMUNITY
From dietitians to dentists, surgeons to sex therapists, this is the place to ask the questions that matter to you in our ‘Ask the Expert’ section. community.macmillan.org.uk/ cancer_experiences/ask_the_expert
Our online community has more than 100,000 members and is an incredible source of information and support offered in a supportive environment. community.macmillan.org.uk/
MACMILLAN SUPPORT LINE
Whether you’re worried about money or practical issues, have questions about treatment, or just want someone to listen, call us on 0808 808 0000, Monday to Friday, 9am-8pm.
BE.MACMILLAN
An online site to order free cancer information. We currently offer more than 25 information and support resources in the Welsh language. www.be.macmillan.org
We also produce information in formats to suit different needs including audiobooks, easy read and British Sign Language videos.