Friday 7th September 2012
Patients and carers have their say at a successful partnership working day – Kathy Blythe and Ruth Wilson explain.
Skegness is a remote town in Lincolnshire where people with cancer can travel up to 81 miles for treatment.
The Macmillan Mobile Information and Support Service (MISS) has visited the town on various occasions and people affected by cancer have spoken about the significant challenges in accessing support in this remote area.
In March, a group of Macmillan professionals and staff invited local people to an event to work out what Skegness needed to help people living with and beyond cancer. The aim was to find out what the experience of cancer is if you live in this remote area, to offer examples of support, and to use the feedback to plan services.
Thirty-seven people attended the day and it was very successful. It began with a facilitated table discussion about everyone’s experiences. Facilitators then fed back one key message from each table.
- The key worker role is essential for people to know who to turn to.
- Support for the carer is vital so they can support the person with cancer.
- Information at every stage is essential
- delays in getting information cause distress.
- Communication at discharge and with primary care was a challenge and needed ‘to be pulled together’.
The discussion was followed by a group activity session and a selection of workshops including a carers discussion, relaxation, building confidence and positive thinking, walking and healthy eating. After lunch, the participants could visit a variety of stalls to get information and support.
Boots gave make-overs and information about local Look Good...Feel Better sessions was given out. The MISS bus was parked outside and local Macmillan information services provided support on a variety of issues.
People could also access benefits advice, support from the parish nursing team, lymphoedema services, and try out craft and design.
Some participants talked to Macmillan staff about self-help and support. We got together for a final discussion at the end of the day. We asked participants what they had experienced today and what help and support would have helped them, when they
needed this support, and where the support should be available.
• What – faster referral into the system; proactive professionally-led face-to-face support; joined up working and communication by everyone involved in my care; more information and support locally and in primary care; more events like today or health and well-being clinics, self-help/peer support early on; satellite centres for treatment; and local transport systems.
• When – at every stage, all the time, including long-term follow-up and support.
• Where – locally but not necessarily formal, eg by phone.
Evaluations were positive and we now have a wealth of information that is current, relevant and meaningful, which will assist us in planning services for the future.
Email Kathy Blythe Macmillan Development Manager, Lincolnshire
Email Ruth Wilson Macmillan Involvement Coordinator