When we don’t talk about death, we stop talking about life
Written by: Alan Ainsley
Recent years have seen improvements in numbers of people living full and active lives after being treated for cancer.
The graph in the image gallery below shows these improvements for some specific cancers, but with all cancers included, there is a marked improvement in survival rates up to 2007 and with technology continuing to improve since then, these rates are likely to have continued to improve.
With more and more people living long lives after cancer, there is a need to understand the needs of this group and for services to adapt to this area of emerging need.
The Transforming Care After Treatment programme is one response to this. £5 million of funding for new projects has been provided by Macmillan since 2014 and a multi-agency group consisting of Scottish Government, Health, Local Authority and Third sector representatives is directing the programme – the TCAT Board. The TCAT Programme will come to an end in 2018, having tested and evaluated models of change across the country, each one aimed at improving support and care for people after their initial cancer treatment ends.
Twenty five projects have been funded across Scotland. Some of them aimed to streamline health services in ways that make life easier for patients, some looked to find out more about the wider needs of patients once their treatment is over and others addressed specific needs such as employment and cognitive rehabilitation. All of the projects aim to support people with any issues they may have as a result of their cancer, or with the treatment they have received for it.
But there is a group not mentioned above, who are key to the TCAT programme and whose experience has helped shape things throughout its duration. These are the people who themselves have direct experience of cancer, whether as patients or as carers.
The Programme Board asked to be held to account by the people who will be using the services it develops and a user group was developed under the TCAT banner – The Cancer Experience Panel. They have already shared responsibility for deciding which projects get funded through the programme. Their involvement is one of the elements that makes the TCAT programme different. There is an ethos that makes it clear the people who know most about the needs of those living with the long term consequences of cancer are the people who have been through it themselves.
That ethos has been a key thread throughout the TCAT projects, as well as at a strategic level. The projects involved people with direct experience of cancer in their development and decision-making.
Involving people in the management – as well as the design and development – of services aimed specifically at them is not a new idea but it is less common to find a programme where the impact and practical implementation of these ideas is so clearly translated into reality.
Over the next twelve months, TCAT, now in its final stages, will work to ensure others benefit from this strong legacy.
Written by: Alan Ainsley