There have been many significant and emotional times when people living with cancers have shared their experiences and made a profound impact on services and professional practice in Scotland.
And, whilst taking on this kind of responsibility can be difficult whilst coping with the burden of illness and prolonged treatments, it is important for all members of the Cancer Experience Panel (CEP) and other active patient/user groups to understand how vital their role has become in producing better services.
Within the structure of Macmillan’s Transforming Care After Treatment programme, the CEP has a clear authority and a share of the decision making. For example, they had 50% of the ‘votes’ that decided on the allocation of TCAT funding to projects.
However there is still more which the CEP and all other patient/service user groups can do.
Firstly, an individual level and all the people they support, they should ensure everyone diagnosed with cancer or treated for cancer gets a written care plans or access to a holistic needs assessments.
Written Care Plans featured strongly in the Scotland’s first Cancer Patient Experience Survey (CPES). Only 22 % of the patients surveyed had one, but they reported double the satisfaction with services than those who didn’t.
Care plans can form the basis for person centred treatment and care. They can also provide key evidence of the needs of people with cancer across local populations and communities.
The way Holistic Needs Assessments (HNA) are carried out is also important. If HNAs are patient led and the patient sets the agenda they are more likely to lead to better outcomes. Non-clinical needs are underestimated by NHS staff, and clinical issues are often underrepresented in assessments carried out by other workers and volunteers.
Secondly, at the service level of agencies and professionals, members of the CEP and other patient/user experience groups should use every opportunity to take up roles as representatives on steering groups and decision making bodies including wider strategic planning and commissioning bodies.
Apart from scrutinising results from TCAT and other reforms to see if all the concerns of people with cancer are addressed, the CEP can see if the different health and social care services are joined up and provide co-ordinated, well timed care and support.
Cancer representation on the wider strategic planning systems for health and social care is poor.
There are 31 new integrated joint boards – partnerships which have a statutory duty to produce plans and annual performance reports. These bodies have strategic planning groups and cancer hardly features in their membership or published plans. And whilst the work of the TCAT programme has made a wee dent in this profile, it would be great if the CEP were able to take their place at the table.
Finally, at a political level the CEP and its members in networks and projects should use the available evidence of performance to hold bodies such as the Scottish Government, the NHS, the new integrated health and care joint boards and other key partners to account for progress in service improvement.
The CEP needs to be able to present their own independent view on the progress being made towards Scottish Government’s Cancer Plan: ‘Beating Cancer, An Action and Ambition’. The Cancer Task Force, as part of the national plan’s implementation, should invite and support the CEP and other groups to take on this role.
We are currently in the best and worst time to reform Scottish public services and to improve life for people with cancer.
It is the best time because we have clarity about what needs to be done, in terms of strategy, research, and outcomes. But it’s the worst time because we have the coldest financial climate in three decades. And the highest levels of demand on health and social care.
There is a strength of purpose in facing these difficulties. We need to make sure that people with cancer and their carers feel confident about influencing the treatment and care they need.
Bill Clark, Adviser on Social Care for Macmillan Cancer Support
The above post is the edit of a speech made by Bill at the Cancer Patient Experience Conference in November 2016.
Bill has worked with Macmillan Cancer Support as an adviser for seven years, helping Macmillan and their partners find solutions to the social care issues facing people living with cancer. He has supported programmes such as Transforming Care After Treatment and Improving the Cancer Journey (ICJ). He has also worked with members of the Cancer Experience Panel (CEP) and other people living with cancer and their carers to help improve services.