Promoting patient choice through high quality, tailored information

Matthew Kennedy Macmillan cropped

Only one in five cancer patients in Wales are currently offered a written care plan. Matthew Kennedy, Macmillan Policy Officer for Wales, explains why this shared document and the information and support surrounding it are key to delivering a truly person-centred approach.

A reoccurring theme, coming from the results of the Wales Cancer Patient Experience Survey, and in further discussions with people affected by cancer and professionals is the importance of timely, high quality information. Discussions have reflected the role of information in putting patients in control of their treatment, heighten understanding and promoting coproduction.

The discussion reflected a keen desire to put patients in control of their treatment, heighten understanding and promote coproduction.

To achieve this level of empowerment, we believe that providing a person-centred care approach to meeting patients needs is vital.

Person-centred care means that the needs of the person living with cancer are always at the heart of how services are planned, not the needs of the service providers.  It means treating people with sensitivity and compassion and ensuring that their care is holistic in its planning and delivery. This care goes beyond the clinical to also address wider social, financial, emotional, practical, psychological and spiritual concerns.

There are a number of factors required in order to deliver person-centred care consistently and to a high quality.  These are:

  • active involvement of the patient in planning and understanding their care plan
  • personalised and holistic needs assessments and written care planning
  • coordinated and continuity of care
  • good communication
  • information and support
  • signposting to financial, practical and emotional support

Assessment and care planning provides an opportunity to engage with
people in decisions about their care and generate valuable information to develop a personal care plan.

A care plan should be carried out at the point of diagnosis, and again at the end of treatment or whenever health or wider needs change.  The care plan developed following the holistic needs assessment sets priorities for care, actions, timeframes and approaches needed to address the person’s needs or concerns.

A written copy of the care plan should be offered to the person affected by cancer as the care plan is ‘owned by’ and supports the individual during and after their treatment. However, the results of the Wales Cancer Patient Experience Survey suggest this is not happening consistently.  Only one in five cancer patients reported being offered a written care plan. This was a consistent message from patients across all health boards and trusts in Wales.[1].

In Wales, 19,000 (WCISU Feb 2015) people are diagnosed with cancer every year and more than 130,000 people are currently living with or beyond cancer, almost 4.5 percent of the population.  By 2030 it is expected that 250,000, almost eight percent of the Welsh population, will have been affected by a cancer diagnosis and one in two of us will be affected by cancer at some point in our lives.

RS18302_20141215_Macmillan_8481-hprWith demand increasing it continues to be important that each person diagnosed with cancer receives timely information and support to help them understand their cancer and make informed decisions about their treatment and care. This will help to deliver improved patient safety, reduce risk and support better self management.

To achieve this, improvements in a number of key areas are needed, including:

  • Ensuring people regardless of where they live in Wales, or the nature of their condition, have access to high quality information in a format which meets their needs
  • Supporting people to easily identify high quality information and drive improvements in quality
  • Ensuring the effective use of available resources by clarifying the role of services and integrating information within the care pathways – particularly in relation to support following hospital treatment [2]
  • Promoting a shift from healthcare professionals being an information provider to an information enabler, supporting people to access the information and support they need to make decisions and find their own solutions.

We believe that the shift towards providing patients with a written care plan would enable a greater amount of patients to self-manage their conditions, maintain and enhance their well-being throughout and beyond their treatment, complementing the work of their clinicians and other allied healthcare professionals.

headline-cancer-time-to-choose-2016

[1] Quality Health, January 2014 “ Wales Cancer Patient Experience Survey: National Report” – http://gov.wales/docs/dhss/publications/140117canceren.pdf (Accessed 20/08/2015)
[2] Hidden at Home, Macmillan Cancer Support (2015)
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