From rhetoric to reality – giving patients real control over their care

relative explaining medication to older woman

06 / 06 / 2014

Friday 6 June – 9.15am–10.15am

There is growing emphasis on healthcare professionals delivering care with patients, not to patients, but there are no specifics for how an organisation can achieve this. 

This seminar at the NHS Confederation's annual conference and exhibition 2014 explored what the NHS needs to do in practice to support and enable patients to have more control over their care.

Speakers

  • Marie Gabriel, Chair, East London NHS Foundation Trust (seminar chair)
  • Sue Sibbald, Peer Support Specialist – personality disorder
  • Aimie Chapple, Managing Director, Health and Innovation Lead, Accenture UK
  • Jeremy Taylor, Chief Executive, National Voices
  • Angela Coulter, Fellow, King's Fund

Key learning

  • Being empowered with decisions about their own care can help improve the patient's overall health and wellbeing.
  • Practitioners need to see patients as resources and work in partnership with them.
  • Technology can play a significant role in enabling patients to take control over their care.
  • The NHS needs to remove obstacles to patient-led care and enable and support patient leaders.

The presentations: main points

Marie Gabriel opened by stressing the importance of patient engagement, the improvements it has led to and how a value-based approach can help patients take control and improve care.

Engaging patients in their own care

Sue Sibbald was diagnosed with borderline personality disorder. When she was sent home by her doctor, she began to research her condition online. 

She outlined how the peer support she found from online resources such as Facebook and Twitter proved invaluable and pointed her towards dialectical behavior therapy (DBT), which she described as a crucial tool in helping her to "self-manage myself to a better me," referring to it as "peer support at its best".

Sue took the initiative and subsequently contacted her local trust where she was made part of a team that enabled her “to contribute and be heard”. Since then, Sue has written a DBT course and continued to work with the NHS on empowering patients to be part of their own care.

Sue highlighted reasons why patients are often deterred from participating and the obstacles to patient-led care that NHS organisations need to address:

  • "people in suits that make me feel inferior"
  • withholding information
  • lack of channels to feedback
  • NHS being slow on the uptake with regards to technology.

Harnessing technology to give patients control 

Aimie Chapple discussed what technology means for healthcare and its role in enabling patients to take more control over their own care.

She cited a survey conducted in nine countries which evidenced the desire for people to have more control over their own care. For example, the majority of participants did not just want access to their own health records, but wanted to keep and control them. This showed it is no longer about making data digital, but using technology to enable patients to become active participants in their own care.

Aimie showcased a number of different technologies that are helping people to check and monitor their own health as well as access care resources with little effort and cost.

She said we must continue having a dialogue with patients and the public about what they want from healthcare, what it looks like and the outcomes. 

From the patient perspective

Jeremy Taylor talked about what patient control really means, what needs to be done to achieve this, and the benefits of engaging patients in their own care.

He discussed:

  • patients as people – patients are people and need to be treated as a patient and a person.
  • patients as partners – patients should be involved as much as they want to be in discussions and decisions about their own care.
  • patients as self-managers – patients being supported to build the knowledge, skills and confidence to help them get on with their own lives.
  • patients as consumers – "understand me", "give me a choice" and a "responsive service".
  • patients as citizens – "respect my rights".

Jeremy stressed that NHS leaders need to look at what matters to patients and not focus on the system, and to help patient leaders to lead.

Patient experience

Angela Coulter, who works to help improve patient experience, began by pointing out that patients on average only spend a few hours each year with a health professional and that the rest of the year they look after themselves.

She highlighted that traditional practise styles create dependency and discourage self-care, and explained the importance of involving patients in planning their own care – being fully informed from the outset and helping to set their own goals, and agree their own care plan.

She said health professionals need to work differently, to work in partnership with patients and support them to engage in this process, as patients that are better informed and more engaged make better decisions about their lifestyle and care, which is better for the patient and helps save money for the NHS.

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