Living Well

No matter if you’re waiting for diagnosis, you’ve had a recent stay in hospital or you’re flaring; receiving care that gives you the information, skills and confidence to manage your Crohn’s or Colitis, according to your own preferences and needs, is fundamental. This is often described as personalised or person-centred care by the NHS.

 

Living well: why personalised care and support matters

Based on feedback from patients, doctors and nurses we understand that people with Crohn’s or Colitis don’t always consistently receive care and support in the way they would prefer.

To address this Crohn’s & Colitis UK, in collaboration with doctors, nurses and patients, are working to ensure that person-centred or personalised care is embedded in IBD Services across the UK enabling you to have choice and control over your care, and the information and support you need to empower you to live as well as possible with your condition.

What is personalised Crohn’s and Colitis care?

Personalised care for people living with Crohn’s and Colitis is:

  • Personal: It focuses on what matters to you, rather than what’s the matter with you.
  • Holistic: It recognises that you are more than just a diagnosis, and instead addresses your physical, emotional well-being and social care needs together as one. 
  • Involves shared decision making: It involves you in decisions about your care. For example, in decisions about medications or surgical interventions.
  • Supports self-management: It empowers you to take an active role in your care by giving you the information, skills and confidence to self-manage and live as well as possible.
  • Equal: It treats you as an equal or partner in decisions about your care, not doing things to you but with you.
  • Co-ordinated: It delivers good joined-up care, where information and decisions are shared in a timely manner and include everyone involved in your care.

Personalised care is changing the way in which the NHS cares for people and this will mean that the traditional ways in which patients, doctors and nurses behave, act and communicate with each other will gradually change too.

What is Crohn’s & Colitis UK doing to help make personalised care an everyday reality?

We are championing more person-centred or personalised care approaches through:

  • Promoting what good IBD care looks like to doctors and nurses across the NHS in the form of the IBD Standards 2019.
  • Creating tools and resources that can help, such as our new Appointments Guide.
  • Investing in research into new and innovative ways of treating symptoms such as fatigue and pain.
  • Gathering data on the quality of care across the NHS to understand what is being done well and highlight areas that may need improving.
  • Launching the UK-wide findings of the IBD UK Benchmarking Tool in February 2021, following the launch of local reports in March 2020.
  • Working with IBD services and people with Crohn’s and Colitis across the UK to support and deliver a programme of activities to improve care.
  • Working with policy makers and decision makers to raise awareness of Crohn’s and Colitis and the IBD Standards to inform decisions that affect your care.
  • Producing information resources and providing a confidential helpline to provide clear, accurate and balanced information on Crohn’s and Colitis.
  • Offering peer support through our helpline and online social networks such as Facebook and Instagram.
  • Our Local Networks offer opportunities to meet others (peer support) and attend education and information events in local communities. Please note that the current Covid-19 pandemic has affected our Local Network activities, so please check the page for the latest opportunities.

What can you do?

  • Prepare for your consultation, whether face to face, by telephone or virtually by using our Appointments Guide and share this with your IBD Team
  • Try to have an open and honest conversation with you IBD team:
    • Be clear about your needs
    • Don’t be afraid to ask questions about what matters to you or to ask for the doctor to explain something in more detail
  •  Make the most of education opportunities offered by your hospital. Read up on the latest developments and research on our website.
  • Join our Patient Voices Network. The network is formed of people living with Crohn’s or Colitis (patients) across the UK who share their experience to help shape IBD services and improve IBD care.
  • Help us raise money to fund more of this vital work.

If you would like to know more about or have questions about person-centred or personalised care please email policy@crohnsandcolitis.org.uk