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

Important notice: Please be aware that some of the activities mentioned below will have been paused due to Coronavirus pandemic

Based on feedback from patients, doctors and nurses we understand that people with Crohn’s or Colitis don’t always consistently receive the personalised care 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 Personalised Care is embedded across the NHS, enabling you to have choice and control over your care, and the information and support 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. For example, through regular education days, information packs or hospital open days. It should also support you to identify and be able to act when you spot the signs of a flare-up beginning.
  • 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. For example, copying everyone involved in your care into medical letters and having one written Personalised Care and Support Plan that everyone follows.

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 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 patients, doctors and nurses deliver Personalised Care. Crohn’s & Colitis UK is currently developing a flare card, Holistic Needs Assessment and Personalised Care planning template for IBD.
  • 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 areas we can do better, like supporting people with well-being needs. We are planning to launch the findings of the UK Patient Survey and Benchmarking results, and will be working with IBD services and people with Crohn’s and Colitis across the UK to deliver a programme of activities to improve care.
  • Producing information resources and providing a confidential helpline to provide clear, accurate and balanced information on Crohn’s and Colitis.
  • Running education programmes, supported by IBD nurse specialists and doctors, delivering learning opportunities for people living with Crohn’s or Colitis across the UK, on a range of topics.
  • Offering peer support through our helpline and online social networks such as Facebook and Instagram and events such as Walk It.
  • Our Local Networks offer opportunities to meet others (peer support) and attend education and information events in local communities.

How can you get involved?

  • 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.
  • Make sure to complete the UK IBD Patient Survey every two years.
  • If you work in the NHS make sure to routinely signpost patients to Crohn’s & Colitis UK’s resources, information and services.
  • Help us raise money to fund more of this vital work.

What should you do if you don’t feel you’re receiving personalised care:

  • 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 or Crohn’s & Colitis UK. Read up on the latest developments and research at our website.
  • Contact your local Patient Panel, if you have one, and talk to them about them about your concerns with Personalised Care. Although they will not be able to help in individual cases, they can raise issues with the IBD team more generally.
  • For support in raising complaints within the NHS contact your local:

If you would like to discuss or have questions about anything on Personalised Care please email healthdev@crohnsandcolitis.org.uk