IQILS

Improving Quality in Liver Services

IQILS

PSC_Support_IQILS steering committee

IQILS Steering Committee at their quarterly meeting June 2019

We're delighted that the Royal College of Physicians (RCP) exemplar liver accreditation programme, Improving Quality in Liver Services (IQILS) is going from strength to strength.

Forty-one liver services across the UK are now registered on programme. This means they can access invaluable expertise and the latest guidance on improving standards and enhancing patient experience. Accreditation is achieved when the liver service demonstrates that they are meeting a series of standards where patients are at the heart of their service. A key aspect of the IQILS accreditation is involving patients in improving standards.

Martine Walmsley, Chair of Trustees, PSC Support, contributed to the development of IQILS through the pilot scheme Liver QuEST as the lead patient representative on the project, and is continuing to support the initiative to improve our liver services through her participation in the IQILS steering group.

Martine said, 'IQILS represents an important step for liver services and we must see liver services engaging and gaining accreditation. Currently there is an alarming disparity in the provision of liver services between different regions of the UK. IQILS provides a framework that not only supports the delivery of high-quality liver care but will also allow patients to make informed decisions about where to access the treatment they need. Ultimately every liver patient deserves to have access to high-quality care, regardless of their location.  I’d like to see IQILS become a mandatory accreditation.

'While we were developing the new standards, we saw first-hand hard-working teams and outstanding practices in different hospitals; it wasn't just the larger hospitals delivering excellent care. As more liver services join IQILS and develop their services, patients can only benefit.

'It’s particularly relevant to patients with rare diseases like PSC, who because of location, might be cared for at hospitals without a special interest in PSC - they need to be assured that they are getting high-quality care.'

PSC Support has worked with the RCP and the British Liver Trust to produce a fact sheet for patients about IQILS and how to get involved:

 

Improving Quality in Liver Services (IQILS)

What does it mean for patients and carers – your questions answered

IQILS Patient fact sheet

IQILS Fact Sheet for Patients

What is IQILS?

IQILS stands for Improving Quality in Liver Services. It is a new accreditation scheme for UK hospitals that care for people with liver conditions to demonstrate that they provide high-quality liver services for patients. This includes clinics and inpatient and outpatient services.

IQILS is run by the Royal College of Physicians and is supported by patient organisations, including the British Liver Trust, PSC Support and Children’s Liver Disease Foundation.

Why is IQILS important?

IQILS is important because it supports hospitals to improve the quality of their liver services and drive up standards of care for people with liver conditions across the UK.

The British Liver Trust has said ‘There is an urgent need to improve the standard of care provided by liver services across the country. The British Liver Trust hopes that the new scheme will help achieve this by measuring services to improve the care patients receive irrespective of where they live and by ensuring centres provide patient-centred care.’

How does IQILS work?

Liver services across the UK are registering to work towards IQILS accreditation. To be accredited, they must meet high standards of care. These standards have been developed with patients to ensure that accredited liver services are truly meeting patients’ needs.

The IQILS scheme ensures that each hospital service measures the different elements of the service that they are providing so that they can see how they are doing compared with others. It enables them to share knowledge and resources and embed what works into their daily practice.

What will IQILS mean for me?

If your liver clinic is accredited it means that your hospital meets the rigorous IQILS standards and has demonstrated that it is delivering high quality care. This accreditation is not a one-off badge; your hospital must be inspected by the independent IQILS team and its processes scrutinised closely. For the next 5 years this will take the form of a remote assessment and then in year five a full inspection will take place again.

If your liver clinic is working towards IQILS accreditation, it means that there is a commitment from your hospital and the liver team to provide a high level of service. It is a new scheme so don’t worry if your service is not yet accredited. However, if your hospital is not working towards accreditation, ask them why not and if they intend to sign up.

How will IQILS improve services?

A liver clinic that is accredited has met certain standards including that there is adequate training in place for staff, you can get in touch with your liver clinic when you need to, you are clear about your treatment and options, you are treated with dignity and respect, and your liver clinic is listening to you and trying to meet your needs.

The IQILS goal is to improve your safety and the quality of care that you receive.

How will I know if my service is involved?

The full list of services accredited or working towards accreditation is on the IQILS website www.iqils.org.

How can I get involved?

It is important for your liver service to understand what their service users think about their services and what needs improving. What could they do better? What’s missing? Equally, it is important for the liver services to work with their service users to design and consider how to make those improvements. If your liver service is working towards accreditation, they want to hear from you! If you’d like to get involved in helping drive these improvements, do get in touch with your liver service and offer your assistance and support. We urge you to congratulate them on being among the first services to work towards IQILS!

If your liver service is not listed, ask your consultant or member of the team why they are not yet involved. If you think it is important that they are, you should make this known. Offer your support and assistance.

History

Jan 2016 - Liver QuEST

The Liver Quality Enhancement Service Tool (QuEST) aims to support hospital teams working in Liver Services to improve service quality, care and safety for patients accessing and undergoing treatment for liver disease. In order to achieve Liver Quest accreditation, the Liver Services are expected to have demonstrated that they are working to a series of standards where patients at the heart of their service.

The draft Standards are organised into five Domains:

  • Leadership, Organisation and Delivery
  • Clinical Quality
  • Patient Experience
  • Integrated Care
  • Workforce and Training

Martine Walmsley, Chair of Trustees at PSC Support and a PSC patient herself, is providing patient representation for liver disease patients in the development of the LiverQuest process. As part of an assessment team, Martine has been carrying out accreditation assessments in hospitals that have volunteered to be part of the LiverQuest development process. Martine in particular looks at patient engagement and involvement in the Liver Service and each assessment includes reviewing the Liver Service's website, reviewing patient information and materials (eg leaflets), interviewing patients, reviewing hospital-sought patient feedback and actions taken, and considering respect and dignity from the patient perspective, shared decision-making, conducting a site visit and, of course writing a report about the Liver Service and reporting back on the accreditation process itself and suggesting ways to improve it before it goes live.

Martine Walmsley commented, 'Personal experience and close reading of the 2014 Lancet Commission report confirm that liver services in the UK are patchy and inconsistent at best. Not all patients are able to access quality information and care close to home resulting delays in diagnosis, misdiagnosis, ineffective monitoring and symptom management, missed opportunities for intervention/inappropriate intervention, and even for the sickest patients, delayed referral for liver transplant assessment (meaning they are too ill to have a transplant). I am proud to be part of the Liver QuEST development team. As a patient myself, I look at a Liver Service through different eyes to the clinical members of the accreditation team. In developing the standards, I am able to highlight areas for more focus or attention, because they are important to patients. There is a real emphasis on 'what patients want' when thinking about what a Liver QuEST-accredited Liver Service should look like. It's taking a long time and a great deal of effort, but I think worth it if we can develop a process for accreditation that realistically allows Liver Services to develop and improve in ways that help patients.'

'Ideally, accreditation means patients can be confident that medical teams are well-trained, up to date, working as safely as possible and their staff know what they are doing, or have access to strong networks of expertise (especially important for the rare liver diseases). Furthermore, accreditation means that liver services will deliver the care patients want and need, and will be developing their services with patients, side by side. We know some liver centres already do deliver a world class service and LiverQuest is an exciting opportunity to see this best practice truly shared and allow the liver community to begin to address the vast inconsistencies in care and standards across the UK.'

Take control

Understand your medical care and what to expect

Want to know more?

Receive regular info, tips and news on all things PSC

I want to fundraise

Thank you. We'll support you all the way. #LetsBeatPSC