We want a world without PSC and we are committed to driving PSC research and drug development
We do this by:
- funding PSC research
- influencing medicine development policy for PSC
- advancing international regulatory science for the treatment of PSC in the PSC Forum steering committee
- driving UK and international PSC research in the UK-PSC Support steering committee
- advancing and shaping PSC research in the BASL Special Interest Group for Immune-Mediated Liver Disease
- supporting research and involving PSC patients in research to improve recruitment and retention of participants in studies with patient-centred trial design
- being active in the rare disease community
- PSC Support has also contributed to a number of published research papers
Guidelines are guidance documents to support healthcare professionals with the investigation, management and prevention of diseases and conditions. They should represent a consensus of best practice based on the available evidence at the time of preparation. PSC Support is an active contributor to the development of guidelines to ensure that they cover aspects of diseases important to patients and of course, to ensure that PSC is always considered. This is important because PSC is a rare and complex disease, and must not be overlooked in favour of the more common liver diseases.
PSC Management Guidelines
PSC Support is worked with leading hepatologists and UK PSC to develop new management guidelines based on the most current evidence.
Abnormal Liver Blood Test Guidelines
Updated guidelines on the management of abnormal liver blood tests, commissioned by the Clinical Services and Standards Committee (CSSC) of the British Society of Gastroenterology (BSG) have now been published. The original Guidelines, which the document supersedes, were written in 2000 and have undergone extensive revision by members of the guidelines Development Group (GDG). PSC Support Chair of Trustees, Martine Walmsley, was an active contributor to the GDG.
Martine said, 'As these new BSG Guidelines will be used by GPs who are often the first port of call for an undiagnosed PSC patient, we worked hard to raise the profile of PSC. This comes at a time when the emphasis is on the early detection of more common liver diseases such as fatty liver disease, which can be prevented through simple lifestyle changes.
There is no diagnostic blood test for PSC, and making a diagnosis can sometimes be a case of putting pieces of a puzzle together. The pattern of abnormality in the blood tests is an important clue, and the guidelines show what to consider when a cholestatic pattern of abnormality is found. GPs will now also look at the context of the patient, such as their clinical history including Inflammatory Bowel Disease and/or other autoimmune diseases. In an ideal world, we would want all such patients to be sent immediately for an MRCP; in the real world they should at least be referred for specialist management/tests.
PSC might be rare, but it is one of the leading indications for liver transplantation. Earlier diagnosis is not only critical for starting regular symptom management and surveillance due to the increased cancer risks associated with PSC, but also for patients with early stage disease to be able to access clinical trials and research studies.'
European Reference Network Outcomes, Pathways & Guidelines Working Group
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment, knowledge and resources. The first 24 ERNs (including an ERN for rare liver diseases like PSC) were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. PSC Support is working with EURORDIS to develop ways to integrate patient views into the development of care guidelines and improvement of care pathways and outcomes, across all 24 ERNs. Martine Walmsley is a member of the Management Board of the Rare-Liver ERN.
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.
Fifty-six liver services across the UK are now working towards accrediation and four serviced are accredited. 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
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.
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, provided patient representation for liver disease patients in the development of the LiverQuest standards. As part of an assessment team, Martine carried out accreditation assessments in hospitals that have volunteered to be part of the LiverQuest development process. Martine in particular looked at patient engagement and involvement in the Liver Service. 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.'
PSC Support was a founding member of the Liver Patient Transplant Consortium:
Liver Patient Transplant Consortium (LPTC)
A partnership of the UK's liver patient support groups and charities
The Liver Patients' Transplant Consortium (LPTC) is a partnership of the UK's liver patient support groups and charities, working together on transplant issues important to patients and their families. LPTC is working closely with NHS Blood and Transplant (NHSBT) to ensure that the patients' perspective is heard and considered.
The role of the LPTC is to:
- promote and support the involvement of the public and patients in the provision and delivery of liver transplant services and organ allocation;
- obtain the views of patients, carers and their families in relation to their needs for, and their experiences of, liver transplant services and organ allocation;
- make reports and recommendations about how liver transplant services and organ allocation could or ought to be improved, to persons responsible for commissioning, providing, managing or scrutinising such services, and to NHS Blood and Transplant (NHSBT).
Together, the LPTC will:
- promote the values of public and patient involvement in decisions affecting the commissioning and delivery of liver transplant services, organ allocation and related services.
- respect the confidentiality of individuals.
- evaluate the impact of involvement.
In order to achieve this, we will:
- conduct the highest standards of public and patient involvement.
- provide support to help facilitate the sharing of best practice involvement amongst the partners.
- champion the use of patient experience and public voice in the commissioning, governance and evaluation of services.
2013 - 2015 Chairs: Martine Walmsley and John Crookenden
2015 - 2017 Chairs: Andrew Langford and John Crookenden
2017 - 2021 Chairs: Alison Taylor and John Crookenden
2021 onwards: the LPTC developed into the UK Liver Patient Groups Alliance, part of the UK Liver Alliance.
Martine Walmsley, PSC Support Chair of Trustees, is Co-Lead of the ERN RARE-LIVER PSC Working Group.
PSC Support commissions and funds research to address quality of life and wellbeing for PSC patients and the impact of PSC on families
For many years, only the ‘medical’, symptomatic side of PSC was acknowledged in scientific literature, and not the emotional difficulties caused by unpredictability and uncertainty. This meant little or no psychological support was available for people with PSC and we wanted to change that. Living with a complex, untreatable, invisible disease which carries an increased risk of cancer is not easy. PSC Support was the first patient organisation to evidence and represent the unmet needs of those affected by PSC and bridge the gap between traditional scientific knowledge of PSC and real world PSC through our research survey which started in 2014.
Martine Walmsley, Chair of Trustees of PSC Support said, 'It’s vital for PSC patients to have a better quality of life. PSC is invisible, untreatable (for now) and full of uncertainty. In close partnership with Dr Thorburn, we’ve pioneered the development of UK-PSC quality of life measure, and engaged the support of other patient organisations to make sure we have a way to evidence what life is like for people affected by PSC. It’s work in progress, but once it’s launched, we will use it to drive policy for hospitals to provide psychological support for our patients, as well as in research. We’ve also commissioned and funded the PSC Wellbeing Study to develop a psychological framework that can be used to help patients and their families.'
Prescription charges for people with PSC
PSC Support is united with 40 other organisations to campaign for an end to unfair prescription charges for people with long-term medical conditions. Prescription charges are now £8.40 per item in England, and free in Scotland, Wales and Northern Ireland. Some medical conditions in England qualify for exemption, meaning that people with such medical conditions get free NHS prescriptions. PSC Support believes that this system is unfair for people living with primary sclerosing cholangitis (PSC) and other long-term health conditions.
People with PSC suffer from a rare, long-term, incurable liver condition. Furthermore, over 70% of people with PSC also suffer from Inflammatory Bowel Disease (IBD) and/or another immune-mediated disease. Like others with long-term conditions, PSCers must pay for their prescriptions, often needing multiple medications at once. Prescription charges impose costs on people with chronic conditions for the medicine that keeps them well or even alive, not to mention the additional costs if their illnesses flare-up. There should be a fair and consistent system for prescription charges.
PSC patients should have fair access to medications to help with the debilitating symptoms of our rare and incurable condition. We support the need for free access to prescriptions for patients with a long-term health condition throughout the UK and will work with the Prescription Charges Coalition to bring about a fair and consistent system.
In May 2009, the then Government commissioned an independent review of prescription charges by Professor Sir Ian Gilmore, former President of the Royal College of Physicians. He recommended that all those with long-term conditions should be exempt from prescription charges and outlined how this policy could be introduced. However, later that year it was announced that this would not go ahead.
In October 2010, the incoming Coalition Government confirmed that it would not introduce free prescriptions for people with long-term conditions at this stage, but will ‘explore options for creating a fairer system of prescription charges and exemptions’.
Over the last decade, research by the Prescription Charges Coalition, Citizens Advice, Asthma UK, Rethink Mental Illness and Parkinson's UK, amongst others, has demonstrated time and time again the impact of prescription charges on people with long-term conditions.
The Prescription Charges Coalition's report ‘Paying the Price: Prescription Charges and Employment', released in February 2014, examines the impact of prescription charges on the working lives of people with long-term conditions in England. Surveying over 5,000 people, the Prescription Charges Coalition found that for nearly 4 in 10 respondents, the cost of medication was prohibiting them from taking their medication as prescribed. Of these, three quarters reported that this had impacted on their ability to work in some way. Prescription charges are a major barrier to people taking their medicines effectively, leading them to severely compromise their health. This results in poorer quality of life, worse health outcomes, additional treatment, unplanned hospital admissions, decreased productivity and increased reliance on benefits. Prescription charges are detrimental to the working lives of people with long-term conditions at all income levels and of all ages. While those on the lowest incomes are most affected, the survey shows that there is also an impact for those on higher household incomes. Younger people are also more likely not to take their medication due to the cost.
Recommendations from ‘Paying the Price: Prescription Charges and Employment'
- Extend prescription charge exemption to all those with long-term conditions.
- The frequency and duration of prescriptions for people with stable, long-term conditions on long-term maintenance medication should be agreed between the prescriber and patient and allow for greater flexibility to prescribe for more than 28 days.
- Information about prescription charge entitlements should be provided to people with long-term conditions at diagnosis.
- Any further changes to welfare benefits, for example, the introduction of Universal Credit, should take into account the ability of people with long-term conditions to afford their medication, as long as prescription charges remain in place for this section of the population.
Making the System Fairer - What People with PSC Say
“I would have had to let some of my conditions go untreated if I had had to pay each prescription...”
“I have to take immunosuppressants for the rest of my life to stop my body rejecting the transplanted liver, so no, I don't think its fair. This should be classed under the other illnesses where patients have to take lifelong medication.”
“I have several immune diseases none of which are considered for free meds. Although currently I am able to work 'normally', I am still on nine different prescription meds which is huge spend without my pre-payment card.”
“I just think that it's an unfair system and it should be the same for all… And I do agree that in reality people who have life long and incurable illnesses should receive medication free. People with thyroid problems and other conditions are entitled to free medication so it should be the same for everyone in my opinion.”
“No I don't think it's fair! I definitely agree that we are very lucky to have the NHS and with the amount of procedures and tests we undergo we definitely get our tax money’s worth but I don't really understand how the prescription charges work. Some patients get free prescriptions because of their condition (thyroid problems etc) yet others have to pay when their medication is just as essential. I don't understand the reasons behind this and definitely think it needs reviewing.”
“Like everything, there needs to be rules to make it fair for all.”
“I agree it's ridiculous we are have to pay for medication that's potentially keeping us alive I think it's fair we pay in some respect but not as much as they are charging; I paid £15.70 for two prescriptions and they only lasted 3 weeks.”
“I pay for mine monthly and it is a lot cheaper but if I was unable to pay for it and not take the meds I would cost the NHS more.”
“There should be clearer guidelines on who should get free prescriptions and a review on what health conditions should be eligible.”
Help us to campaign for a fairer system
If you agree that people in England with long term conditions shouldn't have to pay for their prescriptions, please tell your MP, and ask them to help us address this issue.
You can also share this action on social media and ask your friends and family to show their support. If you tweet, don't forget to tag @PrescriptionCC and @PSCSupportUK
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