Patient Perspectives Report 2017

Transcription

1 Patient Perspectives Report 2017

2 Patient Perspectives Report 2017 Contents Executive Summary 03 Foreword 05 Background 07 Chapter 1: Awareness 09 Chapter 2: The care pathway: testing, diagnosis and support 11 Chapter 3: Treatment & cure 16 Key recommendations

3 Executive Summary This report gathers the testimony of hepatitis C patients across Engand, in order to highight their experiences of iving with hepatitis C and accessing care, as we as recommendations, informed by these experiences, of how hepatitis C can be better addressed in Engand. treatments compared with the new direct acting antivira (DAA) treatments. Experiences of the new drugs were uniformy more positive than with the od treatments, with patients reporting that they are abe to continue iving their ives as norma during treatment. The od, interferon-based treatments, by contrast, resuted in a range of deepy unpeasant side-effects which caused patients significant distress. However, the ack of access to the new drugs, and the uncertainty of waiting for them to be made avaiabe, was a huge source of frustration for those we interviewed. The report focuses on three centra themes: Key recommendations Awareness & stigma There is a ack of awareness of hepatitis C among patients, members of the pubic and heath professionas. Many patients tod us they were unaware of basic facts about the virus, such as risk factors, and that this was compounded by the often ow eves of awareness among heath professionas. As such, many went undiagnosed for ong periods of time and, even after being diagnosed, frequenty received incorrect or poor-quaity advice. Those we interviewed aso said that poor awareness of the virus among members of the pubic caused stigma, which often eft patients feeing ashamed and unabe to confide in others. The care pathway: testing, diagnosis and support Patients were frustrated by the ength of time it took for them to receive a test for hepatitis C and want to see more widespread testing. Many patients were ony diagnosed by chance, despite possessing cear risk factors. The manner in which they were diagnosed was aso a common compaint, with many feeing they were informed in an unacceptabe way, or not given enough information upon diagnosis. Patients aso fet they were not offered enough support foowing their diagnosis and during treatment, with a common recommendation being access to counseing and support groups through the NHS. For Government: A pubic awareness campaign shoud be impemented, aimed at tacking stigma around hepatitis C and at encouraging individuas to access testing. A nationa hepatitis C pan for Engand shoud be reeased aimed at increasing the numbers of peope tested and diagnosed, in order to faciitate the eimination of the virus in Engand by For commissioners (CCGs, oca authorities, NHS Engand): Commissioners shoud ensure that testing and screening bood for hepatitis C increases in primary care, secondary care and Accident & Emergency, and is routine in sexua heath cinics, during antenata care, and in drug and acoho services. Counseing and/or peer support services shoud be made avaiabe to patients with hepatitis C. For NHS Engand: NHS Engand shoud aboish run rates for the new hepatitis C treatments and adhere to the principes underying our heath system by providing access to the best cost-effective treatments to a patients who need them. For heath professionas: Patients with hepatitis C shoud be provided with cear and comprehensive information upon diagnosis, for exampe through information packs co-designed and co-produced with patients. Treatment & cure There is a significant difference in patients experiences of the od hepatitis C A reevant heath professionas and drug service staff shoud be supported in maintaining a working knowedge of hepatitis C, for exampe by ensuring attendance at bood borne virus training is a core component of a professiona deveopment pans

4 Foreword The Hepatitis C Trust was founded in order to ensure that patients voices were ampified in the nationa discussion about the virus. Whist we have come a ong way since the Trust was estabished back in 2001, significant chaenges remain in ensuring that the voices of hepatitis C patients and others affected by the virus are heard. Chares Gore Chief Executive, The Hepatitis C Trust Peope with hepatitis C often sti face stigma and reguary encounter heath professionas who are uninformed about the virus. There are sti arge numbers of peope with hepatitis C across Engand who remain undiagnosed, putting them at risk of deveoping serious iver probems. To compound this, due to the cap imposed by NHS Engand on the number of peope who can receive new, more effective drug treatments each year, those peope who have been diagnosed often face severe difficuties in actuay accessing treatment. This report is a much-needed refection of the probems faced by the hundreds of thousands of peope across the country who have hepatitis C. Yet it aso highights the opportunities in reation to hepatitis C. The significanty more positive experiences patients have had with the new treatments, compared with the od, interferon-based ones, make it easier than ever for hepatitis C to be eiminated as a pubic heath concern, provided the wi is there. The Hepatitis C Trust wants to see the eimination of hepatitis C as a serious pubic heath concern by 2030; this is eminenty achievabe. My dream is for there to be no need for The Hepatitis C Trust to exist. I want to be abe to cose the doors of our organisation, knowing that we have achieved our aim of eimination. 05 The experiences shared by patients in this report, and the experiences of nurses as set out in the accompanying Nurses Perspectives report, highight the urgent need to raise awareness of the virus, increase the numbers of peope being tested and, utimatey, treat more peope in order to eiminate hepatitis C as a pubic heath concern in Engand. 06

5 Background Hepatitis C is frequenty misunderstood, with often ow eves of awareness and knowedge among heath professionas, the pubic, and even those who are particuary at risk of contracting the virus. 160,000 peope in Engand are estimated to be chronicay infected with hepatitis C. Amost haf of peope who go to hospita for hepatitis C are from the poorest fifth of society. An estimated 50% of peope with hepatitis C remain undiagnosed. Over the ast decade, hospita admissions from hepatitis C-reated iver disease have neary triped and deaths have doubed. In May 2016, the UK Government pedged its support for the WHO s goa of eiminating hepatitis C as a major pubic heath threat by This ack of awareness and knowedge is despite hepatitis C being one of the three main causes of iver disease, which is the ony one of the five big kiers in Engand where deaths are rising. Deaths caused by hepatitis C have doubed over the ast decade, with hospita admissions for hepatitis C-reated iver disease having neary trebed. It is estimated that 160,000 peope are currenty iving with hepatitis C in Engand. With around haf of those undiagnosed, hepatitis C reay is a sient epidemic, and represents a significant pubic heath chaenge. The recent introduction of direct acting anti-vira drugs provides the opportunity to eiminate the virus as a major pubic heath threat, in ine with the UK s internationa commitment, by These treatments, unike oder interferon-based treatments, have short treatment durations, very high cure rates, and itte or no side-effects, making treatment for hepatitis C a consideraby ess difficut process for patients than in the past. However, the current state of hepatitis C services in Engand gives cause for concern from the patient perspective. Athough the Government has pedged its support for the Word Heath Organisation s goa of eiminating hepatitis C as a major pubic heath threat by 2030, mutipe barriers in the system preventing increased numbers of peope being tested, treated and cured mean it is hard to see how this wi be achieved in Engand in the current environment. Access to treatment is sti severey restricted, due to an unprecedented nationa cap on access to the new treatments being imposed by NHS Engand, despite them having been approved as cost-effective by the Nationa Institute for Heath and Care Exceence (NICE). With run rates guiding the numbers of peope each Operationa Deivery Network (ODN) is abe to treat each year, the end resut is that many patients are being tod they are not i enough for treatment. This has the perverse effect of denying treatment to peope who have ooked after themseves and deayed iver damage by iving heathiy, resuting in them being punished for iving heathier ives. It is aso eading some to take drastic measures such as buying generic versions of the drug onine. This report was compied foowing nineteen semi-structured interviews with patients, who were identified via existing inks with The Hepatitis C Trust. Participants answered questions on how they caught the virus; their experience of testing, diagnosis and (where reevant) treatment; and the quaity of information and support they received. The report maps out some of the main issues affecting peope with hepatitis C in Engand. These issues incude the wider heath and psychoogica impacts of iving with hepatitis C, the stigma that is attached to the virus, and the stress, uncertainty and anger of having to wait for access to the new treatments. The report concudes with recommendations for key actions to hep those suffering with the virus and to ensure continued progress in the journey towards eimination

6 Chapter 1: Awareness Hepatitis C has historicay suffered from a ack of awareness, with members of the pubic, patients and even heath professionas often acking basic knowedge of the virus. For a number of reasons, it is hugey important that these ow eves of awareness and knowedge are increased. With so many peope with hepatitis C unaware that they have the virus, raising pubic awareness is crucia in order to increase the number of peope getting tested. Low eves of awareness among heath professionas represent another significant barrier to ensuring higher diagnosis rates, with patients who present with symptoms of hepatitis C often being mistakeny diagnosed with other conditions and not offered a test for the virus. ony be contracted by injecting drugs and had therefore not considered himsef to be at risk. Medica professionas awareness of hepatitis C was aso a concern for the patients we spoke to, particuary awareness and knowedge eves among GPs. A number of patients said that their GP had faied to test them for hepatitis C, despite years of presenting common symptoms, and a medica history that ceary put them at risk of contracting the virus. Patient hepine staff from The Hepatitis C Trust aso reported frequenty speaking to patients who express shock and disbeief that they went so ong without being tested despite exhibiting textbook symptoms of the virus. The ow eves of knowedge among heath professionas are not just a factor with GPs. One patient reported an exchange with a nurse who was uncear as to what exacty hepatitis C was, asking the patient if they coud go home and Googe it. Awareness needs to be improved. Based on the fact that when I was diagnosed with hepatitis C I d heard of it and that was it, and given that I fit into a high-risk group, I don t think that was a good thing, when I d heard so much about HIV in contrast. Patients aso often encountered other support service professionas with ow awareness of hepatitis C. One patient we spoke to, who had been the victim of a sexua assaut, was not advised to get tested by the support charity they accessed, despite the nature of the assaut having put them at serious risk of contracting the virus. The patient was ony eventuay diagnosed as a resut of reguar tests they received in reation to a separate condition. We were aso tod of drug service workers who faied to te patients that they were at risk of contracting hepatitis C due to a ack of knowedge about the virus. Increasing eves of awareness of hepatitis C is aso vitay important in order to hep those who have been diagnosed. Better understanding of the virus woud ikey reduce the stigma that peope with hepatitis C encounter, which often arises from misunderstanding and ignorance. Many of the patients we interviewed said they had itte understanding of hepatitis C prior to being diagnosed with the virus. Whist pre-test awareness eves of hepatitis C were sighty higher among the more recenty diagnosed, even certain at-risk groups such as peope who inject drugs (PWID) and peope who had had a bood transfusion prior to 1991 had itte awareness of hepatitis C before being diagnosed. One patient who contracted the virus through drug use said that he knew of the virus but didn t know anything about it prior to being diagnosed, and had aways assumed that it was ony reated to ong-term heavy acoho use. By contrast, a patient who had contracted the virus through another route beieved that hepatitis C coud I was feeing i for so many years and didn t know what it was I suffered with depression, I ve had night sweats, nausea, tiredness, memory issues and going to the doctors, it was aways, it s postnata depression, it s this, it s that, never hepatitis C. They tested me for every cancer going, I had chest x-rays, an endoscopy, coonoscopy, bronchoscopy, everything but never for hepatitis C

7 Chapter 2: The care pathway: testing, diagnosis and support Not once did a medica professiona my GP or anyone question whether I might be at risk of hepatitis C and whether I shoud be screened, even though I d had so many operations and been given so much bood during the 70s and 80s. So you can imagine how totay shocked I was when I was diagnosed in 2013 with no idea what hepatitis C was. Many patients with whom we engaged were distressed by the ength of time it took for them to be tested for hepatitis C, a consequence of the often ow eves of awareness and knowedge among many heath professionas. One individua said it took two years from discovering they had raised iver enzymes after a bood test to being tested for hepatitis C, with their condition having been mistakeny (and, to the patient, offensivey) ascribed to high acoho consumption. Awareness in the MSM (men who have sex with men) community of the risks of contracting hepatitis C through unprotected sex were aso reported to be ow. This is in strong contrast to this community s awareness of the risks of HIV, thereby ceary highighting the gap in the eves of pubic knowedge of the two diseases. The differing eves of stigma around hepatitis C and HIV among MSM was aso highighted, with more awareness and better knowedge of the avaiabe treatments resuting in reativey itte stigma around HIV. By contrast, stigma is often sti attached to hepatitis C, with one patient saying they encountered peope who woud refuse any physica contact with those who have the virus. The ack of information about hepatitis C aimed specificay at MSM was highighted as a significant factor in the ow eves of knowedge. Among South Asian patients, awareness eves were aso considered to be ow. One patient we spoke to said: After hearing that peope who have had medica treatment in paces ike Pakistan are at higher risk of getting hepatitis C, I decided to get tested and discovered that I had the virus. The probem is, there are ots of peope from the South Asian community who are unaware that this is the case and haven t been tested. Due to the consideraby higher prevaence rates for hepatitis C among the South Asian community in Engand,it is crucia that this ack of awareness is corrected. I don t think there s enough information aimed specificay at the risk group of gay men about how hepatitis C is passed on sexuay and I don t think it s passed on proactivey enough; you can find it if you go onine and if you ook for it but I don t think it s there otherwise. Unike HIV, it s either not covered at a or mentioned as a side-ine, or you see some things onine that are overy paranoid and extreme. 11 A number of patients we spoke to said they had ony been diagnosed by chance, despite having ceary been at risk of contracting the virus. One patient was ony diagnosed as a resut of routine bood tests carried out before a hip repacement operation, despite having experienced symptoms of hepatitis C for around twenty years (which ed to her being tested for a number of other conditions, such as diabetes, but not hepatitis C). Another, co-infected, patient was ony diagnosed as a resut of routine tests undertaken in reation to their HIV status. It just needs to be routine, the testing it took me so ong. I never knew that I had had a bood transfusion (I didn t remember it, it was a part of the post-birth experience), and I ve never injected drugs and that s how I thought the majority of peope get hepatitis Surey the cost of the test is minima and shoud be added on as a matter of routine. One of the most frequent areas for improvement cited by patients was increasing eves of testing for the virus, particuary by impementing routine testing for exampe, upon first registering with a GP. One patient highighted the way routine tests are carried out for HIV in areas of high prevaence and advocated this being repicated for hepatitis C. As we as testing more peope for the virus, one patient caed for a ook-back study to be conducted, with the aim of identifying and finding a those who have been diagnosed with hepatitis C in the past to ocate those who may have dropped out of treatment or the care pathway. Simiary, it was suggested 12

8 More hospita departments and GPs need to do testing it needs to become more of a routine thing adding it on to a those ists of other tests you just generay do when someone is not feeing we is what s needed. 13 At the hospita where I was referred to discuss treatment, the doctor I had insisted to me that the ony way I coud have caught it was through sex and that I shoud ony have sex if I used a condom. I ended up having an argument with him actuay, he was very rude. I said that I had found out sexua transmission was actuay very rare, so I was upset about that. that more data needed to be gathered and disseminated about the number of peope who have been tested, diagnosed and treated in different areas, in order to engender a kind of competitiveness among doctors, which woud be expected to drive up testing and diagnosis rates. For others, it was their interactions with medica practitioners when being informed of their diagnosis that made the patient pathway experience even more distressing. Many patients said they were not given enough information about the virus after being tod that they had tested positive. This often ed them to conduct their own research onine, where they encountered miseading information. Others were even given incorrect information, for exampe that the ony way they coud have contracted hepatitis C was through unprotected sexua intercourse, as one doctor incorrecty stated. Patients refected that they are often expected to be proactive in reaching out for and identifying information about the virus, about anything from managing their condition to the new treatments for hepatitis C. This is particuary probematic considering the demographic of peope affected by hepatitis C, many of whom may not be in a position to take such a proactive approach due to a combination of socio-economic or psychoogica factors. This situation heightens the variation that exists in quaity of care for hepatitis C, resuting in inequaity of access to care and treatment, and exacerbated heath inequaities. Patients said they woud have iked more information about the effects of the virus, the avaiabiity of treatments, and ifestye advice, amongst other things. Many of those we spoke to fet that eaving patients to seek information themseves often ed them to access inaccurate or miseading information on the internet. One patient who did receive written information upon diagnosis fet that it was directed at peope with pre-existing knowedge of the virus, making it unsuitabe for those who needed basic information. Making cear and accurate information avaiabe upon diagnosis and throughout the care pathway woud prevent the spread of myths and ensure that patients are not exacerbating the damage being caused by the virus. I wanted a doctor to te me what hepatitis was, what it did, what you needed to do I wanted answers, not through the internet or phoning The Hepatitis C Trust, but a doctor sitting down with me. It was aways so rushed, it never fet ike they had ong to speak to me. Some patients were given the news that they had tested positive for the virus in a manner that they found to be totay unsuitabe and which caused them a great dea of distress. One patient said they discovered they had hepatitis C when they received a phone ca from their oca hospita asking them to attend an appointment about your hepatitis C this was the first the patient had heard of their diagnosis and ceary caused a significant amount of shock and confusion. Another patient was informed that they were hepatitis C-positive by a receptionist, something they described as a shocking piece of information from someone I didn t fee was quaified to te me. Leves of support after diagnosis were aso a concern for those we spoke to, with many saying that they were deat with by staff who often coud not answer their questions, eading them to rey on the internet or support groups for information. In addition to the deays many patients experienced in receiving a test, many encountered deayed care post-diagnosis, incuding having to wait a year just to see a consutant or receive a fibroscan to assess the extent of the damage to their iver. Having to wait for such a significant period added to the worry and upset caused by their initia diagnosis, particuary given that they had no idea of the iver damage they were iving with at that stage. A arge number of those we spoke to aso wanted to see increased access to support through the NHS. Many fet they had to find information and support through organisations ike The Hepatitis C Trust but patients often ony discovered this support foowing a period of uncertainty, distress and fear after their diagnosis. By making access to support avaiabe at the time of diagnosis, it was fet that some of the psychoogica strain of testing positive for the virus coud be reduced. The type of support most frequenty mentioned was counseing, to hep patients dea with the psychoogica strain of being diagnosed. I received absoutey no written information. The ony information I received was from The Hepatitis C Trust hepine, who sent me a package of information. If it wasn t for the internet I think I d be totay stuffed. I ve never been signposted to any other forms of support ike counseing either, and I think at first this woud have been hepfu. Patients aso cited the vaue and importance of peer support, whether from an individua peer support worker or vounteer or as part of a support group. One patient we spoke to highighted the peer support that is avaiabe through The Hepatitis C Trust as an exampe of good practice, saying: What the Trust does in terms of user-ed support, with support from peope who ve been through it themseves that seems key. Receiving support from someone who has direct experience of what they are going through can be particuary hepfu for patients, and the increased provision of peer support for hepatitis C was strongy supported. 14

9 I woud ike to see an NHS group run by a psychotherapist or trained counseor who coud have contact with the hepatitis C team nurses etc. who coud reay anything back. Especiay when treatment has finished, even if you ve faied it s ike a door coses on you, it fees ike the NHS aren t interested Chapter 3: Treatment & cure Overwhemingy, the patients who had access to the new direct acting antivira (DAA) treatments reported having a much more positive experience than those who were treated with oder interferon-based treatments. With the new treatments causing significanty fewer side-effects than the oder treatments and having shorter treatment durations, adherence rates are much higher and patients spoke of their excitement at being abe to access these new, game-changing drugs. Patients who were infected with both hepatitis C and HIV (known as co-infection) often contrasted the support they received for HIV with that for hepatitis C, with a genera perception that services for HIV are more hoistic and comprehensive in their approach than for hepatitis C, and that it is easier to see an HIV speciaist than a hepatoogist. During hospita appointments, co-infected patients reported, HIV patients are often seen by a consutant physician, whereas hepatitis C patients usuay see a nurse. With regard to treatment, the broader moves within the NHS towards greater shared decision-making with patients reating to their care do not seem to have been whoy adopted in reation to hepatitis C. The majority of patients we spoke to reported experiencing fairy paternaistic interactions with their consutant and of having to push for further information in order to fee propery invoved in their own care. It has been much easier to ring up and get an HIV appointment reay quicky, but I m aways tod there are hundreds of peope waiting to see the hepatoogist and I can t get one. Hepatitis C is nothing ike HIV when it comes to the services for patients; there s a big difference. The Hepatitis C Trust s patient hepine staff reported that patients who have experience of both od and new treatments are significanty more positive about the newer drugs, with peope abe to carry on working and many patients saying that their ives coud continue as norma whie undergoing treatment. This not ony has a wider socioeconomic benefit, but aso means that patients are abe to maintain I started the [od] treatment in I had to stop treatment a few weeks in though because my heath had deteriorated so much I coudn t raise my arms, I was covered in spots. I had aso been beeding from the nose quite seriousy for four days. Every time I had previousy raised the issue with the nurse, a she woud say is that happens. sef-esteem and confidence eves, and are not eft with the additiona menta heath impact of having to give up empoyment. Peope who had experienced interferon-based treatments reported a wide variety of unpeasant side-effects incuding depression, psoriasis, nosebeeds, breathing probems, fatigue, and chronic pain. Frequenty, the severity of these side-effects ed patients to cease treatment eary, preferring to ive with hepatitis C rather than go through the suffering and hardship associated with treatment. By contrast, those who had experience of the new DAA treatments reported itte or no side-effects and fet improvements in their heath soon after commencing treatment. The ony frequent compaint associated with the new treatments is the probem of gaining access to them. The ack of access to the new treatments is a consequence of the cap 15 16

10 I ended up with severe psoriasis from the interferon it fared up to 95% coverage a over my body. Within two weeks of starting the treatment it happened and I ended up going into the dermatoogy department and having a kinds of other treatment for it. I was bed-ridden for about five weeks, I coudn t physicay get up and wak because the pain was so unbearabe. I was [supposed to be] on the treatment for 12 months but I eft after three. imposed by NHS Engand on the number of peope who can be treated. With oca areas having different criteria for treatment, there was a sense that a postcode ottery exists which means that those who ive in an area with a high prevaence of hepatitis C are more ikey to face ong waits for treatment. This sense of a postcode ottery aso extended to support services, with one patient describing the contrasting avaiabiity of support in the two areas they had ived in as amazing. Fatigue and a degree of depression never eft throughout the [interferon] treatment. It fet ike chemotherapy; everything tasted of chemicas. I started Harvoni/ribavirin in May 2014, on a 24-week tria. The experience of the medication itsef was totay unprobematic, despite the fact I was i at the time with cirrhosis. There were no discernibe side effects at a. I fet a genuine improvement from eary on. Of those patients who had been refused treatment with the new generation of DAA drugs, the argest cause of frustration was the uncertainty around access to the new treatments, and what some fet was an arbitrary test of whether patients shoud be provided or denied the drugs. A ack of carity about the criteria for treatment is exacerbating a stressfu situation with many patients feeing that those who shout oudest are treated first. Some of those we spoke to were angry that their condition woud have to worsen before they woud be eigibe for treatment, especiay as some fet they were being punished for having taken care of their heath in order to minimise the damage to their iver. Patients aso spoke of their frustration at the current criteria for accessing treatment. Basing access to treatment purey on the condition of a patient s iver fais to acknowedge the wider heath impacts of the virus, they said, and a number of those we interviewed said that the criteria needs to change to refect this. These heath impacts incude other physica probems, but aso the psychoogica effect of being infected with the virus. One patient was concerned that their iver woud be deemed too heathy, therefore deaying access to treatment, despite them suffering other physica heath probems as a resut of the virus. Something that has nigged with me is that I was speaking to my HIV/hepatitis C consutant, who aso runs a cinic in Gasgow, and she said to me, if you were a patient in Gasgow, I woud be abe to write you a prescription for Harvoni. So that makes it more frustrating, that there s a postcode ottery and then a ottery in terms of nations within the UK. Many patients who are on a waiting ist for the new drugs report being unaware as to how ong they wi have to wait with no knowedge as to whether it wi be a matter of weeks, months or even years. The psychoogica effects of not knowing how ong they wi be waiting can be considerabe, particuary with the knowedge that the heath impacts of the virus are ikey to worsen during the waiting period. Some patients have taken matters into their own hands, with The Hepatitis C Trust hepine staff reporting contact with severa patients who have obtained generic versions of the new drugs onine. Athough the cost of buying generic drugs is a tenth or ess of what the NHS is paying, this is ony an option for some peope and it is ony through increased access to the drugs on the NHS that others wi be abe to receive treatment. Furthermore, buying over the internet exposes patients to substandard, fake or even physicay harmfu drugs. I was tod this year that I m not sick enough to get treatment, that I have to be patient. I have ooked after mysef so carefuy and that s party why my iver isn t too damaged, and I received this through a bood transfusion, and yet it fees ike I m being punished for this. Key recommendations For Government: Patients tod us: Pubic awareness of hepatitis C needs to be increased in order to tacke stigma and reach at-risk groups. Patients often had very itte knowedge of hepatitis C before being diagnosed and some did not reaise they were part of an at-risk group. Many peope with hepatitis C were reuctant to te peope about their diagnosis due to the stigma attached to the virus, which is often a resut of misinformation. The Hepatitis C Trust recommends: A pubic awareness campaign shoud be impemented, aimed at tacking stigma around hepatitis C and at encouraging individuas to access testing. Patients tod us: We have to increase the numbers of peope diagnosed and treated if we want to eiminate hepatitis C. Chances to test and diagnose peope are sti being missed, and more has to be done to increase testing, diagnosis and treatment. Patients fet that there was a ack of a coherent strategy for tacking hepatitis C in Engand, with too many diagnosed by chance and very variabe experiences of inkage to care. The Hepatitis C Trust recommends: A nationa hepatitis C pan for Engand shoud be reeased aimed at increasing the numbers of peope tested and diagnosed, in order to faciitate the eimination of the virus in Engand by For commissioners (CCGs, oca authorities, NHS Engand): Patients tod us: Tests for hepatitis C need to be offered more frequenty. Routine testing, particuary among at-risk groups, woud be a highy effective measure to identify and treat patients with an undiagnosed infection of hepatitis C. Providing testing in other services, such as Accident and Emergency departments, increases the ikeihood of finding and diagnosing patients who are not engaged with heath services. The Hepatitis C Trust recommends: Commissioners shoud ensure that testing and screening bood for hepatitis C increases in primary care, secondary care and Accident & Emergency, and is routine in sexua heath cinics, during antenata care, and in drug and acoho services. Patients tod us: More support shoud be provided post-diagnosis and during the treatment pathway. Peope with hepatitis C often fet they had to seek support themseves, or from patient organisations, rather than being offered support through the NHS

11 Many patients fet it woud have been usefu to have received peer support from someone who had previousy had hepatitis C and been treated. The Hepatitis C Trust recommends: Counseing and/or peer support services shoud be made avaiabe to patients with hepatitis C. For NHS Engand: Patients tod us: Treatment shoud be made avaiabe to everyone who has been diagnosed with hepatitis C. The current cap on the number of peope abe to access the new treatments each year is an unprecedented decision by NHS Engand. The restrictions are causing, significant distress, frustration and uncertainty for patients. The Hepatitis C Trust recommends: NHS Engand shoud aboish run rates for the new hepatitis C treatments and adhere to the principes underying our heath system by providing access to the best cost-effective treatments to a patients who need them. For heath professionas: Patients tod us: More information needs to be provided upon diagnosis. Many hepatitis C patients say they were not given enough information when they were diagnosed, which often ed them to access unreiabe information on the internet. Providing information upon diagnosis woud aso hep to ease patients worries and hep them to better navigate the care pathway. The Hepatitis C Trust recommends: Patients with hepatitis C shoud be provided with cear and comprehensive information upon diagnosis, for exampe through information packs co-designed and co-produced with patients. Patients tod us: Awareness and knowedge of hepatitis C needs to be improved among many heath professionas. Many patients had textbook symptoms of hepatitis C but were not diagnosed due to the ow eves of knowedge about the virus among heath professionas. Peope with hepatitis C report frequenty receiving poor advice and support from heath professionas. The Hepatitis C Trust recommends: A reevant heath professionas and drug service staff shoud be supported in maintaining a working knowedge of hepatitis C, for exampe by making attendance at bood borne virus training a core component of a professiona deveopment pans. 19