scotfreehiv

The only way to a Scotland free of HIV is by fostering positive attitudes and promoting understanding. This blog shares information and thinking about public health and the prevention of HIV. I would like to think that it’s relevant to people living with HIV. It would be great to hear what you think. Follow me @RoyKilpatrick1
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In 667 pages of the Scottish Government’s white paper, ‘Scotland’s Future’, a mere sixteen were dedicated to ‘Health, Social Care and the NHS’. The future of the NHS in Scotland, became a key battle-ground in the middle of August.
Nationalist claims of privatisation and funding cuts to our National Health Service if Scotland remains in the UK have polarised the country. I’ll argue that in fact it is unnecessary and wrong for health and especially public health to be so cheaply politicised in this way.

EVIDENCE

Firstly, the Scottish Parliament’s devolved powers have acted as a bulwark against Westminster reforms. The White paper itself states, “The advantages of making decisions for ourselves are clear”, while asserting that, “without devolution, the NHS would have been repeatedly reorganised by the Westminster Government of the day, regardless of the needs of the people of Scotland.” It gets perceptibly excited on the benefits of devolution to health. Threats to our NHS are mere shadows of a midnight bogeyman on the nationalist bedroom wall.

Westminster has not sought to impose its reforming zeal on Scotland, Holyrood has held to traditionally collaborative models of healthcare planning and delivery. Arguably it is too traditional in its hesitance to follow England’s example by breaking down hierarchies in favour of patient and community voices. Indeed, ‘divergence’ best marks health policy in Scotland vis a vis England’s. True, not only since the Coalition took power in Westminster in 2010, but throughout devolution’s short history under different political leaderships since 1999. Alex Salmond himself has said that nobody can force Scotland to privatise its health service.

That full control over health is a good news story is universally recognised. Health colleagues south of the border share the view, envious of the stability NHS Scotland enjoys. Although the White paper intention is to maintain UK links, it would be retrograde were independence to diminish shared learning, advice and regulation across the UK.

Innovation and economy of scale within the UK’s NHS framework are not accidental. A UK-wide NHS with both formal and informal networks, is ranked as amongst the best in the world.

By disrupting these bonds, the SNP’s ambitions would create further fragmentation and uncertainty for the NHS

THE SNP CASE

On health, however, some jaggy nettles have to be grasped.

The Barnett Formula, warns the SNP, is a vehicle not only for Westminster hand-outs to a cap-in-hand Scotland, but a Trojan horse of funding cuts and privatisation. First flaw in that argument is that Barnett applies not to the bloc grant, but only to ‘cosequentials’, changes over and above the annual health allocation (1). Secondly, NHS funding has increased annually in England, matched under Barnett by increased funding to Scotland. The SNP Government failed to pass on these increases, choosing instead to apply the money to its own populist agenda. Indeed, to balance the books, they steadily increase use of private health care within our NHS. All without blushing.

The SNP Government seeks “the economic and fiscal levers currently controlled by Westminster, to set policy to Scotland’s circumstances, strengths and preferences.” In its wisdom, the Scotland Act 1999 legislates for tax varying powers. They have never been used. Instead, a costly and divisive referendum has set the clock ticking towards substantial public service funding gaps (IFS).

Hoping to trump all, the SNP includes a right to healthcare in its draft Constitution (2). But existing human rights law already entrenches such provisions, bolstered by legislation establishing and defining the NHS. An intention to build the NHS into the foundations of an independent Scotland, though laudable in its intention, is unnecessary and would become a happy hunting ground for legal challenge.

In summary, privatisation can happen only by the decision of our Parliament No party there has any such intention.

THE REAL CHALLENGES

Inequality is the root of Scotland’s poor health and well-being. The SNP damns the obscenity of poverty in a nation so rich, a sense of affront shared by us all. Inequality is ingrained in a complex mix of social, cultural and economic factors. Reference is often made to the ‘Glasgow effect’, best illustrated in the very different life expectancies of boys from affluent Lenzie (82) and, just seven miles away, deprived Calton (54). The nationalists fail to spell out how their independence project can even begin to improve a situation, which has baffled our best-laid schemes for over half a century. Nationalists might rage against the machine, but ingrained poverty is best tackled in unison with cities across the UK.

For inequality to be tackled, Scotland must build on successes like tobacco controls, reduced cancer mortality rates, or the promise of minimum alcohol-unit pricing. A more crowded and competitive independent government portfolio, however, would be hard pressed significantly to progress the health agenda in Scotland.

Research and healthcare innovation, in which Scotland’s Universities excel, receive 13% of all funding, a proportionately high level for Scotland’s 8% of the UK’s population. Why erode such an advantage to the health and well-being of Scotland’s people for the sake of political vanity? Let’s develop our distinctive education system and research strengths within rather than separate from, the UK.

Under our Parliament’s devolved powers, health has improved with prospect of longer-term benefits. Independence is not the logical next step. Instead of using health as a ping-pong ball, cooperation and sharing our strengths and talents within an interdependent UK is the way forward.


(1) http://paulcairney.wordpress.com/2014/08/11/what-is-the-barnett-formula/
(2) http://www.scotland.gov.uk/Resource/0045/00452762.pdf

Posted at 9:11am and tagged with: scotland, health, NHS, Scottish national party, Scottish labour, Scotland referendum, indyref, equality, inequality, hiv, glasgow, hiv scotland, scottish government,.

The Commonwealth Games opened in typically gallus Glasgow style.

Sometimes bonkers with Donald running around with neither kilt nor troosers, and with dancing Tunnock’s Tea Cakes, Glasgow and Scotland nevertheless made a point about our nation’s inventiveness and skill in a ‘Here’s Tae us, Wha’s like us’ way.

It also struck out for generosity and solidarity raising over £4 million for UNICEF. Then of course for equality with two out gay and lesbian presenters, the Barrowman kiss (not to be confused with the Glescae kiss), and the rainbow flag hoisted above St Andrew’s House for the duration of the Games in recognition of Commonwealth ‘diversity’.

The Commonwealth Federation brings their Games, confident in the transformative force of sport, a belief familiar to Saving Lives supporters. The Games are meant to be an entertaining and unifying tool for education, gender equality, and youth empowerment.

The rhetoric surrounding the Games, however, strangely misses any reference to health and wellbeing, or to the challenges particular to Commonwealth countries in the shape of HIV.

With 2.328 billion citizens, or 30% of the total world population, the Commonwealth represents a startlingly disproportionate 60% of the total number of people living with HIV globally.

The 18 African nations of the Commonwealth have a total of 21.5 million men, women and children living with HIV, followed by just over 3 million in Asia’s 8 Commonwealth countries with the vast populations of India, Pakistan and Bangladesh. With prevalence rates as high as Swaziland’s 26.5% and Botswana’s 23%, and as low as Bangladesh’s 0.1%, it is clear that the epidemiology of HIV in the Commonwealth is affected by many different factors. In the same also, responses differ, from Australia’s integrated human rights based approach, to the promotion of HIV testing in Zambia or the example of treatment activism in South Africa, the Commonwealth holds a body of very effective knowledge and skills.

One feature of 42 of the Commonwealth’s 53 member nations, however, is the criminalization of same sex relationships. Across the Commonwealth therefore, claims the Equality Network, LGBTI people are denied equal access to health services, employment, education, housing and human rights. More recent anti-gay legislation and police activity in countries like Uganda and Nigeria have compounded the terror faced by many who, if the stay, risk their own life, or if they flee, are confronted by even greater threat in refugee camps in the form of beatings, murder and expulsion.

Alongside criminalisation of homosexuality, criminalisation of certain HIV-related actions, and use of HIV-specific or general laws in countries across the world increases vulnerability of individuals and groups and endangers the success of prevention. Many of these laws are a hang-over from British colonial rule. Far from introducing homosexuality, British colonialists and legislatures brought their own prejudice and legal forms, particularly into African and Asian countries hitherto at ease with a diverse sexuality.

Attempts have been made through the Commonwealth Heads of Government Meetings to address these problems, but sadly, for many the very mention of homosexuality switches off any engagement from that country.

The Secretary General and heads of government need to revisit the Harare Declaration and build an up-to-date statement of values and of principles by which the Commonwealth operates. There is a shift in thinking away from conditional aid on the part of the UK Department for International Development. Withdrawing aid from Uganda, for example, is unlikely to change attitudes. A different approach which seeks to address and repeal discriminatory colonial legislation was proposed in a recent human rights conference in Glasgow. In tandem, a multi-dimensional approach with a focus not only on sexuality but also on race and religion was adopted.

If it helps you to see beyond the gold medal highlights to the lives of the sportsmen and women in their home countries and to how the inconsistencies and unfairness in our Commonwealth can be ended, then the Games will have made a difference.

Posted at 9:46pm.

Human rights are fundamental to living well with HIV.

There is considerable scope for us to drive the human rights agenda in HIV prevention, treatment and care strategies. Not only as a flag around which we might rally, but more importantly as a tool and lever to be used by and for individuals and groups, as a catalyst to obtain effective clinical and public health services.

HIV in the experience of those living with and affected by it, has followed so closely the track of inequality, poverty and discrimination that it is tempting to view it through the prism of rights related to specific groups. There is ample evidence that denial of human rights and failures of governments and other establishments to exercise responsibility to women, gay men, people who use drugs, and sex workers, fuel the spread of HIV and deepen the poor outcomes associated with late diagnosis, poor adherence, and inequitable access to services.

This has a general application, but if we bring this closer to home here in Scotland, and consider health rights and HIV standards already set out and published, we see how a rights agenda could get right behind a positive change for HIV and for people living with the virus.

Although social and welfare needs are relevant, those bodies dedicated to these topic areas are better placed than HIV organisations to pursue a policy and campaign portfolio. The most immediate and directly relevant area that concerns anyone living with HIV is the health and well-being agenda in the shape of clinical and public health services, and it is here that our energy and resources must be focused.

The “Charter of Patient Rights and Responsibilities”, based as it is in the Patient Rights (Sc) Act 2011, sets out what we can expect as NHS patients, including anyone living with HIV. It is a sound starting point from which to explore rights and responsibilities in relation to HIV. The headings cover access, communication and participation, confidentiality, safety, and feedback/complaints. Any overview of the needs of people with HIV will see at a glance how vital these are.

Equitable access regardless of where in Scotland we live or any other consideration defines what might be expected of HIV prevention, testing, treatment and care. Too often officialdom or finance departments mutter that it’s OK for example for the big health boards, or for areas where numbers are more manageable, but ‘it’s different here’. No it is not. Equitable access is not only a right, it is set out in commitments such as Scotland’s HIV Standards that if you need, for example, specialist clinical psychology support, you should get it.

Why is it that, unless human rights and responsibilities are set out explicitly in our national HIV strategies and standards, the natural tendency of systems and establishments will resist rights while heavily promoting individual responsibilities? It has a lot to do with where we have invested powers and influence in the planning and delivery of HIV services. That is why the second heading under the NHS Charter, ‘Communications and Participation’ is as important as the first. Were people with HIV able to participate with properly communicated information, then access to specific services would not be so patchy, and late or very late diagnosis would not be at the scandalous levels they are, around 53% and 31% respectively. It is lack of responsibility on the part of generic clinical services to inform themselves that we see too many individuals who present with indicator conditions falling through the net only because they (often women) do not fit the stereotype, or, to put it another way, are not within the target group of gay men on which so much attention is focussed.

So also we might work our way through the crucial topics of confidentiality, respect and safety which are, for us, touchstones of good care which determine how effective are our care provision and ability to live independently and well.

Our record in integrating human rights to our HIV strategies is weak. Ponder the fact that, despite nods to a human rights approach in ‘Respect and Responsibility’ Scotland’s sexual health strategy and the ‘HIV Action Plan’, explicit references are altogether lacking, as also in the Framework for sexual health and blood-borne viruses.

Other links must therefore be utilised in upholding and promulgating human rights in a health context. The context of human rights in health is well articulated in “Getting it Right?” as it describes a relatively well developed political, legal, social, economic, environmental and technological background. The resulting ‘Scottish National Action Plan” (SNAP) seeks to embed human rights into the integration of human rights to health and social care. This presents an opportunity for HIV strategies and frameworks to be more closely and clearly aligned with human rights.

Public Health England missed an opportunity to galvanise its vision of having nothing less than ‘the best HIV prevention response in the world’ with a strong human rights and equality structure. Instead it puts its faith in an injection of £20 million at a time when other health conditions recognise that plans must be delivered ‘within the financial realism that European society experiences’ (European Cancer Patient Bill of Rights, 2014). Investment in health is of course a driver of better health and one wishes the project success in seeking such resources.

Australia’s consistency in developing its HIV strategies within the human rights context is a model to us. In Section 6.4 of its strategy, it states, “Australia’s approach to HIV/AIDS has demonstrated the protection of human rights to be both compatible with and essential to the effective protection of public health” http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-national-strategies-2010-hiv/$File/hiv.pdf It follows effortlessly therefore for harm reduction, sex work decriminalisation, and equality to be woven into the actions and for success to follow.

Opportunities to build a human rights agenda need not await development of high-level strategies, important as they are. They present themselves day-to-day, because human rights affect our daily lives living with HIV.

People living with HIV need a Charter of Rights.

Posted at 1:16am and tagged with: hiv, aids, human rights, prevention, treatment, scotland, hiv scotland, hiv standards, framework sexual health blood-borne virus, nhs, nhs scotland, health rights, charter for hiv, hiv charter, terrence higgins trust, waverley care, gay men's health, hiv carers,.

"High lever support for the City of Edinburgh’s tolerance policy towards saunas.
As professionals and individuals with expertise and experience of HIV prevention, treatment and care, we note the recent discussions regarding the City of Edinburgh’s ‘toleration’ policy on the licensing of saunas in the city. This policy emerged from a pragmatic consensus on public health and safety, born out of hard lessons learned from early mistakes, but also on courageous and ground-breaking innovation. Harm reduction policies applied in various areas of Council, health and enforcement responsibilities have been successful and have been admired world-wide. It protects the most vulnerable, provides clear and confident lines between community and public authority, and forms the foundation of excellent tailored social and health care services.
We urge the Council not to compromise this dearly bought reputation, and to work with all sections of the community to address concerns whilst maintaining the health, safety and well-being of Edinburgh’s residents and many visitors.”
Roy Kilpatrick

Posted at 11:17am.

My heart sank.

I’d just put the phone down. A friend’s routine test results had shown up Hepatitis C. Again. The first time was just two years ago. On top of HIV. Now he has to face it all over again, with the added complication of being on HIV therapy. Despite everything, he wanted to get started on HepC treatment as soon as possible. With new treatment, there was a good chance of clearing the virus.

This is probably all too familiar to some readers. Unfortunately. A recent study reported that of gay men in London infected with HepC, a quarter go on to be reinfected, some even for a third time. Most of those are also HIV positive. What’s come to be dubbed ‘chem-sex’ seems to be a common factor, with increasing numbers of gay men experiencing problems with their drug use, some of it related to injecting. But it’s not the full explanation. London may be an epicentre, but it does not represent the whole of the UK, and by far the population with the highest risk are people who inject drugs.

Many cases of HepC infection in gay men have no London or other high prevalence connection, no injecting, sauna or sex club links. In another context, mobility is associated with higher levels of HIV and STIs, with ‘migrants’ (defined as anyone living outside their home country) experiencing greater difficulty accessing services, higher levels of drug use, and loneliness. At closer range, light and occasional drug use or heavier sex doesn’t explain HepC infections. Some people can’t work out how they got it.

Away from the debate around London’s rising rates of HIV and HepC, occasional drug use can turn out to be problematic. An elated feeling, a sense of invulnerability and an illusion of control prepare the ground for HepC. And HIV. Community events in London have started to share information and ways of providing support. David Stuart of Antidote calls for the “brave pursuit of some unattractive truths, and raising awareness of some dangerous Chem-Sex trends that are devastating parts of our gay scene/communities” (Lancet article “New HIV diagnoses in London’s gay men continue to soar”

Given that Stuart’s experience with Antidote, London’s only specialist gay men’s drug problems service, his voice represents the the needs of gay men with substance misuse problems when he says, “We need to support the sexual health clinics and substance use sectors to do shared, tailored work, and improve targeting and monitoring so empirical data can qualify this anecdotal concern”. The National AIDS Trust’s proposed raft of measures to tackle injecting drug use, only go to show the extensive ground tragically lost or perhaps never gained in drug related HIV and, now, HepC prevention. 

London is not representative of the UK, and neither does the city’s gay club scene reflect London itself or gay men generally. We must beware of falling easy prey to moral panic. In our new Puritan era, sex and porn stir public and political outrage. This is a mistake, and it is hypocritical. Overdose deaths, soaring rates of HIV, and reinfection with HepC don’t happen without a hinterland, which we all inhabit. In a plea for balance and perspective, one commentator argues that it is dangerous and irresponsible to blame the rise in HIV on ’gay sex parties’.

One risk of focusing on more extreme and sensationalist drug use is that we ignore important social, pharmacological and individual factors. A second is that it reinforces the ‘otherness’ of HIV and HepC, and in turn, a blaming and shaming culture.

One or more cases of co-infection and re-infection are not the only story. You probably know friends whose relationship teeters forever on the brink because one can’t cope with the other’s drug use. Or it’s on the rocks due to alcohol problems.  It really isn’t ‘cool’.

Neither are co-infection and re-infection the full picture. You can read ‘Adam’s story’ on UK positive lad’s blog.  Similarly, someone else was contacted by a guy he’d fancied for a while and invited him round. He had a great time. A great time that is, until the HIV meds in the bedside cabinet gave away his secret. He was HIV-positive, and his visitor got nasty about it. No matter that the positive guy’s viral load was undetectable or that he used condoms and had only safe sex. Familiar? What happened afterwards persuades me, if I needed persuasion, that efforts to tackle HIV stigma need to start with gay men themselves. Now there’s the stigma of HepC, if anything, even greater.

Forget anti-stigma campaigns directed to fellow underground passengers and the like. As gay men, we need to know about safe sex, preferably early in the school curriculum, what it’s like to live with HIV or HepC, how it feels to face ‘HIV/HepC whispers’, and to be landed with full responsibility for telling and protecting a sexual partner. In order to tackle problem drug use among gay men, regardless of how prevalent or serious, we must deal with our own hinterland of stigma, ignorance and denial, as well as the challenge of city clubs and parties.

The bad reaction in that particular instance made the start to HepC treatment even more difficult. Think about HIV. Now add HepC, treatment side effects, and the pressure of trying to hold down a job while feeling rotten, and having to slip away for weekly hospital appointments. Mix in the clinic’s messy, unconventional HepC treatment initiation, assumptions about drug use, and poor communication with the HIV clinic. Individual tailored support is a flimsy prospect when your HepC clinic won’t even take blood for a CD4 count or fit appointment times around a patient’s needs. True, this experience may not be typical of HepC clinics but there is no excuse for it anywhere.

A brief observation is that there is a wonderful vocabulary of patient engagement and advocacy around HepC and HIV. It can help if more than words, and if not is mere lip service. Sometimes, it can even be counter-productive.

Staff training and practice must be improved to be about more than the mechanics of handing out medication or even clinical expertise in hepatology. Expertise in co-infection from whichever source, is an essential. Drug problem services must be more flexible to prevent gay men who don’t fit the usual service user profile, having to go from pillar to post. This is my nomination for an equalities agenda closer to home for community and campaigning organisations after equal marriage settles in.

I can only imagine how heart-sinking it must be to catch HepC, especially on top of HIV. But treatment, especially now with the addition of a third HepC drug, gives very real prospect of clearing the virus, even for a second time. New drugs in the pipeline will improve things even more. Strong policy recommendations and increasing awareness and information provision, on HepC and co-infection (eg infohep) will help.

Meantime, we need to reach the undiagnosed, resource and standardise treatment and care, and find out the best way of dealing with what’s on our own door-step. A nascent community response, if supported and not highjacked, is already promising.

(See the latest stats on ‘Hepatitis in the UK’, here)

 

 

Posted at 11:19am and tagged with: HIV, hiv testing, HIV Scotland, HepC, Hepatitis Scotland, World Hepatitis Day, Infohep, aidsmap, hepatitis europe, HIV testing, drug problems, people who inject drugs, HIV positive, HepC test, HIV policy, HepC policy, National Aids Trust, terrence higgins trust, chem-sex, uk positive lad, APPGA, HIV Stigma, HepC stigma, coinfection, reinfection,.

image

From the moment someone sits down to be told that their HIV test result has come back positive, they set off on a journey. Because there is no cure for HIV, that journey is for life. At that first point of diagnosis, trying to see the road ahead can be like plotting a way through a bowl of spaghetti.

At this stage and later, a map or pathway of the journey is helpful. For both patient and healthcare staff the first three months can be complex. At this point, it’s important that patients and healthcare staff begin to share information and know what to expect.

This is not left to chance as each part of HIV care and treatment services must meet standards and guidelines set out by the NHS and by bodies like the British HIV Association. In Scotland, NHS Healthcare Improvement Scotland specifies in its HIV Standards that each NHS Board must have and use a document known as an Integrated Care Pathway (ICP) for people living with HIV. In other parts of the UK, clinics have developed pathways. 

We need these pathways so that we know what will happen if we need to be referred to another part of the hospital, how the HIV clinic links with our GP, to record results of blood tests like CD4 and viral load, and to make sure that nothing is missed. Care pathways are not unique to HIV, but are used in other health conditions too.

To understand more of how Integrated Care Pathways work for HIV, it is helpful to outline what an Integrated Care Pathway is and how it works.

First of all, it serves more than simply a record of patient care. What makes it different to a set of case notes, is that it sets out how healthcare is organised, co-ordinated and governed. These aspects make it clear which member of staff within a healthcare team is responsible for specific parts of the journey through the healthcare system. It also connects the care provided with the research and evidence set out in the Standards and guidelines, which help patients and doctors decide on the best way forward.

Later, we will look briefly at the steps in a patient journey, but it is important to note that Standards apply wherever one lives. Local circumstances and patient preference mean that the exact means of achieving that Standards will differ, but in general they are the same based on the best evidence and experience.

Because the ICP is not a single-track line, but a map that takes account of when we might divert from the usual route, it is a way of recording variances. The real-life route is all-important in this regard. It is not an excuse to deviate from the Standard, but allows a degree of flexibility. That flexibility, however, has to be to the benefit of the patient because an ICP must be patient-centred. Recording the variances in the experience of patients allows a comparison between that’s planned and what’s real. Wherever that happens, there ought to be a note to explain the variance. Once a number of these notes can be analysed, this forms a basis for the continual development and improvement of clinical practice.

Use of an ICP doesn’t make the management of HIV any less complex, but it does simplify the process and ensures that each step is followed. The fact that core information is brought together into one document reduces the potential for important information to be missed when making decisions about next steps in care and treatment.

The fact that the ICP is linked to sets of standards and guidelines, allows for the document to be designed and used in such a way as to be used to audit and scrutinise clinical care, as well as to act as a tool in care and treatment management. In Scotland, where NHS Healthcare Improvement Scotland requires specific and improving standards, as well as equity of access to a set of services regardless of location, this serves as an important tool for scrutiny of NHS Board performance.

In essence, the ICP document describes for both the patient and the healthcare staff what is to be done, by whom and at what stage. Once this is in place, then it will act as a kind of Sat Nav system so that the bowl of spaghetti looks more navigable, and less confusing than it did at the time of diagnosis.

If one considers that in the first three months alone, there are potentially over 100 processes ranging from a confirmatory HIV test to recording a CD4 count, it is possible to grasp that good care needs to be well managed. With all the effort and stages, the ICP helps to prevent a patient duplicating the same tests unnecessarily, and also avoids delays. It is a way of staying on track with keeping the next appointment, understanding when and when not to go to the GP, who we might speak to if we need extra help, and to check whether or not medications are about to run out. When it is shared and explained, the ICP helps us to make better sense of the HIV journey.

Definition of an Integrated Care Pathway:

“An Integrated Care Pathway is a tool, which is locally agreed, multidisciplinary, based on guidelines and evidence where available, for a specific patient/client group, forming all or part of the clinical record, documenting the care given, facilitating the evaluation of outcomes for continuous quality improvement.” 

Sue Overill, Journal of Integrated Care (1998), 2, 93-98

Integrated care pathway

A crucial aspect of an Integrated Care Pathway is that it reflects the patient needs and journey. It has to be ‘patient-centred’, a term which is often bandied about to the extent of being meaningless, but in this context is vital as the ICP has to be as close to real life as possible. It is to improve patient well-being in every aspect, and not simply to fit what’s convenient for the clinic.

For it to work properly, two factors follow logically and practically. First is that for the plan to work, patients need to be consulted and to participate in forming the plan. This might be by a discussion with a number of patients, or through a patient questionnaire or a combination of both. Although not every patient can take part, if there s something about your care that you don’t understand, or something that would help you in particular, it is always helpful to discuss it with your doctor or other healthcare worker. In Scotland in the next few months when ICPs reach a next stage of development, you might find that you are asked to participate in a clinic questionnaire to help with the planning of care that meets the national Standards.

Secondly, it depends also on good co-operation between patients and healthcare staff. For example, staff are expected to record a CD4 and viral load count within a certain number of weeks, or have a discussion about how to look after your own health or protect sexual partners. Keeping appointments on the patient’s part might seem too obvious, but this simple contribution is important to getting the best care based on the Standards. 

HIV Integrated Care Pathway

During the first three months, an ICP would set out a number of fundamental aspects of future care, including: 

History, e.g. diagnosis, sexual and drug history, psychiatric history, and history of allergies.

Examination, e.g. neurology, body fat distribution, checking inside the eye.

Investigations, e.g. confirmatory HIV test, resistance test, partner notification, key staff and consent to contact GP

Screening, e.g. cervical screening for women, CVD risk, and cognitive screen where necessary.

Ongoing care, advice on reducing sexual and drug risks, partner notification, needs of any children, psychological support and consent to contact GP.

Over time, other aspects of care, including referral to other healthcare professionals form part of the ICP.

In summary, use of ICPs improves HIV care through:

  •  Better co-ordination of your care
  • Agencies and disciplines working well together
  • Quality of care as the priority
  • Knowing about each worker’s roles and responsibility
  •  Direct audit of clinical practice
  • Professionals know who to communicate with about your care
  • Full participation in your health care in partnership with all healthcare workers 

NHS Healthcare Improvement Scotland will host a further HIV Services ICP Learning Event in September 2013 when more work will be done to coordinate ICP development that supports clinics and services across Scotland.

If you want to read more on Integrated Care Pathways, here are some links:

Integrated Care Pathways: A Guide to Good Practice - Nicola Davis …

www.wales.nhs.uk/sitesplus/829/opendoc/116450/

The Sexual Health and Blood Borne Virus Framework 2011-2015

www.scotland.gov.uk/Publications/2011/08/24085708/6

NHS Healthcare Improvement Scotland 

SWAGNET 

Map of Medicine 

This blog first appeared as an article in Baseline Magazine, July 2013. 

 

 

Posted at 4:17pm and tagged with: HIV, hiv integrated care pathway, hiv positive, patient participation, patient journey, care pathway, healthcare improvement scotland, hiv scotland, hiv treatment, hiv testing, hiv prevention, hiv services, equity of care, scottish government, scottish government sexual health hiv, sexual health, infectious diseases, quality of care, standards of care, hiv standards, sexual health blood-borne virus framework, HIV ICP, coordination, integrated care pathway, healthcare records, GP, clinic, GUM, scotland, united kingdom,.

This is the first of 3 blogs on HIV Home Testing, following my first on "HIV Testing: how can we build on success?" of a few weeks back. Scroll down to find the full series. Comments welcome!

One solution being proposed for the improvement of late and undiagnosed HIV is a change in legislation to allow for the introduction of home testing.

Under the legislation, it is an offence to supply or advertise HIV testing kits other than under the direction of a registered medical practitioner, and is based on their classification as of high risk to individual and public health.

The argument for home HIV testing is that anything that increases testing is bound to be good, especially in the comfort and security of your own home. I will say it only once, but not all homes are comfortable or secure. This article asks questions of the policy.

Firstly, however, it is useful to sketch in some background.

When I first heard it mooted that HIV home testing kits should be legalised, I asked the opinion of about five senior HIV health professionals from psychology, clinical care, epidemiology and public health, all of whom were decidedly against. It led me think a change in legislation unlikely.

To be fair, advocates of home testing include influential and respected figures, like Dr Steve Taylor of Birmingham Heartlands and the ‘Saving Lives’ charity, which is making significant impact on the promotion of HIV testing by bringing together the world of sport and entertainment, positive people and professionals. Dr Myron Cohen, another proponent, concludes that, ‘It’s hard not to be fully enthusiastic’.

imageThis article sets out some learning and thinking based on my reading and discussion with people of various views.

There is an important legislative and practical difference between ‘home testing’ and ‘home sampling’, which will emerge in my discussion.

With home testing, an individual receives or purchases a test kit, which they self-administer before receiving the direct result in a matter of minutes without the involvement of any other individual. Arguments for and against touch upon a number of factors. Fundamental to policy and practice are the reliability, utility and safety of the test itself and its administration. When the FDA issued its 2012  approving home testing for sale in the United States, the now familiar ‘comfort and security of your own home’ used by manufacturers and campaigners alike was a key message.

Significant data from the same press release, however, received surprisingly scant attention. Clinical trials of Oraquick, the FDA approved test, recorded no fewer than one in twelve false negatives. Here is the quote:

Clinical studies for self-testing have shown that the OraQuick In-Home HIV Test has an expected performance of 92 percent for test sensitivity, the percentage of results that will be positive when HIV is present. This means that one false negative result would be expected out of every 12 test results in HIV-infected individuals.

One of the criteria set by campaigners in favour of the supply of home testing kits is to enable regulation to avoid the serious risk of false negative and false positives. Yet at the first hurdle, the OraQuick saliva test stumbles and falls by its own published results. 

Not only so, but the home testing kit cautions what is a sub-optimal three-month window period in contrast to the much shorter fourth generation clinical standard advocated by campaigning organisations.

The ‘improvement’ of HIV testing has to be more than increasing the potential number of new tests. Safety and quality of the HIV testing experience are paramount.

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Supply and advertising of home HIV testing kits remain illegal. Home sampling, however is different and is within the law.

I will be careful not to confuse the two, though inevitably there are parallels. In both cases, it is likely that they would be ordered over the internet and delivered by post, as the only way to date of obtaining the testing kits. In the USA they are stocked now on your local Walmart supermarket shelves.

By its nature, home sampling is subject to regulation, which requires that a clinician be involved in the provision of test results. The provider has to be approved by the Care Quality Commission, and the kit compliant with MHRA regulationThe MHRA also provides information to the public on the safety of self-testing kits in the UK.

Currently in the UK, Dr Thom’s ‘remote’ healthcare has cornered the home sampling market and is used by three London-based bodies, Dean Street NHS clinic, GMFA, and by the Terrence Higgins Trust in collaboration with the HPA. Dr Thom’s home sampling comply fully with the regulations and results are confirmed by a laboratory test and communicated either through a patient’s online record or by telephone.


A key argument in favour of legalising supply and advertising of home testing kits is that it would facilitate their regulation. A familar argument. Aside from the earlier point, regulation would not control access to the kits, nor necessarily inappropriate, coercive or mischievous use. The burden of proof sits, I believe, with advocates of a home testing policy. Advocates tell us that kits are being purchased over the internet despite the legislation, so it would be helpful to have more information even if anecdotal, of, for example, the number and demographics of those individuals who have used home testing kits and self-diagnosed as HIV positive.

Once the supplier has posted a home testing kit, responsibility passes to the customer, and its benefits or otherwise are reliant then upon individual understanding and self-administration, as well as upon home storage conditions. Home sampling on the other hand requires the return of the sample to a laboratory for testing. The result is communicated according to a protocol and there is access to trained and clinically supervised staff. Home sampling is similar therefore to processes in community outreach clinics for people who use and inject drugs, or for men who have sex with men.

It is appropriate to take a step back to identify which problem a change in home testing policy seeks to address and how it will achieve its goal. In the case of home sampling, the target audiences currently are gay men and, to a lesser extent, Africans. We assume this priority would be the same for home testing. Except that a commercially available home testing, as opposed to home sampling, kit is less easily targeted. Once legal, company profits and market flux in home testing kit supply would trump our national health strategies and epidemiology.

Encouraging results in community testing and postal home sampling have been reported, with the greatest impact in areas of high prevalence for HIV such as Brighton and some parts of London. With strong leadership, similar multiple initiatives supported by primary care and A&E collaborations, could be adapted successfully to local conditions outwith London. While we await evaluation of the impact of FDA approval in the USA, would it not be better to put our resources behind scaling up and intensifying of what we know works rather campaigning for home testing?

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Acceptability of prospective home testing seems to be high among key populations. How might this translate into action genuinely to improve the quality and experience of testing, and of its individual and public health benefits?

If we take home sampling as a proxy, an exploration by the HPA of expanded healthcare and community testing found a return rate for postal home sampling of 47%. In another study of negative partners in a relationship with someone positive, 90% accepted an oral fluid home sampling kit rather than attend the clinic for a test, suggesting that highly targeted home sampling is feasible, convenient and reliable for annual testing (BHIVA, March, 2013). Acceptability of around 60% in key communities is proposed as a basis for opening up home testing to the general population, without clarifying how.

With some people experiencing symptoms being missed as they are by health professionals, how likely is it that they will click on ‘Buy Now’ for an HIV home testing kit? Recognition and diagnosis in this important group will be addressed more effectively through improvede generalist clinical awareness of indicator conditions. 

In fact, commercial marketing might work in the opposite direction. It is worthwhile viewing OraQuick’s home testing advertCompare it with public responses by the generally fit, young and sexually active public on social media, such as Twitter and Facebook. Mostly, they’re sceptical and dismissive of OraQuick’s HIV test kit sales slogan, ‘It’s everybody’s thing’.

In recent Huffington post articles, the author advocates a ‘mobile’ or ‘remote’ healthcare revolution and recommends repeal of home HIV testing kit regulations. The author was the CEO of the private ‘remote’ healthcare company, ‘Dr Thom’. She declared her interest part way through one article, but one can imagine the outcry were commercial tobacco and alcohol interests so blatant.

The recent shift of contracts for diagnostics away from NHS to private providers in England offers an interesting context. 

Principles of inclusion, transparency and openness apply regardless of sectoral or financial interests, and sponsorship deals, especially if there’s a public consultation. Public benefit and not sectoral or organisational interest must be the sole criterion. The recommendation (364) for repeal of the Home Testing Kit Regulations (1992) in Lord Fowler’s ‘No vaccine, no cure’ report came out of the blue with no discussion far less evidence in the report itself. There must be a clear distinction between service provider and political or campaign interests.


Two aspects of legislative change need careful consideration. The first is that generally UK regulation in the area of medical devices implements EC Medical Devices Directive into UK law. The HIV Testing Kit Regulation, however, exists in its own right, standing apart from European directives. The basis for the current MHRA review of European directives is consistent with concerns such as, insufficient or unsatisfactory medical evidence relating to safety and performance, imprecise post-market surveillance by manufacturers, and inadequate coordination and transparency.

Secondly, a change in legislation to permit sale of HIV testing kits could affect the rules for sale of other diagnostic kits. It might be argued that this would help to mainstream another aspect of HIV. Beware, however, of a double-edged sword.

Innovative delivery and new technologies opening up real options in HIV testing, aside from home testing. HIV testing is not an end in itself, but an opportunity to assess risk, and a first step to integrated care. In both, the quality of the testing experience largely determines the outcomes in terms, for example, of linkage to and retention in care.

Our HIV testing policy must see beyond numbers. It must drive the implementation of standards set by BHIVA and Healthcare Improvement Scotland. Standards rooted not only in clinical evidence but also in the experience of people themselves living with HIV. 

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