HEP C SCANDAL – failure to provide treatment or baseline data

17 Jul

National figures suggest 49% of people who inject drugs in the UK are hep C positive, this compares to just 1% who are HIV positive. This group is more likely to have been in prison and been homeless and 47% are unaware of having hep C.

Only 3% of people with hep C get treatment annually despite existing effective treatments being available. This is a scandal.

The rate is far lower for those with drug problems and figures are not kept regularly on people’s access to treatment. This hides an appalling institutional discrimination against drug users and other minority groups. Only 52% of Health and Wellbeing Boards have given any priority to hep C despite many of them having high rates of infection. The numbers dying as a result of hep C infection are rising at an alarming rate despite it being something for which there are effective treatments. The failure to act is shameful.

Substance misuse agencies, the NHS and local authorities must do more to test, treat and cure those with hep C. A first step would be for Public Health England to add a question about whether those hep C positive are receiving treatment to data required from all service providers, to ensure an adequate baseline on which to base an improvement plan.

Hep C, harm reduction, the changing face of drug and alcohol use and services in an age of austerity for the public sector

20 Jun

I was asked to be on a panel this week at the DAAT conference in Brighton and to pick some themes to talk about for 5 minutes.

The realisation that we have let down a generation of drug users by failing to test, treat and cure, Hep C was my starting point.

The rising tide of deaths from hepatitis C, a preventable and curable virus, is a scandal. It is absolutely unacceptable that half of those living with hepatitis C are still undiagnosed and a mere 3% of those infected are treated each year. There is a clear link between hepatitis C and deprivation. Hepatitis C has been overlooked, ignored, under-prioritised and underfunded resulting in spiralling hospital admissions and deaths. This is because the majority of people living with, and dying from, the virus are from the most marginalised, vulnerable, deprived groups of society.

If the health service is to reduce health inequalities and “improve the health of the poorest, fastest”, hepatitis C must be addressed.

Many hepatitis C patients are still never assessed for liver damage or offered potentially life-saving treatment despite the fact that treatment has improved and new drugs with almost 100% cure rates and very few side effects are expected to be approved shortly. We need to ensure we test, treat, cure and eradicate hep C and drug and alcohol agencies need to do their part in finding, testing and supporting people into treatment.

I travelled home to radio 4 talking about how a new report indicated a huge jump in liver cancer and death from liver disease as a result of alcohol consumption and Hep C.

My next theme was the changing patterns of drug use bringing with it different needs. The changing pattern of drug and alcohol use continue to offer challenges to traditional service models which for many no longer meet their needs at a time when service cuts is limiting the range of services on offer.

Services will need to quickly adapt our methods of working and re-engage with a harm reduction/minimisation approach if we are to respond adequately to the risky drug and sexual behaviour in some communities. In the age of legal highs we need to teach people how to minimise the risks, in the age of older drug and alcohol users we need to develop care facilities to cope with those who continue to use illicit drugs.  We need to respond to the drug and alcohol use of all where this is problematic not just the marginalised in society.

I am concerned at the failure of commissioning structures and policy to recognise that some of the best work of drug and alcohol services is in supporting those who have yet to become drug or alcohol free to stay alive and survive and find shelter and food from day to day, along with minimising the potential risks they face.

Current developing drug use patterns in many ways remind me of the 60’s and 70’s and e-cigarettes could be the most significant change in administration routes in a generation both for good and bad.

Given that I have been raising the issue for nearly three years now my third theme was how substance misuse organisations are coping in the evolving funding and commissioning landscape.

In less than a minute to cover the ground I decided on a poetic delivery style, more for less, increased involvement of volunteers and mutual aid, adapt or die, diversify and innovate, mergers and partnerships, and for some bankruptcy.  We are seeing the extinction of the small agency and the serious threat to larger organisations as a result of tender destabilisation.

Sadly services are also operating in a much reduced voluntary sector with far fewer local organisations on the ground to share the load as a result of the bleak funding ice age for the sector which is giving every indication of getting worse.

What I was going to say about Blenheim, but had to cut when 5 minutes became 3, was the following:

“At Blenheim we have completely re-organised our approach to manage in the new commissioning world with a clear vision of who we are this involved some clear choices:

  • We chose to be a charity,
  • We chose to say focussed on the needs of those with drug and alcohol problems
  • We chose to focus on skills of our staff and delivering high quality services.
  • We chose to stand up for and campaign on behalf of our beneficiaries who are mothers , brothers, sisters and grandparents, work colleagues and friends not just people to be defined and stigmatised by their drug and alcohol use.

Small and medium size organisations can survive but they have to fight and be clear about why they deserve to make a difference for the people they serve.

We have the best alcohol and drug treatment system in the world much of what is good has come from the diversity of the small.  Fight for it, and fight for the diversity of the small.”

Why Blenheim is a passionate supporter of the campaign to eradicate Hep C

24 Apr

As CEO of Blenheim I have been concerned for years about the poor access to treatment for drug and alcohol users with hepatitis C. Late in 2013, I read the foreword from The Hepatitis C Trust report “The Uncomfortable Truth: Hep C in England: The State of the Nation” written by Charles Gore. I decided for Blenheim and I that the time for concern was over the time to act had arrived. Please read below the foreword that had such an impact upon me.

“There must be no more excuses for the rising tide of deaths from hepatitis C. Hepatitis C is a preventable and curable virus. The fact that deaths from the virus have nearly quadrupled since 1996 is a scandal. It is absolutely unacceptable that half of those living with hepatitis C are still undiagnosed and a mere 3% of those infected are treated each year.

This report reveals plainly the link between hepatitis C and deprivation. Almost half of patients with hepatitis C who go to hospital are from the poorest fifth of society.

It begs the question: has hepatitis C been overlooked for all these years, resulting in spiralling hospital admissions and deaths, because of the people it impacts? Has it been ignored and under-prioritised because most of the people living with, and dying from, the virus are from the most marginalized, vulnerable, deprived groups of society?

One thing is certain: if the health service is to reduce health inequalities and “improve the health of the poorest, fastest”, hepatitis C must be addressed.

Almost ten years ago a ‘Hepatitis C Action Plan for England’ was published by the Department of Health, recognising hepatitis C as an overlooked condition, a “Cinderella service”. However, the Action Plan did not contain any benchmarks, targets, timelines, monitoring or evaluation measures to ensure implementation of the actions. As a result, implementation was patchy at best and now, almost a decade on, many hepatitis C patients are never assessed for liver damage or offered potentially life-saving treatment.

However, the future could be bright. Treatments for hepatitis C have improved in recent years and new drugs with almost 100% cure rates and very few side effects are expected to be approved in the next few years. Furthermore, the emphasis on addressing public health and health inequalities in the recent NHS reforms should make tackling hepatitis C a priority.

Public Health England, local authorities, NHS England and clinical commissioning groups have a tremendous opportunity to work together to tackle hepatitis C. This report summarises the current ‘state of the nation’ of hepatitis C in England and challenges the new NHS to work together to provide hepatitis C patients with the care they need and deserve and in too many cases have not been receiving.

With coordinated and effective action to diagnose and offer treatment and care to everyone with hepatitis C, The Hepatitis C Trust believes that the virus could be effectively eradicated in England within a generation. Let’s stop talking about it. Let’s do it.”

Charles Gore

Blenheim is fully committed to ensuring this powerful vision becomes a reality and over the next few blogs I will share with you what we have been doing to support The Hepatitis C Trust and others to ensure we eradicate hep C.

Blenheim Recovery Stories

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#15 of 50 Recovery Stories http://blenheim50.wordpress.com


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Public health ring fenced funding not safe in PHE and Local Authority hands

2 Apr

Blenheim is extremely concerned that Local Authorities are diverting ring fenced funds for public health which includes money for drug and alcohol services to fund other services. Blenheim adds its voice to that of the Faculty of Public Health which has called on Ministers and the National Audit Office to more closely scrutinise how the system is working.

Local authorities across England are diverting ring fenced funds for public health to wider council services to plug gaps caused by government budget cuts a BMJ investigation has found. The BMJ also found that public health staffing in some parts of the country is being scaled back to save money. Professional organisations have warned that public health’s voice may be drowned out in local government and that its workforce is spread too thinly.

The investigation found examples of councils reducing funding for a wide range of public health services, including those for substance misuse, sexual health, smoking cessation, obesity, and school nursing. The BMJ found that many local authorities have deployed public health funds to support wider council services that are vulnerable to cuts, such as trading standards, citizens’ advice bureaux, domestic abuse services, housing, parks and green spaces, and sport and leisure centres.

Only 45% of respondents to a recent BMA survey of public health professionals working in local authorities and at Public Health England believed that the public health grant was being used appropriately in their area, while almost half (49.6%) believed that the grant was seen “as a resource to be raided” by local government.

The BMA’s survey also highlighted fear about future staffing levels in public health, with just 12% of respondents believing that there would be enough substantive consultant posts available to serve the needs of the population in 10 years’ time.

The Association of Directors of Public Health told the BMJ that it was particularly concerned about a vacuum in public health leadership at the top of local government, with a quarter of director posts currently unfilled or filled by temporary appointments.

I am even more concerned about Public Health England’s (PHE) apparent failure to adequately ensure that the public health money is spent in line with the ring fence.

The national authority, Public Health England, has said that it supported local authorities making tough decisions and that it was right for public health grants—totalling £2.8bn across England for 2014-15 – to be used to leverage wider public health benefits across the far larger spend of local government.

Duncan Selbie the head of PHE said “The duty is to improve the public’s health, not to provide a public health service.”

At Blenheim our translation is it is about improving the health of the overall population not treating people who are ill. This is particularly unfortunate for those whose treatment is the responsibility of local authorities and PHE. PHE seems to be giving the green light to local authorities to loot and plunder the ring fenced public health grant at will.

This will then come as little comfort to those who now rely on the specialist health services to support them overcome problems with drugs and alcohol and brings into question whether these services and a relevant proportion of the funding should be transferred back to NHS England which is about providing a public health service.

As part of its investigation the BMJ issued requests under freedom of information legislation to all 152 upper tier local authorities in England (most of which are unitary, county or city councils), asking for details of all services commissioned and decommissioned since April 2013 and for details of commissioning intentions for the coming year.

Of the 143 authorities that provided information, almost a third (45) have decommissioned at least one service since April 2013, while others have cut funding to certain services, the BMJ found. Many councils are decommissioning individual contracts for services such as sexual health and substance misuse and then re-commissioning new integrated services to make efficiency savings. Other authorities have decommissioned services that they said were not having the desired outcome on public health or delivering value for money.

In total, more than half of authorities (78) have commissioned or re-commissioned at least one service since April 2013, and the pace of change is set to escalate this year as councils carry out root and branch reviews of services after the year of consolidation.

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Germaine de Larch | Writer, Artist using photography as a medium, Art-Activist. This site is for my words. For my images, visit germainedelarch.co.za or germainedelarch.tumblr.com

Blenheim's Recovery Stories

In 2014 Blenheim is celebrating 50 years of social action and every week we will be sharing a story of recovery from our service users


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