Where is the drugs strategy?

Trying to get a response from Government about when the drug strategy will be published seems increasingly like expecting a sensible response from an Alice in Wonderland character.

Alcohol and drugs cause huge harms in our communities yet the Government has no intention of publishing an alcohol strategy and the drugs strategy, written over a year ago, continues to gather dust on the launch pad as it is postponed again and again.

Meanwhile drug-related deaths in England and Wales have hit record levels, with cocaine deaths reaching an all-time high in 2015 and deaths involving heroin or morphine doubling over three years to reach record levels. The failure to publish the drugs strategy means the Home Office is failing to provide the strategic leadership across Government departments at a time when we are seeing the highest number of drug deaths ever recorded. New drugs are causing significant problems and life threatening issues in prisons, amongst the homeless and in emergency departments. Funding for drug and alcohol services are being cut dramatically and benefit changes are resulting in increased homelessness and deprivation.

In February 2016, the Government said it would shortly be publishing a new Drug Strategy. At the 2016 Christmas adjournment of the House of Commons, Mary Glindon MP reminded the House that, barring an unexpected delivery from Santa Claus, it was still not to be seen. She asked again early this year, and was told that it would be “soon”. So “soon” in Government terms, means months, and “shortly” means more than a year. For a brief few days it looked as if we may see the strategy published prior to Easter but alas; it appears the Easter Bunny, like Santa, will fail to deliver.

Local authority funding for drug and alcohol treatment has been slashed by 42% since 2010. Many clients seeking treatment for addiction lead chaotic lives and many struggle with a whole host of difficulties that go far beyond their addiction. They might be embroiled in the criminal justice system and need advice, they might have housing problems or be struggling with trauma, or they might have been in care and survived institutional abuse.

There are more than 1 million alcohol-related hospital admissions each year, and alcohol is a contributing factor in more than 200 different health conditions. As Chief Executive of a drugs and alcohol charity, I see the harm that alcohol does on a daily basis. I saw the impact as a police officer. I saw the impact as a probation officer. I saw the impact on children and families as a social worker. Despite the huge impact on crime, community safety, children and links to addiction, mental health problems, cancer and liver disease, the Government has indicated it will not be developing a national alcohol strategy.

NHS England has put in place an inefficient system for rationing access to hepatitis C treatment, an illness that mainly impacts on current or former injectors of illicit drugs. Despite effective treatments being available, only 4% of people with the disease are treated annually. Imagine a plane with a hundred seats but security checks that will only let 4 of the hundred passengers fly. Then because of this inefficient system, the NHS says it cannot justify a deal with pharmaceutical companies to provide access to treatment for everyone.

The Government is putting lives at risk by failing to publish a drugs strategy, failing to have an alcohol strategy and discriminating against those needing hepatitis C treatment because most are from marginalised groups. What is particularly sad is that PHE, NHS England and the Government have done some great research into what needs to happen, but what appears to be missing is the strategies and the accompanying resources.

I would love the Government to prove me wrong by publishing the drugs strategy, writing an alcohol strategy, and agreeing a deal to fund hepatitis C treatment for all. Additionally, there would be a need to agree and ring fence resources to ensure equitable access to drugs and alcohol treatment across England, making drug and alcohol treatment a mandatory responsibility for local authorities.

Do this, and I might stop complaining. In fact, I will be first in the queue to offer my congratulations.

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Finding those most in need of hep C treatment: Injecting Drug Users or Baby Boomers?

I am writing this blog on a train back from an amazing two days in Scotland looking at hep C services and the challenges faced in eliminating hep C. Scotland has a direction of travel and action plan for its hep C services that it has been investing in for over a decade. The maturity of services and the debate on the way forward is significantly more advanced when compared to the overall chaos and lack of clarity or organisation in many services in England. Scottish hep C treatment services face many of the same challenges as the rest of the UK but Scotland has a can-do attitude compared to England’s often reluctant, grudging intervention. The English attitude is best characterised by NHS England’s untrue characterisation of hep C treatment costs as the biggest financial risk facing the NHS and is in stark contrast to the positive approach in Scotland.

The priority in both Scotland and England is to treat those most in need of treatment. This means people who have hep C and significant liver disease are prioritised for treatment. The difference is that in Scotland your disease is prioritised at a lower level of hep C-related illness. In at least one area in Scotland anyone with hep C has the same priority.

Key to this approach in both countries is finding people with hep C who have significant liver disease to meet the required prioritisation criteria. Brainy people have used lots of formulas and inputted data to come up with an estimate that half of those with hep c do not know they have it.

Given that 90% or more will have contracted hep C from injected drug use, it seems sensible to start looking for those in need of treatment in this cohort. So test lots of people injecting drugs and you find lots of people with hep C. Unsurprisingly, this turns out to be true, but it also means that you also find lots of people with hep C who have yet to develop liver disease to the extent that they qualify for priority hep C treatment. Scotland is treating people at a ratio of two-thirds priority to one-third non-priority. Although you may have to wait if you are non-priority, you are at least on a journey towards a cure. In England the picture is far less clear but anecdotally it seems rare for anyone with hep C but no related illness to be treated.

We could find a ready supply of people via drugs services if we wanted to treat everyone with hep C regardless of related disease. This is something I think could be achieved if we did a deal with pharmaceutical companies based on the volume to be treated. However, aside from some areas of Scotland, this is not the position we are in.

So what do we know about people who will have hep C and are likely to have serious related liver disease? It can take decades for hep C to cause liver damage so people will be older and many will have been diagnosed with hep C and told there is no or very unpleasant treatment. Many of these, the ‘lost found’, will not be in touch with services. Those responsible for hep C treatment in Scotland suspect that a sizeable number of people will have dabbled in occasional injected drug use decades ago and it will not even occur to them they may have hep C. They also suspect that many of those who in the past injected drugs migrated to alcohol as a more acceptable addiction.

Based on the opinion of experts and patient groups in Scotland, if we are serious about finding cases we need to systematically target the baby boomers – those born between 1946 and 1964 who are now aged 50-70. Some will be in drugs services; some will be in the recovery community, AA, NA etc. Others may be in alcohol services or they may be working in the drug and alcohol sector. Many will have no contact with drugs and alcohol services and will not in their wildest dreams imagine they are at risk. In Scotland guidelines already state that anyone presenting with abnormal liver function at the GP should be tested for hep C. There is also clear head of steam in Scotland to see hep C testing become much more standard across the NHS.

Not for the first time I find myself wishing England was run from Edinburgh.

The tip of the iceberg

We have just seen the highest drug related deaths figures ever; these figures record deaths from drug poisoning, but services providers know that this is just the tip of the iceberg. There is an alarming increase in the numbers of people dying in treatment as a result of chronic ill health.

An aging population of people with drug and alcohol problems are becoming unwell and often receive a poor service from the NHS in relation to their wider health needs because they struggle to navigate an increasingly complex treatment system and are often treated as undeserving by both our health system and local authorities that are under extreme financial pressure.

Imagine that you are living with a completely treatable infection, that left untreated, can cause a life changing illness (for some ultimately death) and the health service said you had to wait until you developed this life threatening related illness before they would treat you. You would rightly be outraged.

This is precisely what is happening to those who have hep C despite a range of new highly effective NICE approved treatments, with few side effects, that offers a cure for hep C. Only 3-4% of people a year currently get treatment. Unless you have a hep C related illness e.g. cirrhosis you are unlikely to be treated and even then it will have to be serious enough. Many of those with hep C who are not deemed ill enough to deserve treatment do not have their condition adequately monitored.   Sadly many GP’s tell me that they monitor those with hep C who appear to be in reasonable health but then suddenly get ill very quickly, with often fatal consequences.

This discrimination happens because around 90% of those with hep C contracted it via injecting drug use. Although many will have contracted hep C many years ago and have moved away from substance misuse they are often treated with suspicion. They are perceived as unreliable patients on whom expensive treatments are not to be wasted. Alongside this those most at risk of spreading hep C to others are seen as chaotic and thus undeserving or unsuitable.

Naloxone is a drug that saves lives by temporarily reversing the effects of opioid drugs. It costs £18 or less per pack and is recommended by the ACMD, WHO, Public Health Ministers and PHE who actively support its wide provision to those at risk of opioid overdose. Despite this many local authorities, including Liverpool, are still refusing to allow treatment providers to distribute it, denying people access to a life saving tool at a time when we are seeing a significant jump in opiate related overdose deaths. Some years ago Liverpool hosted an international harm reduction conference recognising its historical place in the history of harm reduction in drugs services.

In 2014, (after over 34 years of working in the drug, alcohol and criminal justice sectors, and as Blenheim celebrated 50 years of social action) I committed both Blenheim and myself to do everything in our power to ensure that the worlds best evidenced based treatment system was not destroyed by dogma, localism and cuts to public sector finances. Whilst recovery and ending dependency are hugely important we believe harm reduction is equally as important. Some of our sector’s best work is the daily interventions to keep people alive until they are ready to change.

I was concerned then about disinvestment by local authorities in the drug and alcohol treatment sector to fund a wide range of other equally important and underfunded public health priorities. The subsequent cuts and impending disinvestment have exceeded even my most pessimistic view of the future. We face a return to a post code lottery of underfunded services, ill prepared for the next wave of alcohol and drug dependency or to support those in often chronic ill health.

This year, 2016-17, we are seeing a 30% reduction in funding for drug and alcohol services with local authorities facing often impossible challenges, in the current financial climate, in meeting even their statutory responsibilities. With the ring fence coming off the public health grant and its abolition following the proposed introduction of Business Rate Retention, it will become increasingly difficult for local authorities to justify spending on drug and alcohol services when they cannot adequately fund services they are mandated to deliver. There is an urgent need to make the provision of a full range of drug and alcohol treatment services a statutory responsibility for local authorities.

To quote Collective Voice, an organisation part funded by Blenheim along with other large providers:

“Recent reduction in heroin use has been concentrated amongst the under-30s leaving behind a drug treatment population who are increasingly in frail health because of the cumulative impact of decades of drug addiction, problem alcohol use, poor diet, fragile mental health, and smoking. This leaves them significantly more vulnerable than their age would indicate and places a significant burden on mainstream NHS clinical services.

“Despite this, drug and alcohol treatment is not a natural priority for local authorities, the NHS or public health professionals. This places this area of activity at particular risk from the negative consequences of the proposed replacement of the ring-fenced Public Health Grant with a system of business rate retention.

“Drug and alcohol treatment provides for an unpopular and marginalised population seen by local electors, and politicians as undeserving, particularly in comparison to alternative service user populations such as children and the elderly. Without someone in local systems to champion the agenda there is a continuing risk of deprioritisation and disinvestment.”  

There is growing evidence that local politicians feel that drug and alcohol treatment is an NHS function rather than a local authority public health function. Many are already uncomfortable at the proportion of PHE funding to local authorities that is currently spent on drug and alcohol provision.

At Blenheim we work with a wide range of organisations and government departments to fight for drug and alcohol services and to ensure people in treatment aren’t discriminated against. In doing so we are supported at Westminster, by many hard working politicians from all major parties, who help us hold Government to account.

Elimination

Today is World Hepatitis Day, with the theme of Elimination.

2016 is a crucial year for addressing hepatitis. At the World Health Assembly in May, the World Health Organisation (WHO) Member States endorsed the first ever draft Elimination Strategy for Viral Hepatitis, with the ambitious goal to eliminate hepatitis as a public health threat by 2030.


Hepatitis C is a blood-borne virus that can lead to scarring (cirrhosis) or cancer of the liver if left untreated.

The virus is a serious infectious disease, but with the right early diagnosis and treatment, hepatitis C can be curable.

Hepatitis C disproportionately affects the marginalised groups of people Blenheim works with, including intravenous drug users, prisoners and immigrant populations. Public Health England reported that in 2015 50% of injecting drug users have hepatitis C, up from 45% in 2005.

Therefore, for years, Blenheim has called on NHS England, Public Health England and the Department of Health to make the elimination of hepatitis C a clear priority. We advocate that substance misuse services, the NHS and local authorities must do more to test, treat and cure those with hepatitis C.

In 2014, Blenheim became a member of the Hepatitis C Coalition – along with a group of leading clinicians, patients, organisations and other interested parties, we are committed to the reduction of morbidity and mortality associated with hepatitis C, and its eventual elimination.

To achieve elimination of hepatitis C, we need:

  • greater awareness about the virus,
  • better prevention – including harm reduction such as injection safety,
  • increased testing and diagnosis, and

Greater Awareness, Better Prevention

Injecting drug use continues to be the most important risk factor for contracting the infection because the virus is able to directly enter the blood stream via a needle. Approximately 50% of intravenous drug users are thought to be infected with the virus. Other forms of drug use, like sharing bank notes or straws to snort powders, also pose a significant risk of transmission. More information about risk factors can be found on the Hepatitis C Trust website.

Increased Testing and Diagnosis

You can always go to your GP or GUM Clinic and ask to be tested for the virus. If you are accessing a drug or alcohol service then you should speak to your keyworker or a member of staff about having the test. Services can provide a blood-borne virus (BBV) test for you, but if this isn’t available then they will support you to arrange this with your GP, or another healthcare provider.

Hepatitis C is a ‘silent epidemic’ because it is often asymptomatic in the early stages and can be difficult to diagnose. This means that in most cases, the symptoms are absent, mild, or simply vague. It is important to get tested if you have ever shared injecting equipment, even if it was many years ago, because you may not experience any symptoms. Although there are no set symptoms, common complaints related to the disease can include:

  • Problems with concentration and memory
  • Chronic fatigue
  • Flu-like symptoms, including sweating or headaches
  • Alcohol intolerance
  • Depression or mood swings
  • Digestive problems, including nausea, loss of appetite or weight loss
  • General aches and pains, or specific discomfort in the area of the liver

These symptoms can usually be alleviated with therapy. However, the symptoms people suffer are not necessarily an indication of whether they have liver damage or not.

Better Treatment

Anti-viral therapies have advanced greatly in recent years and are now able to clear the virus, thus preventing the progression of liver disease. These NICE approved treatments cure the virus for around 70-80% of people. Treatment has been shown to reduce both inflammation of the liver and fibrosis. There is also evidence that cases of cirrhosis can sometimes be reversed through treatment.

Decisions about treatment options should be made with your doctor. You can also contact the Hepatitis C Trust’s helpline on 0845 223 4424 for more information.

Blenheim: Test, Treat, Cure

In order to address the low levels of hepatitis treatment amongst our service users, in 2014/15, we introduced a range of initiatives in partnership with PHE, Hepatitis C Trust and the London Working Party on Hepatitis C. We have trained over 100 hepatitis champions throughout the organisation to identify the levels of hepatitis amongst our service users and to support the people affected with accessing treatment.

And progress is being made. Last year, 94% of Blenheim’s new clients that inject drugs or have previously injected drugs, had a Hepatitis C test – an increase from 87% in 2014/2015.

Furthermore, we are currently supporting the I’m Worth… campaign, which has been created to support people living with hepatitis C. It aims to address the stigma that many people with hepatitis C face, encouraging and empowering people living with hepatitis C to access care and services. It emphasises that everyone living with hepatitis C is entitled to the best care.


To find out more about Hepatitis C, please take a look at the factsheet on our website.

Test, Treat, Cure.

It’s time to stand and fight

Disinvestment in drug and alcohol treatment is putting lives at risk.

Blenheim has four strategic aims: number two is to actively and effectively campaign on behalf of people stigmatized by alcohol & drug use. So here goes…

Cuts in drugs and alcohol funding, along with the lack of political leadership, along with a lack of priority in England is having a major negative impact on some of the most vulnerable people in our communities. The moving of drugs funding into Public Health England (PHE), where illicit drug use is not a strategic priority, has given a green light to local authorities to disinvest in substance misuse services.

There has never been a more urgent need to have clear English government leadership spelling out the responsibilities of local authorities along with the levers to ensure they deliver. What we have is localism, a post code lottery, a government washing their hands of responsibility like Pontius Pilate and senior political figures actively conspiring to undermine evidenced based practice. Indeed it is not clear whether under the current Government in England will even have drug and alcohol policies.

We are witnessing the end of the best drug and alcohol treatment system in the world and the time to act to defend it is now. Its decline is being marked by lost opportunities and an increasing death toll as we fail to respond to rapidly increasing numbers of drug related deaths, health needs, and fail to tackle issues such as hepatitis C, HIV and liver disease. We are also failing to resource “harm reduction”, a phrase banished from the Government lexicon like a dirty word.

Over the next 3 years, spending on drug and alcohol services is predicted by some officials to fall between 25% and 50%.

Prior to Drugscope falling victim to Government cuts it’s recently published State of the Sector Report revealed;

  • Evidence of deep and widespread disinvestment and planned disinvestment in drug and alcohol services. (Over 70 services indicating cuts in funding with an average net reduction of 16.5%)
  • A third of local authorities indicating decisions to reduce funding in 2014/15 and 2015/16
  • The massive scale of re-commissioning and tender renegotiation leading to the widespread disruption of services. (54% of services since Sept 13 with another 49% indicating re-commissioning between Sept 14 – Sept 15)
  • Cuts in frontline drug and alcohol staff across the country and increasing caseloads
  • Worsening access to mental health services
  • Worsening provision of outreach services
  • Worsening access to housing and resettlement provision
  • Worsening access to employment support
  • Lack of provision for older clients
  • Negative impact of prison staffing cuts on access to treatment
  • Little confidence in Police and Crime plans and Joint Strategic needs Assessments/Joint Health and Wellbeing strategies reflected local needs
  • Reduction’s in harm reduction services at a time of increases in drug related deaths
  • Commissioning processes that discriminate against excellent small and medium-sized organisations delivering excellent local services

There has been a change in the focus away from the needs of vulnerable heavily addicted people with often multiple economic, social and health problems onto the needs of the wider population. The not insignificant needs of this far larger population will mean fewer resources to support those heavily dependent on drugs and alcohol with multiple and complex needs.

The provision of services to people with significant and multiple needs is being disrupted by frequent re-commissioning and system redesign. It has a hugely detrimental impact on the ability of organisations to care for people accessing services. It has had a significant negative affect on staff morale and the ability of organisations to invest their resources into the provision of services which are increasingly diverted to funding tendering capacity. Sadly at Blenheim, and I suspect other providers, staff work through the night not to help those in need but to win the right to deliver services with significant reductions in funding, challenging targets and poorly thought out PbR requirements. The costs and transfer of liabilities to the voluntary sector are driving all but the largest providers out of existence.

There is an increasing failure to address housing, complex needs, mental health and employment. There is a shocking lack of access to the employment market for people with a history of drug and alcohol misuse particularly where this is associated with criminal convictions. Specialist services addressing employment for this group were decimated in the Government commissioning of the Works Programme. Changes to welfare benefits have impacted detrimentally on housing stability and the level of homelessness experienced by those who are drug and/or alcohol dependent is rapidly increasing. The decommissioning of many NHS providers is resulting in a decline in many areas in access to specialist mental health service provision.

People with drugs and alcohol problems suffer prejudice and discrimination particularly if they commit the crime of being poor. Sadly this right to discriminate is enshrined in UK equality legislation. Yet again we see policies being suggested which focus on drug and alcohol users as being the undeserving benefit claimant if they are not in treatment. A requirement on local authorities to provide employment paying the living wage would be more constructive. It’s often not that people with drugs and alcohol problems are reluctant to work but that employers are reluctant to provide employment. We need a system of regulation that supports those experiencing problems with alcohol and drugs rather than criminalizing and stigmatizing people for being ill and vulnerable.

People who inject drugs are the group most affected by hepatitis C in the UK: around 90% of the hepatitis C infections diagnosed in the UK will have been acquired through injecting drug use. Across the UK 13,758 hepatitis C infections were diagnosed during 2013.

Around 2 in 5 people who inject psychoactive drugs such as heroin, crack and amphetamines are now living with hepatitis C, but half of these infections remain undiagnosed. PHE state “Interventions to diagnose infections earlier, reduce transmission and treat those infected need to be continued and expanded, with the goal of reducing the prevalence of hepatitis C.”

Often, hepatitis C infection remains asymptomatic and is only diagnosed after liver damage has occurred. Left untreated hepatitis C infection can result in severe liver damage, liver cancer, liver failure and death.

This year we will leave 97% of people with hepatitis C untreated. Imagine the outrage if this was breast cancer or lung cancer, particularly if the death rate was climbing year on year as it is with hepatitis C.  Now imagine if you could completely cure everyone with breast cancer or lung cancer but decided to only treat 3% a year. Outrage! This is precisely what happens to those with hepatitis C.  There is a real risk now that even this appallingly low figure will become unachievable as a result of changes in funding.

Lets move on to Naloxone: the failure of Government to roll out Naloxone in England along with a lack of emphasis on harm reduction and disinvestment in drugs services are likely factors in a 32% increase in heroin/morphine related deaths.

The ONS figures (2013) for drug related deaths show that there were 765 deaths involving heroin/morphine; a sharp rise of 32% from 579 deaths in 2012. Many of these fatalities could possibly have been prevented by the use of Naloxone as an intervention.

Naloxone is a medicine that is a safe, effective and with no dependence-forming potential. Its only action is to reverse the effects of opioid overdoses. Naloxone provision reduces rates of drug-related death particularly when combined with training in all aspects of overdose response.

The Advisory Council on the Misuse of Drugs (ACMD) undertook a review of Naloxone availability in the UK in May 2012, its report to the Government strongly recommended that Naloxone should be made more widely available, to prevent future drug-related deaths.

Scotland and Wales have national programmes to make Naloxone widely available but there has been no similar programme in England. This has led to a failure across England to supply Naloxone in over of 50% of local authorities.

Overdose remains a leading cause of death among people who use drugs, particularly those who inject. Increasing the availability and accessibility of Naloxone would reduce these deaths overnight. Perhaps we should conclude that English opiate users lives are worth less than the Welsh and Scottish ones.

There is a growing palpable sense “old school activism” in the sector. There’s no time, no money, no staff, no resource but up and down the country people, organisations and service user groups are rising to the challenge. There is a palpable sense of determination; the power of networking is gearing up, sharing ideas, inspiration and the need to stand strong in the face of cutbacks.

Unless Service User Groups and a powerful alliance of GP’s, NHS and third sector providers and charities are prepared to fight in the corridors of Whitehall and Westminster, and on the beaches of local authority cuts, I fear that the worlds best treatment system is about to be decimated in 2015/16. I fear for the people we help and I pray that I am wrong. It’s time to stand and fight.

Tories – England needs you to show strong, inclusive leadership

England has the best drug treatment system in the world; it exists because of the vision of far sighted people from all political parties and the dedication of amazing staff, organisations, charities and public officials over the last 50 years.

Cuts in drugs and alcohol funding, along with the lack of political leadership and the lack of priority in England may in the coming years have a major negative impact on some of the most vulnerable people in our communities.

The moving of drugs funding into Public Health England, where illicit drug use is not a strategic priority, has given a green light to some local authorities to make heart breaking cuts in services, Birmingham being one example.

There has never been a more urgent need to have clear English government leadership matching that of Scotland. Spelling out the responsibilities of local authorities along with the levers to ensure they deliver. I would like the next government to take clear action to protect the best drug and alcohol treatment system in the world. Provide better opportunities for those in recovery and significantly reduce the death toll by committing to harm reduction, responding more robustly to rapidly increasing numbers of drug and alcohol related death and serious illness. I also would like to see a greater emphasis on responding to other health needs of those with drug and alcohol problems.

Any government with an ounce of decency would follow the Portuguese example and move rapidly to bring hepatitis C treatment up to the standards of HIV treatment. If hepatitis C treatment was running trains only 3 in every 100 would get to work and many would die on the platform.

I would like to see the incoming government do the following things with drug and alcohol treatment policy and funding;

  • Identify and appoint a single Senior Government Minister to be responsible for drug and alcohol policy, accountable to Parliament
  • Commit to evidenced-based practice
  • Ensure everyone in recovery from drug and alcohol problems has opportunities to rebuild their lives
  • Develop a national harm-reduction strategy to reduce drug and alcohol related deaths and ill health
  • Widen of the access to residential treatment focusing on need rather than the failure of everything else
  • A minimum unit price for alcoholic drinks is introduced along with health warnings on labels and prominent display of calorie’s
  • Create a national commissioning Ombudsman, to ensure transparency and accountability for local commissioning decisions
  • Widen the remit of the Care Quality Commission (CQC) to include all local authority-commissioned drug and alcohol services
  • Ensure the competence and appropriate accreditation of the drugs and alcohol sector workforce, in line with other areas of health and social welfare, by investing in an independent association
  • Follow the guidance provided by the Advisory Council on the Misuse of Drugs (ACMD)
  • Reinvigorate independent research on drugs and alcohol to fill the gap left by the UK Drug Policy Commission (UKDPC)
  • Ensure comprehensive access to the life-saving drug Naloxone, across the whole of the United Kingdom, in line with World Health Organization (WHO), ACMD and public health guidelines and advice.
  • Ensure the availability of services and National Institute for Health and Care Excellence (NICE) -approved treatments for all patients diagnosed with hepatitis C, in line with international guidelines
  • Everyone in recovery from drug and alcohol problems has opportunities to rebuild their lives,
  • Ensure access to safe and secure housing, employment and meaningful activity and support for health and mental health
  • Investment is provided for a national programme to tackle the stigma and discrimination experienced by people in recovery from drug and alcohol problems
  • ensures expenditure on drugs and alcohol treatment is maintained at a time of severe budgetary pressure on local authorities

“Do not let me die”

At the beginning of last year (2014) I committed Blenheim to campaign on behalf of people with drug and alcohol problems, more specifically for the organisation to campaign around the issues of declining investment in services and the failure to treat those with hepatitis C. By the middle of 2014 I had added the failure to provide access to the life saving drug Naloxone and the need to review drugs legislation to bring it into the 21st century. Interestingly a view shared by a majority of ex Government Ministers responsible for drugs and a significant proportion of ex Chief Constables. Well done Nick Barton the Chief Constable in Durham and Norman Baker MP for daring to say so whilst still in office.

At a time of public sector cuts and funding for drugs and alcohol services delegated to Local Authorities along with a lack of clarity about what they are legally required to provide, there has never been a more urgent need to have clear English government lead spelling out the responsibilities of Local Authorities along with the levers to ensure they deliver. What we have is Localism, a post code lottery and a Government acting like Pontius Pilate. Over the next 3 years spending on drug and alcohol services is predicted, on average, to fall between 25% and 50%.

I and other dedicated determined people have meet with Ministers, MP’s, officials, signed letters of outrage, letters consensus, got questions asked in the House of Lords and the House of Commons and received promises of change and assurances of a Government commitment to action. Thank you to those committed MP’s, Lord’s and Baroness’s who have supported our cause.

Such promises vanish quickly into interdepartmental committees, policy forums and committee sign off, and if all else fails denial of responsibility or power and the words “the funding and responsibility has been devolved we no longer have control and few levers”.

Over the last year there has been a lot of talk, lots of meetings, and little action or change on the ground. There has been little improvement in access to hepatitis C treatment. We still fail to treat 97% of people with this life threatening illness. Imagine the outrage if this was breast cancer or lung cancer, particularly if the death rate was climbing year on year as it is with hepatitis C.  Now imagine if you could completely cure everyone with breast cancer or lung cancer but decided to only cure 3% a year. Outrage! This is precisely what happens to those with hepatitis C.  There is a real risk now that even this appallingly low figure will become unachievable as a result of changes in funding.

Lets move on to Naloxone, I am going to plagiarise an article by Chris Ford and Sebastian Saville, otherwise known as creative swiping (sorry).

What do we do with a medicine that prevents certain death for people with a particular condition—and is safe, cheap, and easy to administer?

  1. Immediately make it accessible to those who can administer it when such a life-or-death situation arises.
  2. Make it available to no one except doctors and emergency room workers.
  3. Endlessly debate the particulars of how and when it should be widely introduced.

If you picked number one that would seem to be a reasonable choice. Unfortunately, it would also be incorrect. With few exceptions, answers two or three apply in the vast majority of the world when it comes to the medicine naloxone.

I was outraged when I heard of a 3 year delay in responding to the ACMD recommendations to make Naloxone more available to families, peers and friends. Blenheim hosted a summit and a wide coalition of agencies and service users formed the Naloxone Action Group (NAG) England. We quickly found a wider scandal of widespread failure across England to supply Naloxone to anyone in over of 50% of Local Authorities.  This is shameful and NAG England will seek to hold authorities accountable.

Overdose remains a leading cause of death among people who use drugs, particularly those who inject. Increasing the availability and accessibility of Naloxone would reduce these deaths overnight.

We await important guidance from PHE on Naloxone, due this month, which local authorities are unfortunately free to ignore unless we give those who are failing to implement a reason to change and somehow hold them to account.

Now this could get depressing and I could go all Shakespeare on you and the following Macbeth quote springs to mind.

“To-morrow, and to-morrow, and to-morrow,

Creeps in this petty pace from day to day

To the last syllable of recorded time,

And all our yesterdays have lighted fools

The way to dusty death.

Out, out, brief candle!

Life’s but a walking shadow, a poor player

That struts and frets his hour upon the stage

And then is heard no more: it is a tale

Told by an idiot, full of sound and fury,

Signifying nothing.”

But last week something amazing happened in Portugal!

“Do not let me die, I want to live” shouted Jose Carlos Saldanha a patient awaiting treatment for hepatitis C, to the Minister of Health during a hearing taking place at a Parliamentary Committee on Health before being escorted from the room.

José Carlos Saldanha was attending several hours of debate on access to treatment for hepatitis C.  He was accompanied by the children of two other patients with hepatitis C one of whom had recently died. Speaking to journalists outside José Carlos Saldanha said that “only in this country, do you see this little shame and that the minister is a “killer” (unfortunately Jose is wrong the same is true in England).

Interviewed on TV the following day José Carlos Saldanha revealed that his treatment had been agreed a year ago and spoke of a “war” that has waged as he struggled to gain access to treatment.

“I am not an imaginary patient, I’m real. The war has been great and my air time is very short. […] There is a cure and I do not understand what they are waiting for.”

This issue has now been a leading political story in Portugal for the last week with the politian’s under fire not only for the failure to supply treatment but for the way in which they initially treated Mr Saldanha and the two people with him.

A week later and Mr Saldanha has started hepatitis C treatment and Portugal is well on the way to putting in place a national programme of treatment for those with hepatitis C.

The extortionate prices of new hepatitis C treatments are also under attack as Medecins du Monde an NGO are challenging the patent on Sofosbuvir with the possibility of dramatic reductions in cost.

Later this month is the DDN Service User Conference, perhaps the time for talking is over, perhaps the time for war is here, and perhaps the time to demand the right to treatment is now. The time to demand “Do not let me die” has arrived.