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.

How are funding cuts affecting drug and alcohol services?

The State of the Sector report, conducted by the Recovery Partnership, is documenting serious concerns about the declining ability of the substance misuse sector to meet the needs of those it serves.

The first survey, covering 2013, provided a snapshot of the experiences of drug and alcohol treatment services as they entered a new delivery landscape. This landscape was characterised by the closure of the National Treatment Agency (NTA) and its absorption into Public Health England (PHE), as well as the transfer of budgets and commissioning responsibilities for substance use services to local authorities.

While the first report found no evidence of deep and widespread disinvestment, in its second year (2014) the survey found that many respondents were experiencing or anticipating substantial funding reductions. This trend has continued into 2015, with a considerable proportion of both community and residential providers reporting a reduction in funding. Overall, the 2015 report finds that 38% of community drug services and 58% of residential services reported a decrease in funding. Given the announcement in the Autumn Spending Review that public health funding will be reduced by 3.9% per year for the rest of the current Parliament, challenges around resourcing safe and high quality services clearly remain.

Reductions in funding are causing significant disruption to service delivery. In London, reliable sources have indicated that over the last five years up to 50% of the funding for substance misuse services has been cut. The impact of cuts can include; larger caseloads, declining access to workforce development, limited core services, less outreach, less access to employment, training and education provision, and less capacity to respond to complex needs.

Frequent recommissioning is another disruption to service delivery. The 2015 State of the Sector report finds that 44% of services had been through tendering or contract re-negotiation in the previous year and half (49%) expected to go through one of these processes during the year ahead. Furthermore, the income volatility is putting many smaller excellent providers under significant financial strain.

Funding is not the only cause for concern. The challenge of offering effective, joined-up support to service users with multiple and complex needs, and in particular individuals with co-occurring substance use and mental health issues, is a thread which runs through the three reports.

Beyond addressing substance use, the most significant support needs of those using services are: self-esteem, physical and mental health, employment support and financial support and advice. A fifth of respondents in the 2015 State of the Sector report felt that access to mental health services and housing/housing support has worsened over the last year, indicating that better joined-up support for people with dual diagnosis and multiple and complex needs is still required. This is particularly concerning given the documented view in 2014 was that services had got worse. This reflects a worrying downward trend.

I know these concerns are shared by frontline staff, commissioners and providers, and as funds are cut further there is an increasing risk of unmet need and unsafe service models. Unless Local Authorities are careful we may find services being closed as result of serious concerns being identified by the Care Quality Commission. Another risk is Local Authorities are forced to cut substance misuse services to the extent that they can no longer provide community-based alternatives to custody for those with drug and alcohol problems, placing additional pressure on a prison service already in crisis and struggling to cope with drug-use in many establishments.

When the drugs strategy is published this year perhaps the first job should be a long hard look at its affordability.

Shocked and saddened by drug related deaths figures for 2014

At the DAAT conference in early September 2015 I heard the drug related death figures for 2014. Despite having warned people they would be worse than the previous year I was shocked and deeply saddened. I have waited to write this blog to get my thoughts together.

Last year I was shocked by the inaction of Government and many Local Authorities to the 2013 figures.

I was going to talk about the Naloxone Action Group, positive action by the Department of Health, questions in Parliament and early day motions on naloxone. I was going to talk about the fact that since the 2013 drug related death figures came out, I and so many others have worked to try and understand what is happening and the cause.

Personally I believe that increased heroin purity, poor heath and financial pressures on the drug treatment system are key factors in increasing drug related deaths. I also believe that action to increase naloxone availability in England will avert a significant proportion of these deaths. Without naloxone the figures would already have been, in my view, significantly higher.

However the 2014 figures are shocking to me, every death represents a person, perhaps a father or grandmother, certainly someone’s child, grief and the waste of a life. I picture the funerals as a silent rebuke to do more. The figures are the highest since records began.

As you read the statistics below, from the Office of National Statistics, take time to consider the people the figures represent.

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Heroin and morphine deaths rise by two-thirds in the past 2 years.

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Within England, the North East has the highest mortality rate from drug misuse, London the lowest.

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2014 registrations show drug related deaths reaching the highest level since records began.

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Majority of heroin deaths were among the 30-49 year old age groups.

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Males were over 2.5 times more likely to die from drug misuse than females.

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Two issues seemed important to understand after the 2013 figures and they remain the same after the 2014 set. Firstly what is causing the rise in deaths? And secondly what is being done to prevent them?

A naloxone summit, hosted by Blenheim, bought together a campaign for a national naloxone programme in England. Through a FOI request we discovered the true extent of under provision of naloxone with only 32% of local authorities in England saying Naloxone was available. We formed the Naloxone Action Group England to ensure the regulations were changed, to ensure effective guidance was produced, and to ensure provision of naloxone across England. We got MPs to ask a range of questions in Parliament and gained support for an early day motion, sponsored by amongst others the current leader of the opposition Jeremy Corbyn and signed by the current Shadow Chancellor, John McDonald. This was not a party political issue; the EDM was also supported by current Conservative Minister Tracey Crouch. In total 32 MPs signed up to support wider naloxone availability.

Letters to the Minister from the Drug Alcohol and Justice Parliamentary group, chaired by Lord Ramsbotham secured firm assurance that the Government would make the changes recommended by ACMD to make naloxone more widely available from October this year.

Sadly, at the Naloxone Action Group we believe around 50% of local authorities continue to fail to provide naloxone. We will do a further FOI this year.

Meetings at Chatham House with senior officials revealed clear evidence that entering and leaving drug treatment and/or prison are particularly dangerous times for overdose and death. Thus pressure to leave treatment early and failure to adequately manage transfer of those with drug problems from residential settings could seriously endanger lives.

A drug related death summit held at the beginning of this year, hosted by Drugscope, Public Health England (PHE) and the Local Government Association, examined what might be causing the rise and to look at what might be done to reduce overdose deaths in future years. The attendees included policy makers from across government, commissioners, clinical and service provider leaders, and service user representatives.

The key messages from the summit were:

  • The availability of accurate, timely and easily accessible data is important in order to make the appropriate adjustments to policy and practice in order to reduce drug-related deaths;
  • The majority of drug misuse deaths still involve opiates, in particular heroin and methadone;
  • Being in contact with a treatment service would appear to be a significant protective factor for drug-related deaths;
  • Services and practitioners should pay attention to the elevated risk for those in treatment who are regularly overdosing, are drinking excessively, live alone in temporary accommodation or are homeless, or as a result of smoking-related diseases have compromised respiratory systems;
  • Policy makers and commissioners should think about providing timely and accurate alerts to drug users who are not in the treatment system – including drug users who don’t use opiates;
  • Commissioners and services should look at how they could supply naloxone more widely in the community to ensure those vulnerable to heroin overdose (including those not in treatment), their families, peers and carers are able to access the medicine.

Over the last year we have seen PHE nationally, clearly assert the need for action to reduce drug related harm and publish significant guidance on naloxone and reducing drug related deaths. However, at a time when drug related deaths are at their highest ever level, to cut £200million from Public Heath funding to local authorities is truly outrageous.

I am still ashamed to live in a country where things like the PHE £200 million cut happen at a time of evident need and many local authorities look the other way as people die as a result of the negligent failure to follow guidelines and supply naloxone.

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.

People are dying because of a lack of harm reduction and access to naloxone

Lack of focus on harm reduction and shameful failure to roll out naloxone in England is leading to needless deaths. I feel deeply sad and ashamed to be part of a system that is letting this happen.

I believe the failure of Government to roll out naloxone in England and a lack of focus on and dis-investment in harm reduction and drugs services is a factor in the 32% increase in heroin/morphine related deaths. Many people I suspect are now being encouraged to leave treatment before they are ready.

There were 765 deaths involving heroin/morphine in 2013; a sharp rise of 32% from 579 deaths in 2012. Many of these fatalities could have been prevented by the use of naloxone as an intervention.

Naloxone is a medicine that is a safe, effective, with no dependence-forming potential. Its only action is to reverse the effects of opioid overdoses, and it is already used by emergency services personnel in the UK for this purpose. 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 and in May 2012, its report to the Government strongly recommended that naloxone should be made more widely available, to prevent future drug-related deaths.

In Scotland and Wales, successful pilots resulted in national programmes to make naloxone widely available but there has been no similar national programme in England. Scotland has allowed naloxone to be provided to services without prescription, for use in an emergency. This enables Scottish drug treatment and homeless hostel staff to have naloxone ready for use. We urgently need the law in the UK changed to allow this.

Naloxone is available on prescription in England to people at risk of opioid overdose. However, maximum impact on drug-related death rates will only be achieved if naloxone is given to people with the greatest opportunity to use it, and to those who can best engage with heroin users.

The ACMD in May 2012 made 3 recommendations for government to take to maximise naloxone’s role in reducing drug-related deaths.

  1. Naloxone should be made more widely available, to tackle the high numbers of fatal opioid overdoses in the UK.
  1. Government should ease the restrictions on who can be supplied with naloxone
  1. Government should investigate how people supplied with naloxone can be suitably trained to administer it in an emergency and respond to overdoses

Over two years later in July 2014 Jane Ellison Parliamentary Under Secretary of State for Public Health wrote to confirm that Government would act on the recommendations by October 2015 in England. Not only does this shamefully push the issue into the post election long grass it also makes no suggestion of a national programme similar to Scotland or Wales. Perhaps we should conclude that English heroin users lives are worth less than the Welsh and Scottish ones. Think I’m cynical; sources in Public Health England tell me a roll of naloxone is not on their agenda and they have no current plans.