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.

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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.

Negative Impact

At Blenheim we have serious concerns about the commissioning, procurement, tendering, payment terms and the application of payment by results in the drug and alcohol sector. We also have great sympathy for the impossible funding environment that Local Authorities have been placed in by Central Government. This is not helped by the latest 6.2% cut in Public Health England (PHE) funding to Local Authorities, a £200 million in year cut. We share the growing concern that cutting £800 million from the PHE budget over the next four years will only be the tip of the iceberg, with some expecting the PHE budget to be decimated by the spending review in November or in subsequent years. Given that drug and alcohol treatment and indeed all PHE services provided by Local Authorities are subject to the NHS constitution it is outrageous that PHE spending, which is mainly invested in services for stigmatised and vulnerable groups is under attack.

It is right that local authorities now responsible for the provision of community based drug and alcohol treatment in England have a process for retendering the work provided to them by organisations such as Blenheim, however there needs to be a level playing field for charities of varying sizes, large private sector companies, NHS and local authorities. More importantly any recommissioning needs to be aware of the impact on service users.

Poor and frequent commissioning and procurement has a number of serious consequences not least of which is the cost. An exercise done by a provider to quantify the costs of tendering services over 10 years ago came up with a figure of £300,000 as the cost expended by all bidders and the commissioning authority per tender. Unintended impacts include deteriorating service provision, poor staff morale, and more importantly the fact that transitions between providers along with early exits from treatment are known factors in drug and alcohol related deaths. For example 1 in 200 injecting heroin users released from prison die within a month of release.

Increasingly charities like Blenheim seem to be in the business of tendering rather than in the business of caring for people in desperate need. In the last two years nearly 100% of drug and alcohol services have been through retendering processes according to a Drugscope survey.

A report, ‘Review of Alcohol Treatment Services’ published in August 2015 by the Recovery Partnership funded by the Department of Health into the state of alcohol services raises serious concerns about the impact of the current commissioning environment as did the ‘State of the Sector’ report, by Drugscope in 2014 into drugs and alcohol services.

Transfer of Financial Risks

The move from NHS to Local Authority commissioning has often seen a switch from payment in advance to payment quarterly in arrears. This has had a significant negative effect on cash-flow within many provider organisations. Many charities are facing increasing delays in Local Authorities paying invoices some waiting up to 6 months for payment in relation to money expended on delivering contracts. There is often little meaningful compliance with new regulations requiring payment of undisputed invoices within 30 days in the Public Contracts Regulations 2015.

Payment by Results (PbR)

Inappropriate poorly designed PbR schemes are a significant financial risk to charities. This is due to delayed payment of the PbR element for lengthy periods of time which impacts on cash-flow and because PbR is usually in our sector set against the cost of service delivery rather than as an incentive above this.

PbR is often set against stretch targets, which is appropriate where PbR operates as an incentive scheme. However almost all PbR schemes operate in our sector as repayment or non-payment schemes with funding deducted from core operating costs when often aspirational/stretch targets are not met.

When used PbR would be better to be clearly separated from core costs in contracts and be an incentive for excellent performance. Where non-payment or repayment conditions apply these we believe should be set in relation to under performance rather than against stretch targets and be clearly labelled as such and linked to processes in the contract related to under performance.

Procurement, tendering and contracts

All providers in the current environment need to accept that the tendering of services is here to stay and that charities like Blenheim will win and lose contracts, however we think there is a case to be made to increase from the standard 3 year contract to a 7-10 year minimum contract length or possibly longer to avoid regular disruption to the treatment of a vulnerable group of people. Such a move would allow providers to invest in equipment, staff training and buildings of the highest quality and build long term community links.

A recent ACMD report “How can opioid substitution therapy (and drug treatment and recovery systems) be optimised to maximise recovery outcomes for service users?” Published in Oct 2015 stated

“The ACMD has early evidence of the negative impacts of frequent re-procurement on local drug treatment systems and service users’ outcomes. It is very concerned that this ‘churn’ in the system, together with significant cuts in resources, is mitigating against stability in drug treatment systems, hampering quality and the implementation of evidence-based interventions (especially if they are deemed ‘expensive’) and may result in negative impacts on recovery outcomes. Furthermore, localism and the lack of ‘levers’ by bodies such as Public Health England and the Local Government Association may hinder government efforts to positively influence local systems.”

Local Authority contracts are often inequitable and allow cancelation by the local authority with three or six months notice, paying little regard to provider infrastructure costs and lease commitments. Often providers are asked to agree to contracts as a condition of being allowed to tender.  We would like to see contracts that are far less easy for Local Authorities to cancel once signed with the expectation that any but the most major changes required are done via contract variation rather than retendering. We fully understand and support contracts enabling cancellation where there are clear performance issues.

Minimum Turnover Requirements

At Blenheim we are concerned about the minimum turnover requirements that increasingly limit the ability of even large and major charities to tender for contracts they currently deliver. This is where to bid for work you have to have a minimum organisational turnover of say £10 million or £15 million. Whilst we realise this is a way of assessing the ability of an organisation to financially manage large contracts we believe it unfairly discriminates against smaller charities many of whom can easily manage larger contracts and that more sophisticated and more appropriate methods of assessing organisations should be applied.

I am aware of many smallish and medium sized charities that have not been able to bid for their existing contracts in their own right. This forces them into shot gun marriages with other charities as sub-contractors. Partnerships have a lot to offer and Blenheim is in many great and highly effective partnerships but they rarely work well when they are marriages of convenience or haste.

Tendering Processes

At Blenheim we are deeply troubled about the many instances of poorly managed tendering processes which create huge wastes of time and effort both at commissioning level and within provider organisations. Issues of concern include;

  • A lack of transparency about the process.
  • The number of tendering processes which have to be suspended due to flaws in the process.
  • A lack of knowledge about tendering and procurement within tendering teams
  • A lack of understanding by many commissioners of TUPE rules
  • A significant pension liability on incoming organisations where NHS or LA is the outgoing organisation particularly where down sizing is managed via a retendering process transferring liabilities for redundancy whilst often hiding cuts.
  • Unworkable specifications
  • Transfer of risk from Local Authorities to providers via Payment by Results with poor data to assess risk and often in relation to performance targets the provider has little control over.

Equally we would reflect that we have seen some excellent examples of commissioning regardless of whether we were successful.

Conclusion

If we want a thriving drug and alcohol sector we need to create a funding and commissioning environment where it can survive. Otherwise we face the risk of a choice of four or five mega charities as all but the largest go the way of the corner shop and the local butcher. Like banks and NHS Trusts these large charities maybe too big to let fail, but get into financial difficulty some will in the not to distant future as cuts in funding and huge public sector liabilities catch up with them.

HEP C SCANDAL – failure to provide treatment or baseline data

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.

It’s time to stand together to protect the best drug and alcohol treatment system in the world

At a recent conference I was asked to speak on what the biggest changes to the public sector for a generation felt like at the coal face for an organisation like Blenheim.

These changes include;

  • Re-organisation of the NHS
  • Establishment of Public Health England and the transfer of public health funding and responsibilities to local authorities
  • Death of the National Treatment Agency as it is swallowed by Public Health England
  • Localism agenda
  • Police and crime commissioners
  • More procurement lead commissioning structures
  • Payment by Results
  • Increasing role of CQC in our work

I took a straw poll of staff at head office on what the changes felt, looked and smelt like and the consensus answer was uncertainty, the unknown and a leap into the dark.

Uncertainty is the mother of anxiety and this certainly describes how it has felt over the last year as we worried about whether some Hitchcock like Politician with a knife would make cuts in services and funding without rational thought about the consequences for our service users.

I spent much of the last year campaigning with others to ensure that money was not disinvested from our sector and against the evils of the Works Programme and Payment by Results.

There remains huge uncertainty about what the changes will look like going forward,  in the end I have decided to keep calm and pretend I know what Blenheim is doing and what the changes will mean for us as we approach April 2013, which feels like the great millennium bug fears of 2000. As I speak to managers, commissioners, CEO’s, Politician’s and senior civil servants it is clear they are all doing the same.

The good news is that central government allocations to local authorities for public health seem to be generous, particularly in the age of austerity.  For now everyone is getting to grips with new structures, roles and relationships and I see little appetite or capacity for major change in 2013/14.  However over time we will start to see some real changes in what is commissioned as we move to local agenda’s and a whole population rather than a complex need focus, with the needs of the many outweighing the needs of a few.  We must embrace these changes with open arms whilst continuing to advocate for the needs of those with whom we work.

We have the greatest treatment system in the world but if we are to keep it we need to fight for it, love it, protect it; and embracing change, innovation and new priorities; develop it.

Perhaps the biggest threats are competitive tendering processes and the culture of competition it forces on agencies, who otherwise, would work together collaboratively in the interests of service users. There is little evidence that current commissioning and procurement processes improve service delivery and lots of evidence that they do the opposite.

The drug and alcohol treatment sector has in my view a clear mission to end dependency by enabling people to change and along the way we also have a duty to help people improve their health, quality of life and reduce their involvement in risky behaviour and criminal activity.

Excellent services and staff work tirelessly up and down the country making a positive impact that not only improves the health of the individual’s drug and alcohol users but has a positive impact on their families and friends. People using our services are not just people with drug and alcohol problems they are partners, fathers, grandmothers, children, brothers, sisters, friends, work colleagues and carers.  Helping them beat dependency helps put the joy back in so many lives.  The ripples of the work undertaken by staff and agencies up and down the country spread out across every community. It’s worth every penny of the £billion that is spent on it and its worth fighting for.

It is time for us to collaborate and come together as a sector to fight for what we believe is important ending dependency, enabling recovery, hope, and better lives for those with whom we work.  It’s time to challenge the damaging commissioning and procurement culture imposed on us by European procurement rules which is damaging our capacity to do this.  Of course commissioners should have the right to re-tender and re-commission services but this should not be arbitrary process and should be needs lead.  There is a need to develop and explore concepts of co-production between local authorities and the third sector.