Naloxone advocacy

NaloxoneLet’s get it out there

The day saw repeated calls for life-saving, and cost-effective, naloxone to be made more widely available. 

‘The case for take-home naloxone is quite clear,’ activist Kevin Jaffray told the morning’s Naloxone – keeping up the campaign session. ‘So why isn’t it in the hands of the people who need it?’

While take-home naloxone programmes in Scotland and Wales had led to a fall in opioid-related fatalities, England saw a 32 per cent rise in deaths in 2013. ‘That’s because we have no national programme,’ said Jaffray. ‘It’s disgraceful. I’m not saying it’s a magic wand, but the fact is we could have saved at least half of these people.’

Naloxone had ‘been around since 1961’ he told the conference, and endorsed by the WHO, NTA and ACMD, among many others. ‘This medicine saves lives,’ he stated. ‘So why are we still having to fight?’ Many of the arguments against naloxone – that it encouraged people to take more drugs, or deterred them from seeking support – were myths, he said.

3The arguments that come up time and time again when we’re campaigning in local areas are comical. Naloxone will bring people into services, not the opposite.’ In fact it had the power to act as a turning point in people’s lives, he stressed. ‘When I OD’d and was brought back by naloxone, I accessed services. Because it scared the shit out of me.’

An overdose situation could add up to £20,000 per person in costs to the emergency services, while an overdose prevented from becoming fatal by naloxone cost around £400. ‘Not only is that a £19,600 saving, you’ve still got a human being breathing and a family kept together,’ he said. ‘We want the Medicines and Healthcare Products Regulatory Agency (MHRA) to publish draft regulations on naloxone now, and we also want Public Health England to be more active in local direction around take-home naloxone programmes.

1‘We have to work with what we’ve got,’ he told the conference, which meant user activism was vital. ‘You’re out there on the frontline. Form naloxone action groups in your local area, get trained and pass the training on in whatever capacity you can. Lobby your local commissioning boards, MPs and health and wellbeing boards. Anywhere you can get this out there, do it.’

Take-home naloxone guidance had just been published by PHE, Rosanna O’Connor told the conference. This would act as a ‘nudge to local authorities and partners’ to promote wider availability in advance of the change to medicines regulations – which currently only allow naloxone to be supplied on a prescription basis – expected in October.

Meanwhile, the lunch break saw an Action on naloxone session chaired by Niamh Eastwood of Release and Mat Southwell of CoAct, looking at what could be done to challenge lack of availability. Delegates were handed a list of local authority areas that were not providing naloxone – a substantial number.

‘How far is it being rolled out?’ asked Niamh Eastwood. ‘It looks like even in a number of areas where they’re saying “yes, we’re providing it” they’re not doing it sufficiently.’ And for those local authority areas that had stated they were not providing it, she said, ‘we need to find out why. Whose decision is this? There’s no reason why it shouldn’t be available. It’s cheap, and it saves lives’.

2Release now intended to challenge non-provision through legal action, she stated. ‘We need to find someone for a test case, and then what we can do is look at taking a judicial review. There’s no guarantee we’ll win, but it’s one of the ways we can push the boundaries on this. There are very strong right-to-life and human rights arguments here. People who use drugs have been stigmatised for years. This approach of taking legal action is one way of giving people a voice again.’

The day also saw naloxone training delivered by outreach worker and activist Philippe Bonnet. ‘The turnout was fantastic,’ he said. ‘I showed how you can train people very quickly, so those people can now go out into their communities and spread the message.

In terms of those areas not providing naloxone, the vital thing remained perseverance, he stressed. ‘Identify champions and knock down doors, and make use of the service user groups and advocacy groups that can do that on your behalf. But absolutely, don’t take no for an answer. One thing’s for sure – it’s not rocket science.’

PHE’s advice for local authorities at

What price life?

NaloxneThe failure to roll out naloxone distribution in England prompted a multidisciplinary group to meet in London to campaign for change. DDN reports

Last year there were 765 deaths related to heroin and morphine in England – a sharp rise of 32 per cent from the 579 deaths in 2012. The reasons for this failure are the subject of much debate, with many in the field suggesting that enforced detox and being encouraged to leave treatment too early are strong contributory factors.

But what is certain for the growing number of service users, treatment workers and medical professionals who have formed themselves into an action group – now called the Naloxone Action Group (NAG) – is that many of these deaths could have been prevented if naloxone had been available to use as an intervention to reverse overdose.

At the Action Summit on Naloxone (from which NAG was formed) held at Bleinheim’s headquarters in London last month, the agenda was split between sharing information and updates on naloxone, looking at examples of good practice from areas of effective distribution, and forming an action plan to challenge every area of the country that was slow or reluctant to roll out distribution and training.

Before arriving at the summit, participants had been asked to complete a questionnaire about the availability of naloxone in their area, the drivers for availability and the barriers to distribution both locally and nationally.

‘From participants’ responses there’s a marked variation,’ said Dr Chris Ford, clinical director of IDHDP, who chaired the meeting. ‘One area had total provision, most areas had nothing…. There is a definite postcode lottery. We’re going back to the bad old days and it stinks.’

The group identified those most at risk, with Professor John Strang referring to evidence that more frequent deaths happened during early stages of methadone treatment and early days of release from prison. One important factor to concentrate on was that many people died in the presence of friends, so the group agreed it was incredibly important – and an obvious move – to involve these potential ‘first responders’ with naloxone distribution and training. Families were also ‘absolutely crucial’ – ‘we want to get away from it being revolutionary to it being normalised,’ he said.

GPs would need to prescribe naloxone to patients and authorise family members to collect it and do the training. Oliver Standing from Adfam said that his experience of running a bereavement project had shown that families were ‘desperate to be involved’, while Jamie Bridge of the International Drug Policy Consortium (IDPC) and the National Needle Exchange Forum (NNEF) said ‘having family voices in this will be invaluable – it will make commissioners care.’ The idea of involving recovery assets such as family also ‘fits beautifully into the recovery framework’, said Fraser Shaw of Compass.

Elsa Browne of SMMGP added that her organisation had launched an e-learning module, written by Dr Kevin Radcliffe, to help with training. Around 100 people a month were doing it, ‘and the evaluation is brilliant’, she said.

John Jolly, Blenheim’s chief executive, brought the discussion back to the critical lack of action in England.

‘What’s happened in politics?’ he asked. ‘In May 2012 the ACMD recommended that naloxone should be more widely available, that the government should ease restrictions on supply, and that people should be better trained to administer it.’ The ACMD also commented on Scotland’s strategy running, Wales’ strategy being about to run, and England having no policy. ‘There are some great areas of good practice in England, but it’s very patchy,’ he added.

A letter from the Department of Health was shown to the group. It was a response to Dr Judith Yates’ letters to public health minister Jane Ellison, in which she pressed for answers on the lack of action. The letter assured Dr Yates that, following the ACMD’s advice, PHE and the Medicines and Healthcare Products Regulatory Agency were ‘working on amending medicines regulations to allow the wider distribution and administration of naloxone’. But new regulations would not come into effect until October 2015, ‘the earliest practicable date’ to avoid the distractions of the general election campaign.

The overwhelming reaction of the group was that this was ‘choosing to do nothing’ as October would not be within this government. ‘We’re not happy with the date that’s been set,’ said service user activist Kevin Jaffray. ‘A date a year from now leaves space for another 32 per cent rise in deaths. There’s been a constant rise since 2009.’

Steve Taylor, programme manager for alcohol and drugs at PHE, was invited to give a response to the situation. ‘We’re not kicking things into the long grass – things will have started to take place by October,’ he said, agreeing that ‘anybody walking out of the door with a methadone script and not naloxone is ludicrous.’

Any changes made in October would not make a huge amount of difference, he added, saying ‘there are things you can be doing’ that didn’t require any change in legislation. It was our responsibility ‘as doctors and clinicians’ to prescribe naloxone to people on methadone treatment, he said, and it could be given to families for the named patient. ‘What is it that’s going to change, that we don’t already do?, he asked.

PHE was looking to produce a briefing by the end of this year, using expertise to advise on what arrangements for wider provision might be. ‘But,’ he advised the group, ‘there is not going to be a national programme in England because of localism.’

Rhian Hills from the Welsh Government and Kirsten Horsburgh from the Scottish Drugs Forum shared their experience of naloxone strategy in each country, both of which had shown a decline in drug-related deaths since the strategies’ implementation. Wales had made a commitment back in 2008 to reduce drug-related harm and deaths, and had set up a national group that included police and paramedics. Demonstration sites had followed, evaluated by the University of South Wales, and the main recommendation to roll out the programme was completed in November 2011.

A decline in deaths of 53 per cent spoke for itself. ‘I don’t think it’s rocket science,’ said Hills. ‘It’s simple, it saves lives. It’s down to commissioners – get your priorities right.’ Involvement of service users – ‘the experts’ – had been really important in making risk logs, and from there, distribution had been increased to carers and their engagement encouraged. ‘Naloxone should be second nature,’ she said.

Kirsten Horsburgh acknowledged there had been ‘challenges and barriers’ in Scotland, starting from having one of the highest rates of drug-related deaths in Europe. But a national naloxone programme, launched at the end of 2010, had responded to common circumstances – that the average age of victims was 40, that they were not in treatment and likely to have had a recent period of abstinence, and that they were likely to die in their own or a friend’s home with witnesses (other drug users) present.

A Patient Group Direction (PGD) had been sent out to nurses and pharmacists in community addiction teams, needle and syringe programmes, harm reduction teams and the Scottish Prison Service, and Lord Advocate’s Guidelines allowed naloxone to be supplied by staff working for services in contact with people at risk of opiate overdose, such as in hostels. Anyone supplied with naloxone had to do training to make sure they were confident.

‘The key messages are prioritise the supply of naloxone to people who use drugs, make it normal in services and ensure people on ORT [opioid replacement therapy] have a supply,’ she said. ‘Make the training brief – just a ten minute chat – and involve peer trainers. All this potentially saves hundreds of lives.’

On 4 November the World Health Organization (WHO) recommended expanding access to naloxone, from just medical professionals to people likely to witness an overdose in their community, including friends, family members, partners of people who use drugs, and social workers. The report emphasised the safety of the drug, the ease of administering it, and its potential to reduce 69,000 deaths a year globally from opioid overdose.

The group around the table in London agreed that action was needed now, and there was no need to wait for PHE’s October 2015 directive to make each area of the country accountable for including naloxone in its localism agenda.

Dr Judith Yates gave the example of Birmingham’s progress – a process driven by doctors, nurses, pharmacists and service users, rather than commissioners.

‘Naloxone kits have become normal – we hear about reversals every month,’ she said. Dr Yates had trained drug workers from local service Swanswell, who were in turn carrying out training. ‘We don’t do risk assessments – we give naloxone to all first responders, we give it to everyone who uses drugs,’ she explained. ‘We have stories of residents in hostels saving each others’ lives.’

‘We’re obsessed with controlled drugs, but this is like giving an asthma inhaler, not methadone,’ added Emily Finch of SLAM. ‘I’ve signed hundreds of naloxone prescriptions.’


At NAG’s second meeting on 21 November, the group prioritised the need to overcome the obstacle presented by localism, which prevented England from having a national naloxone strategy.

‘PHE’s October deadline is disappointing, but it’s less than a year away. Of more concern is that we can’t have a national strategy because of localism,’ NAG chair John Jolly told DDN. ‘We agreed the need to bring this to the attention of politicians as well as clinicians. Naloxone distribution is not a minority sport, it’s day-to-day business. If you’re giving opiate treatment, you should be giving naloxone.’

With thousands of doses administered by ambulances, clear messages on distribution from the ACMD, and the Medicines Act ‘clearly empowering every citizen to use it’, there should be no obstacle to making naloxone available in every part of the country, he said. The recovery agenda was directly relevant: NAG identified that those most at risk were those starting on a journey of recovery, and emphasised the need for training alongside naloxone distribution.

‘We need to be identifying areas that are delivering good practice and naming and shaming areas that aren’t,’ said Jolly.

Through the gate

Sue ReynoldsSue Reynolds, the clinical lead of sub­stance misuse at HMP Littlehey, tells DDN about joining the growing number of prisons to introduce a life-saving take-home naloxone pro­gramme for prisoners upon release

HMP/Young Offender Institute (YOI) Littlehey is a purpose-built category C prison which holds convicted and sentenced adults and young adults. The average number of patients engaged in substance misuse treatment is typically around ten to 15.

The treatment regime for substance misuse was based on a recovery-focused approach and risks at release for these patients were high due to social and economic pressures, including their home situation, family support and employment. The highest risk was that they would have developed a low or zero tolerance to opiates/substances as a result of having been stabilised during custody, and so would be at an increased risk of overdose when released.

The local service provider had initiated a take-home naloxone programme, and so there was already support for these patients as they returned to the community. For these reasons, we wanted to initiate a programme within the prison.

The task was to gain agreement from the governor of HMP/YOI Littlehey and other senior staff for a take-home naloxone programme to be introduced, allowing for patient training to be undertaken and naloxone to be available ‘at the gate’ upon release back into the community.

Initially the idea of implementing the programme was made a reality by free training provided by Nina Bilbie, a Prenoxad representative. The appointment was set up by myself, with the full support of Dr Ruth Bastable, GPwSI prescriber for substance misuse treatment. Follow up meetings between myself, Nina and Ruth were key to identifying and overcoming the barriers to implementation. It turned aspiration into reality.

A needs assessment, which allowed objectives to be clearly defined, and a working plan to ensure that all boxes were ticked, needed to be in place. The Prenoxad protocol was adapted to reflect what HMP/YOI Littlehey would be delivering, and due to the small numbers, it was agreed that a patient group directive (PGD) would not be required and each prescription would be generated to the named patient on an FP10 prescription.

A business plan proposal was put together, using the support and information provided by Prenoxad, and presented at the drugs and therapeutics/medicines management meeting to the governor and other senior staff, including the lead chief pharmacist managing the prison. They were very supportive and due to the small numbers involved, the costs were minimal, which contributed to the positive outcome of the idea.

Training was delivered both to the clinical healthcare staff and non-clinical, psychosocial drug and alcohol recovery team (DART) workers in the prison, and a prison training package for patients was also developed. A DVD and sample syringes, needles, algorithm and instruction packs were supplied by Prenoxad. Training was provided by the substance misuse lead on a one-to-one basis with the prisoner, as well as a training evaluation checklist.

It was important to ensure there was a pathway in place for purchasing and accessing the naloxone. The source supply is as and when required for a prisoner’s release on an FP10 prescription, and the local pharmacist supplies it. The naloxone is given at reception upon release, and signed for by the prisoner and the nurse dispensing it. A letter is also presented at the gate, asking the prisoner to send it in if the naloxone is used and providing information on the circumstances.

The plan has been successful due to the large amount of people offering positive support and having the motivation to take it forward. The key factor was that shared expertise was available and easily accessible. The same commissioners (the DAAT) who provide the Inclusion programme both within the prison and the local community also commission and provide the clinical substance misuse treatment services in the prison. The GPwSI working within the prison also provides for the local community, and all key players involved were in agreement for the plan to be implemented. This was running concurrently with the community service providers who were initiating the same implementation plan.

There were no huge obstacles or barriers to overcome, as the support was there from the head of healthcare, the governor and the chief pharmacist. The materials provided by Prenoxad were excellent and enabled things to happen very quickly, while the protocol was easily adapted to reflect local practice.

The patients thought it was an excellent idea – they were very keen and appreciative that this was available to them and it made them feel empowered and supported. It has been included in the programme delivered on the drug recovery wing as part of the first aid and overdose session, and the prisoners who have had training have felt it has boosted their confidence in being able to manage an opioid overdose situation.

To be able to have naloxone injections available for prisoners being released is a huge breakthrough for drug treatment intervention in the prison setting. It takes away some of the worry of releasing vulnerable people into the community with a high risk of overdose. It has been a fantastic achievement and I was provided with tremendous support from colleagues. I hope this initiative continues to spread nationwide with little resistance – if it is available in the community, it can be made available within secure settings too.

Getting it in perspective

Delegates at the afternoon’s opening session heard a range of personal viewpoints from six very different speakers

Alistair Sinclair‘My perspective is based on 49 years living on this earth, 22 of them in recovery,’ said Alistair Sinclair of the UK Recovery Federation (UKRF) as he introduced the afternoon’s Perspectives session. ‘I’ve also worked in social care, on and off, for 26 years, and I’m still in recovery from that,’ he said.

Recovery was an ongoing process of change and self-definition that challenged all discrimination, he told the conference. ‘There are many pathways to recovery – no one has the right to claim ownership.’ It had also  sometimes come to be seen as an excuse to dismantle services, he added, ‘but that’s about how it’s co-opted and presented’.

‘Recovery is a move from deficits to assets, focusing on strengths rather than weaknesses,’ he told delegates. ‘If you listen to our politicians, all you hear about are weaknesses and gaps. But people are coming together to organise, mobilise and make a difference – they’re telling a different story. If you look at the things that get done, they’re not done by services. They’re done by families, neighbourhoods, communities, and they always have been.’

UKRF’s values included shared learning and support, self-determination, personal and community strengths and reciprocity, he said. ‘We, as human beings, have a basic human need to give and receive. That’s how we work. As John Ruskin said, “when love and skill work together, expect a masterpiece”.’

Nigel BrunsdonThe next perspective came from Nigel Brunsdon of Injecting Advice and HIT, discussing naloxone. ‘It’s an opiate antagonist – it reduces the effects of a heroin overdose and that’s all it does,’ he said. ‘It doesn’t do anything else – it’s not addictive, it’s not poisonous, and it’s not a replacement for other overdose interventions.’

It was also not a ‘universal cure’ for overdose, as someone else needed to be present to administer it, he pointed out. ‘But 50 per cent of people who overdose do have someone else with them. That means that 50 per cent of the people who’ve died from an overdose in this country needn’t have.’

Naloxone, was ‘prescription-only, unfortunately’, he told the session. ‘It can only be supplied to the person at risk of overdose, or families and loved ones if there’s a letter of consent from the person whose prescription it is. I’d love for this to be changed.’

Scotland had a national programme of naloxone distribution in place, he said, and 365 overdoses had been reversed since its implementation. While Wales and Ireland had also introduced national programmes, in England it had been ‘left up to localism’, he said. ‘You should all be persuading your commissioners that we need naloxone. Even from a purely economic standpoint it makes sense. You need to get angry. Thousands of people need this drug.’

LUFDelegates then heard from Pete, Emma and Kerry from Lancashire User Forum (LUF), which was now a registered charity with commissioning responsibility. ‘We grew it, based on a few principles – focusing on what’s good and positive,’ Pete told delegates. ‘We’re a grass-roots organisation and service-user led to the bone.’ Public Health England chief executive Duncan Selbie had visited the organisation’s last forum because ‘he saw something different here. He called it “commissioning ahead of its time”.’

‘We had a DAAT that really believed in what we were doing on the ground,’ added Kerry. ‘They put their money where their mouth is and we now have a £200,000 budget that’s been pulled out of services, pan-Lancashire. A consultant psychiatrist’s salary for six months would be about £50,000 but we’ve spent that on social enterprises – photography, art, catering – and six jobs that range from three to 12 months in things like construction, admin and catering. We’ve funded a netball team, a football team, a choir, a boat, £10,000’s worth of training, several environmental projects, recovery hubs. It’s about building people’s recovery capital – opportunities with real depth and weight.’

The ‘LUFStock’ art, music and sports festival had also grown in size from 70 to 270 people in the space of a year, Emma told delegates. ‘What we have here is unity – we’re one group of people with one goal. We’re a family, a community. No matter what your recovery journey is you have an invitation – you belong.’

Jim Conneely‘I’m a former chemist robber, which is not a good lifestyle choice,’ outreach worker for the Hepatitis C Trust, Jim Conneely (DDN, January, page 6) told the conference. ‘My recovery journey was a bit reluctant, but once I got into it I really thrived on it.’

He’d had a supportive GP who genuinely wanted to help – ‘a miracle’ – he told delegates, only to then be diagnosed with hepatitis C and told there was ‘nothing’ that could be done. ‘There was no internet then, so I asked around,’ he said. ‘There was no information, no leaflets, but I heard about a support group and then found out about this new drug, interferon. I had to fight to get that – a pretty crappy drug – and I eventually got clear of the virus. I feel great and really feel that I’ve got my life back. Some of that’s down to my recovery but it’s also about my physical health.’

As he travelled around the country in the Hepatitis C Trust’s testing van he found that ‘an awful lot of people think they’ve got it – why?’ he said. ‘But if you’re injecting you need a test, and there is treatment’ – with new breakthroughs all the time, he stressed.

The Hepatitis C Trust was one of the original service user groups, he said. ‘We’re a group of patients who got together because there was no information about hepatitis C. You need the facts, but we’re out there.’ Many people living with the virus were ‘in a daze’, he said, doing nothing about it. ‘I just want to raise awareness – let’s stop the stigma.’ 

Philippe BonnetThe next perspective came from drug outreach worker Philippe Bonnet, making the case for a drug consumption room in Birmingham (DDN, October 2013, page 16) – a campaign that now had the backing of hundreds of GPs and the local police and crime commissioner. Problems related to street injecting included increased rates of blood-borne virus transmission, abscesses, femoral injecting, needle litter and overdose deaths, he said, while the solution was a ‘simple, effective, pragmatic and humanistic approach’ that was evidence-based. ‘We don’t want a multi-million pound set up, just a couple of portakabins.’

Switzerland had opened the first DCR in 1986, he told the session, and there were now almost 100 worldwide, mainly in Europe. ‘They needn’t be controversial and they’re not a vote loser,’ he said, and they also led to an increase in access to treatment and wraparound services. ‘And nobody has ever died of an overdose in a DCR. Ever.’

The final perspective was from Lester Morse of East Coast Recovery, who described how his recovery journey had led to him to establishing facilities of his own. From helping out at a soup kitchen he’d moved on to setting up houses for people struggling with addiction, often in the face of opposition from the local authority.

‘I’m a service user – I’ve been at the frontline of addiction – and my intention was just to help people. We can talk about addiction, but we need to get you sorted out with the rest of your life. Recovery is the foundation, and the important bit that gets looked over is that MPs and doctors don’t understand the problem.’

His organisation tried to ‘centre everything around the brain’, he told delegates. ‘To have a healthy brain you need a healthy environment, and that’s what we try to create in our treatment centres. We have a coffee shop, we do wood chopping, and people can train for City and Guilds to get good qualifications. It’s based on people helping each other and keeping busy. It’s a real community project.’

August issue

Life-saving stuff

Nearly 3,500 naloxone take-home kits have been issued in Scotland over the past year, giving the chance of emergency treatment for overdose that has proved to be life-saving – but our cover story shows, there is still a way to go.  [Read more…]