In the concluding article in a three-part series, DDN looks at much-needed services offering information and support
Buying codeine-based cough medicine from the chemist was David Grieve’s path to addiction. At the time, manufacturers combined codeine with ephedrine – ‘a similar effect to amphetamines’, he says, and by the time he realised he needed help he was seriously ill.
Struggling through treatment with very little help, he set up the support service Over-Count to help others who find they have a problem with over-the-counter medicines. Back in 1993, when he started it from his front room, it was a tiny organisation with no funds. Sadly, he says, the situation hasn’t changed much – but the problem of opioid painkiller addiction has grown out of all proportion.
‘Since we started Over-Count in 1993, the amount of people we’ve helped is getting on for 80,000,’ he says. ‘About 1,000 people a year are coming in presenting with addiction to painkillers.’ They range in age from 18 to 69, and three-quarters are female. ‘About 95 per cent of the products they are addicted to are codeine-based painkillers,’ he adds, with Nurofen Plus overtaking Solpadeine Plus as the pill of choice. ‘The reason is quite simple – Nurofen Plus has 12.8mg of codeine in it, compared to 8mg, so you get more for your money.’ The amount of tablets being taken varies from six to 74 day – ‘a dose that would kill me and would kill you’. In this case, the woman gradually increased her intake to 12 tablets six times a day, with a couple more doses in the night, and came to Over-Count ‘as a last resort’.
In this extreme case, Grieve gave the woman a letter to take to her doctor, to help her get immediate medical support and liver function tests. For others, the support begins in different ways and through the offer of a withdrawal programme, which ‘has an 86 per cent chance of succeeding’ and leaving the patient drug free for at least six months.‘If you can do six months, the chances are you can carry on drug free,’ he says. The reason for the success rate, he believes, is that ‘it feels personal and you’re not just ignored and left to get on with it.’
Working constantly to prepare the individual programmes and respond to clients, Grieve does not have the time or money to continue his research or expand his database on the problem as much as he would like to. He is also deeply frustrated that his ten years of lobbying for a centralised information database and standardised treatment appears to have come to nothing, and warns that the problem will ‘increase beyond recognition’ over the next five years.
Director of DrugWise, Harry Shapiro, is equally surprised at the slow response to the issue. ‘I did various Hansard searches and the subject has never come up – there aren’t even any parliamentary questions on it,’ he told DDN. ‘It’s completely ignored as a public health issue.’ This is a situation he hopes to help change through the All-Party Parliamentary Group for Prescribed Drug Dependence, which considered his paper on opioid painkiller dependence and will dedicate its next meeting specifically to the topic, later this month.
The BMA is also holding stakeholder meetings, gearing up to lobby the public health minister to fund or run a national helpline – but he acknowledges that the mechanism can grind exceedingly slowly and that there’s ‘not a huge amount happening on the policy front’.
In the meantime, support organisations are developing the knowledge to offer much-needed help. Among these, DrugFam has the families’ interests at heart, offering them a seven-day-a-week helpline, groups, and one-to-one support. ‘It’s about raising awareness so that they’re not isolated and alone,’ says chief executive Sarah Bromfield. ‘Families don’t always identify this as something they can get support for. So we need to raise awareness around GPs and the health services and around substance misuse agencies as well.’
Their latest initiatives, including developing leaflets, information brochures and a toolkit, came about as a result of an increasing number of calls to the helpline around the issue. ‘We felt it was important that we did something about it,’ she says. ‘There are a lot of hidden families not getting the support they need.’ They have also joined the Opioid Painkiller Alliance, a group of organisations from the pain and addiction communities, which is campaigning for better screening, support and information for patients who are at risk of developing dependence.
DrugFam’s information is being developed through talking to family members who are going through these issues and looking for common themes. An important element will be to help them tackle stigma, as well as the behaviours associated with any other addiction – ‘so we need to help families at an early stage to put the boundaries in place and look after themselves,’ she says.
Annemarie Ward, chief executive of Faces and Voices of Recovery (FAVOR) UK, agrees that being able to deal with stigma is a vital tool for both patients and families in tackling addiction. ‘Opioids, whether prescribed, bought over the counter, or bought on the streets, don’t discriminate,’ she says, ‘but people certainly do, which prevents people from reaching out for help when they most need it. Like most people with substance use disorders, those with opioid dependence take their problems underground and don’t seek help early because they’re worried about the ramifications for their careers, or they’re ashamed to tell their families and friends.’ There are plenty of ways to challenge this stigma by offering compassionate support, both to the individual and to their loved ones, she says. ‘Simply being kind and non-judgemental to people who are in an incredibly vulnerable situation can go a very long way.’
Last month’s Opioid Painkiller Addiction Awareness Day (22 September) highlighted that there is a long way to go to start tackling this problem seriously – not just because of growing numbers of people affected. Searching for activity related to the campaign reveals very little and there was a lack of cohesive action to get the message across to the public and find those in need of help.
Over this series of three articles we have seen that progress for this patient group is hampered by lack of reliable data, inconsistency in professional practice and protocols, underfunded initiatives and a lack of political will to grasp the agenda and move it along. On the plus side, there are individuals, groups and services out there that are working with a passion to raise awareness and offer a lifeline to those who are addicted.
This article has been produced with support from Indivior, which has not influenced the content in any way. More information on opioid painkiller dependence at www.turntohelp.co.uk