‘You know how much stigma gets in the way of your lives. It’s that stigma we have to challenge,’ said Vivienne Evans, Adfam chief executive, opening the inaugural Families First conference. ‘This annual event is the start of a movement for family members,’ she said, before handing over to the first speaker, a mother asked to give her personal perspective.
‘I’m standing here because my family was affected by drug use,’ said Christine Tebano. ‘I’m a mum of four and I didn’t know for a long time. There was odd behaviour from my daughter and I knew something wasn’t right. It hit home when she didn’t sit her final exam. We found drugs in her handbag, had calls from her school and then the police started arriving at our door. We didn’t know what to do.’
Working in social care, Tebano thought she knew where to go for help; but at that time, nearly 20 years ago, she found nothing. One day she responded to an article in the newspaper about how drugs could affect a family. Her letter became front-page news and there was a torrent of heartfelt response, forwarded to her by the paper, from people in a similar situation.
This demonstration of local need prompted her to set up a group, Parent Support Link (PSL), around her kitchen table. ‘We needed someone to listen, not judge, but understand,’ she said. The catalyst was word of mouth and the group soon developed a varied skill set among its members, including legal knowledge, giving it the confidence to become a charity. Passion and personal commitment were vital in the small organisation’s mission to provide non-judgemental support.
Most importantly, said Tebano, ‘we didn’t say “this is what we do; here’s a menu”. We asked what we could do to help.’ With a telephone support line in place from the outset, the group responded to the need for face-to-face meetings with others, eventually settling on a monthly group meeting. Finding the right venue also took time and the group realised it had to work up a set of guidelines so people got the right idea about the group from the outset and understood that it was for support, rather than a campaign group.
With one-to-one support making up the other important element of the group, PSL has become a much-valued part of the community and has developed a clear, outcome-based relationship with funders. Feedback from group members speaks for itself, said Tebano, quoting a selection of comments.
‘It’s a place where I can think – my home is full of stress where it seems like a dead end,’ said one. ‘The group is my sanctuary, a place of protection,’ said another, while another group member said: ‘There’s a bond around us as we begin to realise the meaning of the journey we are undertaking.’
Next to take the platform was the NTA’s chief executive, Paul Hayes, who told his audience, ‘As the man from the government, I’ve been asked to give you things as straight as possible. You can work out the challenges and threats in that.’
He explained that despite local authority budgets being cut by a third, more money – about £2bn a year – would be ring-fenced for public health in England. But it was as yet unclear how much of this would be available to spend on drug and alcohol treatment. With the NHS Commissioning Board giving local decision-making to GP clinical commissioning groups, the challenge for families was to make themselves heard, he said – an opportunity that would be enhanced by the new health and wellbeing boards, involving local communities.
‘You need to find ways of harnessing energy and passion in a way that supports you and your family member,’ said Hayes. ‘Be vocal, get lobbying. Stir up concern to make sure the system is listening… you can exert a lot of influence through local radio, television and politicians. You need to persuade people and build allies.’
Later in the day Dr Steve Brinksman reassured the audience that GPs were well placed to take this lead in commissioning local health services, as they had families’ interests firmly at heart.
‘We work with whole families – there’s continuity,’ he said. ‘I’ve been in my practice for 26 years now and the roots go deep. I don’t discharge people and there are no “treatment completions”.’
His message for family members was: ‘Complain if you’re treated badly. We need to push awareness to GPs. Empathy’s important, and to be listened to makes a huge difference… I need your help in making my colleagues better at this.’
This could be done in many ways, said Si Parry from the Southampton service user group Morph – a speaker asked to give his perspective as a son who had used drugs, and who had since become a father. His experiences had led him to become involved in drawing up core competencies for GPs, directly influencing their response to, and treatment of, drug use in the family.
More practical advice came from Release solicitor Niki Durosaro, who gave reassurance on families’ legal rights. A common fear was that families would become liable for debts. ‘This isn’t the case,’ she said. ‘Debts are personal and addresses can’t be blacklisted.’
For many members of the audience, the main mission of the event was to find more effective ways to cope as a carer – either for themselves, or for their clients in family support services.
Alex Copello, a consultant clinical psychologist, gave a snapshot of the impact of substance use on the family, with a view to developing coping strategies. People living with someone with a drug or alcohol problem were found to use primary care services a lot more, he said. They frequently felt stigmatised and often did not know where to get support – or even how to talk about the problem with their own family.
The three ways that family members responded to their relative’s behaviour tended to be putting up with it, standing up to it, or withdrawing from it – or a combination of all of them.
‘There’s no evidence to show one’s better than another because it’s all so complicated,’ said Copello. But the ‘five-step’ method had been shown to be helpful, whatever the reaction. This involved listening and reassuring, giving relevant information on treatment and support, exploring coping responses, discussing social support, and looking at further support needs. Families who had received the ‘five steps’ in primary care had been shown to develop a calmer and more assertive approach to their relative, while at the same time refocusing on their own life and needs.
‘A little support can have wide positive consequences,’ he said, stressing that it was important to see family members as partners in the treatment journey.
So what else could families and carers do to help themselves and strengthen their resilience?
Through her workshop, Jennifer Upperdine of Swanswell’s carer support service gave a lesson on ‘tough love’ – one of the most difficult, yet beneficial, skills a carer could practice.
The aim was to empower the carer by giving them a support network, so that they had the strength to realise that they could influence the choices of the service user – sometimes by standing up to them, she said.
Upperdine explained how, through six sessions of one-to-one support, the service switched the carer’s focus back onto their own life, helping them rebuild their confidence and put themselves first.
The big lesson was for the carer to be able to support their relative without it affecting their own physical and mental wellbeing, and the service used an ‘outcome star’ to map improvements. Alongside their self-esteem work, carers learned what to expect from supporting someone through treatment, including the possibility of relapse, and the stresses accompanying detox.
With improved self-confidence and understanding of the situation, carers were in a position to be firmer. ‘Tough love means there are certain things you no longer do,’ said Upperdine, including offering financial support to the service user. The service also prepared the carer for the outcomes of tough decisions like no longer offering a home to a problem substance user who refused to seek help.
In a workshop on the impact of alcohol use on family members, Richard McVey from Aquarius highlighted that support groups should make themselves as accessible as possible by running meetings in homes, cafes, supermarkets – ‘wherever people are comfortable using them’.
‘Give them something, such as lunch or pampering days, where people can talk without identifying themselves as having problems,’ he said. ‘Make support as flexible as possible. Lots of families don’t want to go through a lengthy referral route – they just want to find a group.’ Sharing experiences was one of the most valuable methods of support and encouragement – demonstrated by the workshop, which encouraged participants to share their experiences of what worked.
‘When I was 60 I was suicidal, as my son was an alcoholic,’ said one woman. ‘But he’s in a good place now and he says that me putting in boundaries made all the difference.’
Karen Biggs, chief executive of Phoenix Futures, had the unenviable task of summing up a packed day. She kept the message clear and simple, using feedback from her clients to emphasise why treatment providers should think about families: ‘because I want to do all I can to help my loved one get better’; ‘because I need to know that someone recognises my pain’; ‘because I need some practical help with coping with the chaos addiction has brought to my life.’
‘Successful recovery requires support for the family as well as the person with addiction,’ she added. ‘Most carers are mums and the reality of the world is that most mums don’t say “what about me?” I’ve found that staff don’t do enough for families not because they don’t care, but because they fear overstepping the mark, and that has to change.’
See Adfam’s record of the day, with photos, presentations, and tweets, on Storify – click the ‘Families First Conference’ tab on our website, www.drinkanddrugsnews.com