What do we already know? our whole family evidence bank: report

5. Behind the Numbers

What Is This?

Behind the Numbers was a campaign launched by Scottish Families in July 2019 to highlight the hidden role of families in preserving and saving the lives of those at high risk of drug- related harm and risk. Through a series of short films, four family members talk about their own experiences of caring for their loved one and trying to keep them alive. They expose how a lack of family support and family-inclusive practice increased risk for them and their loved ones. 'The Story of Behind the Numbers' was then published in 2020, bringing together learning from the campaign with five recommendations for services.

What Did Families Say?

The four family members (three mums and a daughter) shared different experiences but there were many common threads, including the impact of stigma; the lack of family- inclusive services; the importance of dignity, respect and a human approach; and the importance of hope and belief that change is possible. Three of the four had ended up establishing their own family support groups due to the lack of other provision:

"There's that stigma that families are up against.…The form of stigma I got was oh I was classed as a mother from hell. …. It comes from people who don't have any experience or don't have a family member which is a rarity, you're very lucky if you're not effected by addiction in your family nowadays.… It's that whole thing about judgement.Until it comes to your door, you just don't know."(Karen, Mum)

"My experience going there was I was met by a worker, Kevin [son] and I, but I was excluded from the initial interview. I did say I would like to be with himbecause I want to know what's going on. 'Oh no he's an adult and we need to see him on his own'. So it was an experience for me of exclusion that I didn't like. Not that I was going in there to say' I want this, I want that' but I just wanted to know what was available, how they would treat him with his problem. But as I say I was excluded from that. And I never really came into contact with other services."(Caroline, Mum)

"In our area, in Midlothian at the time, there was only six wee plastic chairs in the waiting room and there was a notice on the door to say you can't bring anyone with you because we don't have enough seats for anyone else to sitin them so I wasn't allowed to go to an appointment to help support her [daughter] when she was feeling quite vulnerable."(Sandra, Mum)

"We had lots of services [coming into our house]… You'd get one person that came in and seemed that they wanted to make a difference, and here was where we were going to go. And then within 2 weeks of working with them it was just as if they were fed up and had lost all hope. … So many workers would come in and just sit in the corner,not really wanting to engage and seem like they just didn't want to be there. I felt a lot of the time you had more people coming in and judging than you did not."(Mhairi, daughter)

"Nobody ever asked her [M's mum] what she was doing at the weekend or how's the kids or anything else. … I feel you can make someone feel so much more human if you talk to them like a human.…I think alot of the time people working with people don't feel that compassion is something they're allowed to show."(Mhairi, Daughter)

"I believe that if people that are working within services… start looking at people with a bit of empathy. That they understand what that person is going through.That it's not a choice in life, it's something that can happen to anybody,anyaspect of life. And that peoples how a bit of dignity and respect to other people.The thing for me is,we'll have to humanise healthcare."(Caroline, Mum)

"I've set up a family support group in Midlothian for other families so that they don't experience what I've experienced as a mother and we have a fantastic group running now on a Monday night and its well-attended,well-advertised inMidlothian.…We have a lovely nice comfortable room with sofas,with radio and lamps, and treated with a bit of dignity and respect."(Sandra, Mum)

Three Take-Home Messages

1. Love is a powerful motivator for family members, but services generally don't recognise this and see families' interest, tenacity and passion as interfering and trouble-making.

2. Families recognise that services cannot always share information with them, but they do want to be listened to, and treated with dignity and respect.

3. Services believe they solely hold the risk for any decisions made, however risk can be shared by including family members and their loved ones in decision-making.

Reference

Scottish Families (2020) 'The Story of Behind the Numbers'

https://www.sfad.org.uk/behind-the-numbers

Behind the Numbers – Key Recommendations for Change

Love

1. Recognise that everything families are doing for their loved one is motivated by love. There may be tension, conflict and anger, and sometimes family members will have to take a step back to focus on their own self-care and protection. But love has power and this can be harnessed by services too. Love can motivate service arrangement and recovery and inspires hope and compassion in the most challenging times.

Welcome

2. Offer family members a warm welcome in their own right, even if their loved one does not want family involvement in their care. Remember they know their loved one better than you – probably better than anyone – and can provide you with a significant amount of additional support and information to help with treatment and care. They will understand that you cannot share confidential information about their loved one, but there is no law against listening to their view and experiences. As well as this family-inclusive practice, services should offer one to one and group support for any family member who wishes this, in their own right. This may be delivered in-house or through partner organisations such as Scottish Families or their providers.

Listen

3. Listen to family members. You may not always want to hear what they say, but they will give you an honest and true reflection of any service performance issues, and how to improve your service. Remember they may be angry, frustrated, afraid and traumatised. All of this may influence how they communicate with you. This includes children and young people who are affected by others' substance use. They commonly describe being ignored when they are trying to shout out for help.

Dignity

4. Treat individuals and families with dignity and respect at all times. This comes at no cost and brings significant rewards. Each one of our family members talked about being judged and stigmatised by others, including those services who are paid to help and support others.

Risk

5. Share the risk. We understand that supporting people with alcohol and drug issues involves significant risk. Not supporting people increases risk further, including risk of harm and death. Families and services can share risk by working together on treatment and care planning and delivery. This will help to preserve and save lives, and reduce deaths. Share harm reduction information and approaches with families, including supplying naloxone where appropriate.