NECG update: Dame Carol Black’s independent review of drugs
Author: Lee Dale, Community Development Coordinator & NECG Member, VOICES
In February 2019 Dame Carol Black was commissioned by the Home Office and the Department of Health and Social Care to undertake a 2-part independent review of drugs, to inform the government’s thinking on what more can be done to tackle the harm that drugs cause.
Part one was published on 27 February 2020 and provides a detailed analysis of the challenges posed by drug supply and demand, including the ways in which drugs fuel serious violence. Part two was published on the 8 July 2021 and focuses on drug treatment, recovery and prevention.
The NECG were asked to focus on 4 key questions to help inform Dame Carol Blacks review relating to part 2 (only).
The NECG are people with lived experience, all from the 12 Fulfilling Lives programmes across the country. The aim of the NECG is to ensure lived experience shapes system change and creates future services that are; co-produced, accessible, and designed for people who have experienced multiple disadvantage.
NECG Members discussed these questions with people with lived experience in their local areas. The main themes were reported back at three regional meetings throughout August. The consistent themes that emerged from the regional meetings were presented at the NECG’s National Meeting on September 10th 2020 and discussed with Dame Carol Black herself.
Question: How could we make it easier for people to access drug treatment and recovery services, and stay in contact with those services?
The NECG’s view is that it is treatment services, not people, that are ‘hard to reach’. People have been expected to engage on the service’s terms with little flexibility or choice. This needs to change. Services must consider what works best for the individual and the reality of their situation.
“End the myth of non-engagement”
There are numerous ways in which services can become more accessible, by; creating warm welcomes, removing red tape, offering choice and a variety of ways to engage, regular phone calls, use of outreach and peer support.
Begin with a Warm Welcome
It takes great courage to approach a service and acknowledge that you need to address difficult issues. Typically, contact with services begins with assessments and repetitive form filling. Numerous examples were given of assessment appointments being unnecessarily long – ‘I was asked the same questions 6 times’ – emotionally draining and triggering trauma. Examples were given of initial assessments including intrusive questions that created a feeling of being judged.
Bureaucratic processes must be secondary to the main objective of building trust and forming relationships. A warm welcome is essential. The aim of the initial contact must be about understanding the person, listening, and supporting them to feel safe. Treatment services must incorporate a trauma informed approach.
“It should be welcoming; you should be able to have a cup of tea and people should be nice to you”
“Having the time to get to know your worker is really important- sometimes you just get rushed in and rushed out- I bet they [the workers] hate it too- I guess what they need is less people to see (smaller caseloads) so that we have time to build a relationship with each other”
Waiting areas in treatment services were consistently criticised for feeling unsafe (especially by women, institutional, lacking privacy and not conducive to enabling recovery.
“There should be more privacy- separate waiting rooms from the reception- everyone can hear your business and if the receptionist embarrasses you in front of people, you’re going to be more likely to kick off”
Treatment Services can be Difficult to Find
It can be difficult to even know how to approach treatment services. Access via your GP can be problematic.
“Most people accessed services through a GP referral. This worked for some but not for others who have negative experiences of GP services, (stigma, not being able to book an appointment). There is a risk of falling at the first hurdle”
Treatment services must become more accessible, and more visible, by widening the scope of referral routes and partners in the community.
Being Proactive to Be Inclusive
Services need to be accessible to all parts of the community and form partnerships with community and religious groups to understand cultural barriers and overcome exclusion.
NECG members stated that people from Black and Asian communities are under-represented in treatment services. Addressing this must be a priority.
“In the Black Caribbean community, its literally that we are just not accessing services when you’re supposed to – we are being looked down on by family and friends – in my experience some of my friends told me “Why am I going into services?… why am I going to rehab?” they kept bringing it up”
From all Fulfilling Lives areas there was consistent feedback that treatment services are not safe or accessible for women and don’t take children and families into consideration. This theme is covered in a later section.
Offer Choice in How Best to Engage
When accessing a service people should be given options of how to engage.
“Whatever is best for the person”
The NECG’s research into how services responded to the covid pandemic highlighted how services became more accessible by offering choice and became more proactive by using phone calls, video calls, delivering medication and outreach approaches.
Likewise, pre-covid it was said that some services were only offering group support and now are offering more one-to-one support. Again, people must be able to choose the support option that works for them.
“Never is, and never will be about one size fits all”
Remote ways of working have been said to make services more accessible for people who experience anxiety.
“People with social anxiety have engaged better than they ever did when they were a bum on a seat”
Outreach approaches make services more accessible, especially for people with disabilities, living far away, or where other people are a trigger to them wanting to use (due to knowing people still actively using substances accessing the same service).
Support Must Start Straight Away
There was consensus that waiting times for treatment are too long. This needs to change. However, whilst people are waiting for treatment, they must be able to access support and encouragement. Support must start straight away. Peer support is essential to enable this initial engagement and create a more holistic approach. Services must remove unnecessary barriers at the point of entry.
“You have to ring once every morning for a month. Absolutely backwards way. Support needs to start right away. If you must wait, I’d think what’s the point?”
“Offer more telephone support until treatment happens”
The Importance of Peer Support
The NECG believe that peer supporters – both as paid workers and trained volunteers – must be an integral part of all treatment services. People with personal lived experience of substance use and recovery bring a unique insight and ability to form rapport. Peer support must be incorporated into all aspects of services. It is especially crucial for the initial support and warm welcome.
“It takes a long time for people to recognise they have a problem, when it hits the point you have to wave a white flag – you have to grab them then. You can’t let them slip through your fingers. They have come so far to get there. Peer support is to bridge a gap not a way of fobbing people and make it acceptable to have a long wait”
Peer supporters would act as a ‘go to person’ to keep in contact whilst on the waiting list and between appointments. Peer supporters would work with people in a more holistic way and connect people with community organisations. They could talk to people more frequently than a clinician, and in a different way, enabling long term engagement with the service.
“In effect doing what navigators do, building a relationship, friendly, warm and close contact-this is already proven to work”
Services Must be More Understanding and Less Punitive
NECG Members stated that services were often punitive and there were negative consequences for missing an appointment, with little understanding of the underlying reasons why. Services must be more understanding, and less punitive, when people struggle to engage. Staff with lived experience can embed this knowledge in teams.
“They know the struggles you are facing outside and are more sympathetic”
“They know that if you miss an appointment because you were too sick to get there – that’s a real issue- sometimes you have to prioritise getting drugs, but that doesn’t mean that you wanted to miss your appointment or that you don’t want help”
Flexibility, Choice and Trust Enable Long Term Contact
Finding an approach that works for an individual is central to enabling long term engagement and recovery.
There was consensus that services often offer a ‘one size fits all approach’ to recovery. An example was services based on a 12-step programme philosophy. Whilst this is effective for some people, it is not effective for others. Services needs to offer a more diverse, person centred and holistic approach.
“AA and 12 step programs are not for everyone. People should be able to choose their recovery from a menu of options like mindfulness meditation, writing, story-telling, poetry, drama, joining the choir or open mic nights.”
Trust was identified as a key factor enabling long term engagement with a service. People talked about how trust is essential when managing a script. Likewise, scripts are not the best option for everyone, so alternatives need to be explored.
“Drug services need to change the way the script and re-script, you should be given trust to manage your script in ways that work for you”
“There should be more support available for people who don’t want to get on a script”
People need to be listened to and shape the support they receive
“Also acknowledge that people are likely to know their own addiction patterns and which ‘addiction’ they want to resolve; as one participant said, ‘I want to sort my alcoholism out because that’s what makes me do the heroin’ – but drug services won’t support her for the heroin use”
Engagement Should be Based on People’s Strengths and Interests
Initial conversations must identify strengths, interests and create hope. These are central to recovery and make engagement easier.
“Identifying what they want to do, might not be work, could be cooking, gardening, you then engage better with that person. When you work with someone in that way they start to open up and be a part of things”
“Strength based working, in amongst everything else going on, one good thing, find the good and build on it. Address self-esteem, you’re here today, well done, let’s find a solution”
Question: How can we ensure the mental health needs of people in treatment are met?
The NECG felt that the term ‘dual diagnosis’ can be problematic in how it shapes the way services operate. The ‘split’ into two issues creates problems and prevents people getting the support they require. Services should be able to offer support based on what the person is asking for help with.
“Support should be concurrent; how do you decide which one comes first? If you have a broken arm and broken leg, they treat both”
Services must be equipped to deal with addiction and mental health. If someone has experienced multiple disadvantages and is presenting at a substance use service there will nearly always be underlying mental health issues and trauma. There is a need to have counsellors and mental health specialists in substance use services as standard.
“Support should be available for longer- 12 weeks talking therapy via IAPT just isn’t always enough”
“You either need workers in a service who specialise in more than one thing like mental health and drugs and alcohol, or have different workers in one service who work together”
The Importance of the Community and a Broader Understanding of Recovery
The NECG believe that treatment services need a broader understanding of recovery, beyond the clinical aspect, working holistically, building strengths, and providing opportunities in the community. Peer Support Workers excel at connecting people with community opportunities.
NECG Members spoke positively of the importance of community hubs that don’t define people by their ‘issue’ or ‘problems’, provide opportunities and build social networks.
“Walks, board games, family days, you can see the progress” (speaking about opportunities at a Community Hub)
“You should be encouraged and given options of things to do that can give you pleasure- remind you that you are human and have interests”
An Understanding of Trauma is Essential
Trauma is often the root cause of substance use and mental health issues. Peer Support Workers have the insight and empathy to support people to identify and discuss other issues and root causes.
“You need someone by your side as you’re going through it”
Question: What is the best way to meet the employment and housing needs of those in treatment and recovery?
It is About More than Employment
Whilst employment is important, NECG Members thought that in early stages of recovery, a greater focus on life skills and other opportunities is required. There was a view that services are driven by pre-defined outcomes, not the needs of the individual, and that there is often an inappropriately timed emphasise on employment.
“Employment’s part of the journey but pushed on people at the wrong time, it’s forced”
“Has to be person centred, not one size fits all. A generic back to work course will not work for most people. Just doesn’t work”
“Services should explore quality of life with people – what’s a good life look like?”
Support should focus on the practical skills an individual requires
“Street, treatment, dry house, back on your own and you can’t cope, back to the start. More support about budgeting, learning how to cook, life skills incorporated into the treatment centre environment”
Effective Employment Support
Treatment services should develop better partnerships with specialised employment coaches from voluntary organisations. Employer’s need be educated to better understand substance use – underlying issues, triggers and how to support people – without prejudice or stigma.
“It is unfair that someone who has an issue with alcohol can keep their job whereas someone who is a recreational drug user or in active addiction can lose their jobs to random urine tests”
“What would help? More meaningful volunteer roles, increased benefits for those on the lowest rates, increase in the minimum wage”
“Drug services should have a list of employers who want to offer opportunities for people who have a criminal record or have used drugs and then they should help you get the qualifications or whatever that you need to get work with them”
Person Centred not Process Driven
Whilst discussing employment support the NECG made a broader point that the support provided is often driven by the needs of the service; driven by targets, outcomes, and the completion of paperwork. This creates a bureaucratic process that undermines a truly person-centred approach.
“The worker is under pressure to talk about every issue at the same time and get the perfect outcome. Don’t force it, react when the individual is ready, have resources there and then”
“Organic informal conversation, not zero to ten how do you feel? Too formal, piece of paper in front of you. It’s about supporting people not getting data” (referring to use of the Outcomes Star)
Choice and Finding the Right Accommodation
Accommodation is essential for recovery – but it must be the right option. The system currently creates traps and damages recovery. Numerous examples were given of people in recovery being placed in hostels and being surrounded by drug use or being made to choose between de-tox and giving up their accommodation.
“There is a lack of housing options, large hostels where everyone is using are not the one, we need smaller places that are more therapeutic- where you can get the support you need”
Examples were given of people only being supported to move from inappropriate accommodation when they ‘reached crisis point’.
It was acknowledged that staff in treatment services are in a difficult position regarding housing. They might not have the specialist housing expertise or referral contacts, therefore lack the confidence to discuss choice. Either housing specialists should be employed within treatment services or better developed partnerships and pathways with housing specialists and providers.
Housing First schemes were discussed as a possible alternative to inappropriate shared accommodation and large hostels. To be successful they require excellent support. An NECG Member talked about the ‘team around me’ wrap around support approach.
Question: What else stops people recovering and why might they relapse? What would help?
An End to ‘Relapse Thinking’
The concept of ‘relapse’, and the way services interpret it, was said to be problematic. When someone uses substances, whilst in recovery, services were said to respond by going back to the beginning of their support processes. This can create a sense of failure and is seen as an extreme response. Again, this was identified as a point where peer supporters have the insight to provide appropriate interventions.
“Change terminology, never have to go back to step one”
“Relapse sounds set in stone. It’s a blip, it’s a bump, everything can be overcome, you’ve had a bad day”
The following quotes highlight how peer supporters are vital at this point
“Peers bring peers back into recovery not services”
“Relapse? You can phrase it so many different ways it doesn’t need to be part of the medical model, it’s punitive. The question is what do you need? Not ‘this is what you have to do’. You’ve had a tough day, let’s go for a coffee. This is when the peer mentors come in. People in recovery genuinely want to help they have love, care, compassion”
Following from the ‘what do you need?’ question in the quote above, it was felt that this was a time when services must show flexibility.
“Staff need to be more flexible and brave in decision making”
Recovery Starts After Treatment
Support must not stop when clinical treatment is complete. NECG Members spoke about services withdrawing support at this critical point. This is when people face different challenges. Peer led support and the community are crucial to enable and sustain long term recovery.
“Services run away when you’re off your script, bye, they’re off. You need more aftercare when you’re squeaky clean you need support not ‘we’ve done our job’. It’s peer mentors you need then. That was the gel that kept me going, you need peer mentors”
“Fear – what happens after addiction? What will dealing with my mental health feel like?”
Safe, Inclusive Community Spaces
Recovery requires more than using services. People need opportunities to integrate into the community, follow their interests and develop social networks. There is a need for safe spaces for everyone – people in recovery, families, professionals, local people – to be together learning, sharing, talking, educating.
“Peer support mentors can run activities, cafes, drop ins”
“Make sure there is a hub a place to go to, always a support option, a buddy or a friend”
An example was given of a ‘Recovery Village’ concept with a chemist, a café and other services which would be a safe space for those in recovery but still open to the general public. It would be a place where people could meet with workers/peer mentors and where they know they could frequent without being judged. (Example from Stoke Fulfilling Lives)
Conclusion: The Perfect Service
The NECG stressed the importance of addressing the underlying issues of substance use and properly funding services and community organisations.
“The Government needs to stop trying to stick a sticking plaster over everything, you want to challenge violent crime and drug use- spend more money on communities, tackle poverty, get everyone properly educated- without that this whole conversation is a waste of time”
This final quote wonderfully captures the NECG’s vision for the perfect treatment service
“An ideal service would have a team of people that worked with you to plan your journey through treatment together, it would have your drug worker managing your script and different detox/rehab options, a psychologist supporting you with your mental health and a housing worker planning to get you into suitable accommodation and a peer mentor who could be your go to person and help you get involved in things that have nothing to do with drug treatment- fun activities and stuff, things that remind you why you want to stop using”
Special thanks to everyone that contributed to this, and a big thank you to the hosts of the NECG, Re-volving Doors, as well as a special mention to Dame Carol Black who took the time to meet us at our national meeting.
If you would like to read the government’s response to the review, published on the 27th of July 2021 you can find that here: