This is our first story of innovation addressing some of the challenges around supporting people who hoard. We hope that these inspire you, and that by going under the hood,you can see what key steps or ingredients are needed and what might translate for you!
We are especially interested in teams/services who have managed to address some of the key challenges we are aware of - whether these are small or large!
- Ways to support more joined up multi-agency collaboration - to support co-ordination, knowledge exchange or learning
- Practical and emotional supports - from supporting the removal of items to self-help or peer support to support longer-term management
- Services or approaches that have managed to make the ‘spend to save’ case - to provide earlier intervention or person-centred and trauma-informed support over the longer-term (hoarding aware, and that works alongside a person in their own home)
- New ways to use or share budgets to improve capacity, responsiveness and provide what’s needed (not what current systems and funding criteria allow)
Our first story is focused on the work happening in Fife as told by its ASP lead Officer, Ronan Burke. Thanks to Ronan for sparing me his time and sharing their story in Fife. Let’s start from the beginning...
Recognising that change was needed…
The annual thematic report of learning review referrals we do gives us a sense of what is triggering learning reviews, explains Ronan. It identifies the people behind them and their vulnerability. Around three years ago this thematic review showed that hoarding was a factor in around 40% of our total learning review referrals that year, which was significant! There was also a particularly difficult referral for someone who had passed away.
'It was only after this person’s death that we were able to identify the level of hoarding within their home' - because of what social workers call ‘disguised compliance’ and others might call reluctance to engage. Numerous attempts had been made by social work, the Police, the Fire Service and Housing, but to no avail. This connects to what we know about the stigma and shame people who hoard feel, and fear around letting agencies into their home.
'That really prompted us to look inwardly' says Ronan, and began their journey to positive impact.
'Three years ago, 40% of our learning review referrals related to hoarding, and that's reduced by an awful lot, probably by about 30%. (And) last year we didn't have a single learning review referral related to hoarding, which was a huge change from three years ago - which indicates to me that the work we're taking forward on the ground floor is making a positive difference. People are getting in, people are aware of what hoarding is, and people are aware of how to better address that.'
How the journey in Fife began…
We created a multi-agency learning plan based on this case and created a Short Life Working Group (SLWG) on hoarding and self-neglect for our Adult Protection Committee.
'That led to us procuring specific hoarding training through Linda Fay of the Hoarding Academy – and that was a big step for us in terms of having a better idea about how to address hoarding.' It told them a lot, as did the evaluation of that training in showing what they should do.
Learning as the first step on the road to improvement…
We need to understand where we are starting from. As Ronan says 'Hoarding is not something that was greatly known about until the last maybe three, four years.' Three years ago, 'the fact that hoarding is now a mental health condition which can be diagnosed, …was a real surprise to me from somebody that wasn't that experienced when it came to hoarding.'
He goes on: ‘A lot of our learning was about trying to create a better and more effective understanding of the trauma aspect of hoarding. As we all know, lots of years ago, what would happen would be that housing would more often than not identify hoarding, social work would go in and a deep clean would be carried out...What the training from Linda taught us was that it was something like a 98% recidivism rate when it comes to deep cleans and actually the trauma of that happening makes things worse for the person.'
Building a multi-disciplinary approach
Starting from the ground up
'The training and SLWG also led to standalone Guidance on Hoarding and Self-neglect for the Adult Protection Guidance within Fife, which Linda helped us develop. This has supported an informed and standardised approach across Fife.'
The involvement of the SLWG was critical, however, in developing the guidance - 'getting all the people' around the same table to achieve multi-agency buy-in - with membership of the group spanning social work, police, fire and rescue service, and health.'
And there have been other benefits - 'I think what you would find previously, is that housing would feel they would be left with dealing with it if the (ASP) three-point criteria wasn't met… and that there's always that desire for more health input when it comes to hoarding disorder...we’ve managed to achieve this through involving a consultant psychiatrist on our consultation panel and really engaged with the hoarding related work, which has been a real help for us.'
As Lead ASP Officer, Ronan sees his role in helping bring people together, keeping hoarding on the agenda, and making it easier for them to contribute. He also recognises that this is about fostering those relationships and that you’re asking them to do something on top of the day job and existing commitments. He wants to make it as easy for them to participate as possible by supporting things in the background. This takes leadership.
Permanence, commitment and good data…
The SLWG has now become a permanent group - 'to have a long-term strategic approach when it comes to addressing hoarding through adult support and protection.' It’s recognised that hoarding isn’t going anywhere! In fact, it’s on the increase. These regular meetings clearly keep it on the agenda.
'What we've realised throughout the workforce (and) the SLWG, was that hoarding is only on the increase in Fife'. This is backed by data – with changes made to their local recording systems that 'record hoarding and include this in adult protection reports of harm. (This helps us) gain us a better understanding of the sheer numbers of hoarding related referrals that come in (to ASP)', making this issue more visible and people who hoard more visible. ('It was invisible for a long time.').
In their Adult Protection Committee meeting, they can also monitor the impact of awareness raising campaigns, for example analysing if there has been an increase on the type of harm which was focused on as part of awareness raising.
Sharing the learning - growing our expertise and giving something back
Over the last year the multidisciplinary hoarding working group has also introduced a hoarding consultation panel, that contains professionals with particular expertise in hoarding: 'We have a consultant psychiatrist from NHS Fife, we have myself, we have the senior practitioner Social Worker with a specialism in hoarding.' This allows those in the group making referrals to ASP – whether from housing or Scottish Fire and Rescue - to ask for advice and guidance. 'While this is a strategic group' says Ronan, 'and there’s no case responsibility, what we were finding is that people were sharing with us … lots of good practice…' He adds 'It’s really important to take time to share good practice and give something back to all those supporting us in ASP.'
Through this, 'we’ve learnt there’s real hunger to learn and achieve more.' It also helps connect policy and practice. 'It’s all about the people' he says, and is nothing without their input.
Complexity and sharing the risk
Hoarding cases are amongst some of the most complex that people deal with on a day-to-day basis Ronan explains, 'within housing, within social work, within health and beyond that… And because they are so complex, people want to take a multi-agency approach - because no agency wants to be left with feeling as if they are carrying risk themselves.' Clearly, it’s a case of everyone doing their bit. 'And I think that's really, really helpful as well (because) if people can understand the risk.. and come together it makes (for) a more effective outcome or more positive outcome.'
Shared tools
In Fife, we have a social work contact centre to receive referrals - whether they are ASP or not - and all social workers in that team have access to the Clutter Rating Scale, Ronan explains. But the person making the referral might not have come across hoarding before or know about the Clutter Rating Scale, so their assessment is subjective without something to anchor it. In Fife they have now written into their procedure, that when a hoarding referral comes in, the Clutter Rating Scale is sent back to the referrer to provide a rating against it. 'If it's a 7, 8 or a 9 (near the top end of the scale) then it automatically has to be treated as an ASP referral. Whereas if it's less than that, there is more scope in terms of how it would be dealt with or how it would be signposted.'
In Fife, a checklist based on the HEATH tool has also been introduced - to promote conversation about different aspects or areas in the house to reduce risk when someone goes out to visit. 'It (also) means that the best possible assessment can be done when it comes to assessing the level of hoarding as well.'
This 'Spotlight on Fife' continues in part two - focusing on fire safety, and concludes with an evaluation of practice in part three.
