Challenges in Hackney Making Room Research Making Room who are we? - Through delivery of the Mobile Repair Service (MRS Independent Living)s core service it became apparent that there is a definite need for a specific service to provide support around hoarding within the borough. - The MRS developed a pilot scheme led by Gill Jackson, which identified and supported almost 40 people who have hoarding related issues. - The MRS co-hosted an event with the Hackney Community and Mental Health team in June The feedback was almost unanimous in recognising: The current lack of services specifically designed to support hoarders The need for an alternative approach that recognises that this is a multi- sectoral problem that organisations cannot resolve on their own. From this Making Room was established, as a theraputic decluttering support service for adults with hoarding behaviours. Living with a hoarding condition in Hackney who am I and how does this affect my daily life? (2014) Making Room, on behalf of MRS Independent Living was commissioned by Healthwatch Hackney and the CCG through the Innovation Fund to produce a report on adults with hoarding disorder in Hackney. We analysed data on 90 adults that has been assessed by MRS /Making Room, and invited 25 of these participants to be interviewed, of which 4 participated. Our report concluded that there is a population of adults with hoarding behaviours living in Hackney, and the trends and themes identified in this report echo finding of other published studies in the UK and America. Living with a hoarding condition in Hackney who am I and how does this affect my daily life? (2014) Gender Profile of Adults with Hoarding Behaviours on MRS Independent Living database living in Hackney. Population of Adults with Hoarding Behaviours by age (nominal and proportional %, median highlighted in grey) Living with a hoarding condition in Hackney who am I and how does this affect my daily life? (2014) Housing Tenure of Adults with Hoarding Behaviours on MRS Independent Living database living in Hackney. Proportion of Adults with Hoarding Behaviours who have a disability Living with a hoarding condition in Hackney who am I and how does this affect my daily life? (2014) Theme 1: Loss / trauma Loss of childhood innocence - the loss of a father (through a sudden death) and move from abroad to London I hung onto everything Ive got to have my possessions and have control over things and feel likeIm worthy of having these things A childhood with an abusive father who used to terrify the participant from a young age. Theme 2: Physical and mental wellbeing Two of the four participants were receiving counselling support through their GP to manage their anxiety and depression. One of these participants had not told her counsellor that she was a hoarder because she never asked me Frustration at the limited support available through mental health services - hoarding is not a quick thing to cure, it needsthe people who are hoarders need continuous supportmaintenance is so important otherwise you go back to what youve been used to. Theme 3: Negative experiences accessing support services All four participants were referred to MRS Independent Living and Making Room through front line services three through mental health services that they were already engaging with, and one through her housing officer. All four participants expressed frustration at the lack of services that were specifically available to support people with hoarding behaviours. All four participants agreed that there should be a specific service for people with hoarding disorder to access, but all four had differing opinions on what or where this should be within the health and care services within the borough based on their personal experiences. Theme 4: Self-management of hoarding behaviours Hoarding specific peer support groups in London Hoarding group is useful as we all share something Keen to have similar peer support in Hackney, reluctant to have responsibility for organising or establishing this. Living with a hoarding condition in Hackney who am I and how does this affect my daily life? (2014) I remember them singing youll be evicted, youll be evicted in a horrible way but this was when hoarding was in its infancy.now I know more I only welcome people who are not abusive into my home I used to have stuff in the hallwayI received a letter from the Housing Association 12 years after moving in telling me theyd evict me if the clutter wasnt cleared There was no conversation or no- one approached me previously to talk about it I have a big emotional attachment to my stuff so when you have got to get rid of it and you have no choice he [the participants GP] told me dont ask for help because theyre not help available...what do you need help with? Youre fine, youre just eccentric But I knew it was more than that but what could I do? There was nowhere for me to go Service Users experiences Living with a hoarding condition in Hackney who am I and how does this affect my daily life? (2014) Report Recommendations To establish clear pathways for adults with hoarding behaviour to access support To develop access to services that can provide information and straightforward access to financial advice within a supportive context To identify and appoint a lead individual, agency or partnership identify and manage multi-agency support To develop and launch an awareness campaign within support services and across the borough To develop a hoarding specific training programme for front-line staff Develop an awareness campaign for residents of Hackney Design, produce and commit to a hoarding protocol for the borough Current Situation- Facts & Stats The prevalence of hoarding disorder is between 2% and 5% of the population (DSM 5) This means that there may be between 3,700 11,100 adult residents of Hackney with a hoarding condition Making Room identified 90 Hackney residents with hoarding behaviours. This suggests that 98 99% of the potential population of hoarders in the borough has not yet been identified. 11,100 (5%) 3,700 (2%) 90 ( %) What are Making Room doing in Hackney Making Room has developed a three part resource to resolve the current gap in service provision for adults with hoarding behaviour. 1. A one to one therapeutic decluttering programme based on the evidence based model developed by Frost and Steketee (2007) 2. A training programme for all front-line staff to identify and support adults with hoarding behaviours. 3. Promotion of Hoarding Disorder via partnerships with borough providers, C&H Psychological Therapies Alliance, Pan London Hoarding Taskforce The Clutter Image Rating (Frost) Making Room Case Studies Case Study 1 - Profile Client Profile Male, 58 Lives alone Housing Association tenant Client Profile Male, 58 Lives alone Housing Association tenant Referral Pathway Referred by Floating Support Officer Tenancy at risk due to inaccessibility for safety checks Referral Pathway Referred by Floating Support Officer Tenancy at risk due to inaccessibility for safety checks Initial Making Room Assessment: High Level Hoarding Client is a crisis level Hoarder. His home environment is cluttered to the point of all rooms unfit for purpose. He is full of remorse and guilt but does not have the physical or mental health to remove the clutter. He is climbing over possessions via the back door. Initial Making Room Assessment: High Level Hoarding Client is a crisis level Hoarder. His home environment is cluttered to the point of all rooms unfit for purpose. He is full of remorse and guilt but does not have the physical or mental health to remove the clutter. He is climbing over possessions via the back door. Case Study 1 Proposed Support Client Goals agreed with Making Room support Funding Hackney Council & Housing Association Making Room tester sessions Consent & Commitment from Client Making Room, Hackney Social Services and the Housing Association developed a costing proposal for panel where 20% of the programme cost was paid by Adult Social Services, and the remainder by the HA. To regain use of house, improved quality of life Have gas re connected Fix leaking taps & toilet To regain use of house, improved quality of life Have gas re connected Fix leaking taps & toilet Case Study 1 Taster Sessions (2) 2 Making Room staff and client 2 x 2 hour sessions over 2 weeks Conclusion: Client is committed and ready for Making Room programme. Case Study 1 Making Room Programme Current Status - Ongoing Hours worked together thus far: 124 over 31 weeks 2 members of staff for 2 hours per week. recently changing to 1 member of staff for 2 hours twice a week, as client is able to make decisions at a faster pace and ready to work more intensively with 2 staff. Progress: Initially not keen on donating or selling items- now feels some pleasure at helping others. We set achievable boundaries with client with regards to collecting rather than prohibiting- did want to increase his feelings of guilt- he is now doing very little collecting saying hes gone off it a bit Initially we would take the lead and and directly ask KS what he wanted to do with the items- he is now making many of these decisions himself. Transfer of confidence: Client is becoming more able to make healthy choices for himself he would like to cook and have heating. Case Study 1 Environmental Impact Emotional developments for client - Adjustments to new living spaces Some difficulty adjusting to empty room and an initial reluctance to make use of the room. Case Study 1 Environmental Impact Our client has now got a bed he can access and sleep in however, he is not using it yet, but has rearranged the furniture in a more homely way. Next Steps? Making Room will continue to work with the client to declutter his home. We will also continue to encourage our client to access care and support agencies. Case Study 2 - Profile Client Profile Female, 79 Lives alone Home Owner Client Profile Female, 79 Lives alone Home Owner Referral Pathway Self Referral Client had received a letter from Private Sector Housing in response to complaints by neighbours Referral Pathway Self Referral Client had received a letter from Private Sector Housing in response to complaints by neighbours Initial Making Room Assessment: High Level Hoarding Client is a crisis level Hoarder. Her home environment is cluttered to the point of all rooms unfit for purpose and inaccessible. Client is apologetic and believes ill health is reason for clutter (she has had cancer twice) Significant childhood trauma regarding temporary loss of mother. Initial Making Room Assessment: High Level Hoarding Client is a crisis level Hoarder. Her home environment is cluttered to the point of all rooms unfit for purpose and inaccessible. Client is apologetic and believes ill health is reason for clutter (she has had cancer twice) Significant childhood trauma regarding temporary loss of mother. Case Study 2 Proposed Support Client Goals agreed with Making Room support Funding Self Funding Making Room tester sessions Consent & Commitment from Client Making Room offered to refer client for support to apply for a personal budget / charitable grant but client declined as she does not want to be means tested. To clear garden and stop neighbours complaining Clear house before she dies To clear garden and stop neighbours complaining Clear house before she dies Case Study 2 Initial Programme 2 x Making Room staff and client working in the patio 2 hour sessions over 5 weeks Making Room also corresponded with PSH regarding letter & inspection Case Study 2 Making Room Programme Current Status - Ongoing Hours worked together thus far: 158 over 49 weeks Due to physical health needs of this client, sessions only increased to twice a week due to external circumstances to meet building works deadlines. Progress: Initially very reluctant to disregard anything that wasnt obviously unusable. Programme progress was focused on the hallway, with the long term goal being to declutter the hall, bedroom and bathroom to ensure suitable living environment before decluttering the living room & kitchen (the largest and most cluttered space). However, dry rot was found in the ceiling of the living room in April, so intensive decluttering had to be completed then. Joint Working: Private Sector Housing worked with Making Room and the client to direct and advise targeted decluttering for building surveys to be completed. Case Study 2 Initial Programme After the initial 5 week programme in the back garden, the client asked us to continue to work with her in the hallway, as PSH would need access when they would come to inspect the property in response to the complaint made. Case Study 2 Initial Programme After the discovery of dry rot in the rear extension was discovered, the need for access became even more critical, and the hallway had to be completely decluttered. Our client managed this situation incredibly well, and was able to make difficult decisions with our support. While she did some small scale decluttering in between sessions, the goals between sessions were just to keep the decluttered spaces clear, which she did. Case Study 2 Intensive Programme After the decision of dry rot was discovered, the focus of the decluttering had to move to the back room. This was the room where our client slept, and kept most of her personal possessions. Case Study 2 Environmental Impact As our client was used to the Making Room programme, and had developed good working relations with her Making Room staff increasing the tempo of decluttering )while difficult) was possible. PSH were very supportive and sensitive to our client during inspections and work negotiation discussions. Room started 04/15 18/09/15 Case Study 2 Next Steps Environmental: We will continue to declutter with the client focusing on the bedroom, to create a bed- sit environment for her to occupy. We are expecting to have to suspend decluttering when building works begin, but will discuss with the contractor (at clients request) Emotional: We have offered to support the client to therapeutic services and are very aware that there may be a PTS effect after the accelerated decluttering of the living room. Our staff will continue to discuss support options with her, and go with her to any she feels would be helpful. Financial: PSH have been very helpful and send our client grant forms to assist with costs of building works. If our client agrees, we will support her to complete these forms. Social: Our client is currently living with her sister as it is not safe for her to be in the living room (where she was sleeping) and the bedroom is inaccessible. This is not the clients preferred choice, so we will work with her to get access to her bedroom. Case Study 3 - Profile Client Profile Male, 77 Lives alone Private Rented Tenant Client Profile Male, 77 Lives alone Private Rented Tenant Referral Pathway Referred by One Hackney community navigator Client has diagnosis of early onset dementia consent given by client and family Referral Pathway Referred by One Hackney community navigator Client has diagnosis of early onset dementia consent given by client and family Initial Making Room Assessment: High Level Hoarding Low to medium level hoarder, mainly arty material stacked haphazardly. Trip hazards in art room, living room, and bedroom. Kitchen and bathroom need rearranging and tidying. Initial Making Room Assessment: High Level Hoarding Low to medium level hoarder, mainly arty material stacked haphazardly. Trip hazards in art room, living room, and bedroom. Kitchen and bathroom need rearranging and tidying. Case Study 3 Proposed Support Client Goals agreed with Making Room support Funding One Hackney Consent & Commitment from Client & next of Kin Making Room sits on the One Hackney framework, where a bespoke intervention programme can be provided for suitable referrals. This programme is 8 hours of one to one decluttering support. To remove trip hazards To support client to sort his possessions To remove trip hazards To support client to sort his possessions Case Study 3 Making Room Programme Current Status - Closed Hours worked together: o10 over 5 weeks 1 members of staff for 2 hours per week. Progress: HRA began by identifying trip hazards with client and agreeing solutions together to resolve these. Client led in discarding of unwanted possessions (refuse / recycling / charity) and HRA sorted, tidied and placed items where client wanted them. Outcomes: Property safer as trip hazards removed possible for care and support services to be put in place to ensure ongoing wellbeing of client. Client was not hoarder in typical sense his inability to manage his space was due to decline in health. This made it easier for him to make decisions on what to keep and what to let go of. Case Study 3 Environmental Impact Clients living room before and after intervention. It is now possible for ongoing domestic support to be put in place to support the client to maintain his home. Case Study 3 Environmental Impact Clients art room before and after intervention. This room was rearranged to the clients instruction and items we only discarded by him. All art work that was to be kept was ordered and stacked safely, so client can still enjoy his work. Thank you for listening - any questions?