16
Hoarding Disorder Patient information
Hoarding Disorder
Patient information
2 www.swlstg-tr.nhs.uk
Contents
What is Hoarding Disorder? 3
What causes Hoarding Disorder? 3
How do I know if I’ve got Hoarding Disorder? 4
What help is available? 5
Referrals 5
Assessment 5
How do you treat Hoarding Disorder? 6
After treatment 9
What other help is available? 10
Patient experiences 11
References 13
Hoarding related websites 13
Acknowledgements 14
Contact the Hoarding Disorder Team 14
Contacting the Trust 15
In an emergency 15
Hoarding Disorder 3
What is Hoarding Disorder?Many people collect ‘stuff’ throughout their lives; this can be an engaging and stimulating hobby. However people who suffer from Hoarding Disorder can take this to extremes. Items come from a variety of sources; shops (including charity shops), purchasing items from the Internet, skips, local tips, friends/acquaintances, and can be accumulated when a parent or relative dies.
The compulsion to acquire and keep these items can have a significant impact on their home: • Living space is severely reduced
• Furniture and utilities can become unusable.
What causes Hoarding Disorder?This behaviour can be long term and develop from childhood.
It is unclear why people develop this condition although there does seem to be some anecdotal evidence that genetics might play some part as well as learned behaviour.
Some people who hoard might have experienced trauma, others develop deeply held beliefs about the meaning of the items that they own. Perfectionism and a fundamental need for control can also play a part. Once the persons hoard develops a strong sense of shame can lead to increased isolation. As a result people can struggle to get help and change these behaviours. Some individuals may not realise the impact that the problem has on others around them and the detrimental and limiting effect that it is having on their lives, including their physical health and safety.
It was previously thought that people who hoarded had some form of Obsessive Compulsive Disorder , however it is now classified in DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) as Hoarding Disorder (HD), a distinct entity under the category, “Obsessive Compulsive and Related Disorders.”
It is quite possible for people to suffer from both OCD and Hoarding Disorder. As more understanding is gained of the condition it appears that hoarding can also occur in other areas including data storage and animals.
How do I know if I’ve got Hoarding Disorder?There are common beliefs that people with Hoarding Disorder often share.
These include:
• Emotional attachment to things - ”this item gives me comfort” “throwing it away would be like part of me has gone”
• Memory for possessions - “keeping this allows me to hold on to memories”
• Control of ownership - “I have to remain in complete control of my things, others mustn’t touch them.”
• Responsibility for possessions - “this could be useful in the future” “I am responsible for finding a use for this”.
People with Hoarding Disorder often find it difficult to make decisions about, and organise, their possessions.
4 www.swlstg-tr.nhs.uk
What help is available?Our Trustwide service specialises in treating people with severe, complex and resistant disorders including Obsessive Compulsive Disorder, Hoarding Disorder, Body Dysmorphic Disorder and other complex anxiety disorders. We provide community and home based interventions and there is therapist cover in each of the five boroughs – Wandsworth, Kingston, Richmond, Sutton and Merton.
ReferralsReferrals can come from primary care, for example the GP, and from secondary mental health services such as a Community Mental Health team. Referrers need to complete a referral form, which can be supplied on request and can seek telephone consultation prior to referring to discuss any queries.
AssessmentAssessment is home based so that the therapist can evaluate any risks the hoard may be posing to the individual or others.
• The therapist will find out about current difficulties, past events, motivation to change and will identify goals for therapy.
• Each room is recorded on camera, giving a baseline measure and can be an excellent motivator.
• Specific hoarding questionnaires and rating scales are used. The extent of difficulty a person has with acquiring items, hoarding items and voiding items are considered.
Hoarding Disorder 5
How do you treat Hoarding Disorder?Treatment requires great courage to change what is often a deeply entrenched behaviour. We aim to make the process as collaborative as possible so that individuals can learn to become their own therapist and apply the skills independently.
The need for medication will be reviewed at assessment. Some medications called SRIs can help hoarding as a symptom of OCD, but there is no definitive research yet to back this up.
After an assessment, if a person needs treatment, a plan will be agreed by the team and the individual concerned. Sometimes the plan may include outside agencies such as a support worker from the Council housing team or a family member. We encourage the involvement of others in helping the individual to overcome their compulsive hoarding due to the complex nature of this condition.
Very occasionally individual treatment may be offered in the short term, as a pre cursor to group treatment. Most of our patients will be offered a place in our Hoarding Treatment Group.
The group runs for about 12 sessions over a six month period at Springfield Hospital, Tooting. Sessions are weekly at first, for about six weeks, and then start to space out. There are a maximum of eight patients and two group facilitators, with no new members joining once the group has started.
6 www.swlstg-tr.nhs.uk
Each group is structured and includes:
• A dual focus on banning the acquisition of all but essential items and voiding items on a daily basis using the suggested skills
• Encouraging each member to actively ‘’void’’ items at every group
• Discussion and learning about a specific topic related to Hoarding
Disorder
• Individual goal setting and review of these goals.
• Recording of progress on camera and sharing with the group
• Cognitive therapy to challenge and alter unhelpful beliefs
• Development of an individual relapse management plan.
A follow up home visit is made towards the end of the group treatment to assess progress.
Often hoarding behaviour has been present for many years, but kepthidden through shame. Acknowledging and managing these emotions isimportant and group support from peers can be very effective in helpingto do this.
Hoarding Disorder 7
Results of Group Treatment 2014 – 16The graphs below shows results of the Savings Inventory – Revised (Frost et al) at the start, midway and end of the group. The total score is out of a maximum of 92 (a score 40 and above is typical for people with Hoarding problems). Overall improvement is 25.9%, with improvement in non-acquisition of items at 40.8%.
Total
Assessment Midway Treatment End Treatment
Clutter Subscale Difficulty Discarding Subscale
71.5
61.4
52.9
26.9
23.522.9
19.817.9
19.6
14.711.6
29
Acquisition Subscale
Sheehan Becks Depression Inventory (BDI)
23.2
20.3
17.3
23.8
20.3
13.6
8 www.swlstg-tr.nhs.uk
Total
Assessment Midway Treatment End Treatment
Clutter Subscale Difficulty Discarding Subscale
71.5
61.4
52.9
26.9
23.522.9
19.817.9
19.6
14.711.6
29
Acquisition Subscale
Sheehan Becks Depression Inventory (BDI)
23.2
20.3
17.3
23.8
20.3
13.6
After treatmentMaintaining progress is a long term process and continues well beyond treatment ending with the service. Some people find that attending a self-help group can be a useful support and contact point. In the London area there are several groups, details of which are given on page 10.
Hoarding Disorder 9
The Sheehan Disability Scale measures levels of impairment at home, work and socially and is out of a maximum score of 30. The overall improvement is 25.4%.
The Becks Depression Inventory is a measure of depressive symptoms, out of a maximum score of 63. The overall improvement is 42.8%.
What other help is available?OCD ActionAn online hoarding support group that runs on Skype (or a landline or mobile phone for those without Skype.)
• There is no cost to join the call as the call is sent out to participants
• The group runs monthly on the third Thursday of the month at 7pm
• The group has two facilitators, one of which has personal experience of hoarding issues and runs a local hoarding support group in London
• The group is also open to family members and carers as well as people with hoarding issues
Contact details: Natasha, Email: [email protected] Tel: 0303 040 1112 (Office hours) or 07933 297276
East London Hoarding Treatment GroupRuns the last Wednesday of each month 6-8pm. Contact Details: Satwant Singh Email: [email protected]
Hammersmith and Fulham Mind Hoarding Peer Support Group: Meets on the 3rd and 4th Wednesday of every month from 2-4pm at Bishop Creighton House, 378 Lillie Road, SW6 7PH. Open to Hammersmith and Fulham Residents over the age of 18. Contact Nicole for more information: 0207 471 0588
10 www.swlstg-tr.nhs.uk
Mind in Ealing and Hounslow Hoarding Peer Support Group: Meets on the 3rd and 4th Tuesday of every month from 2-4pm at Montague Hall, Montague Road, TW3 1LD (Age UK building). Open to Hounslow residents over the age of 18. Contact Nicole for more information: 0207 471 0588
Tower Hamlets Whitechapel Hoarding GroupFor further information contact Jane on 07725 481643
Hoarding Self Help Group in Leatherhead, SurreyThis is run jointly between The Mary Frances Trust and Surrey and Border Partnership NHS Trust. It meets on the 2nd Thursday of each month 7-9pm, call 01372 375 400 or text 07929024722; Email: [email protected]
Patient experiences Here are some direct quotes from recent attendees of the Hoarding Treatment Groups.
“This group has been so very helpful and life transforming. Now I am on a path to getting the house clear finally after many, many years.”
“The experience of being in the group was that of a supportive environment with the 2 facilitators providing the boundaries which made the group feel safe, like being in a well – functioning family. Although we were different from each other – we also had a lot in common and we were able to talk freely and therefore identify with other people, which reduces sense of isolation that hoarding disorder seems to bring.”
Hoarding Disorder 11
“The group therapy was new and experimental and very helpful. It has helped to meet with other people with the same problems. Sharing at each meeting including discarding items has made a great deal of difference to me.”
“This group has been so very helpful and life transforming. It helped so much to understand that I had a hoarding disorder and to see the behaviours that caused this. The expert help and guidance I received was invaluable. The group offered continual input and support in changing ingrained behaviours. The hoarding caused severe angst to me and to my whole family - preventing us from engaging in normal social activities. Now I am on a path to getting the house clear, finally after many, many years. The group is really supportive, we all are at different points, but have the same problems. I am so grateful to this highly experienced team for helping me to turn things around.”
“I have now completed the group/course. It is now exactly one year since I started therapy for this disorder. In this time I have now cleared the entire hoard from my flat, I have hot water, have a bed to sleep in, use each room for its original purpose and a kitchen to cook in. Ongoing I can now have a necessary hip replacement operation because I have suitable accommodation to recuperate in. I am in an ongoing support group for maintenance of my recovery and have developed new habits and behaviours which have become second nature and enhance my self-care and self-esteem. My depression has lifted too. In the New Year I plan to have my whole flat refurbished. This has been a very successful and life changing therapy and group for me.”
12 www.swlstg-tr.nhs.uk
References Frost R.O. & Steketee G. (2010) Stuff Compulsive Hoarding and the Meaning of Things New York : Houghton Mifflin Harcourt Publishing
Holmes S. (editor) (2015) A Psychological Perspective on Hoarding – DCP Good Practice Guidelines Leicester: The British Psychological Society
Singh S., Hooper M. and Jones C. (2015) Overcoming Hoarding London: Robinson 2015
Steketee G. & Frost R.O. (2007) Compulsive Hoarding and Acquiring New York : Oxford University Press
Tolin D., Frost R.O. & Steketee G. (2014) Buried in Treasures: Help for compulsive hoarding (2nd ed) New York: Oxford University Press
Hoarding related websites
Help for hoarders www.helpforhoarders.co.uk
Hoarding UKwww.hoardinguk.org
ocd ukwww.ocduk.org/hoarding
Children of Hoarderswww.childrenofhoarders.com
OCD Foundationwww.ocdfoundation.org/uploadedfiles/Hoarding/Help_for_Hoarding/Facilitators
OCD Actionwww.ocdaction.co.uk
There are lots of local and national resources where you can additional information to support. Local mental health teams can provide information about in your specific areas.
Hoarding Disorder 13
AcknowledgementsThank you to:
• staff for all their comments and ideas.
• Steven Chandler for the cover photograph.
• all the patients who contributed to this booklet.
Best wishes for the future.
Contact the Hoarding Disorder TeamAugusta Chandler and Robert FoggSenior Cognitive Behavioural Psychotherapists
Trustwide OCD and BDD ServiceBuilding 9Springfield University Hospital61 Glenburnie RoadLondon, SW17 7DJ
Tel: 020 3513 6961Email: [email protected] or [email protected]
14 www.swlstg-tr.nhs.uk
Disclaimer
We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, South West London and St George’s Mental Health NHS Trust does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it.
SourcesFor a full list of the sources we used:Tel: 020 3513 6006 Email: [email protected]
Contacting the TrustTrust Headquarters, Springfield University Hospital Building 15, 2nd Floor, South West London and St George’s Mental Health NHS Trust, Springfield University Hospital,61 Glenburnie Road, London SW17 7DJ
020 3513 5000
In an emergency
• Mental Health Support Line: 0800 028 8000 (for existing patients of the Trust) 5pm to 9am Monday to Friday, 24 hours Saturday and Sunday.
If you are worried about your immediate safety or have thoughts about hurting yourself or other people:
• Call 999 for emergency services or go to your nearest Accident and Emergency (A&E) department.
• If you are not currently a patient of ours you should speak to your GP (family doctor).
• You can also contact the Samaritans 08457 90 90 90 (they’re there to listen).
Hoarding Disorder 15
We are the leading provider of mental health services across south west London and a beacon of excellence for national mental health services. We serve a diverse community of people in the boroughs of Kingston, Merton, Richmond, Sutton and Wandsworth.
In keeping with the Equality Act 2010 we do not discriminate against people on the grounds of age, race, disability, sex, gender reassignment, sexual orientation, religion and belief, marriage and civil partnership or pregnancy and maternity.
Help us make our services even betterThe views of patients, their carers, friends and families are at the heart of improving the way we deliver our services. We are committed to delivering high quality care. Your feedback will help us understand what we do well and what we can do better.
If you would like to give us feedback please contact:• Patient Advice and Liaison Service (PALS): 020 3513 6150
• Feedback online at: https://feedback.swlstg-tr.nhs.uk
• Patient Opinion: www.patientopinion.org.uk
Our values
Become a member:To find out about becoming a member E-mail: [email protected] @swlstg
Connect with us
South West London and St George’s Mental Health NHS TrustSpringfield University Hospital, 61 Glenburnie Road, London SW17 7DJTelephone: 020 3513 5000Website: www.swlstg-tr.nhs.uk
Copyright © 2017 South West London and St George’s Mental Health NHS TrustPublished and distributed by: Communications DepartmentPublished: March 2017 Review date: March 2020 Ref: SWD227-V1All information correct at time of printing
If you require this document in an alternative format please call: 020 3513 6006
