A little-understood mental health issue finally being recognised
Mental health really matters and so today I want to write about a significant mental health issue which I have encountered in my work as an MP. It affects people in what should be the haven of their home but is little understood.
Hoarding disorder is estimated to affect one in 40 adults, with older people more likely to suffer. These include people across all socio-economic and cultural groups and impacts both men and women at similar rates.
While most of us have a picture of hoarding from reality TV programmes, that type of often exploitative television does little to help understanding of this serious condition. Our national media should seek advice from experts including clinical psychologists about the portrayal of people with hoarding problems and desist from using mental health problems to entertain and shock the public.
For a start we need to ditch the term “hoarder” and stop othering and stigmatising people. Hoarding disorder is characterised by accumulation of possessions due to excessive acquisition and difficulty discarding possessions, regardless of their actual value.
This excessive acquisition can be characterised by repetitive urges related to amassing or buying items. Difficulty discarding possessions is characterised by a perceived need to save items and distress associated with letting them go.
This excessive accumulation can result in living spaces becoming cluttered to the point that they are not just uncomfortable but also unsafe. The symptoms can result in significant distress and often cause significant difficulties in interpersonal and family interactions. In turn, these can damage family and personal connections and make the problems even worse. Extreme clutter can also be a barrier to people receiving vital help and support and can affect employment and housing status.
Hoarding is often a secret illness due to the embarrassment and stigma attached. However, it is now recognised as a complex mental health disorder. On January 1, 2022, the International Classification of Diseases 11th Revision (ICD-11) will come into effect and hoarding disorder will be officially recognised as a distinct mental health disorder. From that date, there will be an expectation on Scotland’s health and social care professionals to be able to assess and diagnose hoarding disorder and provide treatment and interventions.
Through my work as a constituency MP, my team have uncovered two serious cases of hoarding disorder both of which were on the radar of social services but where specialist support had not been provided. In both cases my constituents had had their water cut off, one by the council and the other by a social landlord – both because there was a leak to the flat below. In the case of the council, the constituent’s water had been cut off for more than a decade.
Think about that for a moment – it is difficult to conceptualise. An entire decade where you cannot go to the lavatory at home, you cannot wash, you cannot make a cup of tea or drink a glass of water.
BY contrast, if Scottish Water experiences a mains supply issue, their service level agreement aims to have it restored within 12 hours. If there is a major incident, customers receive at least 10 litres of bottled water for every person in the household. This is a testament to how fundamental access to water is.
As an MP, I and my small team help a wide number of people with a very varied array of problems. Typically, we assist with problems relating to government departments usually benefits or immigration cases. But often people contact their MP’s office because they have very complex problems or have found it difficult to get help from statutory services and are in a state of desperation with nowhere else to turn.
No-one has ever turned up and said: “I have a problem with hoarding and I need your help.”
In the limited experience of my office, people have tended to present with multiple small problems where they needed my help. It has only been through developing a relationship with constituents and through the good work of my staff that we have been able to identify a problem and work with people to disclose their hoarding issue.
The complexity of how these cases have presented and the coping strategies people have had in place makes identifying them very difficult.
It is estimated that only around 5% of people who hoard receive help from health and social care services. This is due to a combination of things, including a lack of insight from people who hoard which means they won’t seek support, fear of being judged and a legitimate fear of severe interventions like forced house clearances which put people off seeking help. In addition, there is a lack of knowledge and understanding of the condition within health and social care and limited treatment and interventions available.
As a result of my constituents’ experiences I have written to Scotland’s new Health Secretary, Humza Yousaf, to ask the Scottish Government to provide clear national guidance to local authorities and other services like the police and fire service who often uncover cases of hoarding disorder.
Without clear national guidance, local authorities and other statutory services are making uninformed decisions about treatments which often include the forced clearance of properties which have a significant detrimental effect on individuals and often just exacerbate the problem. Everybody working with people who hoard should have access to training and information about good practice to make sure people get the right help.
A community interest company (CIC) limited by guarantee is a ‘not for profit’ company, which means that Life-Pod does not operate for private profit. Any profit generated is used to grow and develop our business that is directly benefiting people affected by clutter – hoarding.
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