View from the street: Worrying talk about ‘do not resuscitate’
- Credit: Archant
If the coronavirus pandemic lockdown has been difficult for everyone, it has been especially challenging for families with a member with learning disabilities, autism or mental illness.
Prolonged school closures have presented problems for many parents of typically developing children who have been prevented from seeing their friends and all their usual activities.
These problems have been even greater for children who may experience high levels of anxiety and challenging behaviour, who have been confined to the home and denied access to parks, swimming pools and play spaces. Many families with disabled children in Haringey do not even have access to a garden.
The threat of Covid-19 has been a particular worry for adults with autism and learning disabilities, whether in residential care or in their own homes. Even before the pandemic struck, we were aware that the risk of premature death in this age group is around four times that of adults of a similar age. Many older autistic adults suffer from conditions such as diabetes, epilepsy and obesity that may make them more vulnerable to Covid-19.
The most basic problem is a lack of data - NHS England has no plans to publish relevant figures until next year. According to my former Open University colleague, the learning disability historian Jan Walmsley, this reflects a legacy of past neglect. As she says, “we need to know who has died prematurely from this virus so action can be taken to ensure that the same mistakes are not made again”.
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Reports that, at the height of the pandemic, care homes were asked by NHS managers and GPs to place blanket “do not resuscitate” orders on all residents have provoked widespread concern. A study by the Queen’s Nursing Institute revealed that such practices extended to homes for younger people with learning or cognitive disabilities.
Charities such as Turning Point and Learning Disability England are taking up cases in the courts, with the former saying in some cases a diagnosis of autism or learning disabilities has been considered reason to impose a DNR order, without consultation with families, nursing staff or residents themselves.
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I am relieved to report that Haringey Council has taken a clear and firm stand on the issue of DNR orders.
Cllr Sarah James, cabinet member for adults and health, has said “making an advanced DNR decision on an individual’s treatment based on the fact that they have a learning disability, is unlawful and inhumane”.
• Following a spirited campaign led by Haringey autism activist Martin Hewitt and reported in my last Ham&High column the council has agreed to re-open Finsbury Park, (closed to all vehicles since the start of the lockdown) to allow disabled parking only.
Cllr Kirsten Hearn says the council is committed to “removing barriers that stop disabled
people’s inclusion” – and that free parking will be available all day, not only at lunchtime as at present. This is welcome news to all people with disabilities, as the park makes a vital contribution to their wellbeing, above all in pandemic times.