Here to help with questions relating to learning disability and its impact on family carers
Two Rescare trustees attended a webinar at the Royal Society of Medicine yesterday (30th April 2020) on Equity for Learning Disabled people during Covid-19. It was a powerful and worthwhile session and we highlight below the major points.
There were three main contributors:
Baroness Hollins who is herself a parent of a learning disabled person reminded us that learning disabled people are subject to “dehumanising attitudes” every day – this has not changed. An example is the initial failure to consider people with learning disabilities in the frailty guidelines issued to hospitals.
We need to pay attention to the physical and mental health of our loved ones with learning disabilities, both during and after the lockdown. Baroness Hollins pointed out that people with learning disabilities are 3 times more likely to die of an avoidable cause even in normal circumstances – respiratory illness is the top cause (40% of deaths in this group) and sepsis comes second. This she said is even more of a concern in the current situation.
In terms of mental health; she thought our loved ones with learning disabilities may find it hard to understand why their usual activities and support have been withdrawn. Many people have returned home to shelter with their families – often elderly parents – during the lockdown, which can be difficult for both sides. The understandable upset caused by changes in daily life due to Covid-19 may lead to challenging behaviours and prescribers may have inappropriate recourse to psychotropic drugs. In addition, loss of healthcare appointments may lead to health issues further down the line.
Dr Regi Alexander spoke about the importance of planning ahead. People with learning disabilities often find change difficult and the lockdown has meant a great deal of disruption to their lives. It is still wise to plan for other potential changes by discussing the possibility of becoming ill, talking about how people can die, and preparing a Covid care plan and a hospital passport.
Dr Silvana Unigwe spoke about what GPs are doing. She advised that it is possible for GPs to add people to the “shielding” list. The GP can then refer the person to the “Good Sam” volunteer support system. Some people have had success with this, others have not been successful but she thought it is worth asking, especially if you are struggling.
Baroness Hollins recommended the “Without Words” series of books. There are some available free as eBooks, which explain the Covid-19 pandemic and situations that our relatives with learning disabilities may encounter.
We hope to receive the slides and useful contact websites from this webinar in the next couple of days – if you would like a copy please email us at firstname.lastname@example.org
Rescare is planning to look into the effects of lockdown on people with learning disabilities and their families – if you would like to contribute to this please email us at the above address.