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loved ones with learning disabilities may find it hard to understand why their usual activities and support have been withdrawn.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.
The CQC calls the current situation unacceptable. Continue reading
“Children with special educational needs and disabilities are increasingly being failed by the system designed to support them, the Local Government and Social Care Ombudsman has found.
In its latest report about the Education, Health and Care (EHC) plan process, the Ombudsman has revealed it is now upholding nearly nine out of every 10 (87%) cases it investigates – a startling figure compared with its uphold rate of 57% across all cases it looks at, discounting SEND cases.
As the Ombudsman Michael King puts it ” The challenging picture we see played out in the media on an almost weekly basis is very much reflected in the types and seriousness of the complaints we receive and the faults our investigations put right. Many of the issues we see appear to be driven by attempts to ration scarce resources, and we received and upheld more complaints about fees and charging this year than in previous years. While I recognise the challenging environment both commissioners and providers are operating within, any attempts to reduce costs must also properly consider the impact on the rights and dignity of people who use services, and must comply with both the letter and the spirit of the Care Act 2014″.
The Review is always worth a look. If nothing else, read the Ombudsman’s 2-page forward. Or follow the links and dig down to the league table spreadsheets – to see how any particular local authority has performed with regard to complaint-handling.
The NAS has long highlighted the twin problems affecting the diagnosis of autism in children; the postcode lottery and long-waiting times. (As a parent, I have had personal experience of both). The ending of a postcode lottery and dramatic cuts waiting times are admirable intentions, and we wish the Caudwell International Children’s Centre (CICC) all the best in these ambitions, although we note that the project is not without controversy
In the absence of public funding, a private individual, John Caudwell, billionaire founder of Phones4U, has paid for most of the development as an act of philanthropy. In 2017, when he initially pledged £9 towards the cost of the centre, he and his charitable foundation were criticised by some for espousing and supporting too many ‘alternative and non-scientific therapies’, notably in article by The Times’ Science Correspondent.
We hope and assume that the fact that the CICC is located within Keeele University means that academic and scientific rigour will be applied to its operation. We will await developments…
This is how the CICC announced the opening on its website: