An edited recording of parental and expert contributions to Naga Munchetty’s programme, including that of Rescare’s Chair Anita Bennett, is being prepared; a link will be posted here as soon as possible.
When available, this will comprise a condensed guide to the best case yet for parental residential choice,
Only national charity Rescare is lobbying for central government portable funding, and for an immediate end to this appalling postcode lottery.
Details of the main findings will follow below. The report received remarkably little media attention upon publication. But today an article by Jonathan Senker, CE of advocacy and involvement charity VoiceAbility, entitled ‘Covid-19 deaths must prompt better healthcare for people with learning disabilities’ has appeared in the Guardian Society section . Jonathan calls for future improvements to address failings in health care which existed before the Covid crisis. In the immediate future he has two requests:
Rescare agrees with these suggestions.
The Main findings (from PHE Report Summary) now follow:
LeDeR received 623 reports of deaths, which were definitely or possibly COVID-19 related, among people with learning disabilities between the beginning of February and 5 June. This suggests an estimated national total of 956 deaths, after accounting for under-reporting.
Based on the deaths reported to LeDeR, the COVID-19 death rate for people with learning disabilities was 240 deaths per 100,000 adults with learning disabilities. This is 2.3 times the rate in the general population for the same period. However, after adjusting for under-reporting the estimated rate was 369 per 100,000 adults, which is 3.6 times the rate in the general population.
CPNS, which only records deaths that happen in hospital, recorded 490 deaths of adults with learning disabilities with COVID-19 up to 5 June. This is a rate of 192 deaths per 100,000 adults with learning disabilities, which is 3.1 times the rate for adults without learning disabilities. This is likely to be an underestimate as a quarter of deaths reported in CPNS do not say whether or not the deceased had learning disabilities.
Most deaths (82%) of people with learning disabilities from COVID-19 happened in hospital. This was higher than the proportion of all deaths in previous years (60%) and higher than the proportion of COVID-19 deaths in the general population (63%).
During the peak 3 weeks of the pandemic, the number of deaths from all causes for people with learning disabilities were 3 times the average for the corresponding period in the 2 previous years. For the general population, deaths were twice as high during the same 3-week period, than the 2 years before.
Of the deaths recorded in the CPNS up to 5 June, 1.8% were of people with learning disabilities. GPs in England recognise only 0.57% of adults registered with them as having learning disabilities. So, adults with learning disabilities were over-represented by at least 3.1 times among the numbers of people dying. The disparity was much larger in younger age groups.
This Guidance states:
If you’re at high risk from coronavirus, you should have received a letter from the NHS.
Speak to your GP or hospital care team if you have not been contacted and think you should have been.
What to do if you’re at high risk
If you’re at high risk from coronavirus, there are things you can do to help keep yourself safe.
(Current key advice: “You’re advised to stay at home as much as possible until 2 December”).
More on this to follow…
Posting in a hurry but please follow these links:
The report itself… https://www.cqc.org.uk/sites/default/files/20201022b_rssreview_report.pdf
And reaction to it. (BBC News headline is “CQC report: Care of people with learning disabilities ‘inhumane'”
The BBC report has details of ‘the Bethany case’, which featured in articles in the Independent in 2019 & 2020 by journalist Ian Birrell (articles to which we have referred in earlier posts and tweets)
More to follow…
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.