12th November: Public Health England  publishes a report  on ‘COVID 19 deaths of people identified as having learning disabilities’.

The summary is available online here. (It  is actually an abbreviated plain English version of the summary in the full report).

The summary (let alone the full report) still needs to be read in full, because, as it explains, it is the result of statistical analysis of  ‘best available’ data on learning disability and mortality. (And data quality on learning disability has been a perennial problem).

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:

• “People with learning disabilities should be given a higher priority for coronavirus vaccinations when they become available.
• There should be regular asymptomatic testing for all people with learning disabilities and support staff – not just those in residential care settings. This should also be extended to family carers.”

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.

Just alerted to fact that according to latest COVID guidance, adults Down’s syndrome are now in high risk category.

See: https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/whos-at-higher-risk-from-coronavirus

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.

See what to do if you’re at high risk from coronavirus. 

(Current key advice: “You’re advised to stay at home as much as possible until 2 December”).

More on this to follow…

Just published: CQC Report “Out of sight – who cares? A review of restraint, seclusion and segregation for autistic people, and people with a learning disability and/or mental health condition”.

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'”

• “https://www.independent.co.uk/news/health/hospitals-autism-learning-difficulties-care-cqc-report-england-b1226753.html 
• https://www.nmc.org.uk/news/news-and-updates/response-to-cqc-report-out-of-sight-who-cares/
• https://medium.com/@CareQualityComm/cqc-out-of-sight-who-cares-a-human-rights-issue-ec817dcc3e87 
• https://www.bbc.co.uk/news/uk-54638693

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…

On Monday June 8th Rescare launched its film “Learning Disability the Right to Choose” via a well-attended  Zoom meeting.

The film aimed to highlight current challenges facing people with learning disabilities, their families and carers; and to clarify and restate Rescare’s  future priorities and objectives.

This short film is now available to view via YouTube at this location: https://www.youtube.com/watch?v=9vrhHiJXj_g    .

If you have not seen it already, we hope you enjoy it.  Please feel free to share this  link with others .

NHS England medical director Professor Stephen Powis has announced that deaths of people with learning disabilities or autism in acute hospitals will be reported, starting from week of 11th May. This was announced at the Coronavirus press conference on May 8th.

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 info@rescare.org.uk

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 Care Quality Commission’s Annual Report ‘The State of Care’ has been published today, offering us the CQC’s latest assessment of health care and social care in England.

Access details of the report, view the Press Release launching it , and download the Summary and Full Report from this page on the CQC website.

A key finding of the report is that “a better system of care is needed for people with a learning disability or autism who are, or are at risk of, being hospitalised, segregated and placed in overly restrictive environments”.

The CQC calls the current situation unacceptable.  Continue reading →

Just received: a press release from the LGO, who is so concerned at the percentage rise in complaints about EHCPs, and in the proportion of complaints he upholds, that he has issued a special Focus Report on the failings of the SEND system.

“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.

Continue reading →

Published today, the Local Government and Social Care Ombudsman’s Annual Review provides an overview of the state of adult social care, confirming what many people with learning disabilities, and their families and carers, will  know through personal experience.

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.

Following the publication of the Care Quality Commission’s “Thematic Review of Restrictive Practices, Seclusion and Segregation”, Minister Caroline Dinenage has now issued a written statement on behalf of Department of Health and Social Care.

She begins with the following statements:

“The Government has made improving the care and treatment of autistic people and people with a learning disability a priority. Society is rightly judged on the way it treats its most vulnerable citizens.

In November 2018, the Secretary of State for Health and Social Care made a statement to the House of Commons following the reporting of the case of Bethany, a young autistic woman who was held in seclusion in hospital for too long.

Like everyone across the House, I have been moved by these individual cases and personal stories. I do not believe this is just about a few individual cases where things went wrong; this is about a system. A system across health, education, social care and criminal justice that needs to change.“

Continue reading →