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loved ones with learning disabilities may find it hard to understand why their usual activities and support have been withdrawn.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 →

“First of its kind autism centre aims to dramatically cut diagnosis waiting time”

This is the headline today on Sky News introducing an article on the opening of an autism diagnosis centre in Keele, Staffordshire.

The headline above an article in the ‘i’ newspaper (sorry, I can’t find it online) reads “Children’s Centre will end autism postcode lottery”.

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:

The Caudwell International Children’s Centre (CICC)

The Parliamentary Joint Committee on Human Rights (JCHR), having initially launched a wider inquiry into the detention of young people, is now conducting two separate, more focused, and inter-related inquiries into the detention of people with learning disabilities and or autism in mental health and NHS inpatient facilities.

To quote  the JCHR website:

• “As a result of evidence arising from its inquiry into youth detention: solitary confinement and restrain, the Committee has taken evidence on the inappropriate detention of children and young people with learning disabilities and/or autism in mental health hospitals and the threat that such placements pose to their human rights.”

• “As part of its inquiry into detention, the Joint Committee on Human Rights will hold two evidence sessions about the treatment of people with learning disabilities and autism in Assessment and Treatment Units (ATUs) and other inpatient units.”

Continue reading →

The Care Quality Commission (CQC) has just published ‘The State of Care 2017/18‘, its annual assessment of health and social care in England. The report ‘looks at the trends, shares examples of good and outstanding care, and highlights where care needs to improve’.

You can find links to the report, plus a summary and an easy read version on the CQC’s introductory webpage.

Obviously, the report covers an awful  lot of ground and topics. Almost every reference to learning disability is accompanied with an observation on ‘room for improvement’.

The most relevant sections relating to learning disability are on page 48 and page 111 of the report (See extracts below). Having read these, and seen some of the statistics cited, you may think that the report understates the deficiencies in health and social  care for people with learning disabilities.

Continue reading →