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.“

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“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.”

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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.

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Further to our feature article on Learning Disability, Health and Obesity , and specifically our  reporting on Public Health England events in August and October.  Speakers from Public Health England (PHE) were keen to emphasise that people with learning disabilities and/or autism should be able to access those services from the NHS to which they are entitled (e.g. annual heath checks, flu vaccinations, eye tests etc.); and that they and their carers should expect NHS staff to make reasonable adjustments in order to provide those services.

PHE has now (Oct 11th 2018) published a ‘Collection of Guides to Reasonable Adjustments’ on GOV.UK. The webpage is entitled ‘Reasonable adjustments for people with a learning disability‘. This centralisation of available information seems an eminently sensible thing to have done, at last!

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Received in today, an email from the Petitions team at Parliament:

Dear xxxxxx,

Parliament debated the petition you signed – “Prevent avoidable deaths by making autism/learning disability training mandatory”

Watch the debate: https://parliamentlive.tv/Event/Index/b10b5496-54a6-4262-bb54-5c74ec58eedf

Read the transcript: https://hansard.parliament.uk/commons/2018-10-22/debates/F8EBB4E2-C858-4B5B-B2E0-39D0C25EAA4C/AutismAndLearningDisabilityTrainingHealthcareProfessionals

Read the research: https://www.parliament.uk/business/committees/committees-a-z/commons-select/petitions-committee/news-parliament-2017/autism-training-22-10/

The petition: https://petition.parliament.uk/petitions/221033

Thanks,
The Petitions team
UK Government and Parliament

It is actually worth looking particularly at the transcript of this Westminster Hall debate. The debate may not have been well attended (to judge from the TV images), but those attending were knowledgable of  and/or interested in the issues raised.

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The Mental Capacity (Amendment) Bill is proceeding through Parliament. Following upon the DoLS crisis, about which we  posted and wrote extensively in recent years, the Bill’s primary purpose is to replace the Deprivation of Liberty Safeguards (DoLS) with the Liberty Protection Safeguards (LPS) proposed by the Law Commission’s Review.

Last week Rescare received email alerts on a Committee Stage debate in the House of Lords, in which speakers with expert knowledge of the issues and an interest in learning disability, such as Baroness Hollins, voiced their concerns over assessments of capacity by care providers and ‘registered managers’, and over the introduction of  inadequately defined terminology, especially ‘unsoundness of mind’.

The Hansard transcripts of the Lords debate, and  background information on the contents  and intention of the the Bill are available here on the Parliament website.

If you require a thorough anaylsis of  the Mental Capacity (Amendment) Bill, comprising ‘a series of perspectives’ written by barristers expert in mental capcity law, we can recommend the Special Report available on the 39 Essex Chambers website …

But also. to coincide with the Lords Committee Stage debates, a consortium of organisations with shared concerns about the Bill published  a more concise press briefing, which we think is worth reproducing here in full – since it outlines clearly the most controversial elements of the Bill.

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… So runs the headline today above a special report by Sally Weale and Niamh McIntyre in the Guardian’s Education Section, available to read online here . And it is worth reading.

The article catalogues the systemic  failures in the SEND system, as local authorities, faced with their own funding crises, and schools with conflicting priorities, struggle to meet their legal obligations. The article is, in effect, a summation of many of the recent  posts and tweets Rescare has published about SEND and related issues.

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Learning Disability and Obesity… So much to say, and so much already said on this issue that we have given it a separate page, now located under the drop-down menu ‘Key Issues and Topics’*.

Take a look. I have tried to give an overview of the issues and Rescare’s concerns, and realise that there is a lot there to read.

This is a ‘hot topic’ within the general media, e.g. the stories in the press and online today about fast food outlets (“More takeaways on high street despite anti-obesity push” (BBC News) ) . It will I suspect be impossible to keep up with, and report on all developments.

I will however attempt to generate updates on what I have  already posted; and the intention is to use the webpage as a ‘baseline reference’ to cite when raising the issue in correspondence and emails.

* I took the opportunity to have a tidy-up of the menu structure as a whole at the same time.

JR

We listened  with interest this morning to Radio 4’s Today programme.

(To be specific,  the time was 8:42 am,  and the relevant discussion can be heard online at time-point ‘2:42’ of the broadcast, available online at  bbc.co.uk/programmes/b0b90pym#playonline  ).

The Today programme’s interviewees were:

Alex Rook, senior  partner at the solicitors Irwin Mitchell, who specialises in Human Rights and Court of Protection issues, and

Rosa Mockton, learning disability campaigner.

They were describing how today they will appear in court  to argue that the Court of Protection is not (but should be) appointing Deputies for Personal Welfare (‘Welfare Deputies’) on a consistent and true interpretation of the ‘best interests’ of the person lacking capacity . They will argue that because the Mental Capacity Act  and its Guidance focus on exceptional and difficult cases, and assume that the majority of cases will be decided ‘through agreement’  after ’round the table discussions’, best interests are often under-considered or mis-considered.

Rescare has campaigned on this issue since the Mental Capacity Act was implemented. We have first-hand knowledge of how unsuccessful most of our members (parent carers) have been in any applications for welfare deputyship. On this website, their is an earlier blog post on this theme, entitled ‘The Eye of A Needle’!

Rook and Monckton  argue (like us) that the practical reality of the implementation of the Mental Capacity Act has been the dis-empowerment of family carers and parents;  while conversely social workers and care departments have been allowed to take more best interest decisions – although  those decisions are increasingly based not on best interests alone but affected by financial  and policy considerations. In answer to the interviewer’s question, they explained that they were well aware that there are degrees of incapacity; that they were concerned that the views of adults with some capacity are not sufficiently sought or considered, and that the best interest assessment of those with more serious conditions is often flawed.

The interview is well worth listening to. It will be available online for the next month. We will update you on developments…

PS. Rook and Monckton’s petition to the court was crowd-funded. I think we owe a debt of thanks to all those who contributed.