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EHRC: UK’s lack of compliance with the UN Convention on the Rights of Persons with Disabilities – “deeply concerning”.

We have written previously about the UN Convention on the Rights of Persons with Disabilities  online here and in our members newsletter (Resnews). For the UK, the road to compliance has been long and winding, and I’m still not sure if ‘we’ are much further forward.  Sadly it was not surprising a few weeks ago (10th Oct.) to read  the headline “The treatment of disabled people in the UK is getting worse, according to a highly critical report from the Equality and Human Rights Commission (EHRC)”,  introducing a thoroughly depressing analysis of lack of progress .

The headline appeared above an article on the website of the Rights Info, a voluntary organisation set up about two years ago produce ‘engaging, accessible and beautifully-presented online human rights content’ i.e. something the layman could understand. (The website has a discreet section on Disability and Human Rights which is worth a browse).

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Evaluation of Named Social Worker (NSW) Pilot concluded. What next?

In 2016, the Department of Health and Social Care (DHSC) initiated the Named Social Worker (NSW) pilot ‘to build an understanding of how a named social worker can help to improve outcomes for individuals with learning disabilities, autism and mental health conditions’. The Social Care Institute for Excellence (SCIE)  was commissioned to run the pilot scheme in 6 locations

The Pilot has now concluded, and the SCIE  has reported on its findings – details here. The Report is generally favourable, having analysed three area of impact: Impact on the individuals and the people around them, Impact on the named social workers, Impact on the wider system.

This is how the SCIE summarised the pilot’s results:

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Journalist Ian Birrell rages at treatment of people with PDA and autism.

Two recent articles in the i by the journalist Ian Birrell have left us here at Rescare angry, but to be honest not too surprised.

Please read them, since they highlight what is a national scandal and disgrace. Ian is clearly seething with rage, and we suspect and hope that he will not give up on this issue. It is a minor comfort to read that some politicians have heard his cries and taken up the issue.

Brace yourself, and read the following two article which appeared within two weeks of each other:

7th Oct 2018:  A teen with autism is locked in solitary confinement and being fed through a hatch. Have we really moved on from Bedlam?

We hope this blog post contributes however slightly to highlighting the issue Ian Burrell raises.
(Further to recent posts and updates by Rescare on Learning Disability, Health and Obesity, may I just highlight a single paragraph from Ian’s second article: “Despite huge sums of public money spent to place her in a supposed safe space, her weight was allowed to soar. Staff said they tried to encourage her to eat well – yet one week, she ate nothing but ice cream. Stephanie was 13 stone when shut away. Seven years later, her weight had doubled – and she was dead. She died from heart failure and sleep apnoea caused by obesity.”

Public Health England, the NHS, and People with Learning Disabilities

Last week I attended a conference in Birmingham organised by Public Health England , entitled ‘Public health and people with learning disabilities: national evidence for local action’.

There was a wide range of attendees, including people with learning disabilities with their carers and families, representatives from the voluntary sector and charities such as Rescare, Autistica, the Challenging Behaviour Foundation, together with many representatives of the NHS and local government from across England. There was even one observer  from Ireland!

The broad aim of the conference was to assist Public Health England in deciding what proposals it should present to NHS England for improvements in the health care and health outcomes of people with learning disability and/or autism.

At this point I should remind you that in August, to celebrate the 70th anniversary of the NHS. the government announced specific extra funding to achieve improvements in four ‘sectors’, one of which was learning disability.  There now exists the ‘NHS Learning Disability and Autism 10 Year Long Term Plan‘ . The initial discussion phrase of the plan has just ended, and this conference was intended to continue the process of defining objectives and proposals. Continue reading

Learning disability- the deaths of patients receiving NHS treatment

It’s not as if this is a new issue;  we have highlighted previously both the disturbing  general statistics on people with  learning disability and their experiences of the NHS i.e with regard to morbidity and life-expectancy, and specific cases of  individuals entrusted to the care of medical professionals.

We therefore read with interest this article in the ‘i’  by Paul Gallagher on the deaths two patients with learning disabilities  Please take a look.

We note especially the failure of the two families involved to gain funding for legal representation at the coroners’ inquests.

Treat me well – Learning disability and hospital treatment

Having alerted you to the carersUk survey, and reviewing other recently received emails, I can also bring to your attention the release of  the second in a series of videos accompanying  Mencap’s ongoing ‘Treat Me Well’ campaign .

We are now at Episode 2 of Rachel’s story (Rachel is a young girl with learning disabilities, who has been admitted to hospital with stomach pains).  “The doctor gives Rachel two pieces of paper – one white, one green. But what should she do with them? Listen to the story to step into Rachel’s shoes.”  All materials (the video story, resources on learning disability and hospital visits, and details of how to contribute your personal  experiences of hospital) are available here

carersUK launches 2018 State of Caring survey

carersUK has just launched its  ‘State of Caring Survey 2018‘ and is asking carers to contribute.

An equivalent survey in 2017 was judged a success, on the basis that it had a significant number of contributors (over 7000) ; that it received a lot of attention in the media; and that its results were frequently cited by politicians and decision-makers.

 

As caresUK states in the email recently sent seeking contributors…

What you tell us makes a difference

Last year over 7000 carers shared their experiences with us. What they told us last year made the front pages of newspapers, was quoted over and over again by politicians and policy makers. This helped us bring the voice of carers and experience of carers into discussions on a whole range of issues from reform of NHS Continuing Care funding to how the Government can better support people to return to work after they are no longer caring, making changes where carers need them.”

Obviously, a similar or higher number of contributors to this year’s survey is carersUK’s target. If you are a carer, especially a carer for someone with a learning disability, why not take the opportunity to contribute views based on your own experiences via this survey  ?

NICE publishes guidelines on people with learning disabilities and challenging behaviour

On 28th March, NICE (National Institute for Health and Care Excellence) published new guidelines with the self-explanatory title “Learning disabilities and behaviour that challenges: service design and delivery

The accompanying press release read: “Care for people with learning disabilities should be close to home wherever possible… NICE is urging councils and health bodies to make sure that people with learning disabilities can access well-designed services and staff with the right skills so they do not need to move away for care or treatment.”

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Research suggests funding panels are used beyond their intended purpose

Our collective thanks are I think due to Rachel Carter and the investigative team at the magazine/website Community Care who have published a significant report under the headline “Social workers voice concerns over the influence of funding panels in adults’ services” 

The sub-header continues “Research by Community Care suggests funding panels are used beyond their intended purpose set out by Care Act statutory guidance, and in some areas to override social workers’ professional recommendations”.
Our thanks are also due to the 431 survey respondents  working within local authority social care and  finance departments.

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Change at Scope prompts angry assessment of prospects for social care in 2018

In Sept 2017, Rescare published the Autumn edition of Resnews, its quarterly newsletter (free to Rescare members!). Page 2 featured an article entitled ‘All Change at Scope’, highlighting Scope’s plans to sell all its residential homes and special schools and re-position itself as a ‘social change organisation’. Mark Atkinson, Scope’s CEO, has stated “We will move away from being a charity that does to one that one that facilitates”. Our article highlighted the criticism that Scope’s decision has prompted.

Charles Henley is a long-standing friend of Rescare, who several years ago, worried about trends in social care (based on his personal experience in the sector), decided to highlight the dangers of an over-reliance on the concept of  ‘care in the community, citing  specifically the consequent closure and dilution of services such as day-centres. Charles maintains a website ‘Learning Disabilities Problems‘, which he introduces as follows: ‘This site was originally set up to create awareness of the rapidly increasing decimation of Care in the Community and the need for unity of purpose whether carers required respite, residential or day care support.’ The site is well worth a visit.

In January 2018, Charles Henley prompted by the changes at Scope, wrote to the chair and other members of the All Party Parliamentary Group on Learning Disability His submission, analysing events in the recent past and considering future prospects, and suggesting a more active role for the APPGLD, was re-published on various social media outlets, and copied to Scope. We publish the text of in full below. Please now read on…


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RESCARE

The Society for Children and Adults
with Learning Disabilities and their Families

 

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