Guide for frontline NHS staff re support of LD and autistic patients in hospital with coronavirus

Sue Kirkman has kindly sent us the following link which, although this is for NHS staff primarily, it may be useful if any of our relatives need to go into hospital:

Following NHS producing a clinical guide for frontline staff to support the management of patients with a learning disability and autism during the corona virus epidemic  they have now produced an easy read version https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/04/clinical-guide-for-staff-supporting-patients-with-a-learning-disability-autism-or-both-easy-read.pdf

Invitation to the Launch of the South Yorkshire Autism Alert Card, on Monday 2nd March

Forwarded to Sheffield Autistic Society from South Yorkshire Police:

You are cordially invited to the launch of the South Yorkshire Autism Alert Card (LD card being developed) at the Doncaster School For The Deaf, Leger Way, Doncaster DN2 6AY on Monday the 2nd of March 2020. Starting at 1.30pm for refreshments etc., with the launch at 2pm and to be closed by South Yorkshire Police Crime Commissioner at 3pm. Professionals and service users all welcome, please use the email address below to RSVP.

Please RSVP to – lifewise.booking@southyorks.pnn.police.uk

 

Ambitious About Autism’s new tool kit for parents of autistic pre-school children

The children and young people’s charity Ambitious About Autism have published a Right from the Start Toolkit   ‘A Guide to Autism in the Early Years’.

The charity says, “This practical toolkit contains a wealth of straightforward information in one place to guide parents and carers through their child’s journey in the early years.

From the autism assessment process to the first day of school, this toolkit is packed with practical tips and checklists to support parents during the earliest years of their child’s life. It also provides signposts to sources of support or additional information.”

For more information and how to download the toolkit see: Right from the start toolkit.

For the charity’s advice on getting a diagnosis see this page from their website.

Carers Outreach Project (COPe) Groups and Workshops

Please see the flyers (links are below) for details about COPe. COPe works with family carers who care for someone with a Learning Disability and/or autism.

Carers Outreach Sessions
The Carers Outreach Sessions support unpaid carers and the adult they care for with a mild-moderate learning disability and/or autism.
There are now sessions up and running in various parts of Sheffield.

Sharing Caring Project Workshops
Keep in Touch and Carers Outreach Project are running a number of workshops across Sheffield for carers of adults with learning disabilities and/ or autism.

For more information, or if you are interested in attending any of the groups or workshops, please contact the team at Mencap. (For details see the flyers below).

COPe Groups

SCP Workshops

 

Research into autism and loneliness – participants needed

Sheffield Autistic Society has received the following request for people to take part in research into loneliness in autistic adults:

My name is Kana Umagami, a PhD student at the Centre for Research in Autism and Education (CRAE) at UCL Institute of Education. I am autistic myself, and my research is investigating loneliness in autistic adults. Currently, I am recruiting participants to take part in an online survey on this topic.

Full details about the survey (which takes approximately 20 minutes to complete) are available here.

I am wondering if you could forward this email (or circulate information about my research) to autistic adults in your network so that they can take part in my research?

Who is eligible for this research?

  • Aged over 18 (with no upper age limitation)
  • Living in the UK
  • Able to express their own thoughts (regardless of the ways they communicate)
  • Diagnosed or self-identified as autistic

I hope my research will provide a better understanding of loneliness in autistic adults and look forward to your network’s participation in my study!

South Yorkshire and Bassetlaw Integrated Care System – Questionnaire

The Integrated Care System (ICS), which is a group of NHS organisations that covers Doncaster, Rotherham, Barnsley, Bassetlaw & Sheffield, are looking to engage with people with lived experience of Autism, either personally or through family/carers.

We have been asked by Emma Ross, Communications and Engagement Officer for Autism, South Yorkshire and Bassetlaw Integrated Care System, to bring our readers’ attention to a questionnaire which they would like as many people to complete as possible, though of course not everyone will want to complete the survey.

The survey is to help the organisation find out about the experience people with autism have with care services.

You can download the questionnaire here: Autism Survey SY ICS
If you wish to take part, please complete and return to Emma at the email address below:

Email: emma.ross@nhs.net
Tel: 0114 305 1713

My GP And Me: Building Better Together Survey

Dimensions have produced a survey on My GP and Me.

This survey is for people who access primary healthcare in the United Kingdom.

You are also welcome to complete the survey on behalf of someone who has a learning disability and/or autism, if you know them well and they trust you. If you are a carer or support worker, please also consider completing the survey for those who support someone to go to the doctor.

The deadline for taking part in the survey is 13th December 2019 at 17:00pm.

Click here to access the survey

There is also a downloadable easy read PDF that can be completed by hand and scanned or completed on the computer and saved.

Click here to access it

Any PDF versions should be emailed back here

Report on the detention of young people with learning disabilities and/or autism

On 1st November 2019, the Parliamentary Joint Committee on Human Rights (JCHR) published a report on the detention of young people with learning disabilities and/or autism. The report condemns the “horrific reality” of conditions and treatment under which many young people with learning disabilities and autism are detained in mental health hospitals, “inflicting terrible suffering on those detained and causing anguish to their distraught families”. The full report can be downloaded here: https://publications.parliament.uk/pa/jt201920/jtselect/jtrights/121/121.pdf

The British Institute of Human Rights have published an ‘explainer’ of the report which is available here: https://www.bihr.org.uk/explainer-jhrc-report 

We are grateful to Sheffield Citizens Advice for forwarding this information to the Sheffield Autistic Society. We feel this is so important that we are reprinting the official summary of the report below:

Summary
“We regard ourselves as a civilised society with a respect for human rights. Most people would say we should take extra care to support young people and those who are disabled. But the brutal truth is that we are failing to protect some of the most vulnerable young people – those with learning disabilities and/or autism. And indeed, we are inflicting terrible suffering on those detained in mental health hospitals and causing anguish to their distraught families. The recent BBC Panorama programme showing taunting and abuse of patients at Whorlton Hall exposed the horrific reality for some.

Too often the pathway to detention is predictable. It begins from before diagnosis. A family grows worried about their child. They raise concerns with the GP, and with the nursery or school. It takes ages before they get an assessment and yet more time passes before they get a diagnosis of autism. All that time they struggle on their own with their worries and without help for their child. This pattern continues throughout childhood as families are under-supported and what little help they have falls away when the child reaches the age of 18.

Then something happens, perhaps something relatively minor such as a house move or a parent falls temporarily ill. This unsettles the young person and the family struggles to cope. Professionals meet to discuss what should happen, but parents are not asked for their views. Then the child is taken away from their home and the familiarity and routine which is so essential to them. They’re taken miles away and placed with strangers. The parents are desperately concerned. Their concerns are treated as hostile and they are treated as a problem. The young person gets worse and endures physical restraint and solitary confinement – which the institution calls “seclusion”.

And the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years.
This is such a grim picture, yet it has been stark in evidence to our inquiry into the detention of young people with learning disabilities and/or autism. We have lost confidence that the system is doing what it says it is doing and the regulator’s method of checking is not working. It has been left to the media, notably the BBC, Sky News and Ian Birrell in the Mail on Sunday, to expose abuse. No-one thinks this is acceptable.
There has been a succession of compelling reports including that from the Children’s Commissioner for England, Anne Longfield OBE.

Our proposals for change are urgent and they are not complicated. They include:
• The establishment of a Number 10 unit, with cabinet level leadership, to urgently drive forward reform to minimise the number of those with learning disabilities and/or autism who are detained and to safeguard their human rights.
• A review to be carried out by the Number 10 unit of the framework for provision of services for those with learning disabilities and/or autism. At a minimum Government should introduce:
– a legal duty on Local Authorities and Clinical Commissioning Groups to ensure the availability of sufficient community-based services.
– a legal duty on Local Authorities and Clinical Commissioning Groups to pool budgets for care services for people with learning disabilities and/or autism.
• Stronger legal entitlements to support for individuals. The Government must act on legislative proposals put forward by the Equality and Human Rights Commission, as well as those made by the Independent Review of the Mental Health Act 1983 and campaign groups.
• Care and Treatment Reviews and Care, Education and Treatment Reviews to be put on a statutory footing.
• The criteria for detention under the Mental Health Act must be narrowed to avoid inappropriate detention. Those with learning disabilities and/or autism must only be detained in situations where:
– treatment is necessary;
– treatment is not available in the community and only available in detention (i.e. the last and only resort);
– treatment is of benefit to the individual and does not worsen their condition; and
– without the treatment, there is a significant risk of harm to the individual or others.
• Families of those with learning disabilities and/or autism must be recognised as human rights defenders, and other than in exceptional circumstances, be fully involved in all relevant discussions and decisions. This should include:
– On every occasion that anyone is restrained or kept in conditions amounting to solitary confinement their families must be automatically
informed.
– Young people must not be placed long distances from home as it undermines their right to family life under Article 8 ECHR. Financial
support must be made available to ensure that families are able to visit their loved ones.
• Substantive reform of the Care Quality Commission’s approach and processes is essential. This should include unannounced inspections taking place at weekends and in the late evening, and the use, where appropriate, of covert surveillance methods to better inform inspection judgements.

Our country is prosperous and values human rights. We cannot turn away from the reality of the lives of these young people and their families. It’s time to act.”

 

ACCT Tots

Sheffield based organisation ACCT (Asperger’s Children and Carers Together) have sent us the following announcement:

ACCT Tots!
We are excited to have received some new funding for a pre-school group suitable for little ones up to 5 years old. The first session of ACCT Tots is taking place on Monday 7th October 10-12 noon in the Pavilion Room at St Mary’s and will running be every week at the same time. There will be lots of toys, activities and fun in a supportive and welcoming environment. New and familiar faces very welcome. Please pass this on to any families you know who might be interested.

For further details see this page.