petition.parliament.uk/.../221033
The link to this petition was originally shared by NAS37934 (and corrected by Cassandro) in the ‘Blogging with autism’ thread, but it’s not very visible there so I thought I would put it in a new thread in the hope that more people would see it.
The debate can be watched at this link, starting at 4.30pm today:
https://parliamentlive.tv/Event/Index/b10b5496-54a6-4262-bb54-5c74ec58eedf
Just an update to let those interested know that this petition is going to be debated by Parliament on 22 October 2018. You can find the link to watch and see the current number of signatures here:
I just wanted to update this thread to make people aware that the Government responded to the petition on 25 July 2018 with:
‘Our deepest sympathies are with Oliver’s family for their loss.
Everyone has the right to high quality, safe health care so it is crucial that all health workers are given the skills and education to confidently deliver care that meets the needs of all their patients. This is a priority for the Government.
All employers have a clear legal responsibility to make sure that staff are competent to perform their role as set out in the Health and Social Care Act 2008 (Regulated Activities) Regulation 2014; regulation 18.
To support a consistent approach to learning disability education and training, the Department for Health and Social Care commissioned Skills for Health and Health Education England to develop a Core Skills Education and Training Framework. Published in July 2016, the Framework, which sets out the essential skills and knowledge needed for all staff working with people with a learning disability in health and social care settings, is structured in three tiers, or levels of training, to reflect the different levels of knowledge specific roles would require.
Tier one, which is relevant to the entire health and care workforce including ancillary staff, concerns general awareness skills and attitudes.
Tier two is aimed at developing the knowledge and skills of staff that are likely to have regular contact with people with a learning disability.
Tier three is aimed at enhancing the knowledge, skills and attitudes of key staff and is relevant to those who are managing care and support services for people with a learning disability.
Employers and/or commissioners of education should use the Framework as guidance for the development and delivery of appropriate and consistent education and training, as well as for identifying the skills needed for particular roles in line with their legal responsibilities. By doing so, this will result in safer and more effective practice.
To ensure that health and care staff also have appropriate knowledge and awareness of autism, the Department of Health and Social Care has commissioned the development of a Core Skills and Competency Framework for Autism, which will be in line with the tiered approach adopted by other core skills frameworks. The development of this framework is expected to improve the availability of general awareness training to all staff across the health and care system and wider public services to equip them to offer appropriate support to autistic people (Tier 1), as well as developing and enhancing the knowledge, skills and attitudes for roles that have regular contact with autistic people (Tiers 2 and 3).
The recent annual report of the Learning Disability Mortality Review (LeDeR) Programme highlighted that people with a learning disability are still dying prematurely due to avoidable factors. We recognise that more is needed to address this profound inequality.
As outlined by Caroline Dinenage, the Minister of State for Care, on 23 July, the Department is working with NHS England and other system partners to agree actions for each of the nine recommendations; the Government’s response will be published after summer recess (House of Commons Written Statement 906, https://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Commons/2018-07-23/HCWS906/).’
It appears that there isn’t even a framework in place yet for ‘general awareness training’ for staff in relation to autism. That certainly explains some of the difficulties expressed by individuals with ASD with regards to healthcare...
Just to mention that it was brought up yesterday at the All-Party Parliamentary Group for autism (NAS-sponsored), by the 'minister for care', Caroline Dinenage. So at least her aides were aware it had 25,000 signatories. Hope we can push it further.
There was discussion of training GPs (through the Royal College), and some people brought up lack of post-diagnostic support for adults, but there wasn't a chance to discuss training of psychiatrists, who I think may be the biggest cause of iatrogenic harm to autistic people.
That it requires a petition in order for people like us to be provided with basic service freely given to everyone else is a tragedy
I agree wholeheartedly. I will go and have a look at your link.
Is it also being supported by NAS?
Sadly, I doubt it. When I once asked about a similar petition (about training for mental health professionals), they said they don’t support petitions as they get so many request to do so. I then asked them what they were doing about the problem themselves then, as mental health problems affect many individuals with autism and we need proper help for them, but I got a response basically saying they had campaigned for GPs to have more awareness of autism. What that had to do with mental health professionals I have no idea! I asked again specifically about mental health problems and linked studies and personal anecdotes, but I never got a response from the NAS despite repeated chasing. I then gave up as it was clear they didn’t care.
The above is a great petition though, and I hope it gets the 100,000 signatures (it’s doing well so far). It’s just so sad that the family have had to suffer such a loss for this issue to be highlighted to people.
That it requires a petition in order for people like us to be provided with basic service freely given to everyone else is a tragedy, and is the reason for my considering starting another petition on the same site to make neurodiversity a separate protected characteristic. I'm not trying to hijack this thread, and of course I signed this petition and enthusiastically encourage everyone else to do so as well, but please also see the thread I just started regarding the other petition (Petition to make neurodiversity a separate protected characteristic in the UK - National Autistic Society - our Community).
Good to see it's got to over 27,000 signatures. If it can get to 100,000 I think it stands a good chance of being taken up by MPs. Is it also being supported by NAS? The way it's worded, this would benefit most of us one way or another, not just in dealing with crises and tragedies, but having our concerns understood, Hey, imagine, you might even have psychiatrists understanding neurodiversity instead of prescribing inappropriate treatments.
The petition reads:
Prevent avoidable deaths by making autism/learning disability training mandatory
My son Oliver was only 18 when he died in hospital on 11 Nov 2016. I believe his death could have been prevented if his doctors and nurses had received mandatory training. He had autism and a mild learning disability, and they weren't trained to understand how to make reasonable adjustments for him.
1 in 4 healthcare professionals has never had training on learning disability or autism. This is unacceptable. Two thirds want more training, and 1 in 3 think a lack of government leadership is contributing to the problem of avoidable deaths. The Government must ensure all healthcare professionals get mandatory training to address the huge health inequalities facing people with autism and a learning disability. For more information search for: LeDeR report 2018; CIPOLD 2013; Treat me well 2018.
Maybe we can promote this, and highlight what happened to Oliver, through sympathetic friends and local organisations.
