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The Westminster Commission on Autism is running a survey, please all complete and share widely
  • PDA_ASD_Parent
    Posts: 4,188
    "We want to hear your stories, experiences and ideas!

    The Westminster Commission on Autism is conducting an inquiry into access to quality healthcare for people on the autism spectrum and we need your input. This report will make recommendations to the Government to improve healthcare for people on the autistic spectrum (including Asperger's).

    Please tell us what would help you and your family!

    Are you on the autism spectrum?
    Are you a health professional?
    Are you a parent/carer for someone on the autism spectrum?
    Do you represent a charity or third sector organisation who work with people on the autism spectrum?
    Are you a professional in the field of autism?
    Are you an academic in the field of autism?

    If so, PLEASE could we ask you to help fill in this survey to the Westminster Commission on Autism. We need to hear from those who have stories, opinions, suggestions and ideas to help improve access to healthcare for people on the autism spectrum. If you are a parent/carer for someone who would be unable to contribute , please advocate appropriately for them in your submission."

    https://www.surveymonkey.com/r/WestminsterAutismCommmission
  • PDA_ASD_Parent
    Posts: 4,188
    I like your poetry! ;)
  • webbwebb
    Posts: 2,542
    I've completed it too.
    My son has lots of medical problems(heart problem) and health care has been a real difficult area.
    I had to ask the Paediatrician to write to our GP and ask him to see our son as the GP had refused to she our son in the surgery or at home!!!
  • PDA_ASD_Parent
    Posts: 4,188
    webb that is illegal, according to equality law (Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents and Disability Discrimination Act 2005 http://www.legislation.gov.uk/ukpga/2005/13/contents) and the Health and Social Care Act 2008 (http://www.legislation.gov.uk/ukpga/2008/14/contents) your son is entitled to reasonable adjustments to allow him to access healthcare and your GP has been entirely negligent. I have insisted on a home visit from our GP (who was very reluctant) before because my youngest had a virus and was very unwell, I couldn't physically carry her at the age of 10 as she was at the time and I have Ehlers Danlos syndrome, lingering vertigo and unexplained faintness episodes (I suspect I also have chronic fatigue syndrome) and couldn't physically do it. She really didn't want to come but I said I had no other choice as my daughter couldn't walk! I don't know what these GPs are playing at, it's a joke. They cannot reserve home visits for the very elderly and terminally ill only, there are times others need them too. It is even, I read somewhere, at times necessary for autistics and should not be refused.

    Here's a copy and paste of stuff I have quoted elsewhere:

    Know your rights as an autistic person:

    http://www.nhsconfed.org/Publications/Documents/mhn-briefing-255.pdf

    “It is a statutory requirement under the Equality Act 20101 and the Health and Social Care Act 20082 that public sector agencies make ‘reasonable adjustments’ to their practice to make them accessible and effective for all, including people with autism, learning disabilities, mental health issues, or a combination of these. This means changing services so that they are easier to use.”

    “Adjustments should be made to appointment times, duration and interventions with the doctor. Recording systems in GP practices should identify people with autism, learning disabilities, mental health issues, or a combination of these, and show any reasonable adjustments they require, such as easy-read appointment letters and reminder phone calls or texts. There should also be more frequent contact in the time spent waiting for an appointment, so people know they are not forgotten.”

    What are reasonable adjustments?

    ‘Reasonable adjustments’ are changes to services to make them easier to use and access. This includes:

    • removing physical barriers

    • having clear signs in buildings, giving directions

    • using pictures and large print on appointment letters

    • making alterations to policies and procedures

    • change staff training and service delivery to ensure they work equally well for people with learning disabilities or autism.

    Environment and workforce

    • offering a home visit

    References

    1. The Equality Act 2010. www.legislation.gov.uk/ukpga/2010/15/contents

    2. The Health and Social Care Act 2008. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_110288

    3. HM Government (2011), No health without mental health.

    4. Department of Health (2010), Fulfilling and rewarding lives: the strategy for adults with autism in England.

    5. Department of Health (2009), Valuing people now: a new three-year strategy for people with learning disabilities.

    6. Skills for Care and Skills for Health (2011), Getting it right for people with autism.

    7. Mencap, Getting it right charter. www.mencap.org.uk

    http://www.nhsconfed.org/Publications/Documents/Briefing_202_MHN_autism.pdf

    “Statutory guidance is due in December 2010 placing legal duties on local authorities, NHS bodies and foundation trusts.”

    http://www.nhsconfed.org/Publications/Documents/Briefing_202_MHN_autism.pdf

    “Statutory guidance is due in December 2010 placing legal duties on local authorities, NHS bodies and foundation trusts.”

    http://www.nhsconfed.org/Publications/briefings/Pages/mh-services-equally-accessible.aspx

    “People with learning disabilities or autism deserve equal access to mental health services and good treatment, but they currently receive variable treatment across England.”

    For me, one reasonable adjustment is using email and/or fax to correspond with the GP practice. All Doctors have NHS email addresses, and surgeries will have a general practice email address. Practice email addresses should end in "@nhs.net", mine does. So the format would be e.g. Dr.[insert first name].[insert surname]@nhs.net for instance. The general surgery one, which you would have to check with your individual surgery, could be e.g. [surgery name]@nhs.net, or it could be [reception/info/enquiries].[surgery name]@nhs.net. One way to find out is to send a test email and see if it bounces back, if they are resistant to giving it out when you ask. This should not be abused! This is something that anyone could work out, it's not confidential information.

    I checked with NHS PALS and they do not have a policy on use of email by GPs and they told me that I was entitled to send information to the GP using their @nhs.net email address (even without knowing of my disability status). Despite this, anyone with a disability in law is entitled to this as a reasonable adjustment, so if your practice tries to hide it, don't forget most NHS departments are clueless about the law regarding disabilities and they may need instructing!

    Only if you (or your child has a disability in law or a mental health issue or another health issue that the law covers, do you have a right to request reasonable adjustments for yourself/your child, although as PALS informed me patients can send information via their GP's email address anyway, but it might be only applicable to those with disability status to expect response by email I'm not sure.

    If your GP tries to quote confidentiality and email security, PALS have informed me that the NHS use a secure email system. So unless the recipient (patient's) email address is not secure there should not be a problem. Also, by you using email to communicate with them, this does not mean they need to respond by email. they can respond by phone, letter or fax as they feel appropriate.
    - See more at: https://www.ambitiousaboutautism.org.uk/talk-to-others/2015-04-09/reasonable-adjustments-autistic-people-are-entitled-to-by-law-from#sthash.TeQhLm7y.dpuf
  • webbwebb
    Posts: 2,542
    Hi everyone, I knew that the GP was trying to make us leave the practice (my son was a difficult case he didn't want to spend extra time and money on!) but I didn't feel we should have too move, so that's why I got the Paediatrician to write to the GP to make the GP see us regularly at the surgery!!!
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    "We want to hear your stories, experiences and ideas!

    The Westminster Commission on Autism is conducting an inquiry into access to quality healthcare for people on the autism spectrum and we need your input. This report will make recommendations to the Government to improve healthcare for people on the autistic spectrum (including Asperger's).

    Please tell us what would help you and your family!

    Are you on the autism spectrum?
    Are you a health professional?
    Are you a parent/carer for someone on the autism spectrum?
    Do you represent a charity or third sector organisation who work with people on the autism spectrum?
    Are you a professional in the field of autism?
    Are you an academic in the field of autism?

    If so, PLEASE could we ask you to help fill in this survey to the Westminster Commission on Autism. We need to hear from those who have stories, opinions, suggestions and ideas to help improve access to healthcare for people on the autism spectrum. If you are a parent/carer for someone who would be unable to contribute , please advocate appropriately for them in your submission."

    https://www.surveymonkey.com/r/WestminsterAutismCommmission



    http://www.autism.org.uk/get-involved/media-centre/news/2016-07-04-nhs

    Have you read the report?

    Will it make any difference?
  • PDA_ASD_Parent
    Posts: 4,188
    I don't think anything will make any difference until it's made mandatory. Otherwise nobody bothers.
  • Holly59
    Posts: 2,586
    http://www.pdasociety.org.uk/forum#/discussion/987/new-pda-variant-described

    Sadly I agree. Very true explanation of events, We have this Policy, Strategy to hide behnind. As long as they pretend they are doing something.
  • Holly59
    Posts: 2,586
    http://www.autismac.com/services/clinical/

    You can look on their FB page at the responses for the Autism Strategy in Scotland .

    No one e realy listens do they .We have all these Commissions, Stratagies , but it's only going to get worse as more on the Spectrum are recognised and budgets are being slashed . It's the likes of training and Adfitional Needs Asdistants which are at the forefront of these cuts . We need more specialist ASD-PDA schools for starters . So many cases for do few places .

    Pat xx



  • Holly59
    Posts: 2,586
    https://en.m.wikipedia.org/wiki/List_of_MPs_for_constituencies_in_Scotland_2017–present
    Not sure which of this motley lot is your MP but it might be worth getting someone on board to support you .

    There are NHS who will recognise and diagnose in Glasgow . Children’s Hospital at Yorkhill .
  • Holly59
    Posts: 2,586
    Sorry I have to go now but keep in touch . X

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