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  1. Simbindi

    England, Bristol: Using and understanding research evidence workshop

    Looks like they are also offering a workshop (March 28th) on 'Digital health and use of data': https://www.eventbrite.co.uk/e/an-introduction-to-digital-health-and-use-of-data-tickets-57778296440
  2. Simbindi

    England, Bristol: Using and understanding research evidence workshop

    This is an opportunity for members of the public to attend a free workshop: 'The workshop will give you an introduction to research and the tools and skills needed to find research evidence relating to health and assess its reliability.'...
  3. Simbindi

    UK: PIP appeals - advice, recommendations?

    Amber Rudd recently announced a proposal to combine the face to face assessments of PIP and ESA (or Universal Credit) into one: https://www.disabilitynewsservice.com/reaction-to-rudds-reforms-tinkering-crumbs-and-fears-of-a-trojan-horse-for-cuts/ However, I believe this 'cross-referencing' has...
  4. Simbindi

    United Kingdom - National Insitute for Health Research (NIHR) news

    I received an email today that the NIHR (England) is seeking new committee members. I haven't had a chance to read through the details so am unsure of who this may be relevant to, but more information can be found at the below links...
  5. Simbindi

    MUS services in UK and other MUS related issues

    See these links: https://www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/10/early-implementers-map.png https://www.england.nhs.uk/mental-health/adults/iapt/mus/sites/ https://www.england.nhs.uk/mental-health/adults/iapt/mus/wave-two-integrated-iapt-sites/
  6. Simbindi

    Obtaining Social Care in England for service users and carers: guidance and advice

    If you are eligible for social care, you should be actively involved in producing a personalised 'Care Plan' (again, you can draft this yourself initially, but it will need to be agreed with the social worker). I think I will start a new thread specifically for 'person centred' care planning...
  7. Simbindi

    Obtaining Social Care in England for service users and carers: guidance and advice

    There is currently no legal right to appeal the council's final decision, although you can make a complaint to the council and then the ombudsman if you believe they have made errors in the assessment and judging your support needs. This is why it is so important to ensure a comprehensive and...
  8. Simbindi

    Obtaining Social Care in England for service users and carers: guidance and advice

    Under the Care Act (2014) a person is entitled to carry out a 'Supported Self-Assessment'. This may be a much better option for ensuring your needs are accurately documented and evidenced. Many councils (including my own - Somerset County Council) will not inform you of your right to do this and...
  9. Simbindi

    Obtaining Social Care in England for service users and carers: guidance and advice

    Under the Care Act (2014) individuals with a defined 'substantial need' are entitled to have advocacy support for their assessment. Many people with moderate to severe ME would meet this threshold if they have significant cognitive and memory problems or difficulty...
  10. Simbindi

    Obtaining Social Care in England for service users and carers: guidance and advice

    The most useful site I have found is the professional site for social care education, SCIE. Here you can learn a lot of the stuff your council would prefer you not to know! You need to register with the site to download files, but they are free. The link to get started with is...
  11. Simbindi

    Obtaining Social Care in England for service users and carers: guidance and advice

    I have read various posts referring to the difficulties involved in obtaining appropriate social care but cannot see a specific thread for advice and links to the relevant legislation and appropriate guidance on this issue. The legal rights and thresholds to social care varies by location, so...
  12. Simbindi

    UK: PIP appeals - advice, recommendations?

    I do not know about South London, but some urban areas have 'Law Centres' - charities which will support benefit claimants at appeals. For example, Bristol has: https://www.ablc.org.uk/ It may be worth doing a search to see if you have something similar in your area.
  13. Simbindi

    UK: PIP appeals - advice, recommendations?

    If you haven't done so already if you sign up with the 'Benefits and Work website' as a member - they do have a forum with some very experienced moderators who may be able to answer your specific appeal process questions: https://www.benefitsandwork.co.uk/forum1 They will probably make...
  14. Simbindi

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    @Diane O'Leary Thank you for your continuing interest in advocating for people with ME. I have read your paper and have tried to make sense of the terminology you have used from the perspective of an NHS patient in England. I admit that it was a little confusing trying to 'translate' your...
  15. Simbindi

    Fiightback, an organisation "set up to support those accused of FII"

    Parents trying to get an autism diagnosis for their child are vulnerable to being accused of FII. Parents who have undiagnosed autism are even more at risk of being accused of this. Even mothers with a clinical diagnosis are at risk of being accused of 'encouraging autistic behaviour' in their...
  16. Simbindi

    ME/CFS disabled man's airport plight

    You would have to register with the Inland Revenue as an employer, be liable for employers' NI, be responsible for administering the PAYE, pay holiday and statutory sick pay, pension contributions plus any redundancy payment that might become due. If the carer was registered self-employed (you...
  17. Simbindi

    Trial By Error: And Another Prebuttal…

    I agree, but having international objectivity adds a lot of impact to the arguments being made. The MUS agenda seems to be prevalent and growing in at least a few other European countries. The UK NICE guidelines around CBT and GET have had a negative impact on ME sufferers across the globe, so...
  18. Simbindi

    Trial By Error: And Another Prebuttal…

    A file was uploaded by mistake. I deleted it.
  19. Simbindi

    Trial By Error: And Another Prebuttal…

    I wonder how much of this 'investigative journalism' has been stirred up to try and distract @dave30th from the work he wanted to do around IAPT and MUS? How much of his valuable time has been lost to addressing all this cr*p? As you can see from the below link, MUS are now being firmly...
  20. Simbindi

    Trial By Error: Some Thoughts About an Upcoming Article

    I agree absolutely. These are highly paid, experienced medical healthcare professionals. I personally know many people who are working in low paid care worker roles (in mental health support) who receive face to face death threats from their 'clients' on a regular basis. These workers are not...
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