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Well, they definitely would have benefited from the workshop I attended at Exeter! As would the PACE authors...

I don't think the people who run PHWE have any influence on the research being done by University of Bristol. It really wouldn't be appropriate to use the workshop for this purpose as it is designed as a learning opportunity for members of the public. It may be appropriate to use SMILE, FINE...

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

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.'...

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...

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...

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/

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...

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...

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...

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...

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...

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...

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.

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...

@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...

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...

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...

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...

A file was uploaded by mistake. I deleted it.