PPlog

I thought it useful to copy this here in full: Patient & Public Involvement Forums National Association of Patients Forums Steering Group Malcolm Alexander Chair, National Association of Patients’ Forum C/o CPPIH, South East Regional Office 3000 Cathedral Hill Guildford, GU2 7YB. DRAFT THREE Have Your Say. Consultation on the Regulations for LINks Draft Local Involvement Networks Regulations 2008 General 1. The consultation document illustrates the central problems arising from the way LINks is framed in the legislation; that LINks will be expected to carry out a wide range of functions without providing them with the powers and structures to deliver functions effectively. A simple example: LINks are required "to make reports and recommendations", but it will be extremely difficult for this activity to be carried out effectively by the loose networks which the legislation is intended to create. Such activity is predicated on a strong and committed membership group, compet...

My absence here of late is because I've been swallowing a lot of water and nearly drowning in my mate Mandy's Lifeboats blog (link above in PPlog PPurpose). It's all about the Mental Health National Service User Network (NSUN) who have got their basic website off the ground and have taken a right hammering (very unfair and OTT in my eyes) by some service user friends. My own take on NSUN, having been there from the outset, is that it is a very worthwhile effort by some very good people who certainly don't deserve to be pilloried in this way. Anyway I'm not going to repeat it all here but have a look at it in detail on Mandy's site and let me know what you think.

I’ve just sent off my latest PCX (http://www.pcx.nhs.uk/) blog in which I quote Des Curley’s desperate letter to the Lewisham PCT. His letter is an example of just what the NHS is doing to some of the disabled people in the UK and I think its worth posting in full here. On PCX I say, in my opinion this trust should be prosecuted and call for a National Disability Action Group with the resources to carry out such an action. Here’s Des’ letter (with his permission): “Dear Gill, No,  I have not  received the  response into the investigation of the gym issue  from the Trust or PCT which  I was informed by Stuart Bell had been sent to me in October 2007. You and Mr Bell were aware that I had made a formal complaint but  ignored this once the circumstances and complication of the disciplinary against the Ladywell gym instructor arose and derailed  local resolution in August late 2007. Not many people are going to stay within a local resolution process that results in  a Trust staff member...

This is beautiful pure white snow on Ruth’s part but will it be turned into slush by Mr Johnson? Whatever, Tumultuous applause for the endless work Ruth is doing. Patient & Public Involvement Forums National Association of Patients Forums Steering Group Ruth Marsden Vice Chair, National Association of Patients’ Forum C/o CPPIH, Ground Floor, Victoria House, London Square, Guildford, GU1 1UJ. Alan Johnson MP Secretary of State for Health Richmond House Whitehall SW1A 2NS 26.11.07 Dear Alan, My abiding thanks for the speedy reply to my letter of 26 th October 2007. I must, however, press you further as there are still unresolved pivotal concerns on the matter of access by LINks’ members to NHS care delivered by private providers. The existing Directions to which you refer specify that contracts with private providers must include provisions requiring private providers to allow entry to Patients Forums and that these contracts must also re...

I’ve just sent this mail which is self explanatory. The reply should be interesting. “Hello Mr Lambert. On 19th September I received this response to my FoI request. Hence this mail to you. 1) The Norfolk County Council named contact for LINks is Ian Lambert, Head of Democratic Services, telephone 01603 222620, email ian.lambert@norfolk.gov.uk The DoH have been notified of this information. In Norfolk we wanted to wait to receive the draft specification before we started to develop LINks. Work is now underway to appoint a project officer and organise a reference group of key stakeholders to determine what we need to procure, and how to arrange things so that there is no disruption to patient representation. We will be inviting PPI Forum Chairs to be part of the group and plan to organise a conference in the early Autumn with partners and stakeholders  to map current activities and take an initial look at how LINks could work in Norfolk. Can you please tell me: 1. Now the specificati...

I contacted CEHR again today to say. “On 11.11.07. I sent you the following enquiry: 1. The Norfolk and Waveney Mental Heath NHS Trust has a practice which excludes service users not in receipt of secondary mental health services from membership of its Service User Council and from the Service User Section of its prospective foundation trust membership. I think this is discriminatory and a breach of the Disability Equality Duty. Can you please advise. 2. Similarly, I am of the opinion that the use of eligibility criteria for the provision of services may also be a breach of the Disability Equality Duty. Can you also please advise on this.” A few weeks before that I enquired if the new Commission will pursue prosecution of public bodies in breach of the DED as the DRC did. I have heard nothing from you. Please treat these inquiries now as Freedom of Information Act requests.“ On the face of it, it looks like the government may have, by concentrating its quangos, succeeded in diluting th...

The Jonathan Naess mental health article in last Wednesday’s Guardian Society stirred up a flurry of responses on the associated Guardian blog that I thought it worth copying my entries here. Go to the relevant blog My mate Mandy Lawrence who lives on Dunstable Beach - see our associated blog Mandy Lifeboats Ahoy (http://mandylifeboatsahoy1.blogspot.com)! - wrote in to the Mental Magazine forum ( mentalmagazine@ yahoogroups.com ) angry that the article was about a high flyer with mental health problems who easily got media coverage because he is a high flyer while ordinary users are disregarded. I said on the blog: “I subcribe to a mental health on line discussion forum called Mental Magazine. One of our regulars posted the following on the forum today: "I can't believe that the Guardian would give this word space. I wonder if there will be a section where nare do well nutters get a chance to have their say. Cos I think it is a disgraceful deception of the public and once...