PPlog

Au Revoir to good friends. Most people I know will be aware I have had to step down from being a NSUN trustee because a fluctuating and worsening physical condition prevents me from guaranteeing travelling ability. I am quietly coming to the boil about organisations (and I don't specifically mean NSUN) locating themselves in London and excluding disabled people who are unable to travel from participation. The simple answer these days is the development of on line video conferencing. However, I have a feeling that charity commission and companies house rules don't allow this. I'm going to do some near future research about it. Anyway, here's the response to my stepping down letter from Tina: Friday, 16 July 2010 Dear Mike, Thank you for your letter of 7th July 2010 resigning your place on the board of NSUN. I am sorry that you find the journey very difficult to Vauxhall as your health condition has worsened. I don’t think people realise how much travelling by pu...

Starting to lay NSUN Myths This posting is for those interested in NSUN's activities and status on the Survivor History Discussion Forum. One of NSUN's values is complete transparency. In a management committee meeting soon after I joined in November 2009, discussion about the proposed new website included decisions that we would publish everything, including financial accounts on the new website, the crap website we have now (and no, I don't know its origins) doesn't satisfactorily allow this. The company building the new website has dragged its feet scandalously and expensively (£12,000) and they still haven't delivered (I voted against this company and the steep expenditure but was outvoted). So I think the best thing to do to start with is to post Sarah's (Yiannoullou - our one and only manager) report to funders here. REPORT TO FUNDERS – COMIC RELIEF AND TUDOR TRUST – March 2010 The work of NSUN has continued to expand since October 2009. There has bee...

In-House Discrimination??? My recent experiences around people with mental health problems being excluded from the nationally lauded Norfolk Joint Strategy for disabled service users (from the Norfolk Coalition of Disabled People, NCODP) engaged to monitor the development of the personalisation programme in Norfolk, have left a furrowed brow and a nasty aftertaste. In the last stage of my local campaign against this breach of the 'People First' agenda and the United Nations Convention on the Rights of Disabled People, I'd had a positive statement from Norfolk County Council's Adult Social Care representative. However, when it came to the crunch and I tried to present the letter from Norfolk Adult Social Care at the last meeting of the monitoring group, most members of the group themselves were firmly against including people with mental health problems. In addition, two of the group - remember this group comprises physically disabled service users - directly stated th...

For some reason the link at the bottom of my last entry doesn’t work but this one does. Although you get a site in Dutch it has an English button on the top right corner. Have a look - it’s very interesting.

Found this interesting piece in my archives: A National Federation of Service Users and Carers. In the run up to the legislation that set up PPI the Government commissioned a scoping report from a consortium of service user and carer organisations under the aegis of the Patients’ Forum. That scoping report (which the Government subsequently studiously ignored) recommended the formation of a National Federation of Service Users based on the Netherlands model. The Scoping Report said: “Netherlands In 1981 the Dutch Government published a policy document on patients’ rights. It concluded that patients’ rights as such without a social context did not mean very much. They needed to be linked to patient education and to the participation and involvement of citizens in the health care system.[ii] A national federation of patient and consumer organisations (NP/CF) was set up as a coalition of consumer organisations, patients’ organisations and organisations of...

    NSUN Survey: Annual Evaluation – Prize Draw   This is NSUN’s second annual evaluation. We are keen to hear about your views of NSUN and your expectations for the future of the network. The questionnaire should only take 10 minutes. We really do appreciate the time you are giving up to complete the questions and would like to thank you in advance. We are entering every questionnaire completed and returned into a prize draw for a £20 voucher. To access the survey please follow the link NSUN Annual Evaluation 2010 Please complete by 31 st July 2010       Information: Joe Kelly’s blog   http://www.disabilityartsonline.org/Joe_kellys_blog       Information: SideFX Concert     Hello Friend or Colleague. A line to say that Dean Thorpe of Activ8 has done a magnificent job of videoing our concert at Parkhurst Hall on 16 th June. The main drawback is the sound quality.  ...

The other day I was browsing through some older files looking for a particular report when I came across some old saved e mails from 2005 and 2006. These mails are from PPI forum members in different parts of England: at least three forums in London; forums in the south west; eastern england; Manchester; and the east midlands. I can mention four names I know will not object to their inclusion here: Dr Janet Albu, who I think we should present a tribute to on the next anniversary of her death and our irreplaceable loss; Ruth Marsden; Martin Rathfelder; and, of course, Malcolm Alexander. The mails were about supporting each other over forum members’ difficulties with their Forum Support Organisations and the now defunct Commission (CPPIH). Later, our communications were around the structure(s) and powers of the proposed LINks. One quote from these is: “In my view if we want to get bodies that achieve the best results for patients we have to first ask how we can be most power...