I’ve been quiet for a while - weary of the vacuous and sometimes downright deceitful words of government and their QUANGOS and angry at public body tokenism which cynically exploits the good will of volunteers and service user involvement.
The catalyst to this state of mind was finding out that the Norfolk Police Disability Forum of which I was Chair and which had carried so much optimism about public body intentions for me has been either disregarding the Forum altogether or using it as a token reason for them doing the minimum to comply with Disability Discrimination legislation: - they had to engage with disabled people by law so they have done this by setting up their Disability Forum and then (again under the cover of fine, empty words) have just left it to ‘talk amongst itself’ whilst functions it was set up to perform just bypass it and nil resources are allocated to it.
I resigned.
And there are many indications that some local authorities, PCTs and hospital trusts are also doing the absolute minimum to comply the Disability Discrimination Act 2005. Having published their Disability Equality Schemes they are conveniently forgetting they exist or burying them in amongst generic policies under the name of “diversity.”
All this really makes mugs of those people who in good faith give their time, skill and knowledge in a voluntary capacity. I’ve taken several steps back to have a proper think.
However, I have written my April blog for PCX and here it is:
LINks Developments in Norfolk
Throughout the summer of 2007 I was in touch with the Department of Health for notification of the appointment of the Norfolk County Council Lead Person for LINks. Eventually, via a Freedom of Information request to Norfolk CC, I found out. On 21.09.07. I contacted that person to ask: “Can I please ask you to include me in any meetings you organise and to include meeting venues accessible to people who live in this area. I live in an area of Norfolk generally socially excluded from most community development activities and too many of those activities turn out to be Norwich-centric - not easily accessible for those hard to reach people with disabilities. My address is: xxxxxxx”
Between then and the end of March this year I was in regular touch with that lead person expressing a keen interest. On 24.03.08. I mailed him saying: “As the 31st and the demise of PPI Forums approaches, you must by now have the interim body in place to continue necessary work... can you please let me have details of the new arrangements...”
AND? ----------- Nothing. No e mail, no posters, no letters, no announcements. ------- Nothing. And they say the Higgs Boson could create a black hole!
So LINks here exclude the excluded.
For the Patient and Public Involvement Forum Organisation (http://www.ppif.org.uk) in May 2005 I wrote: “..... there is a large and very significant proportion of the service user/carer population who, for many reasons, cannot travel. Some are prevented physically - those people wheelchair bound; those with MS; those with ME; those with cerebral palsy; those with diabetes who have serious peripheral neuropathies or amputations; those with sensory deprivations; those with Meniere's disease; those with arthritis; those with problems of incontinence; those with epilepsy; those with autistic spectrum disorders; those with spinal disorders; etc, etc....
And then there are those who are prevented by mental impairments: those with agoraphobias; and a whole spectrum of phobias; those with certain kinds of schizophrenia; those whose depressive inertia chains them inside their homes; those with obsessive/compulsive disorder; those with anxiety disorders; those with certain kinds of personality disorder; those with Tourette's Syndrome; those whose self image is so fragile it is impossible for them to relate to other people; those with drug induced psychoses; those suffering from PTSD; etc, etc........
And there are those for whom travelling is so difficult it is a barrier - by reason of social and financial deficits and complexities: those living on welfare benefits; people from previous generations and social classes for whom travel was never a facile thing; people who have never learned to drive; people who live in places where the bus arrives once or maybe twice a week; people who can't read or write; people who are afraid to travel because of what they perceive as ever present criminal activity; people with language problems; people with cultural misconceptions; people who live in fear of discrimination; etc, etc.......
These are all real first line service users and carers - people who should be in the forefront of PPI Forum membership, but people, especially in rural areas, who are neglected and excluded. And they are people who seem to be invisible to the usual worthies, retired healthcare professionals; OBE seekers, businessmen looking for the main chance to make a profit out of the NHS, and middle class suits who appear to constitute the core membership of the hospital and PCT trust PPI Forums around here.” (PPI - The Nails in the Rural Coffin, Mike Cox, 23.05.05.
http://www.ppeyes.org.uk/forruralproof.html)
NCI and it’s LINks brief.
I was puzzled by the PCX administrator’s response to my last blog entry and there seem to be some contradictions flying around. I was pleased then to receive mail about positive partnership arrangements from Malcolm Alexander and Ruth Marsden, Chair and Vice Chair of the National Association of LINks Members. I make no apologies for quoting them in full:
“The Health Select Committee emphasised it would welcome a national body for LINks, the DH document “Getting Ready for LINks” made it clear that they would accept a national organisation: “We believe there is nothing to prevent LINks establishing a national body to share and co-ordinate their work if they so wish.” and the legislation specifically allows for national and regional bodies. 700 people who are currently in LINks, or part of transitional arrangements or who intend going into LINks have anticipated this acknowledged need to ‘share and co-ordinate work’ and established the National Association of LINks’ Members (NALM) on April 1st – the day that LINks started.
LINks’ members report that about 50 local authorities have a host in place and many other local authorities have established “transitional arrangements”. Hundreds of LINks’ members are looking to their National Association for information, networking, contacts, updates and advice and as a central body to lobby Government Ministers, the NHS, other national bodies, and local government. LINks’ members are supporting NALM with subscriptions and more members join daily.
The National Association is providing information and support for members who have joined LINks or are in the process of developing these. The Association has developed an extensive range of resources and already has the capacity to exchange information across England. The Association is currently working with or in communication with: the Department of Health, NCI, Centre for Public Scrutiny (CfPS), BMA, the Local Government Association and many other local, regional and national bodies.
NALM is carrying the issues and concerns of LINks’ members to decision- makers across the country and is fulfilling this essential role at a time when LINKs are seeking to establish themselves.
NALM is independent and member-led. Its remit is to see LINKs become powerful local and national bodies and build real accountability within health and social care. Our members are experienced and knowledgeable and determined to have real influence over health and social care.
A key priority of NALM is to open up PPI to all users, patients and the wider public and to ensure that health and social care bodies listen and respond to the voices of local people.“
It seems to me a close working partnership between NCI and NALM could bring many positive benefits - even to Norfolk!
The catalyst to this state of mind was finding out that the Norfolk Police Disability Forum of which I was Chair and which had carried so much optimism about public body intentions for me has been either disregarding the Forum altogether or using it as a token reason for them doing the minimum to comply with Disability Discrimination legislation: - they had to engage with disabled people by law so they have done this by setting up their Disability Forum and then (again under the cover of fine, empty words) have just left it to ‘talk amongst itself’ whilst functions it was set up to perform just bypass it and nil resources are allocated to it.
I resigned.
And there are many indications that some local authorities, PCTs and hospital trusts are also doing the absolute minimum to comply the Disability Discrimination Act 2005. Having published their Disability Equality Schemes they are conveniently forgetting they exist or burying them in amongst generic policies under the name of “diversity.”
All this really makes mugs of those people who in good faith give their time, skill and knowledge in a voluntary capacity. I’ve taken several steps back to have a proper think.
However, I have written my April blog for PCX and here it is:
LINks Developments in Norfolk
Throughout the summer of 2007 I was in touch with the Department of Health for notification of the appointment of the Norfolk County Council Lead Person for LINks. Eventually, via a Freedom of Information request to Norfolk CC, I found out. On 21.09.07. I contacted that person to ask: “Can I please ask you to include me in any meetings you organise and to include meeting venues accessible to people who live in this area. I live in an area of Norfolk generally socially excluded from most community development activities and too many of those activities turn out to be Norwich-centric - not easily accessible for those hard to reach people with disabilities. My address is: xxxxxxx”
Between then and the end of March this year I was in regular touch with that lead person expressing a keen interest. On 24.03.08. I mailed him saying: “As the 31st and the demise of PPI Forums approaches, you must by now have the interim body in place to continue necessary work... can you please let me have details of the new arrangements...”
AND? ----------- Nothing. No e mail, no posters, no letters, no announcements. ------- Nothing. And they say the Higgs Boson could create a black hole!
So LINks here exclude the excluded.
For the Patient and Public Involvement Forum Organisation (http://www.ppif.org.uk) in May 2005 I wrote: “..... there is a large and very significant proportion of the service user/carer population who, for many reasons, cannot travel. Some are prevented physically - those people wheelchair bound; those with MS; those with ME; those with cerebral palsy; those with diabetes who have serious peripheral neuropathies or amputations; those with sensory deprivations; those with Meniere's disease; those with arthritis; those with problems of incontinence; those with epilepsy; those with autistic spectrum disorders; those with spinal disorders; etc, etc....
And then there are those who are prevented by mental impairments: those with agoraphobias; and a whole spectrum of phobias; those with certain kinds of schizophrenia; those whose depressive inertia chains them inside their homes; those with obsessive/compulsive disorder; those with anxiety disorders; those with certain kinds of personality disorder; those with Tourette's Syndrome; those whose self image is so fragile it is impossible for them to relate to other people; those with drug induced psychoses; those suffering from PTSD; etc, etc........
And there are those for whom travelling is so difficult it is a barrier - by reason of social and financial deficits and complexities: those living on welfare benefits; people from previous generations and social classes for whom travel was never a facile thing; people who have never learned to drive; people who live in places where the bus arrives once or maybe twice a week; people who can't read or write; people who are afraid to travel because of what they perceive as ever present criminal activity; people with language problems; people with cultural misconceptions; people who live in fear of discrimination; etc, etc.......
These are all real first line service users and carers - people who should be in the forefront of PPI Forum membership, but people, especially in rural areas, who are neglected and excluded. And they are people who seem to be invisible to the usual worthies, retired healthcare professionals; OBE seekers, businessmen looking for the main chance to make a profit out of the NHS, and middle class suits who appear to constitute the core membership of the hospital and PCT trust PPI Forums around here.” (PPI - The Nails in the Rural Coffin, Mike Cox, 23.05.05.
http://www.ppeyes.org.uk/forruralproof.html)
NCI and it’s LINks brief.
I was puzzled by the PCX administrator’s response to my last blog entry and there seem to be some contradictions flying around. I was pleased then to receive mail about positive partnership arrangements from Malcolm Alexander and Ruth Marsden, Chair and Vice Chair of the National Association of LINks Members. I make no apologies for quoting them in full:
“The Health Select Committee emphasised it would welcome a national body for LINks, the DH document “Getting Ready for LINks” made it clear that they would accept a national organisation: “We believe there is nothing to prevent LINks establishing a national body to share and co-ordinate their work if they so wish.” and the legislation specifically allows for national and regional bodies. 700 people who are currently in LINks, or part of transitional arrangements or who intend going into LINks have anticipated this acknowledged need to ‘share and co-ordinate work’ and established the National Association of LINks’ Members (NALM) on April 1st – the day that LINks started.
LINks’ members report that about 50 local authorities have a host in place and many other local authorities have established “transitional arrangements”. Hundreds of LINks’ members are looking to their National Association for information, networking, contacts, updates and advice and as a central body to lobby Government Ministers, the NHS, other national bodies, and local government. LINks’ members are supporting NALM with subscriptions and more members join daily.
The National Association is providing information and support for members who have joined LINks or are in the process of developing these. The Association has developed an extensive range of resources and already has the capacity to exchange information across England. The Association is currently working with or in communication with: the Department of Health, NCI, Centre for Public Scrutiny (CfPS), BMA, the Local Government Association and many other local, regional and national bodies.
NALM is carrying the issues and concerns of LINks’ members to decision- makers across the country and is fulfilling this essential role at a time when LINKs are seeking to establish themselves.
NALM is independent and member-led. Its remit is to see LINKs become powerful local and national bodies and build real accountability within health and social care. Our members are experienced and knowledgeable and determined to have real influence over health and social care.
A key priority of NALM is to open up PPI to all users, patients and the wider public and to ensure that health and social care bodies listen and respond to the voices of local people.“
It seems to me a close working partnership between NCI and NALM could bring many positive benefits - even to Norfolk!
Comments
I am sorry that you have come to a place, I reckon, close to where I got at the end of my involvement period (actually let us call it my grey period).
Such is the real shame of these show room dummy consultations and forums. That people who want to do right by other service users..the ones who actively seek their opinions and bring them to the table...are disrepected, disregarded and left deflated.
My friend, Tommy, who is no longer with us was an active member of SUIP (Beds so called user involvement forum) and like me he got to realising it wasn't about service users at large but about a selective few. More so in his case because he was actively ousted where as I told them what they could do with their malpractises.
That experience, my experiences on the PPI and in NIMHE...as well as the even more tokenistic talk I gave at the Party Conferences (not enough moons ago for it not to stick in my throat like a decomposing frog...bones prodding into inside of my neck) has left me with a determination not join anything affiliated to the government (by structure and/or finance). If it isn't self manned...as in a small group of people who maybe don't have money but some computer resources and communiction skills..or has charitable status outside of government financial influence then it just ain't chocolate and I ain't going to be taking off wrapper after wrapper to find that out.
is always best to vote with your heart and your feet. That way you know you are sticking to your values..even in a society that doesn't value them.
:>)