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WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.
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Saturday, 9 May 2009

The Boundary Committee Decision on Norfolk

This is my response to the Boundary Committee proposals for Norfolk. I make no excuses for its length.

Norfolk Boundaries



As an ordinary citizen/service user living in a rural area of Norfolk I would like you to consider this contribution to your decisions about possible unitary authorities in this area.

A major problem here has long been the all prevailing centralist mindset in Norfolk County Council and the other public authorities with a county wide remit. This has evolved into a majority concentration of services, facilities and activities (meetings, presentations etc.) , even those with a rural focus, on Norwich. The consequences of this in terms of social exclusion are substantial, with people who may wish to avail themselves of a service or contribute to a public debate or consultation being unable to do so because they are unable or unwilling to travel the 25+ miles to get into Norwich.

Let me give you some examples:


1. I asked: “What provisions are being made to ensure full engagement with service users living in rural communities, service users with mental health problems, service users with mobility and sensory difficulties and service users with learning difficulties for the purposes of early planning?” It was a Seminar in Norwich entitled Best Practice hosted by the Norfolk and Waveney Mental Health Partnership NHS Trust. The year: 2003. The particular presentation was called Cultural Competence, an approach which strives to ensure that all aspects of a patient's are taken into account systematically. I again asked the presenter about taking account of service users in rural areas and ensuring they the same standard of service and ease of access to services as those living in Norwich (I had reminded them of this throughout as there was no mention of rural issues in any of the sessions)

A Senior Child Psychologist from the trust, obviously frustrated at my frequent interruptions, shouted at me angrily: THIS IS ABOUT BEST PRACTICE, WHAT HAS “THE STICKS” GOT TO DO WITH IT!!!! - WE CAN'T BE BOTHERED WITH PAROCHIAL MATTERS.”

2. In spring 2008 I made a formal complaint to Norfolk County Council. Extracts from that complaint read:

“Norfolk County has an area of about 2,069 square miles and a population (at 2007) of 840,656. Norwich has a population of just 132,241 which leaves the rest of Norfolk, much of this rural communities, with 708,415.

I despair when a statutory body like Norfolk County Council poses as serving its county while in reality it focusses on a minority of its population who live in a city area like Norwich and neglects its rural areas where the population is in the majority. It makes me angry when the same statutory body pays a cavalier disregard to
its statutory duties, especially those relating to disabled people.

“My jaw dropped when I read that an officer of a local authority responsible for a largely rural county had written: “Holding the meetings near Norwich gave access to the largest populated areas…” It is astonishing that this centralist mindset persists in these days of awareness of rural social exclusion - well, awareness outside Norfolk anyway.”

“I’ve just got back from the second of the only meetings preparatory to LINks organised by Norfolk County Council. To get there I had to arrive late (disabled by the early start) and run up a personal cost of 42 miles. No public transport could have got me to the venue. Hardly best practice for social inclusion or as the Norfolk LINks lead said: “a strategy essential to engaging those people hard to reach.”

As if to rub in their blatant cavalier attitude to consulting service users I now accidentally hear they have another consultation for which they have set up four public meetings - two of them 20 miles from here and two of them 40 miles from here.”

3. In 2002 I was carrying out voluntary advocacy with for a mother struggling to care for a seriously autistic toddler living in the fringes of eastern Norfolk. This young family had asked for help several times for about six months. They had none.

I wrote, with their permission, in the then Beccles Community Newspaper, 'The Essential Voice,' “Despite writing to the Director of Social Services on the family's behalf, we have also had no success in getting a response at the time of writing - even though this issue involves the welfare of a child being in serious jeopardy. In my professional opinion, Norfolk Social Services Department is in breach of its own Area Child Protection Committee protocols and, more pertinently, Department of Health child protection guidelines”

And my follow up report a month later said: “Developments in the case are that, after the mother and child and I, as their advocate, had driven the twenty five miles to her nearest Social Services office in Norwich and had demanded an assessment there - wholly unacceptable that someone in her position had to go to those lengths and that level of stress to obtain an essential service - she finally received a home visit after another week's lapse.”here!

4. I’ll never forget the retort from a senior PCT officer when (yet again) I complained about rural areas being excluded by PCT practices. He said: “Well that’s your fault for choosing to live where you do.”

5. In 2005, in response to the government proposals to reduces the number of PCTs I wrote this article. I think it appropriate to copy it here in full:
        

PPI - The Nails in the Rural Coffin?


First, this exchange:





Helen Jones: “Does my right hon. Friend accept that if we are to strengthen the voice of communities and patients in the health service, we have actively to seek to involve people from communities that are currently under-represented in the NHS's decision-making process? Will he give us an assurance that the commission will actively seek the involvement of people from deprived communities not only on advisory bodies, but in the NHS's decision-making process?”




Alan Milburn: “Unless we improve the NHS's governance and make it more representative of the local communities that it serves, we shall never reach the position at which local services are responding to the needs of local communities........ We need to ensure that the patients forums are not only representative of the local community but can express expertise on behalf of that local community.” (Commons Hansard, 2nd reading Health and Social Care Bill, 10.01.01.)



And the contradictory proposals:


From the start then the Government considered it fundamentally important that there is a need to: “....ensure that the patients forums are not only representative of the local community but can express expertise on behalf of that local community.”

But the results of the ALB review brought a crucial decision: “Many workshop participants believe it would be logical to remove the distinction between PCT and NHS trust forums.

Participants believed this would enable forums to look more effectively at the whole patients’ journey. After considering a number of ways we could reconfigure forums, we believe that this can best be achieved through combining forums within each Primary Care Trust (PCT) area. These forums would retain a specific focus on every NHS trust and NHS foundation trust in that PCT area. This would provide a coherent structure focused on the PCT which has responsibilities relating to both provision and commissioning of services. This approach will involve the minimum amount of disruption for forums, will provide continuity for NHS organisations and enable forums to track the patients’ journey more closely.” 
(Government response to the consultation exercise about the future support arrangements for patient and public involvement in health 15th March 2005)



Commentary:


This proposed change appears to be welcomed by many Forum members who have been unhappy with the arrangements so far and it can certainly be seen how in urban communities with relatively tight geographical areas and distances, and, usually, good public transport, it will be an improvement. The benefits are obvious: an increased number of volunteers for each PPI Forum; less duplication of effort; shorter lines of communication; and better awareness of the whole patient route.

The problem lies though, in the one-size-fits-all approach; for the many PPIFs in rural communities will find varying degrees of increased difficulty with unworkability at the extreme end. I’ll describe my own area of Norfolk with the note that is not atypical:

Norfolk is only the fifth largest county in England.

Spread over an area of over 2000 square miles we have three large general hospital trusts; one huge mental health trust which covers the whole of the county plus a section of north Suffolk; one ambulance trust which covers the massive geographical area of three counties; six PCT trusts and one PCT trust in north Suffolk which is involved because in that part of Suffolk mental health services are provided by the Norfolk and Waveney Mental Health Partnership NHS Trust.



Zooming in to more local communities, in the area covered by Southern Norfolk PCT - about 400+ square miles - the PCT PPI Forum has, since 01.12.03., yet to hold a public meeting in the eastern segment of that area and it has no plans, as yet, to do so. To get to the nearest public meeting of that forum so far (in Wymondham) a patient or member of the public from, say, Burgh St Peter, would have had to make a journey by car (there is no viable public transport connecting the two) of fifty six miles.



Circumstances and conditions in the county also reflect the national position, as I suspect is prevalent in other large counties: When I was in healthcare practice, I and some my colleagues used to routinely refer to “Norwich County Council”, for all the services were centred in Norwich and its surrounds with a serious dearth of services in other areas of the county. Even now organisations such as ISU (Involving Service Users) purporting to represent Norfolk service users in reality ignores most users outside Norwich. That is just one example of the norm; even though 83% of Norfolk’s population live outside Norwich. So take away the relatively local PPIFs and PPI is in real trouble. 



In a recent mental health internet discussion about PPIF accessibility, having been asked why distance mattered at all, as most forum members have cars. 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 all of these can have mental health problems in addition.



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 then there are those for whom travelling or participating is difficult by the fact of their conditions rendering them social pariahs: those with HIV/AIDS; those with sexually transmitted diseases; those with opiate addiction; 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; young people who are seen as deviant and who take on those roles; people from previous generations and social classes for whom travel was never a facile thing ( I have a good friend - a very able person - who worked on the land all his life and who has lived contentedly inside the same three square miles all his life and wouldn't dream of trying to travel the 15 miles into Norwich, even though he has his own car); 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.”



The Government, via Alan Milburn’s Commons statement quoted above agrees with me: “We need to ensure that the patients forums are not only representative of the local community but can express expertise on behalf of that local community.”!!



Looking at things from another angle, The Norfolk and Waveney Mental Health Partnership NHS Trust PPI Forum currently has eight members. There are six PCT trusts in Norfolk and one in Waveney. Eight into seven? Just how marginalised will mental health be in these circumstances? Further to this, the MH PPIF is presently fortunately atypical in that its membership has a majority of genuine service users and carers. Those members, some of whom are vulnerable, now seem to be confident enough in themselves, via the support of the group, to participate fully in the work of the group contributing valuable expertise. It would seem a share out must be inevitable. Transfer one or two of those valuable experts to a large PCT and some will find it impossible to make themselves heard in a large unfamiliar group where other priorities are being fought for. And some will find the prospect too daunting full stop. Some of these factors apply, in varying degrees to the other PPIFs to be amalgamated. They will all be diluted in one way or another. And learning disabilities/difficulties which have yet to find PPI representation here will be relegated further.



And so it seems that the Government decision “...combining forums within each Primary Care Trust (PCT) area.” has probably been made by metropolitan people with metropolitan mindsets and urban imaginations withered by exhaust fumes. That decision undoubtedly sets up a continuum of difficulty with, at one end, clusters of advantages accruing to large cities with compact geographical areas and excellent (sometimes free) public transport through increasing problems for large towns and suburban conurbations to nigh impossibility for Helen Jones’ vulnerable people from deprived communities that are currently under-represented in the NHS's decision-making process - country people in counties like Norfolk.

© Mike Cox.
23rd May, 2005.


That the social exclusion of so many people living in rural Norfolk should be allowed to continue is unacceptable.

I believe your “Further draft proposal:

●        “A Greater Norwich unitary authority and a Rural Norfolk unitary authority comprising the rest of the county of Norfolk.”


would go a long way to addressing the problems of social exclusion, disability discrimination and denial of health and social care services exemplified in this contribution.



Mike Llywelyn Cox.
9th May, 2009.

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