This is my February blog for the NCI Patient Citizen Exchange. It was submitted on 19.02.08. and I had to prompt on 25.02.08. for an acknowledgment that it had been received. It had.
But it still hasn’t been published on PCX and we are now into March! I suspect that the blog is not to the taste of the civil servants at NCI and is on the verge of being censored. Beyond incompetence, I cannot see any other reason for the delay.
The February PCX blog:
Resulting from comments I have made on the PCX forums about service user exclusion from major conferences which at which it is essential to include service users, Paul Emmerson asked if I could offer more on the subject. I have broadened it and made it the topic of my February blog.
So “What’s up Doc?”....... What’s up is that the fundamentals of Local Involvement Networks - what they are all about - are service users or consumers or survivors (your term ‘patients’).
Whichever term is used, these people are volunteers. But - although all patients are service users it must be remembered that not all volunteers are service users.
Since the August of last year, the NHS Centre for Involvement has been promoting and advertising a series of Conferences, aimed at preparations for the advent of LINks in April 2008. I’ll use the first NCI conference as an example.
On 3rd of August 2007, this appeal was sent to Meredith Vivian of DoH from the then embryo National Association of Patient forums:
Meredith replied that he didn’t know -
Further inquiries found the estimated cost of the conference to be £152,290,00. The concessionary rates for voluntary organisations were: Both Days: (including Gala Dinner) £300.00 + VAT (£352.50); Day One: (excluding Dinner) £100.00 + VAT (£117.50); Day Two: (excluding Dinner on Day One) £175.00 + VAT ( £205.63)
Clearly, there were not many voluntary patient/service user organisations who could afford these concessionary rates and certainly very, very few service user ‘stakeholders’.
Since then there have been more staged events preparatory to LINks - all of them inaccessible to service users - the very people who form the core of the concept and without whom no adequate preparation can be made. Inaccessible either because of the cost of entry or because these events have been large conferences, easy for employees of professional organisations, public bodies and many voluntary organisations but, geographically out of reach of service users, especially those at work during the day or existing on welfare benefits.
Laughingly, e mail from NCI carries the slogan:
Which way is forward?
The Commission for Patient and Public Involvement in Health (CPPIH), in 2003 and 4 began its short life by completely ignoring all the knowledge and expertise accumulated over decades by voluntary and service user organisations, and studiously kept those organisations and individuals at arms length (for more information on this state of affairs see http://www.ppeyes.org.uk/ppimpediment.html). I believe that kind of wrongheaded corporate mindset arose out of CPPIH being staffed by Civil Servants and the insular working culture which accompanies that ilk. I am not sure if that applies to NCI or not but changing that kind of mindset is a necessary basis to genuine service user involvement.
However, some applause is due CPPIH for it seems it has, at last, learned from the past. Their staging of the event, The Role of the Voluntary Sector in the new Local Involvement Networks (LINks) on 25th of last month, an event which was attended by representatives from around 30 voluntary organisations, and which I see Paul and Ruth Hallett both attended, brings with it optimism on this score. A black mark is that it was, once again, a ‘Londoncentric event.’
Embedded in this abovementioned corporate mindset is a rooted resistance by professionals and managers to active working partnerships with ‘unqualified’ people. This is only natural in those who have spent years learning their profession and earning advancement in their employment. It does though, sometimes develop into a “It is my job and know what is best for you” syndrome - the classic “Are you questioning my clinical judgement” of the doctor. Both these however, are built on false premises. Reality is: a) service users are not ‘unqualified’; and b) professionals and managers are sometimes locked into their own professional tunnel vision. “Ultimately service users have direct experience of what works, what doesn't; what can be experienced as positive and what is essentially demeaning or unhelpful...the user's voice is essential in challenging the presumptions that inevitably flow from old orthodoxies... Historically, the two biggest barriers to user involvement in services have been professional attitudes...” (’Introduction to user involvement’, Lead author: Mike Bryant, Senior Consultant, The Sainsbury Centre for Mental Health, 2001).
There are key people and organisations who are conspicuous by their absence at the above CPPIH event: the Joseph Rowntree Foundation (JRF), Shaping our Lives, the Care Services Improvement Partnership (CSIP), the Commission for Social Care Inspection (CSCI); the Social Care Institute for Excellence (SCIE) and the National Service User Network (NSUN), to name just a few. But these few are of central importance because, rather than being just part of the Voluntary and Community Sector, they all involve service users. practice service user involvement and have involvement expertise. Most surprising is the absence of JRF as they specifically have recently published two excellent reports evaluating local LINks pilot programmes (not mentioned at the above CPPIH conference on 25.01.08.). Those reports can be found at: http://www.jrf.org.uk/knowledge/findings/socialpolicy/2184.asp
At the 25.01.08. CPPIH conference David Pink, Chief Executive of the Long Term Conditions Alliance and member of the ‘Expert Panel’ at the root of the changes to PPI said:
Forward is in this direction:
The NHS Centre for Involvement has had various titles in its embryo stages: it was the ‘National Resource Centre for PPI’ as promised by the John Reid Arms Length Bodies Review which first set abolition for CPPIH a couple of years back; then it was designated the “PPI Centre for Excellence” by of Rosie Winterton and the Expert Panel reviewing PPI. These roles incorporate core activities and values and MUST, as Harry Cayton said: “...put the needs and preferences of patients and service users at the centre of all we do.”
NCI should then:
❑ Train all its personnel in service user involvement awareness which can be coupled with diversity awareness. NCI is part of the University of Warwick. The University has a School of Health and Social Studies which claims as one of its aims:
❑ Cascade that training to all local authority staff with functions associated with LINks, Hosts and LINks themselves.
❑ Top of the list of conclusions from the 25.01.08. CPPIH conference is:
❑ Neither service users nor volunteers are employees. Personnel policies and controls should not be used for volunteers in LINks. In a letter to CPPIH of January 2005 (at http://www.ppeyes.org.uk/ppeyesdossier.html#169) I said:
❑ It is standard corporate practice to use major conferences and workshops for mass joint communication. Service users and volunteers, unless they are members of large charitable organisations willing to pay for them, cannot get to these events and without them, the events relating to LINks are meaningless. NCI should eschew this element of corporate culture and utilise a variety of creative means to engage people. The seminal service user paper, On Our Own Terms (Jan Walcraft, Jim Read and Angela Sweeney et al, Sainsbury Centre for Mental Health, 2003 - available at http://tinyurl.com/396xx9) says:
❑ NCI must pay special attention to those service users with restricted means, especially those centrally important and often excluded people who have to live on welfare benefits. A good practice example here is the national Seminar set up last Spring by the Social Care Institute for Excellence (SCIE) and Shaping our Lives. The seminar was a central event in London, but to properly engage service users from all parts of the country, SCIE arranged first class rail tickets, five star overnight accommodation for those needing it (i.e. disabled users) and a one off gift payment of £70 for each service user attending. The seminar produced a report, ‘Benefit barriers to involvement - finding solutions’ which is available at http://www.scie.org.uk/publications/misc/bbi/index.asp. More advice is available in the Department of Health publication, ‘Reward and Recognition’ at http://tinyurl.com/2oenws.
❑ All the documents in this blog are essential reading for those involved with LINks, which cannot function without service user involvement. I must mention one more though: Making a Real Difference (Tina Coldham et al, Health and Care Advisory Service, April 2005) is research about ‘Strengthening Service User and Carer Involvement in NIMHE’ - the National Institute for Mental Health in England. Substitute NCI for NIMHE throughout the document and you have an excellent guide. It can be found at: http://tinyurl.com/23oy4p
❑ Disability is created by people and institutions. NCI should pay heed to this axiom:
But it still hasn’t been published on PCX and we are now into March! I suspect that the blog is not to the taste of the civil servants at NCI and is on the verge of being censored. Beyond incompetence, I cannot see any other reason for the delay.
The February PCX blog:
Resulting from comments I have made on the PCX forums about service user exclusion from major conferences which at which it is essential to include service users, Paul Emmerson asked if I could offer more on the subject. I have broadened it and made it the topic of my February blog.
So “What’s up Doc?”....... What’s up is that the fundamentals of Local Involvement Networks - what they are all about - are service users or consumers or survivors (your term ‘patients’).
...it is essential that we put the needs and preferences of patients and service users at the centre of all we do.(Harry Cayton, Introduction to "A Stronger Local Voice, DoH 2006)
If we are to create a truly patient-led service, centred around the needs of both individuals and communities, it is essential that we create a stronger voice for patients, service users and citizens at all levels of the health and social care system. We are committed to empowering citizens to give them more confidence and more opportunities to influence public services in ways that are relevant and meaningful to them, and in ways that will make a real difference to services. We want people to become active partners in their healthcare and wish to create a system where people are no longer passive recipients of NHS and social care services. (Rosie Winterton, Foreword to "A Stronger Local Voice" DoH 2006)
Whichever term is used, these people are volunteers. But - although all patients are service users it must be remembered that not all volunteers are service users.
Since the August of last year, the NHS Centre for Involvement has been promoting and advertising a series of Conferences, aimed at preparations for the advent of LINks in April 2008. I’ll use the first NCI conference as an example.
On 3rd of August 2007, this appeal was sent to Meredith Vivian of DoH from the then embryo National Association of Patient forums:
Deeply dismayed to note the NCI event is mega-expensive. Very little chance of PPIF Chairs getting anywhere near it.
'Involvement' is becoming meaningless, for patients and the public who are supposed to be what it's all about.....
Why has this happened?
Meredith replied that he didn’t know -
I am not part of the NCI so cannot speak for it.
Further inquiries found the estimated cost of the conference to be £152,290,00. The concessionary rates for voluntary organisations were: Both Days: (including Gala Dinner) £300.00 + VAT (£352.50); Day One: (excluding Dinner) £100.00 + VAT (£117.50); Day Two: (excluding Dinner on Day One) £175.00 + VAT ( £205.63)
Clearly, there were not many voluntary patient/service user organisations who could afford these concessionary rates and certainly very, very few service user ‘stakeholders’.
Since then there have been more staged events preparatory to LINks - all of them inaccessible to service users - the very people who form the core of the concept and without whom no adequate preparation can be made. Inaccessible either because of the cost of entry or because these events have been large conferences, easy for employees of professional organisations, public bodies and many voluntary organisations but, geographically out of reach of service users, especially those at work during the day or existing on welfare benefits.
Laughingly, e mail from NCI carries the slogan:
The NHS Centre for Involvement will provide the tools to turn Patient and Public Involvement into everyday practice.
Which way is forward?
The Commission for Patient and Public Involvement in Health (CPPIH), in 2003 and 4 began its short life by completely ignoring all the knowledge and expertise accumulated over decades by voluntary and service user organisations, and studiously kept those organisations and individuals at arms length (for more information on this state of affairs see http://www.ppeyes.org.uk/ppimpediment.html). I believe that kind of wrongheaded corporate mindset arose out of CPPIH being staffed by Civil Servants and the insular working culture which accompanies that ilk. I am not sure if that applies to NCI or not but changing that kind of mindset is a necessary basis to genuine service user involvement.
However, some applause is due CPPIH for it seems it has, at last, learned from the past. Their staging of the event, The Role of the Voluntary Sector in the new Local Involvement Networks (LINks) on 25th of last month, an event which was attended by representatives from around 30 voluntary organisations, and which I see Paul and Ruth Hallett both attended, brings with it optimism on this score. A black mark is that it was, once again, a ‘Londoncentric event.’
Embedded in this abovementioned corporate mindset is a rooted resistance by professionals and managers to active working partnerships with ‘unqualified’ people. This is only natural in those who have spent years learning their profession and earning advancement in their employment. It does though, sometimes develop into a “It is my job and know what is best for you” syndrome - the classic “Are you questioning my clinical judgement” of the doctor. Both these however, are built on false premises. Reality is: a) service users are not ‘unqualified’; and b) professionals and managers are sometimes locked into their own professional tunnel vision. “Ultimately service users have direct experience of what works, what doesn't; what can be experienced as positive and what is essentially demeaning or unhelpful...the user's voice is essential in challenging the presumptions that inevitably flow from old orthodoxies... Historically, the two biggest barriers to user involvement in services have been professional attitudes...” (’Introduction to user involvement’, Lead author: Mike Bryant, Senior Consultant, The Sainsbury Centre for Mental Health, 2001).
There are key people and organisations who are conspicuous by their absence at the above CPPIH event: the Joseph Rowntree Foundation (JRF), Shaping our Lives, the Care Services Improvement Partnership (CSIP), the Commission for Social Care Inspection (CSCI); the Social Care Institute for Excellence (SCIE) and the National Service User Network (NSUN), to name just a few. But these few are of central importance because, rather than being just part of the Voluntary and Community Sector, they all involve service users. practice service user involvement and have involvement expertise. Most surprising is the absence of JRF as they specifically have recently published two excellent reports evaluating local LINks pilot programmes (not mentioned at the above CPPIH conference on 25.01.08.). Those reports can be found at: http://www.jrf.org.uk/knowledge/findings/socialpolicy/2184.asp
At the 25.01.08. CPPIH conference David Pink, Chief Executive of the Long Term Conditions Alliance and member of the ‘Expert Panel’ at the root of the changes to PPI said:
...he agreed...that the Voluntary and Community Sector (VCS) has been doing Patient and Public Involvement for decades, long before the Government discovered the term PPI (Conference Report).You will by now be aware I am making a distinction between VCS and Service User Involvement. They are interchangeable with the proviso that not all volunteers are service users. The truism David Pink expressed applies even more to the Service User Movement and that is one good reason it is essential it should be firmly included at the centre of all PPI activities and not ignored as CPPIH did with Service User Involvement, and indeed VCS.
Forward is in this direction:
The NHS Centre for Involvement has had various titles in its embryo stages: it was the ‘National Resource Centre for PPI’ as promised by the John Reid Arms Length Bodies Review which first set abolition for CPPIH a couple of years back; then it was designated the “PPI Centre for Excellence” by of Rosie Winterton and the Expert Panel reviewing PPI. These roles incorporate core activities and values and MUST, as Harry Cayton said: “...put the needs and preferences of patients and service users at the centre of all we do.”
NCI should then:
❑ Train all its personnel in service user involvement awareness which can be coupled with diversity awareness. NCI is part of the University of Warwick. The University has a School of Health and Social Studies which claims as one of its aims:
giving a voice to patients and service users, for example through the use of emancipatory research methods with hidden, silenced and marginalised groups in society.That training should be run by service users. They are very much in touch with reality:
Service users repeatedly express their concerns about ‘tokenism’ and ‘tick-box’ approaches to participation. User involvement has not achieved equal involvement for all groups. Some groups still face particular barriers and exclusions and seem less likely to be listened to: for example, black and minority ethnic service users, people who communicate differently and older people. ( Making User Involvement Work, JRF, Peter Beresford, Fran Branfield et al., 2005. Available at http://www.jrf.org.uk/bookshop/details.asp?pubID=836).
❑ Cascade that training to all local authority staff with functions associated with LINks, Hosts and LINks themselves.
❑ Top of the list of conclusions from the 25.01.08. CPPIH conference is:
Need to have a national Hub to bring information together.and one of the workshop concerns:
How can it (LINks) work alongside existing networks.Well, unless John Reid and Rosie were fibbing (no...I don’t believe it!), NCI is that national Hub - alongside a National Association representing LINks members, perhaps. And, their absence at the 25.01.08 conference constituting a serious omission, Shaping our Lives (http://www.shapingourlives.org.uk) and the National Survivor User Network (http://www.nsun.org.uk) are service user run organisations with national networks which are strongly expanding. NCI should be proactively seeking partnerships with these organisations.
❑ Neither service users nor volunteers are employees. Personnel policies and controls should not be used for volunteers in LINks. In a letter to CPPIH of January 2005 (at http://www.ppeyes.org.uk/ppeyesdossier.html#169) I said:
CPPIH tries to squeeze VOLUNTEERS into a policy borrowed from corporate employment and one totally inappropriate to their civil and human rights. Volunteers are people who, of their own volition, give their time and goodwill to your organisation and the community to help, free of charge. An employee subject to your Standards of Conduct Policy would have effective access to resources to balance out the impact of the power of a corporate institution descending on them and would have some protection through employment law, health and safety law, disability discrimination law and laws of contract - and independent resources, such as a trade union, through which they could mount a fair defence. And they would have a clear means of independent appeal. Ultimately they would have access to an Employment Tribunal. Volunteers have none of this - they are naked in the face of your corporate power and they may be so affected as to be afraid to even speak to a friend.
❑ It is standard corporate practice to use major conferences and workshops for mass joint communication. Service users and volunteers, unless they are members of large charitable organisations willing to pay for them, cannot get to these events and without them, the events relating to LINks are meaningless. NCI should eschew this element of corporate culture and utilise a variety of creative means to engage people. The seminal service user paper, On Our Own Terms (Jan Walcraft, Jim Read and Angela Sweeney et al, Sainsbury Centre for Mental Health, 2003 - available at http://tinyurl.com/396xx9) says:
Professionals need to be prepared to go to service user/survivor groups (provided that this is wanted by the members) rather than always expecting service user/survivor groups to send representatives to professionals’ meetings. There needs to be a constant, well-directed effort to involve people from marginalised groups who may not be keen to come to meetings.The excellent Norfolk CC guide, ‘Accessibility Matters - Public Involvement’ - available at http://tinyurl.com/ywotra says:
We must recognise that, in order to carry out inclusive involvement and consultation, we may need to take more time and care in reaching some people. This may make it more expensive to reach them.That guide also has some good ideas for alternative means of communication.
❑ NCI must pay special attention to those service users with restricted means, especially those centrally important and often excluded people who have to live on welfare benefits. A good practice example here is the national Seminar set up last Spring by the Social Care Institute for Excellence (SCIE) and Shaping our Lives. The seminar was a central event in London, but to properly engage service users from all parts of the country, SCIE arranged first class rail tickets, five star overnight accommodation for those needing it (i.e. disabled users) and a one off gift payment of £70 for each service user attending. The seminar produced a report, ‘Benefit barriers to involvement - finding solutions’ which is available at http://www.scie.org.uk/publications/misc/bbi/index.asp. More advice is available in the Department of Health publication, ‘Reward and Recognition’ at http://tinyurl.com/2oenws.
❑ All the documents in this blog are essential reading for those involved with LINks, which cannot function without service user involvement. I must mention one more though: Making a Real Difference (Tina Coldham et al, Health and Care Advisory Service, April 2005) is research about ‘Strengthening Service User and Carer Involvement in NIMHE’ - the National Institute for Mental Health in England. Substitute NCI for NIMHE throughout the document and you have an excellent guide. It can be found at: http://tinyurl.com/23oy4p
❑ Disability is created by people and institutions. NCI should pay heed to this axiom:
In the broadest sense the social model of disability is about nothing more complicated than a clear focus on the economic, environmental and cultural barriers encountered by people who are viewed by others as having some form of impairment - whether physical, sensory or intellectual. The barriers disabled people encounter include inaccessible education systems, working environments, inadequate disability benefits, discriminatory health and social support services, inaccessible transport, houses and public buildings and amenities, and the devaluing of disabled people through negative images in the media - films, television and newspapers(British Council of Disabled People).
Comments
I am a lapsed member of that on line forum.
My experiences of it were that people were not prepared to listen to service users there.
It continues to promote bureaucracy. Does not acknowledge the relevance of computers and the internet as one, or any real part, of making things more inclusive.
To men it suffers the same intertia as all the other 'public involvement' initiatives as it does not start with the public, and even less with those who have histories of using services and are often long and arduous affairs (not of the heart!!!), but is another top down affair.
I don't doubt that many members of that forum have the best intentions but they lack insight and rather than trying to change the way things are run are prepared to be led or stick with a status quo.
Those involved in the forum should be proactively asking people (service users and the public) what they want. And maybe some 'thought showering' on new ways of doing things wouldn't go amiss either.
Not sure if I will ever return there. I can't be doing with things that waste my time and seem to make no positive difference.