Formal complaint: incompetent or wilful abuse of ‘research findings’ used as ‘evidence’ by senior Officers to support decisions and to mislead both elected members and the media about residential care for the learning disabled.

Posted: August 14th, 2006 | Author: DGPPG | Filed under: News | Tags: Background notes, Benyelleray, determinants, dishonest, DPPG, Dr Canpbell, Dunmuir Park, false briefings, Formal complaint, highly negative, individual tenancy, Judith Proctor, Kirsty Macpherson, outcomes, Prof Chris Hatton, Prof David Felce, Prof Eric Emerson, residential, shared living, Wilful abuse of research

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On Friday 28th July 2006 the following formal complaint was submitted to both D&G Council and NHS D&G.  It was also copied and submitted to the Health Minister Mr Andy Kerr MSP on 31/7 /06 for the Scottish Executive. 

This was all repeated a week ago when a reply was then chased.  Still nothing has been received.  Not even the elementary courtesy of an acknowledgement, as required by the ‘transparent’ complaints process.

So we are sending a third copy and chasing yet again for the second time more than 2+ weeks later, because we can only conclude that we are being ignored and that presumably this is deliberate?  Are the three public organisations concerned at all about the way in which such misleading and false research ‘findings’ have been published and used to inform policy for vulnerable adults and used in briefings to justify such policies to the BBC and other media?

To date and outwith the ‘5 day’ stated period for acknowledgement there has been no reply and no indication this complaint is being taken seriously and actioned in any way whatsoever.  Please could this be explained and action taken immediately according to the written complaints policies with a proper and full independent investigation.  Can we look forward to any form of reply please confirming the action now being taken and why we have not to date received any form of response?  DDPG

The following complaint was submitted Friday 28^th July 2006:

This is a formal complaint: to: D&G Council; NHS D&G and The Scottish Executive about what seems to be either the negligently incompetent or the wilful abuse of academic research ‘evidence’ or both, in a very important public policy area directly affecting vulnerable adults.  Whatever the reason or cause the (un)intended effect is to mislead elected MSPs, MPs, Council Members, other managers, the media and the concerned families about comparisons between models of residential care for the learning disabled.  It would appear this is highly likely to wrongly influence Scottish Executive and Council policy decisions in general and in particular a fallacious attempt to justify local action regarding the D&G Council + NHS D&G determination to close Dunmuir Park.  

When raising questions about Dunmuir Park during 2004 – 2006 at LDMG meetings and in written responses, including to the media and no doubt in other various ‘briefings’ for Members and other managers not yet disclosed to us, it is evident that all of us are/were either being incompetently mislead by those not qualified to understand or interpret or report upon complex academic research, therefore exceeding their professional capabilities, or those concerned have been selectively and wrongly misquoting particular ‘research evidence’ in order to support decisions taken for other reasons; all whilst holding out to be experts in this area.  Either way the ‘expert professionals’ have apparently not provided a properly balanced and suitably qualified representation of the available ‘evidence’.  What they have stated and reported is highly biased, partial and plainly wrong.  Yet we amateurs can apparently easily and quickly obtain the true facts in a few hours!  Why are the Officers concerned not achieving in a proper, timely and efficient manner that which they are employed and paid to do?

Given that elected D&G Council Members repeatedly state that they place great trust and reliance upon what ‘the professionals’ say and advise, do you agree this is a wholly unacceptable state of affairs and will this be fully and independently investigated please?  At the very least it would appear that very complex research, requiring a proper understanding of multivariate research methodology and demanding statistical techniques, is being falsely quoted and cited in a very simplistic way by those wholly unqualified to do so.  This whilst  both in post at D&G Council and also now at the Scottish Executive.  Do you agree that this should cease forthwith and corrections be issued together with public apologies to those academics who have been totally misquoted and their research misrepresented by the Scottish Executive, D&G Council and NHS D&G employees. 

As one example we have responses to the questions raised by the BBC prepared by Judith Proctor and submitted to BBC Radio Scotland in late May 2006.  In part of the answer to the question: What are the benefits of putting service users in to single tenancies?  Ms Proctor wrote: There are numerous, robust academic studies that show that people with a learning disability who move from residential and institutional settings have a better quality of life when they move to their own tenancy.  Details of the “numerous robust studies” were requested but never supplied or properly referenced.  However, what we now have released under FoI is a “Dunmuir park – Background Note for Rosemary Flexney” dated 6^th April 2006 written by Ms Kirsty MacPherson, now we understand working for the Scottish Executive.  This is a 4pp briefing, presumably written at the request of the D&G Council Head of Adult Services to inform D&G Council actions in this area?  We presume that Ms Proctor drew upon this ‘Background Note’ or similar advice in her reply to the BBC?  But if not then perhaps full details of all the ‘numerous studies’ shall be provided immediately by return, along with the formal qualifications of all those officers concerned to evidence their expertise, experience and competence to interpret such complex research?

As part of this formal complaint we also wish to report there are a number of other material and misleading inaccuracies in this ‘Background Note’.  Also to ask why someone working at the Scottish Executive for more than a year is still involved in advising or briefing on this matter at all, without this being fully open, transparent and disclosed to all involved?  What other possibly misleading ‘Background Notes’ or other briefings are in existence?

What Ms Macpherson states about “Extensive research …” is fully reproduced in Prof Emerson’s reply below, received within 1 hour of our email to the four cited academics.  That’s the priority he attached to our enquiry.  Within 2 hours Prof Felce replied in detail as well, whilst Dr Campbell a short while later agreed with what Profs Emmerson, Felce & Hatton had already said.  All repudiate and heavily qualify what Ms Macpherson advised with such authority.

Moreover the Felce & Perry draft chapter now following is very helpful indeed and all should read their conclusions reproduced here with acknowledgement.  We now invite all those who were not prepared to listen to the families and FDP to reflect on how this actually bears out and supports all that we have been saying and repeating since 2001 about DP, and why it may not automatically be compared to Benyellary or indeed anywhere else.  But consider also how the highly successful ‘operational culture’ of DP is now being seriously undermined and damaged by the ongoing ill advised, ill informed and wrong headed management actions of this year, seemingly yet another part of the determination to destroy that which has worked so well for so long. 

If the available research had been properly read and considered, as it should have been, if there had been the requested consultation before the ASSC closure decision, as there should have been and if subsequently there had been some humility and recognition that just perhaps mistakes had been made, then none of the highly negative consequences for all concerned would have happened.  All because Officers and many Members simply would not listen or find out the facts.  Here is what one of the cited researchers actually says in summary:

Conclusions  (Felce & Perry draft chapter per email 27/7/06 at 14:38)

The environmental determinants of outcome are incompletely understood. There is little evidence in relation to some areas (e.g., health, safety, income, skill development, and emotional or civic wellbeing) and, even where evidence does exist, it is not consistent. Moreover, even though the studies selected have merit in relation to isolating links between environmental arrangements and outcome, they are not without their methodological limitations. One general criticism would be that the selection of independent variables considered as potentially influencing outcome varies between studies. Those considered by any one study cannot be regarded as comprehensive, given this variability. This gives rise to the problem in comparative studies of different service models that setting differences described may be confounded with those that have not been described (actually confounding of variables exists to some extent even among those for which information is available, such as between service model and size of setting in both Howe et al., 1998 and Stancliffe & Keane, 2000).

In multivariate research, whether a variable remains in a predictive model depends on which other variables have been considered. For example, in one of our own studies of the influences on staff activity in community group homes (Felce, Lowe & Jones, 2002b), the final regression model for predicting resident receipt of attention changed after the data were reanalyzed following a referee’s suggestion that range in resident adaptive behavior should be included as an independent variable. Some of the variability in findings across studies documented above inevitably arises from the fact that investigators have considered different sets of potential environmental influences.

In this regard, it is, therefore, important that more attention is given to reaching an international consensus about the important variables to be described when doing research on residential support arrangements, so that relationships between environmental characteristics and outcome can be identified with greater confidence. It is understandable that evaluation in such a policy-related area as this should have highlighted administrative distinctions or variables commonly thought to be important. However, research in the post-deinstitutionalization era needs to become more sophisticated. The issue of the integrity of the independent variable is as important to this research endeavor as it is to intervention or treatment research. A more consistent approach to analyzing setting characteristics is required for further progress to be made.

Before summarizing existing knowledge, it is important to emphasize that the concern here was to address the determinants of outcome within community residential support arrangements, and not revisit the institution-community divide. The range of certain environmental variables is constrained by this focus. For example, in a particular study, the sizes of settings investigated might only vary between one and five. The fact that variation within this range might not be found to have a significant influence on outcome should not be interpreted as suggesting that greater size differences would be equally insignificant. So with due caution in mind, one can make the following broad conclusions from the existing literature about the features of community residential support arrangements important to outcome:

• While some studies found that certain outcomes were associated with setting size, its absence of influence in others suggests that it is not such a strong influence on quality of life as it is commonly regarded to be. Its strongest link appears to be with home-likeness and choice.
• Home-likeness and physical integration are desirable properties. Achieving these is likely to constrain setting size to groupings which can be accommodated within architecturally typical normatively located homes.
• Little is known about the characteristics of community neighborhoods, if any, which influence community acceptance and integration.
• Resource inputs (e.g., staff-to-resident ratios), while considered as potentially influential variables in many of the studies, were rarely found to be significant. The fact that improved outcome in a minority of studies was linked to both greater and less intensive staffing reinforces the conclusion that staff presence needs to be closely matched to the support needs of residents, and not seen as necessarily linked to quality of life. Those studies which considered the extent to which staff possessed formal qualifications as an influence on outcome either found no effect or a negative effect.
• The ‘operational culture’ of the setting has a significant influence on outcome, whether this is reflected in the orientation embraced by ‘supported living’, staff attitudes towards inclusion, social climate or individualization of approach, the focus and degree of organization of planning and other working methods, or the level of staff-resident interaction. Further research is required to identify desirable social and operational processes more precisely. A greater emphasis probably needs to be given by service providers to these aspects of support arrangements.

Support arrangements can have mixed beneficial and adverse effects. For example in the Emerson and Robertson set of studies, living in a supported living scheme (holding a tenancy) predicted greater choice and having a poorer diet. It is important to recognize that outcomes associated with a particular service model may not be universally superior to those associated with an alternative. Two implications follow. One is that providers may need to make particular efforts to set an organizational culture which compensates for a tendency towards poor outcome. In relation to the example above, effective encouragement of healthy living may need to be developed in situation where people have greater personal control. Second, consumer choice is important to match preferred lifestyle to the outcomes which alternative residential arrangements support. People differ in the quality of life that they want. Better information on the outcomes associated with particular support arrangements will help individuals to make more informed choices based on how they want to live.

 

On reading this from highly qualified research academics, note how very very misleadingly the research studies are quoted below by Ms Macpherson, perhaps all those Officers and Members concerned with decisions about Dunmuir Park might care to reflect with some degree of belated humility on what all the families and the friends of Dunmuir Park have been consistently saying and writing for the past six or more years?

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From: Emerson, Eric [mailto:eric.emerson@lancaster.ac.uk]
Sent: 27 July 2006 13:37
To: chris@greensnet.freeserve.co.uk; Hatton, Chris; mc1@st-andrews.ac.uk; Prof David Felce
Cc: Isabel Millar; Liz Craigmyle; Heather & Willie Bell; Prof C Cullen@keele.ac.uk; Clare Corrigan; Heather McKie; Ann Wilson; Scobie, William; Thomas Sloan; Mary Smith; Alasdair.Morgan.msp@scottish.parliament.uk; Alex Fergusson MSP; russell@brownmp.new.labour.org.uk
Subject: RE: Possible (ab)use of research findings when a Council seeks to justify and implement local policies

 

Dear Mr/Mrs Green

Thank you for your enquiry. It is, indeed, always interesting to see the ways in which evidence is ‘used’ in the context of health and social care policy.

To briefly respond to some of the points you raise.

1. We share your concern regarding the unequivocal nature of the conclusions drawn from the research that has been undertaken in this area. We never have, and never would, make such sweeping and absolute statements based on our research or the research undertaken by others.
2. The ‘research’ the authors of this note appear to be referring to is not a single study, but an extensive body of research undertaken by a range of research groups over a period of decades. We have recently summarised the international research in this area for the National Disability Authority in Ireland (http://www.nda.ie/) who will be publishing our report later this year. We are not at liberty to provide you with an advance a copy of this work as it is the property of the NDA. We would, however, encourage you to contact them to clarify when it will be publicly available. This report addresses many of your questions regarding design and measurement. You may also wish to look at a review available at  http://www.bris.ac.uk/depts/NorahFry/Strategy/papers.htm
3. We are not aware of any research that has systematically evaluated the comparative costs and benefits of single versus shared tenancies.

 

We hope this brief response will be of help.

Yours sincerely

Eric Emerson & Chris Hatton

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From: chris@greensnet.freeserve.co.uk [mailto:chris@greensnet.freeserve.co.uk]
Sent: 27 July 2006 12:37
To: Hatton, Chris; Emerson, Eric; mc1@st-andrews.ac.uk; Prof David Felce
Cc: Isabel Millar; Liz Craigmyle; Heather & Willie Bell; Prof C Cullen@keele.ac.uk; Clare Corrigan; Heather McKie; Ann Wilson; Scobie, William; Thomas Sloan; Mary Smith; Alasdair.Morgan.msp@scottish.parliament.uk; Alex Fergusson MSP; russell@brownmp.new.labour.org.uk
Subject: Possible (ab)use of research findings when a Council seeks to justify and implement local policies

 

Dear Dr Campbell; Prof Emerson; Prof Felce and Prof Hatton

This message is from:  Chris & Janet Green  and other families.

In Dumfries and Galloway a number of families with relatives with a wide range of ‘learning disabilities’ are trying to make sense of a local policy that is leading and encouraging both Officers and elected Members into a seemingly implacable determination to impose or force all individuals with learning disabilities into individual single tenancies, irrespective of their wishes or particular needs.  That is to be placed into small basic flats, even in situations where 24 hour care is required sometimes needing 2 carers at a time.  In order to justify this policy we now find your research is specifically cited and being used as a justification in internal briefing notes for a ‘one size fits all’ policy.  For example, released under FoI we have a ‘background’ or guidance note written and issued 6/4/2006 to D&G Council Officers by someone previously employed by D&G / NHS D&G, but now working for the Scottish Executive.  This note, which we copy directly, unequivocally states that:

Extensive research undertaken by Professor Eric Emerson and Chris Hatton (Lancaster University), David Felce (University of Wales) and by Martin Campbell (St Andrews University) has provided an evidence base that:

1. Conclusively shows that there are no instances where it is better for someone with a learning disability to be cared for in a long-stay residential or hospital setting – no matter how profoundly disabled that person is or how challenging their behaviour (even if in the community setting they do not appear to be very included in the local community).

2. Outcomes are most positive where people with a learning disability are housed in a single tenancy (our emphasis).  Even shared tenancies do not produce such strong outcomes

3. Having more staff on duty bears no relation to the quality of care or interaction with the individuals (the opposite tends to be true as staff will relate to each other, rather than the tenants, if there is more than one on duty).

4. The key factor in ensuring social inclusion is choice – and choice comes through money. Having access to benefits is actually what allows people to be socially included. Residents in care homes cannot access anything like the full range of benefits, tenants can.   6 April 2006

Unfortunately and rather unprofessionally your research is not cited with any proper references, so we are not able to source it.  Yet you are all quoted directly and without any qualification.  However, our experience of such social science research methodology causes us great concern and to question whether, and if so how, such all embracing firm unequivocal conclusions can be stated as true in all cases, with no caveats?  We have looked at other recent meta studies as published on the www but cannot find such absolute conclusions anywhere else.  However, the families do not profess to be academic experts, many simply living and caring 24/7, year in and year out. 

Nor do we understand what the “outcomes” are and how these have been objectively measured?  What is the sample size of your research?  What are the control samples?  How is the apparent generalisation to all those with ‘learning disabilities’ justified, or is this a case of the research not being properly understood, interpreted and quoted by those who are not actually fully qualified to do so?  Is the research referred to above a single collective and collaborative work or is it an amalgam of various studies and if so from what date and what populations?  In Castle Douglas we are not considering a large hospital setting, yet often this is confusingly implied.  Is your research in fact based upon large hospitals and their closure, rather than small homely shared settings, which are highly integrated within a small local and rural community and have been for more than 25 years?  Has your research examined the outcomes in such locations and if so where?  We really do need your assistance in clarifying all these points and no doubt many others that will occur to you as research experts.

One particular contradiction and question is, given what is claimed above, why did Enable Scotland find it necessary to establish EnableLink a few years ago, stating that their research had identified loneliness and social isolation & exclusion amongst those with learning disabilities living alone.  Hence their perceived need to set up ‘befriending arrangements’ to promote ‘inclusion’.  Not only does this support what families see and experience first hand ‘on the ground’, but is in line with the preferences to share and live with friends in small groups, which are freely expressed by individuals with learning disabilities.  Yet their voice is being ignored, because it seems of the power of your quoted research and the ideological perspectives it is being used to support.  Do you agree this is an appropriate and a proper use of your research, which seems to be saying that small care homes and supported shared small group living arrangements in a homely setting should all be closed down forthwith  in favour of being, “housed in a single tenancy”?   

We note that the Scottish statistics (SCLD) suggest that c25% of those with learning disabilities presently live alone, implying that ~75% do not.  If the research conclusion cited above is actually correct and is applied to the 75% then, as a matter of public policy, where will we find the necessary number of carers, given that we have problems of recruiting and retaining enough today?    

We are very concerned because such positive and assertive statements from “the professionals” strongly influence lay persons, like elected councillors, into agreeing and ‘rubber stamping’ policy and operational recommendations from Officers, who may have quite another agenda.  Councillors have said to us on many occasions, “we have to guided by the professionals” when asked to justify their decision.  Also we are concerned at the ideological and economic perspectives that might underlie policies determined by such officers, who perhaps may not really understand your research but are more than content to cite it in such a positive way to stand up what they say.  Indeed you will perhaps agree that it is very difficult for even research or work in the social science area to be completely ‘objective’ and not informed, however subtly by any number of prior influences.  Certainly it appears that your research is being cited by those who appear to hold a very particular ideological perspective that is seemingly closed to the possibility there might just be some equally valid alternatives. 

We appreciate that you are very busy, but this is a matter of public policy, which you are influencing by your work, and it is directly and adversely affecting the lives of very vulnerable people.  Hence we would very much welcome your individual comments on all of the above as soon as it is convenient for you to let us have a reply.  Many thanks for your time.

CJ & J Green and for other involved families. 

Note that Prof David Felse replied within 2 hours at 14:38 saying:

Dear Mr and Mrs Green

You are correct to think that the study of complex service arrangements, such as supported accommodation, will produce complex results. It is probably only in the area of comparing between traditional institutional provision and community-based provision where the evidence allows firm conclusion. I have numbered my comments 1-4 – to match the numbered list in your message.

1. There are a considerable number of studies from the UK and other developed countries which have compared service models (e.g., traditional institutions and community group homes; village communities and community group homes, supported living and group homes). There are also a growing number of studies which have explored the possible determinants of outcomes within community services. Comparison studies compare outcomes for groups, testing for difference between means or medians.  Therefore, these studies do not show that there are no instances where outcomes for an individual in long-stay residential or hospital setting was better than in supported community housing. Rather they provide strong evidence that a range of quality concerns (processes and outcomes) are generally better in community housing than traditional institutional settings. Based on a utilitarian argument of the greatest good for the greatest number, I do not think that the continued provision of traditional long-stay residential provision  (e.g., hospital care) is justified by the balance of evidence. Further than that is difficult to go. We need to find out much more about the factors which affect quality in different community-based service models (I have attached a copy of a draft chapter a colleague and I have prepared for a US book which you might find at least illustrates the complexity of the research agenda and how much more needs to be done).
2. The emphasis on a single tenancy is overstated. There is evidence to support the proposition that the number of people who are accommodated together has a negative impact on quality when ‘small’ settings are compared to ‘large’ (i.e., traditional residential provision and community group homes), but that simply repeats the conclusions of the comparative studies summarized in point 1 above. There is less strong evidence that group size has a strong, unequivocally positive, impact on process and outcome within the range spanned by typical community housing provision (e.g., 1-4). Within this range, group size has been found to be associated with outcomes in some studies and not in others. The strongest claim for a link is in relation to how like an ordinary home the setting is (homeliness), the breadth of people’s social networks and the degree of choice people exercise.  However, I know of no study which has systematically compared  living in a single tenancy to living in small groups (e.g., 2 or 3).
3. There are now a considerable number of studies which have not found a direct link between resource input and quality of outcomes. However, the interpretation of this in point 3 in your message is cavalier. In fact, there is reasonable evidence to suggest that increased staff-to-resident ratios may be associated with residents receiving more attention from staff (although this has not always been found). However, higher staff-to-resident ratios apparently do not predict a range of quality of life outcomes and may even inhibit some (e.g., exercise of choice, independent activity, participation in household tasks). (The reasons for this are likely to involve an interplay of factors – I could amplify. I would not subscribe to the view that the reason is that staff relate more to each other if more than one is on duty, although one of our studies does show that the most productive staff-to-resident contact and resident activity outcomes are associated with times when a single member of staff is working separately from other staff with an individual or small group of residents – but this could be in different rooms, it does not necessarily imply only having one staff on duty. Overall, one would expect staff input to be related to the degree of disability or support needs of residents. In practice, there is considerable variation in this.)
4. There is very little evidence about how to achieve social inclusion. Most studies emphasize the continuing relative social isolation of people with learning disabilities. Although the frequency with which people undertake community activities has been shown to be influenced by the nature of supported accommodation provided, this is not the case for breadth of social network or range and frequency of social engagements. I would not say that the key to social inclusion is choice or that choice only comes through money (there is some evidence that having more money available for discretionary spending is associated with exercising greater personal control). Holding a tenancy may influence access to benefits and thereby to disposable income. I am not a benefits expert and have not conducted research in this area.

This is another formal complaint that requires not only investigation but prompt action to correct the myths and misinformation promulgated by the experts.  Also the other issues and questions we raise should be investigated and answered.  Will this complaint be processed and dealt with according to the stated procedures, including action by the Scottish Executive from where apparently the misinformation emanates.

We all look forward to hearing shortly.   CJ & Green – DPPG

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