care.data programme questions remain unanswered – what should patients do now?

care.data programme questions remain unanswered [1] and opportunities to demonstrate better transparency have to date, been turned down.

For anyone interested in the care.data rollout, professionals, patients and public alike, it is worrying to see the continued secrecy which shrouds the programme. We’ve been told online (but most in the public will still not know) an initial rollout in 4 CCG areas is now planned [2], but at which GP practices remains unclear.

On October 12th I asked that the care.data programme board minutes should be made public. The request is still open.[3]

“They seem hell bent on going ahead. I know they listened, but what did they hear?”

Questions asked by hundreds of people at multiple listening events remain unpublished and unanswered. Risks need resolved.

It is ironic that for a programme whose stated aim is to gather patient information in order to answer open questions about care,  it is so unwilling to give information back to answer the questions we, the ‘data subjects’ have about the programme.

I believe it is important to ensure that the questions are transparent, criticisms addressed and clarified, open issues solved and questions answered ahead of the pathfinder rollout to ensure the greatest success of the programme.

If the programme proceeds on an opt out basis, the risk is increased that it will not meet Data Protection regulation[4], which requires informed use of personal data. This puts GPs at risk. [5]

All the people who made the effort to attend these events for the benefit of the programme and the public good deserve answers. This would minimise the risks the public raised, which remain unresolved.

It is also important for maintaining trust in the integrity and value of user participation and engagement at other NHS events, and in this programme in particular.

Public and Transparent Feedback was Promised

I wrote to Mr. Tim Kelsey, Director, at the Patients and Information Directorate, NHS England today to ask, once again, for the release of public feedback.

Now two months ago, when I spoke with him after the NHS AGM in London on September 18th about care.data, the public questions have still not been put into the public domain.

He agreed that the raw feedback from all the care.data listening events, which included all the open questions asked by participants, would be published, “Shortly.”

This feedback includes questions from the NHS Open Days on June 17th  (4 locations), the stand-alone care.data events since, and those from the care.data advisory sessions hosted in Peterborough and Coin Street, London [6].

NHS England claims there have been hundreds of events. The website says some took place in my county, though I haven’t heard of any and neither has my CCG. Those of which I am aware and six attended, all generated a huge number of participant questions on paper, post-its and electronically, which participants were told would be published and answered, including put on the Open Day website ‘later in the summer'[7]:

“Feedback from this session is being incorporated into the overall report from the care.data listening phase which will be published later in the summer and linked to from this site.”

This is still to happen, and now nearing the end of November, is somewhat overdue.

My own questions at four events were on process and I believe it is important to get these clarified BEFORE the pathfinder:

  • How will you communicate with Gillick competent children [8], whose records may contain information about which their parents are not aware? [note also RCGP online roadmap p.15][9]
  • How will you manage this for elderly or vulnerable patients in care homes and with diminished awareness or responsibility?
  • When things change in scope or use, how will we be informed of changing plans for use or users, on an ongoing basis? [Data protection principle 2] [10]
  • For any future changes, how will we be given the choice to change our opt out or opt in? Consent is not a one-time agreement  but needs managed on a continual, rolling basis – how will this be achieved?

Campaigners have also raised remaining, unresolved issues.

Key legal questions remain, including on Opt Out

I am starting to become concerned that the opt out is STILL not on a statutory footing. Will the Secretary of State make good his verbal agreement in law?

What legal changes will be made that back up the verbal guarantees given since February? If none are forthcoming, then were the statements made to Parliament untrue? [11]

“people should be able to opt out from having their anonymised data used for the purposes of scientific research.”

I am yet to see this legal change and to date, the only publicly stated choice is only for identifiable data [12], not all data, as stated by the Minister.

So too the promised extra governance on a legal basis has not yet happened.

It is worth a note that although the Health and Social Care Act 2012 may have steamrollered the legal position of the patient and GP, and that confidentiality no longer comes first, informed consent even if assumed, is still in other circumstances to be obtained fairly:

“Consent obtained under duress or on the basis of misleading information does not adequately satisfy the condition for processing.” [ICO]

Should this principle not also apply even if GPs are legally obliged to release data without patient consent? [I feel that needs more discussion, so will write about consent in my next post.]

There is much made of ‘new legal protection’ of our data but in fact it is impossible to see it provides any such thing, and yes, I have read it. The Care Act 2014 did not get amended with any binding or truly clear provisions to make data more confidential or secure.

Concerns of many people centre on commercial use, and re-use of data, and these are not addressed by the loose terms for the benefit of adult health and social care’ or the ‘promotion of health’. [part 4 p.120] Data sold all year may have met this criteria, but is this how we expect our health records to be used without our express permission?

“We will use Mosiac, appended to the ICD10 code diagnoses, to create national Mosaic profiles. These estimates and propensities will be sold to public and commercial organisations to enable them to target resources more effectively and efficiently…Other data characteristics that are also linked to Mosiac can then be used to understand broader lifestyle characteristics of those most at risk to ensure that messages and communications are appropriate and well targeted.” [July register]

Question from Leicester: “Are we saying there will be only clinical use of the data – no marketing, no insurance, no profit making? This is our data.”[13]

So I hope it is clear, that these concerns are not only mine, but remain unanswered for the broader participants of listening events, gathered throughout the last year.

Questions from others

I’m publishing here the filtered and NHS England written, summary response of the 26th June event [14], I received as an attendee. (40 people, of whom ca 10 NHS England and HSCIC staff).

I disagreed with one of the statements made at our table at the meeting, and pointed out it was not factual. History as I understand, and has been stated by HSCIC in FOIs, will not be deleted. Yet this was allowed to be included in the notes sent to all:

“communicate that identifiable information can be deleted.”

The workshop was about how to access ‘hard-to-reach’ groups, so focused on communications methods. You will see that many statements are about how to market the programme, and do not clarify questions of substance, although many were asked on the day about scope definition, and future data changes.

Questions have not yet been addressed, such as Gillick, on children in care, young offenders, the forces, avoiding ‘propaganda-ish’ sounding and bias in the materials, to ensure the ‘adequate requirements’ for data processing.

You can see from this, that although the listening events may be deemed to have been a success, the answering part is still missing.

How are NHS England measuring success? What does good look like? I guarantee from a public perspective, it’s not there yet.

Long term benefit must not be harmed in the rush for a pilot tick-box

Since the programme is heralded as so vital for the NHS, I believe we should not be making the best of a bad job, but shaping process, security and communications to be world class, worthy of our NHS.[15]

We also need to see a long-term cost benefit plan – if we don’t know how some of these future processes are to be managed, how will we know what they will cost, and are they worth it?

The project should not aim for a quick and dirty pilot rollout. Perhaps there is a need to tick the ‘on time’ box for an NHS England target or meet a job description appraisal, as I would have had when I was responsible for project implementations in my past commercial industry role?

As it stands it is not NHS England/DoH who has the most to lose if this goes ahead as is. They must look at the big picture and accept their responsibility for this project, decide not to rush it and not expect the public and GPs to carry its risk.

At the weekend, in a speech about TTIP I heard the phrase, it’s “a classic case of socialising the risk and privatising the profit.”

So too it feels for me on care.data. NHS England wants all the benefit of our information, including from its sale, but it is we, individual patients and GPs who will be harmed if its security, commercial use [16], or everyday trust & confidentiality are compromised.

The Department of Health must look beyond party political aims pre-election. This is for the good of the NHS, which belongs to us all.

We must see open questions on process and content openly answered, for professionals and public alike.

Only then, can we trust that the infrastructure and promises made behind the scenes have set the foundation for this scheme to be worthy of our most intimate and confidential data.[17]

What can Patients do now?

“The policy and practical answers we need to ensure success, will not fit on a flyer or SMS.”

I have spoken with some of my fellow attendees since these events, including for example Stan Burridge, the Research Lead on Service User Involvement at Pathway London. (A charity providing healthcare to the homeless and which works with others on policy and best-practice approach sharing. Their recent work on dentistry outreach achieved a 0% no-show rate – getting the vital care needed for their clients and saving ££ for NHS dentist provision.)

His comments are a good summary of what has happened since:

“In the events, opinions could be expressed, questions asked, and I was made to feel they were valid questions, but they’re doing very little to answer them so that it makes a difference.

“I feel I was engaged with the process, but it’s doing nothing for the people on the margins.

“They should be given an informed choice to opt in, an uninformed choice not to opt out is not the same.

It is unclear what patients can now do, to get the answers we have asked for. We want to make a positive difference to make the project better.

The listening events seem to have been a one way process, and participation for PR purposes, rather than real engagement. The policy and practical answers we need to ensure success, will not fit on a flyer or SMS. They can’t be communicated as part of the pilot rollout. We need them published, addressed and ironed out up front.

Stan summed up exactly what I feel and what I have heard from many others:

“They seem hell bent on going ahead. I know they listened, but what did they hear?”

 

****

[1] A patient’s open letter to NHS England

[2] CCG pathfinder announcement

[3] care.data programme board minutes and materials FOI

[4] ICO Guide to Data Protection

[5] Medical Protection and care.data concern

[6] Coin Street care.data advisory group public event, Sept 6th

[7] NHS England Open House event 17th June

[8] Gillick and data protection for children

[9] RCGP Online Roadmap, includes concern on accessing data by those at risk of domestic abuse and children

[10] ICO Data Protection guidelines

[11] Hansard, Parliament 25th February 2014

[12] Parliamentary briefing note on care.data

[13] Questions from the Open House, incl. Leicester

[14] NHS England summary of feedback and statements from public event at Mencap, June 26th 2014

[15] Post from July 21st HSCIC roadmap event, future data use

[16] Commercial use of data with brokers – call for consumer data transparency

[17] Code list prepared by medConfidential and open issues

On Being Human – moral and material values

The long running rumours of change afoot on human rights political policy were confirmed recently, and have been in the media and on my mind since.

Has human value become not just politically acceptable, but politically valuable?

Paul Bernal in his blog addressed the subject which has been on my mind, ‘Valuing the Human’ and explored the idea, ‘Many people seem to think that there isn’t any value in the human, just in certain kinds of human.’

Indeed, in recent months there appears to be the creation of a virtual commodity, making this concept of human value “not just politically acceptable, but politically valuable.” The concept of the commodity of human value, was starkly highlighted by Lord Freud’s recent comments, on human worth. How much a disabled person should earn was the focus of the remarks, but conflated the price of labour and human value.

European Rights undermined

Given the party policy announcements and the response by others in government or lack of it, it is therefore unsurprising that those familiar with human rights feel they will be undermined in the event that the policy proposals should ever take effect. As the nation gears up into full electioneering mode for May 2015, we have heard much after party speeches, about rights and responsibilities in our dealings with European partners, on what Europe contributes to, or takes away from our sovereignty in terms of UK law. There has been some inevitable back-slapping and generalisation in some quarters that everything ‘Europe’ is bad.

Whether or not our state remains politically within the EU may be up for debate, but our tectonic plates are not for turning. So I find it frustrating when politicians speak of or we hear of in the media, pulling out of Europe’ or similar.

This conflation of language is careless,  but I fear it is also dangerous in a time when the right wing fringe is taking mainstream votes and politicians in by-elections. Both here in the UK and in other European countries this year, far right groups have taken significant votes.

Poor language on what is ‘Europe’ colours our common understanding of what ‘Europe’ means, the nuances of the roles organisational bodies have, for example the differences between the European Court of Human Rights and the European Court of Justice, and their purposes are lost entirely.

The values imposed in the debate are therefore misaligned with the organisations’ duties, and all things ‘European’ and organisations  are tarred with the same ‘interfering’ brush and devalued.

Human Rights were not at their heart created by ‘Europe’ nor are they only some sort of treaty to be opted out from, [whilst many are enshrined in treaties and Acts which were, and are] but their values risk being conflated with the structures which support them.

“A withdrawal from the convention could jeopardise Britain’s membership of the EU, which is separate to the Council of Europe whose members are drawn from across the continent and include Russia and Ukraine. Membership of the Council of Europe is a requirement for EU member states.” [Guardian, October 3rd – in a clearly defined article]

The participation in the infrastructure of ‘Brussels’ however, is convenient to conflate with values; a loss of sovereignty, loss of autonomy, frivoulous legislation. Opting out of a convention should not mean changing our values. However it does seem the party attitude now on show, is seeking to withdraw from the convention. This would mean withdrawing the protections the structure offers. Would it mean withdrawing rights offered to all citizens equally as well?

Ethical values undermined

Although it varies culturally and with few exceptions, I think we do have in England a collective sense of what is fair, and how we wish to treat each others as human beings. Increasingly however, it feels as though through loose or abuse of language in political debate we may be giving ground on our ethics. We are being forced to bring the commodity of human value to the podium, and declare on which side we stand in party politics. In a time of austerity, there is a broad range of ideas how.

Welfare has become branded ‘benefits’. Migrant workers, ‘foreigners’ over here for ‘benefit tourism’. The disabled labeled ‘fit for work’ regardless of medical fact. It appears, increasingly in the UK, some citizens are being measured by their economic material value to contribute or take away from ‘the system’.

I’ve been struck by the contrast coming from 12 years abroad, to find England a place where the emphasis is on living to work, not working to live. If we’re not careful, we see our personal output in work as a measure of our value. Are humans to be measured only in terms of our output, by our productivity, by our ‘doing’ or by our intrinsic value as an individual life? Or simply by our ‘being’? If indeed we go along with the concept, that we are here to serve some sort of productive goal in society on an economic basis, our measurement of value of our ‘doing’, is measured on a material basis.

“We hear political speeches talking about ‘decent, hardworking people’ – which implies that there are some people who are not as valuable.”

I strongly agree with this in Paul’s blog. And as he does, disagree with its value statement.

Minority Rights undermined

There are minorities and segments of society whose voice is being either ignored, or actively quietened. Those on the outer edge of the umbrella ‘society’ offers us, in our collective living, are perhaps least easily afforded its protections. Travelers, those deemed to lack capacity, whether ill, old or young, single parents, or ‘foreign’ workers, to take just some examples.

I was told this week that the UK has achieved a  first. It was said, we are the first ‘first-world’ country under review by the CPRD for human rights abuse of the disabled. Which cannot be confirmed nor denied by the UN but a recent video indicated.

This is appalling in 21st century Britain.

Recently on Radio 4 news I heard of thousands of ESA claimants assigned to work, although their medical records clearly state they are long term unfit.

The group at risk highlighted on October 15th in the Lords, in debate on electoral records’ changes [col 206]  is women in refuges, women who feel at risk. As yet I still see nothing to assure me that measures have been taken to look after this group, here or for care.data.{*}

These are just simplified sample groups others have flagged at risk. I feel these groups’ basic rights are being ignored, because they can be for these minorities. Are they viewed as of less value than the majority of ‘decent, hardworking people’ perhaps, as having less economic worth to the state?

Politicians may say that any change will continue to offer assurances:
“We promote the values of individual human dignity, equal treatment and fairness as the foundations of a democratic society.”

But I simply don’t see it done fairly for all.

I see society being quite deliberately segmented into different population groups, weak and strong. Some groups need more looking after than others, and I am attentive when I hear of groups portrayed as burdens to society, the rest who are economically ‘productive’.

Indeed we seem to have reached a position in which the default position undermines the rights of the vulnerable, far from offering additional responsibilities to those who should protect them.

This stance features often in the media discussion and in political debate, on health and social care. DWP workfare, JSA, ‘bedroom tax’ to name but a few.


How undermining Rights undermines access

So, as the NHS England five year forward plan was announced recently, I wonder how the plan for the NHS and the visions for the coming 5 year parliamentary terms will soon align?

There is a lot of talking about plans, but more important is what happens as a result not of what we say, but of what we do, or don’t do. Not only for future, but what is already, today.

Politically, socially and economically we do not exist in silos. So too, our human rights which overlap in these areas, should be considered together.

Recent years has seen a steady reduction of rights to access for the most vulnerable in society. Access to a lawyer or judicial review has been made more difficult through charging for it.  The Ministry of Justice is currently pushing for, but losing it seems their quest in the Lords, for changes to the judicial review law.

If you are a working-age council or housing association tenant, the council limits your housing benefit claim if it decides you have ‘spare’ bedrooms. Changes have hit the disabled and their families hardest. These segments of the population are being denied or given reduced access to health, social and legal support.

Ethical Values need Championed

Whilst it appears the state increasingly measures everything in economic value, I believe the public must not lose sight of our ethical values, and continue to challenge and champion their importance.

How we manage our ethics today is shaping our children. What do we want their future to be like? It will also be our old age. Will we by then be measured by our success in achievement, by what we ‘do’, by what we financially achieved in life, by our health, or by who we each are? Or more intrinsically, values judged even, based on our DNA?

Will it ever be decided by dint of our genes, what level of education we can access?

Old age brings its own challenges of care and health, and we are an aging population. Changes today are sometimes packaged as shaping our healthcare fit for the 21st century.

I’d suggest that current changes in medical research and the drivers behind parts of the NHS 5YP vision will shape society well beyond that.

What restrictions do we place on value and how are moral and material values to play out together? Are they compatible or in competition?

Because there is another human right we should remember in healthcare, that of striving to benefit from scientific improvement.

This is an area in which the rights of the vulnerable and the responsibilities to uphold them must be clearer than clear. 

In research if Rights are undermined, it may impact Responsibilities for research

I would like to understand how the boundary is set of science and technology and who sets them on what value basis in ethics committees and more. How does it control or support the decision making processes which runs in the background of NHS England which has shaped this coming 5 year policy?

It appears there are many decisions on rare disease, on commissioning,  for example, which despite their terms of reference, see limited or no public minutes, which hinders a transparency of their decision making.

The PSSAG has nothing at all. Yet they advise on strategy and hugely significant parts of the NHS budget.

Already we see fundamental changes of approach which appear to have economic rather than ethical reasons behind them. This in stem-cell banking, is a significant shift for the state away from the absolute belief in the non-commercialisation of human tissue, and yet little public debate has been encouraged.

There is a concerted effort from research bodies, and from those responsible for our phenotype data {*}, to undermine the coming-in-2015, stronger, European data protection and regulation, with attempt to amend EU legislation in line with [less stringent] UK policy. Policy which is questioned by data experts on the use of pseudonymisation for example.

How will striving to benefit from scientific improvement overlap with material values of ‘economic function’ is clear when we hear often that UK Life Sciences are the jewel in the crown of the UK economy? Less spoken of, is how this function overlaps with our moral values.

“We’ve got to change the way we innovate, the way that we collaborate, and the way that we open up the NHS.” [David Cameron, 2011]

Deregulation – the UK Bill and the Titanic TTIP

The Deregulation Bill will go to the Lords Committee stage on 6th November. [For ongoing progress, see here.]

Deregulation Bill

 [graphic added Nov 21st: This was the concluding statement by Lord Tunnicliffe on November 20th.]

I write this in follow up to a previous post of because it’s a big bill with one very important little clause, amongst much detail which needs careful review in the public interest:

What is it? Clause 83: Exercise of regulatory functions, economic growth:

(1) A person exercising a regulatory function to which this section applies must,  in the exercise of the function, have regard to the desirability of promoting  economic growth.

(2) In performing the duty under subsection (1), the person must, in particular,  consider the importance for the promotion of economic growth of exercising  the regulatory function in a way which ensures that—

(a) regulatory action is taken only when it is needed,

and

(b) any action taken is proportionate.

This section of the Deregulation Act which is currently passing through Parliament, suggests the removal of any regulation that conflicts with the interests of a profit-maker.

 

There are domestic and regulatory bodies for which we should carefully consider this implication.

The Deregulation Bill surely creates an ethical conflict or at least challenge, when in law it must consider commercial gain on a statutory footing above other factors?

The clause is openly worded, that regulatory action should be taken only when it is needed and that any action taken should be ‘proportionate’.

That suggests that regulatory interventions should be reduced. Who and how will it be decided when and what is proportionate?

The Bill provides that a person exercising a regulatory function specified by the Minister:

In detail, what does that mean? If it’s not important why include it at all? If it is important, why have we heard so little about it?

That Lord Tunnicliffe would make such a forceful statement should not be taken lightly: …”if our fears comes to pass, these three clauses could wreak havoc in a regulatory regime within this country.”

Which bodies will this affect?

Functions to which section 83 applies:

There is a long list of regulatory organisations at the end of this post.
Click on the organisation’s name below to read about each one.

The implications for them are unclear but should be examined for public bodies whose function today is not for profit.

For one area in particular, and close to my heart, we should understand its impact on  regulation of the NHS; Monitor and CQC, the MHRA and HFEA (Fertility and Embryology) and how about the Human Tissue Authority? A body whose purpose is to:

“manage the interests of the public and those we regulate at the centre of our work. It aims to maintain confidence by ensuring that human tissue is used safely and ethically, and with proper consent.” [Ref: HTA]

It is unclear how this profit aim will be helpful for these bodies in healthcare, especially considering some of the issues in state social care .

A different body where others share a concern about the impact of clause 83 is for the EHRC.

 

The Joint Committee Reported on Human Rights, June 14th 2014 has concerns about the impact of this, listed in this report:

The Government intends this economic growth duty to apply to the EHRC. We believe that applying this growth duty to the EHRC poses a significant risk to the EHRC’s independence, and therefore to its compliance with the Paris Principles and the Equal Treatment Directives as implemented by the Equality Act 2010. The Government is therefore risking the possibility of the EHRC’s accredited “A” status being downgraded and of putting the UK in breach of its obligations under EU equality law. Unless the continuing discussions between the Government and the Commission satisfy the Commission that the growth duty will not in any way impact upon its independence, we recommend that this duty not be applied to the EHRC.

[Nov 21st update: this clause was specifically debated >  see Column GC229 < and whilst verbal assurances were made, it appears nothing has changed in the Bill, and that the EHRC said in response:

“While we welcome this undertaking we understand that this doesn’t mean that we’ll be removed on the face of the Bill”.

So what value the assurances from  the Minister who will have left his post long before the Bill may be in effect?]

A large number of organisations play a part in securing compliance with the law. They include national regulators, local authorities, and bodies independent of Government, some of which have statutory regulatory functions.  The list below of the main national regulators is not exhaustive, but long. Clause 83 will have a very wide reach.

We should understand just how wide ranging this apparently small function in the Bill may turn out to be.

I believe this clause will serve to mop up the real or imagined economic leakage that the government seeks to collect from all these bodies. Resources that are as yet, untapped.

How will these regulatory bodies promote economic growth?

I wonder how, in the best public interest at all times, economic interest should come first in bodies responsible for oversight?

Will they be compelled to consider [further] cost cutting, selling assets, or charging for services?  Or how about entering into commercial partnerships?

Will the Drinking Water Inspectorate under DEFRA stay entirely independent?

What about the Gambling Commission – in its remit is ‘to protect children and vulnerable people from being harmed or exploited by gambling’?

How will the Office for Nuclear Regulation (ONR) hope to promote economic growth? Or the Forestry commission?

The consequences of such widespread promotion of deregulation and the requirement to actively promote profit seems ill-thought through and given little public attention.

Could it be that under austerity, and desperate to squeeze every drop of monetary gain from our state bodies, that this clause will open the gateway to increased fees, or the start of fees for some current non-charging access by the public to services?

Or will they be encouraged as schools were once, to sell off land and assets? Many of these bodies hold little land. The assets they both produce and hold, is data. It is clear from current practice and the direction of travel across government departments, that information is seen as a commodity and an untapped resource for sale. Perhaps this is an area each body will look at selling?

What about authorities which charge the public fees for services or could do so – the CAA for airspace regulation, the DVLA or the ICO? Will we see an increase in service charges – it is perhaps almost inevitable if the desirability  to promote economic growth is to be given statutory footing.

In addition to looking at what may actively promote commercial growth by direct sale or raising fees, rather than imaginary direct marketing concepts, in order to promote economic growth, will we simply find it more likely that indirect growth is encouraged through change in regulatory practices?

Most importantly perhaps, will we see regulations slackened which cost money to oversee?

Will the organisations which are to be regulated, permitted to do more which promotes commercial interest over other policies, or ethics?

I wonder if a future state aims to deregulate the market in almost every field of activity to enable profits for private commercial businesses, and if the intent is not desirable economic growth for the state directly, but indirectly?

If so, will the ideology that once deregulated, somehow private business interests will contribute more to the economy than they do today, be realised in practice? How has the deregulation of trains, postal services, water and utilities benefited the public interest over economic growth?

If the benefit is to be state economic growth,  whether through revenue direct or indirect, and whether or not it is achieved in the way it may be hoped, there will be other consequences.

Have we learned lessons from other areas in which oversight of regulation has been slackened in recent times, such as banking?

What happened since Banking was deregulated?

Anyone who can look back at the deregulation of the financial markets and say it was all, without any doubt a good thing, should say subprime mortgage deregulation and wash their mouth out.

“Regulation did not keep pace and became mismatched with the risks building in the economy. The Financial Crisis Inquiry Commission (FCIC) tasked with investigating the causes of the crisis reported in January 2011 that: “We had a 21st-century financial system with 19th-century safeguards.” [FCIC report]

“It found widespread failures in financial regulation; dramatic breakdowns in corporate governance; excessive borrowing and risk-taking by households and Wall Street; policy makers who were ill prepared for the crisis; and systemic breaches in accountability and ethics at all levels.” **[FCIC]

In summary,  has any cost risk benefit analysis has been done on the impact of what this widespread cross-market promotion of deregulation and the desirability of economic growth in a regulatory function will mean?

Why may this be seen as a desirable course of action?

Deregulation is tacking its way to its destination through the Lords in the UK. Whether it will reach it before the end of this parliamentary term is perhaps unclear.  But let’s not forget deregulation is the course on which we are set globally, at full steam ahead.

This UK Bill is simply a sponge on the deck of the Titanic of deregulation, the TTIP.

The purpose of the Transatlantic Trade and Investment Partnership is to remove the regulatory differences between the US and European nations. Its plan to cross the Atlantic at break neck speed has been somewhat slowed. But its purpose remains steadfast. There are effectively no tariff restrictions in place any more, so the barriers left to lift are those of regulatory intervention:

“The US and the European commission, both of which have been captured by the corporations they are supposed to regulate, are pressing for investor-state dispute resolution to be included in the agreement.” [The Guardian, Nov 4 2014]

This peer-reviewed  paper looks at the imagined trade and its consequences, “leaving the investment component of TTIP on the sidelines. Going forward, valuable insights could be drawn by further extending the analysis of TTIP’s financial effects.”

[Update Nov 13, letter today in the FT: quotes the same research paper and notes, “Even the most vocal proponents of free trade admit that there’s nothing irrational about opposing such big issues of public policy being traded off behind closed doors.” Nick Dearden, Director, World Development Movement]

Whilst much is made, with some confusion, around the potential for impact on the NHS, TTIP is indisputably very real for the rest of industry and wider market. And any deregulation as a whole touches many NHS bodies.

Despite wide professional and public criticism the TTIP discussions continue with little transparency. Deregulation appears to have become the UK government’s mantra for achieving economic growth, though in coalition not everyone may agree it is right.

In conclusion:

There should be detailed analysis and an impact assessment made for this Deregulation Bill clause 83 as it stands alone.

It must also be seen in conjunction with proposals for deregulation under TTIP,  and the impact analysed for the vast number of regulatory bodies and functions we have under the State wing, for the public good.

I sincerely hope our legislators in the Lords are taking this into account and not as a stand-alone Bill, but in the wider picture of current TTIP trade negotiations, and that the failures created in part through deregulation twenty years ago in banking, are not recycled now across the board.

Can society afford “dramatic breakdowns in governance, risk taking, learning by mistakes, or systemic breaches in accountability and ethics?” ** as we saw as a consequence in banking?

Oversight serves an important purpose.

It is often to ensure a balance between the needs of people, and search for profit. Whilst it is an accepted practice in our market economy, to seek to  make a profit,  oversight and regulation can ensure it’s not at the expense of the greater good.

Some of these public services that the regulatory bodies oversee in England will be harmed if they are not free to all at the point of their delivery. The independence of their ethical decision making will be challenged if it competes with promoting economic growth.

Who will help the public understand what this Deregulation Bill clause really will mean and complete proper and transparent public analysis of its impact for each regulatory authority?

I hope that those responsible for scrutiny of the Bill see value in maintaining first and foremost, independent oversight and ethics, in the Public Interest.

Or will the band continue to play as TTIP sails on? And will the Deregulation Bill pass as is, to promote the desirability of economic growth at all costs?

———

[Update November 21st:

Significant concerns raised in yesterday’s discussion by Lord Tunnicliffe and others on this Clause 83: The promotion of Economic Growth for Regulatory Bodies.

Social Care:
On a previous day of debate (Nov 18th) it appears regulation of Social Care staff is to be scrapped without proper consultation or scrutiny, in Clause 71.

Column GC116: “This is despite the fact that there was no clear support for removing regulation in the original consultation responses.

“The Government did not consult on this issue as part of the consultation in April 2014 on extending outsourcing in children’s social work. During the debate in Committee in the House of Commons on whether the clause should stand part of the Bill, the Deputy Leader of the Commons, Tom Brake MP, acknowledged that there had been no clear support for removing the registration requirement.”

“The Office of the Children’s Commissioner for England raised concerns and stated: “We consider all delegated social care services should be required to have formal registration with Ofsted in addition to an expectation that they will be held to account by rigorous and expert inspection, just as local authorities currently are”.

Scrutiny and Bill quality and clarity:
In particular concerns are raised in the Lords on lack of proper documentation and new legislation included which has not had scrutiny by the HoC or Scrutiny Committee.

Column GC142 “it is inefficient for Parliament to try to scrutinise line by line material which is obscure and possibly not very well expressed in terms of the material we are given and the notes.”
“One is that without a Keeling schedule relating to the particularities of the Bills being amended, it is almost impossible to work out what they are.”

Column GC144 “… that we are discussing now was not discussed in the Commons. It was not discussed by the Pre-Legislative Scrutiny Committee, as we have heard, and there has been no real opportunity to call those who drafted it to account. A blow for better government.”

Lord Tunnicliffe concluded on November 20th:

“We are all on the same side, but if our fears comes to pass, these three clauses could wreak havoc in a regulatory regime within this country that, generally speaking, is doing pretty well.” [Hansard]

My concerns seem founded, supported by many of these comments in recent debate in the Lords. I feel this Bill is a disaster lying in the future path of the Public Interest.  “Iceberg, right ahead!”

End Nov 21st update.]

Please feel free to comment below or find me on twitter @TheABB

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List of The National Regulators

Animal Health and Veterinary Laboratories Agency (AHVLA)

Animals in Science Regulation Unit

Architects Registration Board (ARB)

British Hallmarking Council (BHC)

Care Quality Commission (CQC)

Charity Commission for England and Wales

Civil Aviation Authority (CAA)

Claims Management Regulation Unit

Coal Authority

Companies House

Competition Commission

Professional Standards for Health and Social Care (PSA)

Disclosure and Barring Service (DBS)

Drinking Water Inspectorate (DWI)

Driver and Vehicle Licensing Agency (DVLA)

Driving Standards Agency (DSA)

Employment Agency Standards Inspectorate (EAS)

English Heritage (EH)

Environment Agency

Equality and Human Rights Commission

Financial Reporting Council (FRC)

Fish Health Inspectorate (FHI), Centre for Environment, Fisheries and Aquaculture Science (Cefas)

Food and environment research agency (plant and bee health) and (Plant Variety and Seeds)

Food Standards Agency (FSA)

Forestry Commission

Gambling Commission

Gangmasters Licensing Authority (GLA)

Health and Safety Executive (HSE)

Higher Education Funding Council for England (HEFCE)

Highways Agency (HA)

HM Revenue and Customs (Money Laundering Regulations and National Minimum Wage)

Homes & Communities Agency (HCA)

Human Fertilisation and Embryology Association (HFEA)

Human Tissue Authority (HTA)

Information Commissioner’s Office (ICO)

Insolvency Service including Insolvency Practitioner Unit

Intellectual Property Office (IPO)

Legal Services Board (LSB)

Marine Management Organisaton (MMO)

Maritime and Coastguard Agency (MCA)

Medicines and Healthcare Products Regulatory Agency (MHRA)

Monitor

National Measurement Office (NMO)

Natural England

Office of Communications

Office for Fair Access (OFFA)

Office for Nuclear Regulation (ONR)

Office for Standards in Education, Children’s Services and Skills (OFSTED)

Office of Fair Trading

OFQUAL

Office of Rail Regulation (ORR)

Office of the Regulator of Community Interest Companies

OFGEM

Pensions Regulator

Rural Payments Agency (RPA)

Security Industry Authority (SIA)

Senior Traffic Commissioner

Sports Grounds Safety Authority (SGSA)

Trinity House Lighthouse Service (THLS)

UK Anti-Doping (UKAD)

Vehicle and Operator Services Agency (VOSA)

Vehicle Certification Agency (VCA)

Veterinary Medicines Directorate (VMD)

Water Services Regulation Authority (OFWAT)