Monthly Archives: October 2014

#caredata, activism, care.data, choice, engagement, family, HSCIC, leadership, leaflet, privacy

Patient questions on care.data – an open letter

Dear NHS England Patients & Information Directorate,

We’ve been very patient patients in the care.data pause. Please can we have some answers now?

I would like to call for greater transparency and openness about the promises made to the public, project processes & policies and your care.data communication plans.

In 2013, in the Health Service Journal Mr. Kelsey wrote:

“When patients are ignored, they are most at risk; that was the central conclusion of the report by Robert Francis into Stafford hospital.

Don Berwick, in his safety review, said the NHS should be “engaging, empowering and hearing patients and their carers all the time.

“That has been my mission since I started as National Director for Patients and Information: to support health and care services transform transparency and participation.“

HSJ, 10th December 2013

It is time to walk-the-talk for care.data under this banner of transparency, participation and open government.

Response to the Listening exercises

The care.data listening phase, introduced by the pause announced on February 18th, has captured a mass of questions, the majority of which still remain unaddressed.

At one of these sessions, [the 1-hr session on June 17th Open House, linking ca. 100 people at each of the locations in Basingstoke, Leicester, London, and York] participants were promised that our feedback would be shared with us later in the summer, and posted online. After the NHS AGM on Sept 18th I was told it would happen ‘soon’. It is still not in the public domain.

At every meeting all the unanswered questions, on post-it notes, in table-group minutes or scribbled flipcharts, were gathered ‘to be answered at a later date’. When will that be?

To date, there has been no published information which addresses the unanswered event questions.

Transparency of Process, Policies and Approach

The care.data Programme Board has held meetings to plan the rollout process, policies and approach. The minutes and materials from which have not been published. I find this astonishing when one considers that the minutes of the care.data advisory group, NIB (new), CAG, GPES advisory or even NHS England Board itself are in the public domain. I believe the care.data Programme Board meeting materials should be too.

It was acknowledged through the Partridge Review of past use of our hospital records that this HES data is not anonymous. The extent of its sale to commercial third-parties and use by police and the Home Office was revealed. This is our medical data we gave to hospitals and in our wider medical use for our care. Why are we the last to hear it’s being accessed by all sorts of people who are not at all involved in our clinical care?

Even for commissioning purposes it is unclear how these datasharing reasons are justified when the Caldicott Review said extracting identifiable data for risk stratification or commissioning could not be assumed under some sort of ‘consent deal’?

“The Review Panel found that commissioners do not need dispensation from confidentiality, human rights and data protection law…” [The Information Governance review, ch7]

The 251 approval just got extended *again* – until 30th April 2015. If you can’t legally extract data without repeat approvals from on high, then maybe it’s time to question why?

The DoH, NHS England Patients and Information Directorate, HSCIC, and indeed many data recipients, all appear to have normalised an approach that for many is still a shock. The state centralised and passed on our medical records to others without our knowledge or permission. For years. With financial exchange. 

Amazingly, it continues to be released in this way today, still without our consent or fair processing or publicised way to opt out.

“To earn the public’s trust in future we must be able to show that our controls are meticulous, fool-proof and solid as a rock.”  said Sir Nick Partridge in his summary review.

Now you ask us to trust in care.data that the GP data, a degree more personal, will be used properly.

Yet you ask us to do this without significant changes in legislation to safeguard tightly defined purposes who can access it and why, how we control what future changes may be made without our knowledge and without a legally guaranteed opt out.

There is no information about what social care dataset is to be included in future, so how can we know what care.data scope even is yet?

Transparency cannot be a convenient watch word which applies with caveats. Quid pro quo, you want our data under an assumed consent process, then guarantee a genuinely informed public.

You can’t tell patients one approach now, then plan to change what will be said after the pilot is complete, knowingly planning a wider scope to include musculoskeletal or social care data and more.  Or knowing you plan to broaden users of data [like research and health intelligence currently under discussion at IAG ] but only communicate a smaller version in the pilot. That is like cheating on a diet. You can’t say and do one thing in public, then have your cake and eat it later when no one is looking. It still counts.

In these processes, policies and approach, I don’t feel my trust can be won back with lack of openness and transparency. I don’t yet see a system which is, ‘meticulous, fool-proof or solid as a rock’.

‘Pathfinder’ pilots

Most recently you have announced that four areas of CCGs will pilot the ‘pathfinder’ stage in the rollout of phase one. But where and when remains a  mystery. Pathfinder communications methods may vary from place to place and trial what works and what fails. One commendable method will be a written letter.

However even given that individual notice intent, we cannot ignore that many remaining questions will be hard to address in a leaflet or letter. They certainly won’t fit into an SMS text.

Why pilot communications at all which will leave the same open questions unanswered you already know, but have not answered?

For example, let’s get a few of the missing processes clarified up front:

  • How will you communicate with Gillick competent children, whose records may contain information about which their parents are not aware?
  • How will you manage this for elderly or vulnerable patients in care homes and with diminished awareness or responsibility?
  • What of  the vulnerable at risk of domestic abuse and coercion?
  • When things change in scope or use, how will we be given the choice to change our opt out decision?

I ask you not to ignore the processes which remain open. They need addressed BEFORE the pilot, unless you want people to opt out on the basis of their uncertainty and confusion.

What you do now, will set the model expectations for future communications. Patient online. Personalised medicine. If NHS health and social care is to become all about the individual, will you address all individuals equally or is reaching some less important than others?

It seems there is time and effort in talking to other professionals about big data, but not to us, whose data it is. Dear Patients & Information Directorate, you need to be talking to us, before to others about how to use us.

In March, this twelve point plan made some sensible suggestions.

Many of them remain unaddressed. You could start there. But in addition it must be clear before getting into communications tools, what is it that the pathfinders are actually piloting?

You can’t pilot communications without clearly defined contents to talk about.

Questions of substance need answers, the ten below to start with.

What determines that patients understand the programme and are genuinely informed, and how will it be measured?

Is it assumed that pilots will proceed to extraction? Or will the fair processing efforts be evaluated first and the effort vs cost be taken into account whether it is worth proceeding at all?

Given the cost involved, and legal data protection requirements, surely the latter? But the pathfinder action plan conflates the two.

Citizen engagement

Let’s see this as an opportunity to get care.data right, for us, the patients. After all, you and the rest of the NHS England Board were keen to tell us at the NHS AGM on September 18th, how valuable citizen engagement is, and to affirm that the NHS belongs to us all.

How valued is our engagement in reality, if it is ignored? How will involvement continue to be promoted in NHS Citizen and other platforms, if it is seen to be ineffective? How might this negatively affect future programmes and our willingness to get involved in clinical research if we don’t trust this basic programme today?

This is too important to get wrong. It confuses people and causes concern. It put trust and confidence in jeopardy. Not just for now, but for other future projects. care.data risks polluting across data borders, even to beyond health:

“The care.data story is a warning for us all. It is far better if the industry can be early on writing standards and protocols to protect privacy now rather than later on down the track,” he said. [David Willets, on 5G]

So please, don’t keep the feedback and this information to internal departments.

We are told it is vital to the future of our NHS. It’s our personal information.  And both belong to us.

During one Health Select Committee hearing, Mr. Kelsey claimed: “If 90 per cent opt out [of care.data], we won’t have an NHS.”

The BMA ARM voted in June for an opt in model.

ICO has ruled that an opt in model by default at practice level with due procedures for patient notification will satisfy both legal requirements and protect GPs in their role as custodians of confidentiality and data controllers. Patient Concern has called for GPs to follow that local choice opt in model.

I want to understand why he feels what the risk is, to the NHS and examine its evidence base. It’s our NHS and if it is going to fail without care.data and the Board let it come to this, then we must ask why. And we can together do something to fix it. There was a list of pre-conditions he stated at those meetings would be needed before any launch, which the public is yet to see met. Answering this question should be part of that.

It can’t afford to fail, but how do we measure at what cost?

I was one of many, including much more importantly the GPES Advisory Group, who flagged the shortcomings of the patient leaflet in October 2013, which failed to be a worthwhile communications process in January. I flagged it with comms teams, my MP, the DoH.

[Sept 2013 GPES Advisory] “The Group also had major concerns about the process for making most patients aware of the contents of the leaflets before data extraction for care.data commenced”.

No one listened. No action was taken. It went ahead as planned. It cost public money, and more importantly, public trust.

In the words of Lord Darzi,

“With more adroit handling, this is a row that might have been avoided.”

Now there is still a chance to listen and to act. This programme can’t afford to pilot another mistake. I’m sure you know this, but it would appear that with the CCG announcement, the intent is to proceed to pilot soon.  Ready or not.

If the programme is so vital to the NHS future, then let’s stop and get it right. If it’s not going to get the participation levels needed, then is it worth the cost? What are the risks and benefits of pressing ahead or at what point do we call a halt? Would it be wise to focus first on improving the quality and correct procedures around the data you already have – before increasing the volume of data you think you need? Where is the added intelligence, in adding just more information?

Is there any due diligence, a cost benefit analysis for care.data?

Suggestions

Scrap the ‘soon’ timetable. But tell us how long you need.

The complete raw feedback from all these care.data events should be made public, to ensure all the questions and concerns are debated and answers found BEFORE any pilot.

The care.data programme board minutes papers and all the planning and due diligence should be published and open to scrutiny, as any other project spending public funds should be.

A public plan of how the pathfinders fit into the big picture and timeline of future changes and content would remove the lingering uncertainty of the public and GPs: what is going on and when will I be affected?

The NHS 5 year forward view was quite clear; our purse strings have been pulled tight. The NHS belongs to all of us. And so we should say, care.data  can’t proceed at any and at all costs. It needs to be ‘meticulous, fool-proof and solid as a rock’.

We’ve been patient patients. We should now expect the respect and response, that deserves.

Thank you for your consideration.

Yours sincerely.

 

Addendum: Sample of ten significant questions still outstanding

1. Scope: What is care.data? Scope content is shifting. and requests for scope purposes are changing already, from commissioning only to now include research and health intelligence. How will we patients know what we sign up to today, stays the purposes to which data may be used tomorrow?

2. Scope changes fair processing: We cannot sign up to one thing today, and find it has become something else entirely tomorrow without our knowledge. How will we be notified of any changes in what is to be extracted or change in how what has been extracted is to be used in future – a change notification plan?

3. Purposes clarity: Who will use which parts of our medical data for what? a: Clinical care vs secondary uses:

Given the widespread confusion – demonstrated on radio and in press after the pathfinders’ announcement – between care.data  which is for ‘secondary use’ only, i.e. purposes other than the direct care of the patient – and the Summary Care Record (SCR) for direct care in medical settings, how will uses be made very clear to patients and how it will affect our existing consent settings?

3. Purposes definition: Who will use which parts of our medical data for what?  b) Commercial use  It is claimed the Care Act will rule out “solely commercial”purposes, but how when what remains is a broad definition open to interpretation? Will “the promotion of health” still permit uses such as marketing? Will HSCIC give its own interpretation, it is after all, the fact it operates within the law which prescribes what it should promote and permit.

3. Purposes exclusion: Who will use which parts of our medical data for what?  c) Commercial re-use by third parties: When will the new contracts and agreements be in place? Drafts on the HSCIC website still appear to permit commercial re-use and make no mention of changes or revoking licenses for intermediaries.

4a. Opt out: It is said that patients who opt out will have this choice respected by the Health and Social Care Information Centre (i.e. no data will be extracted from their GP record) according to the Secretary of State for Health  [col 147] – but when will the opt out – currently no more than a spoken promise – be put on a statutory basis? There seem to be no plans whatsoever for this.

Further wider consents: how patients will know what they have opted into or out from is currently almost impossible. We have the Summary Care Record, Proactive care in some local areas, different clinical GP systems, the Electronic Prescription Service and soon to be Patient Online, all using different opt in methods of asking and maintaining data and consent, means patients are unsurprisingly confused.

4b. Opt out: At what point do you determine that levels of participation are worth the investment and of value? If parts of the population are not represented, how will it be taken into account and remain valuable to have some data? What will be statistically significant?

5. Legislation around security: The Care Act 2014 is supposed to bring in new legislation for our data protection. But there are no changes to date as far as I can see – what happened to the much discussed in Parliament, one strike and out. Is any change still planned? If so, how has this been finalised and with what wording, will it be open to Parliamentary scrutiny?  The Government claim to have added legal protection is meaningless until the new Care Act Regulations are put in front of Parliament and agreed.

6. What of the Governance changes discussed?

There was some additional governance and oversight promised, but to date no public communication of changes to the data management groups through the HRA CAG or DAAG and no sight of the patient involvement promised.

The Data Guardian role remains without the legal weight that the importance of its position should command. It has been said this will be granted ‘at the earliest opportunity.’ Many seem to have come and gone.

7. Data security: The planned secure data facility (‘safe setting’) at HSCIC to hold linked GP and hospital data is not yet built for expanded volume of data and users expected according to Ciaran Devane at the 6th September event. When will it be ready for the scale of care.data?

Systems and processes on this scale need security designed, that scales up to match in size with the data and its use.

Will you proceed with a pilot which uses a different facility and procedures from the future plan? Or worse still, with extracting data into a setting you know is less secure than it should be?

8. Future content sharing: Where will NHS patients’ individual-level data go in the longer term? The current documentation says ‘in wave 1’ or phase one, which would indicate a future change is left open, and indicated identifiable ‘red’ data is to be shared in future?  “care.data will provide the longer term visions as well as […] the replacement for SUS.”

9.  Current communications:

    • How will GPs and patients in ‘pathfinder’ practices be contacted?
    • Will every patient be written to directly with a consent form?
    • What will patients who opted out earlier this year be told if things have changed since then?
    • How will NHS England contact those who have retired or moved abroad recently or temporarily, still with active GP records?
    • How will foreign pupils’ parents be informed abroad and rights respected?
    • How does opt out work for sealed envelopes?
    • All the minorities with language needs or accessibility needs – how will you cater for foreign language, dialect or disability?
    • The homeless, the nomadic,  children-in-care
    • How can we separate these uses clearly from clinical care in the public’s mind to achieve a genuinely informed opinion?
    • How will genuine mistakes in records be deleted – wrong data on wrong record, especially if we only get Patient Online access second and then spot mistakes?
    • How long will data be retained for so that it is relevant and not excessive – Data Protection principle 3?
    • How will the communications cater for both GP records and HES plus other data collection and sharing?
    • If the plan is to have opt out effective for all secondary uses, communications must cater for new babies to give parents an informed choice from Day One. How and when will this begin?

No wonder you wanted first no opt out, then an assumed consent via opt out junk mail leaflet. This is hard stuff to do well. Harder still, how will you measure effectiveness of what you may have missed?

10. Pathfinder fixes: Since NHS England doesn’t know what will be effective communications tools, what principles will be followed to correct any failures in communications for any particular trial run and how will that be measured?

How will patients be asked if they heard about it and how will any survey, or follow up ensure the right segmentation does not miss measuring the hard to reach groups – precisely those who may have been missed?  i.e. If you only inform 10% of the population, then ask that same 10% if they heard of care.data, you would expect a close to 100% yes. That’s not reflective that the whole population was well informed about the programme.

If it is shown to have been ineffective, at what point do you say Fair Processing failed and you cannot legally proceed to extraction?

> This list doesn’t yet touch on the hundreds of questions generated from public events, on post-its and minutes. But it would be a start.

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References for remaining questions:

17th June Open House: Q&A

17th June Open House: Unanswered public Questions

Twelve point plan [March 2014] positive suggestions by Jeremy Taylor, National Voices

6th September care.data meeting in London

image quote: Winnie The Pooh, A.A. Milne

care.data, politics, privacy, surveillance, trust

Human Rights – real threats today vs theories of tomorrow

Theories on Thursday, furore on Friday. By Saturday the social media had hit the fan.

What we must remember whilst caught up in the recent Human Rights fuss, is that this is discussing a future theory. In practice, we are at risk of missing three* current and upcoming human rights threats, which are very real.

Whilst future policy change may already be doing harm to the spirit of the human rights law and those ideals today, current policies are having effect today in practice.

The Deregulation Bill, and other current policies and projects.

Regular readers will know, I have followed closely the care.data plans [see past posts] to extract our confidential GP medical records and centrally store, sell and share the information.

I hadn’t realised until recently why I care so strongly about doing this the right way. It simply felt wrong that the original plan was not to inform patients at all, and not ask for consent to remove the foundation stone of our confidentiality. The delayed plan, had a terrible junk-mail leaflet drop.

The current extraction plan is pending [roadmap end of page], but details unknown.

I have concerns about how it will harm the trust in the patient-GP relationship, potentially discriminate and segment certain groups and  I’m still unhappy how open the records will be for use by third parties, not for clinical care. There needs work done to make it done well, and to be transparent and trustworthy for patients.

But I’ve realised now, it feels wrong, simply because it impinges on one of our basic human rights. Our right to privacy.

This post is not about care.data per se, but the recent Bill of Rights debate made me take a closer look at the bigger picture.

There are many discussing this, far better informed on human rights than me. But perhaps it’s time the ordinary public pay more attention to our rights, and where they fit into our lives in the UK. Rights which are easily eroded if we don’t pay attention.

I’ve had a look at the current Bill proposal [my notes & comment at the end], but at least for now, I’m more concerned about the actual plans already underway, which will in  practice,  affect the application of our human rights today, and we may not know it.

There are at least three real changes in legislation right now which I believe should command our attention.

First, the Deregulation Bill.

This Bill will go to the Lords Committee stage on October 21st.

This is a real and present threat to human rights, as stated in the Joint Committee Report on Human Rights, June 14th 2014:

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

 

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.
Sections of the Deregulation Act currently passing through Parliament suggest the removal of any regulation that conflicts with the interests of a profit-maker. There are other domestic and regulatory bodies for which we should carefully consider this implication, not least from my perspective, in the NHS.

 

The Deregulation Bill creates a conflict when a law must consider commercial gain above human rights.

Further;

“The Bill would remove the power conferred on employment tribunals by the Equality Act to make wider recommendations in discrimination cases.”

 

The EHRC regards the power [conferred on employment tribunals] as useful, both for the employer to whom the recommendation is made and to the Commission itself for following up tribunal decisions, and it does not consider that sufficient evidence has been gathered to make out the case for abolition. We therefore recommend that the power of employment tribunals to make wider recommendations in discrimination cases should be retained.”

 

 

 

The Deregulation Bill also poses some concern for those interested in the requisition process for information, and press representation groups spoke out, worried it offers a back-door for seizing journalists’ material.

 

Seen all together, aspects of the Bill which is a mish-mash of all sorts of subjects, which was derided in some reports as being about knitting yarn, means it may well be a wolf in sheep’s clothing when it comes to human rights.

 

Second and Third, the recent changes in legislation & access

Other real threats to our universal human rights in the UK, I consider as points two and three, are already having an effect.

Recent legal changes to both a) the legal aid and b) the judicial review processes mean it is harder for many people to use the available processes due to cost.

(current consultation closing October 15th here and anyone can write to their MP for support, guidance at end of page.)

This results in inequality to use rights, which should be human rights for all by creating:

1. restrictions of individual access  (who can get a fair trial, the ability to appeal)

 

and

 

2. reducing the universality of application to human rights law (limiting the circumstances and reasons ‘the how and when’ under which rights may be applied)

 

 

These are the changes in progress right now. So what of the actual projects underway or recently effected?

 

Current threats in practice to our UK Human Rights

Mr. Grayling said this week that any future policy change will continue to ensure to promote the values of individual human dignity, equal treatment and fairness as the foundations of a democratic society. Many disagree.

The whole debate of this future policy change may already be doing real harm to the spirit of the law and those ideals today.

In my opinion, current actions are having real effect today in practice which risk undermining rather than strengthening our position towards universal human rights.

Current government policies and projects sign-post current thinking on the value of universal human rights and future direction.

Consider three things:

1. the recent changes which undermine access to use our rights, [access and universal applicability for all]
2. what value rights are given within current policies and practices,
3. the direction of travel in recent legislation, such as in surveillance, affecting universal rights for all.

It should come as no surprise then to hear of a more wholesale move towards the removal of rights in the proposal to repeal the Human Rights Act, and more. Steps have been taken on this path for some time.

A current sample of some areas with flaws in their approach to human rights include from my lay perspective:

If we in the ordinary public, in response to the proposals this week, are now concerned about about the theoretical threats to human rights by a potential future government, and care about getting it right, I’d suggest we:

don’t wait to worry about what might be in June next year. Encourage those who can, such as our MPs, to look at these real and practical human rights’ threats today. Support MPs & others who are.

Start the list, with the Deregulation Bill.  (Unless NHS England Patient & Information Directorate decide to begin care.data extractions before October 21st.) Watch this space.

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*there is clearly more of significance in this area, with which those better informed and active than me would say is missing, but with which I’ve not taken as close an interest. The Deregulation Bill will potentially affect NHS bodies, and I’ve looked at it before on care.data.

Notes on the proposals, and my references below:

************************

Reference sites:

The Deregulation Bill was introduced in the House of Commons on 23 January 2014. It received its Second Reading in the Commons on 4 February 2014, completed its Committee Stage on 25 March and began its Report Stage on 14 May. The Bill has been carried over to the next Session of Parliament. The Bill was preceded by a draft Deregulation Bill which was subject to pre-legislative scrutiny by the ad hoc Joint Committee on the Draft Deregulation Bill.

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For your reference and to their credit, I’ve found the following three websites useful and kept up to date with care.data information:

Dr. Bhatia, GP in Hampshire’s care.data info site

HSCIC care.data site

medConfidential – campaign for confidentiality and consent in health and social care – seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent

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On Legal Aid – consultation responses or write to your MP: http://www.lawsociety.org.uk/news/stories/moj-consultation-on-duty-crime-contracts-support-pack-for-member-responses/

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For reference – background Bil of Rights / scrapping the HRA

The theory

The outline future proposal this week suggested, “A majority Conservative Government will scrap Labour’s Human Rights Act, and will end the ability of the European Court of Human Rights to order changes to British laws.” [Jack of Kent, October 2nd]

Some of these plans were discussed here> on the Daily Politics. From 32.30 minutes in.

The plans have been met with widespread criticism in the press and by campaigners showing where the plans are flawed.

Myths abound how human rights are applied inappropriately to whom, and how they lack common sense.

In contrast, real examples have been presented of when the Human Rights Act and ECHR have been used to enhance and protect UK citizens, not least in the Mirror.

Looking to the future, individuals have further pointed out the fundamental flaw if limits of application were to be brought in which would for example, not use the law for ‘trivial cases’.

Tim Hancock, campaigns director of Amnesty UK, said in the International Business Times of this week’s announcement: “This is electioneering on the backs of Europe’s most vulnerable.

“Under these plans human rights would be reserved for only those people the Government decides should get them.”

Whilst we may each have our own political opinions, it is valuable to stay outside them and see changes objectively.

We must also see past the UKIP defection, knee-jerk reaction which conflates everything ‘Europe’, into something from which which the UK could ‘opt out’. As long as Britain remains a signatory to the ECHR, UK citizens could still directly petition the European Court of Human Rights in Strasburg to hear their case. In fact, could be more likely to, rather than go through the British courts first. These proposals conflate the 1951 Convention on Human Rights, the UK 1998 Human Rights Act and our rights under current European law, and more.

If next May, a Conservative majority were to be elected, this proposal might form a basis of proposed legislative changes.

It is highly unlikely to be as is, or without debate. It is a partisan approach which ignores the fact that cross parliamentary support would likely be needed, as was the case when Parliament voted in favour of the introduction of the UK Human Rights Act in 1998.

But that is an if, and thus far, actually moving towards this legislative change is theoretical.

 

 

activism, engagement, leadership, politics

Human Rights proposals – stripping away the Spirit of the Human Rights Act (1998)

News today confirms what has been on simmer for some time in England:

“A majority Conservative Government will scrap Labour’s Human Rights Act, and will end the ability of the European Court of Human Rights to order changes to British laws.” [Jack of Kent, October 2nd]

The Rt Hon Lord Howard of Lympne, CH, QC said:

“The argument is not about human rights, to which we all subscribe […] the way in which the Convention on Human Rights has been interpreted is far removed from its founders’ intentions.

“We are simply restoring parliamentary sovereignty, and some much needed common sense, to our human rights laws.”

If it is truly only about common sense, everyone with common sense must support it. So why the wide press and social media uproar, and statements by other parties they would vote against such a proposal in Parliament?

“No, the argument today is whether arrangements such as the European Court of Human Rights and the Human Rights Act actually help to protect such rights or, by the way in which they have operated, bring the concept into disrepute.”

The argument appears to suggest, that there should be no need to be concerned about the removal of laws which ‘protect such rights’, that there is nothing to hide, nothing to fear. That in fact, we will do better by removing the framework which supports the common sense process. Common sense will operate and prevail without legislation.

If we believe the policy statement that under these changes, in effect, little would change for many people, why are the changes needed? By many accounts, many good results of the 1998 Act affect many of us.

Those much better informed than me, are debating this in the media and online, and is worth following. But I think we should be careful we don’t get so caught up in looking ahead, that we miss changes going on now.

The debate makes me ask myself, what is the purpose of a law, and whom should it serve?

If we are convinced change is needed, we assume a belief that the current process is flawed.  This comes in part from myths and misrepresentations in isolated cases. We should in discussion see past the UKIP defection, knee-jerk reaction which conflates everything ‘Europe’, into something from which which the UK could ‘opt out’ and what risks and benefit it would actually bring for whom.

Even if these changes were simply a case of choosing to ‘opt-out’ from the protections of the European Court for UK Citizens (which it is not) and even if one were to agree common sense can make better decisions without legal protection, one must consider that by removing the UK Human Rights Act [which had cross party support in 1998], and the European aspect of the laws, and by suggesting amendments to the 1951 European convention on human rights, changes would remove a layer of external protection and last support channel outside the UK system, for us as citizens.

Stripping away a spirit of Governance

Does this affect the opportunity for citizens and courts to benefit from external objectivity?

The 1998 Act was intended to reduce the number of cases going to the European Court. You can still take a case to the European Court, but the Human Rights Act meant a case has to go through the UK courts first. Whilst Scotland (and Wales to a lesser extent) has some devolved and historically founded independent law making processes, the 1998 Human Rights Act covers the whole of the UK. As does the ability to go to the European Courts as an extra layer of legal protection, guidance and enlightenment if exhausted at home. 

Will we no longer be able as legitimately, to call on bodies with cross-border, external best practices to learn from which has any accepted weight? Or cases to set precedence? But does the European Court have these powers anyway or do these policy statements just cause confusion?

Former Attorney General Dominic Grieve said the plans were flawed. The Tory MP said they would be “difficult to implement” and risked “undermining” the UK’s – and his own party’s – tradition of upholding human rights.
Proposals state: ‘In future ‘Britain’s courts would no longer be required to take into account rulings from the Court in Strasbourg. This would make our Supreme Court the ultimate arbiter of human rights matters in the UK.’

The statement gives the strong impression that the UK will regain a lost level of independence as a deal for giving up a layer of objectivity and governance.

In fact, we would not do so by repealing the 1998 Human Rights Act, the European Court would keep its role in the UK in practice.

Liberty clarified: “The Human Rights Act did not make Strasbourg a precedent-setting Court, as the proposals claim. This proposal will not increase the Supreme Court’s constitutional standing. It is already the ultimate arbiter of human rights cases in the UK but, if we remain part of the Convention, British people will still be able to take claims to Strasbourg once domestic litigation is exhausted. The dilution of Convention rights proposed makes it more likely that Strasbourg will find against the UK. The Court has no ability to require the UK to change British laws. Parliamentary sovereignty is intact, as made clear by the non-implementation of the prisoner voting judgment. But the British Government has ratified the Convention and so undertaken to comply with its international law obligations to respect the decisions of the Court.” [Liberty]

However the side comments on the 1951 Convention are of much more concern to me.

Are the Conservative proposal really going so far as to say it would remove that Convention undertaking, and no longer respect international law? Surely not in practice, but in spirit, it seems to suggest just that.

They would seek to: “Clarify the Convention rights, to reflect a proper balance between rights and responsibilities.”

that would be a huge change with respect for our position towards international law.

It seems to suggest that there would be a trade off giving up the universally applicable nature in the 1951  convention on Human Rights, to enable selective decisions which and when, rights would apply.

 

Stripping away the rights which apply to all

The basic principles of universality, inalienability and indivisibility, [outlined here by Liberty] are under threat through these changes:

 

“Human rights are universal. They apply to all people simply on the basis of being human.

Human rights are inalienable. They cannot be taken away simply because we do not like the person seeking to exercise their rights. They can only be limited in certain tightly-defined circumstances and some rights, such as the prohibition on torture and slavery, can never be limited.

Human rights are indivisible. You cannot pick and choose which rights you want to honour. Many rights depend on each other to be meaningful – so, for example, the right to fair trial would be meaningless without the prohibition on discrimination, and the right to free speech must go hand in hand with the right to assemble peacefully.”

Isabella Sankey, Director of Policy has taken apart some of the implications here. Her post is worth a thorough read.

Stripping away rights of access

 

It appears that we are moving towards a state in which the suggestion is that laws from the top down to control citizens’ rights will be applied universally, whilst at the same time, the rights of those who may feel unfairly treated by them are becoming restricted, through policy and in practical terms.

 

If British citizens would still be able to take claims to Strasbourg once domestic litigation is exhausted, they have to be able to not just in theory, but practice.

Courts which exist as channels to a fair appeal are only applicable to all as a right effectively, if they can be accessed by all. In the UK the  judicial review practices have changed on charging, which make universal access to judicial review harder. Recent changes to legal aid funding mean fewer people can afford access to representation.

 

This report from the International Council on Human Rights Policy may be ten years old, but is still I feel, relevant.

“…individuals, particularly those who are vulnerable because of exclusion, poverty and discrimination, unable to obtain benefits and rights to which they are entitled in law? This report examines the impediments that obstruct large numbers of people from accessing the full range of human rights. It analyses the performance and responsibilities of governments and other institutions, and identifies new forms of action that official and human rights organisations might need to undertake if access is to be improved.”

If Human Rights law is not accessible to all, and does not apply equally to all, it is not universal. Either not all are humans or they are not rights. Either way, the law is flawed.

 

I believe being universally applicable must also ensure universal access in order to be meaningful.

 

Stripping the Spirit of accepted Human Rights

Whilst the Acts  and declarations have legal weight which are of intrinsic importance and value, I believe it is also of importance to value the philosophy of the principles. It is this loss which worries me as much as the thought of losing concrete governance. We risk losing not only the protections of the law, but the Spirit of the law.

The spirit acts as an additional layer of conscience accompanying lawmakers and politicians in their decision making process.

I fear that he spirit of the values the state places on human rights,has been injured in recent times.

 I fear an ‘accepted’ element of barbarism has crept into our own humanity in the treatment of our ‘prisoners of war’.

 

The right not to be tortured or treated in an inhuman or degrading way is an absolute right. It should never be limited and it is a commonly held belief that there are no circumstances where this type of treatment of people can be justified.

 

However torture has become apparently justifiable recently. Justified by the highest authority in the US, some may see as the highest ‘western world power’. “We tortured some folks” was justified with the near flippant tone of a bumper sticker. Little official repercussion  appears to follow.

 

In doing so, the affiliated powers revealed how far we have fallen from our ideals of humanity embodied in the Universal Declaration of Human Rights.

Our values and self created global ethic in which some human rights are absolute.

It appears we have allowed through our government’s use of torture, an absolute boundary to be broken. So should we be surprised if that was only a first step? What is perceived as acceptable in how our government treats others, can only lead to a contagion in perception of what is right and acceptable in how others will treat our people abroad.

Crucially, I believe it also affects our own public perception of acceptance and ‘the norm’ in how we treat our own people.

Yet again, at home in human rights law, perception may be that this will not affect us. Not ‘our own’ kind of people. It will only affect ‘others’.

But the others in the case of human rights in the UK, may be our own gender or racial discrimination case at work. It may be how our friend or family member is treated by the authorities in sexual discrimination or in disability claims process.  Those in prison, the poor, minorities – these groups suit some agendas to portray as ‘other’. To thrive, I believe we must strive to remember our togetherness as a society which looks after one another, not treats ‘others’ as outside our realm of protections. As somehow, less ‘entitled’.  Less entitled to welfare. Less entitled to vote. Less entitled to universal rights.

If you think, no not me, then let’s consider closely our own reaction to the arrival of travellers in a local field. Or news of immigrants awaiting asylum rulings being housed in bed-and-breakfast accommodation.

It seems that to whom our human rights should apply, would become discretionary.

Are some Human Rights Claims more Trivial than Others? What about the same Human Rights for all?

If the majority of rights are non-absolute and can be limited or restricted in certain circumstances, we should not be surprised if these too are now trampled on if found to be ‘trivial’. The circumstances in which there is a need to take into account the rights of other individuals or wider society would become  discretionary.  How would that be defined and by whom?

“Limit the use of Human Rights laws to the most serious cases.”

There will be a threshold below which Convention rights will not be engaged, ensuring UK courts strike out trivial cases.

It appears that which subjects and in which circumstances individuals should be entitled access to human rights protection would become discretionary.

By saying some ‘trivial’ cases would not be relevant for consideration, you throw out the spirit of the universal applicability of Human Rights’ legislation.

Where does this leave the Spirit of our Human Rights in practice?

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

But current reality is that changes have already made universal access to judicial review harder. Reality is that the changes to legal aid funding already means fewer people can afford access to representation. Minority groups find access a challenge. Mothers without means are representing themselves in divorce cases. People are facing abusers in court.

If now we further undermine both access and applicability, the reality is under the law some will be more equal than others.

So what of our basic principles?

Human rights are universal. They apply to all people simply on the basis of being human.

Human rights are inalienable. They cannot be taken away simply because we do not like the person seeking to exercise their rights.

Human rights are indivisible. You cannot pick and choose which rights you want to honour.

Whether this policy ever becomes reality or not, it harms the perception of the value we place on human rights, at home and abroad.

Universality of application and universal access are already under real threat, creating inequality for which humans, these laws offer support.

These proposals normalise what is in fact nonsense.

Whilst at least for now, it makes no difference in legal practice, I think the Spirit of Human Rights in the UK under this proposal, just had her wings stripped off.

 

***

Chris Grayling’s eight-page strategy paper http://s3.documentcloud.org/documents/1308660/protecting-human-rights-in-the-uk.txt

[Liberty useful listing of what the Human Rights Act covers.]

not health, poetry, women, words

National Poetry Day 2014 – Remember

This year’s National Poetry Day is today, Thursday 2 October.
The theme for 2014 is ‘remember’. 

***

Memories of Jacob’s Room – At the Sea Lane Cafe

Beyond the pane of glass,
endless strata of sands stretch out to the lighthouse.
Wet swathes of brown and grey in irregular ridges,
in donkey colours.
I think of the rides of childhood he never had.
The sky sleeps snug above,
inverted greyness of the ground,
tucked in
and thickly cloud clad.

Stranded seaweed lies drying,
dying on the foreshore.
Patterns like magnified veins.
Scattered stones,
rounded down by years of wear,
worn down tossing in the waves.
Becoming sand.
Tossing in the waves.
The result of endless cycles of destruction,
construction,
worn down under pressure.
Tossing in the waves.
Becoming smaller,
and smaller.

Tiny damaged shells are picked up by playing children,
taken home, clamped tightly in their tiny hands.

Inside the adults sit, each at a table,
one a group of six absorbed in talk of the breakfast,
stolen from the office fridge.
Told by a man wearing tortoiseshell rims
around elegant eyes,
deep in experience,
face etched with laughter, he grins.
His white-grey hair merging with the wintry sky beyond,
beyond the glass.
I drift into daydream.

I would like to have known him.

‘Number fifty-nine. Pot of tea for two?’

‘That’s your peugot, the blue? Isn’t it? You’ve left your lights on.’

An older woman gets up, keys in hand.
Dragged from her steaming reverie,
thoughts abandoned.
Dragged back outside into the cold mainstream of life
by the saving, searching beams of her car.
She stays outside and walks along the ridge.
Kitesurfers catch the early morning offshore breeze
on their voyage out.

And I,
I think of Virginia Woolf
and her pebbles
and of knitting blue woolen stockings
which were so small.

And never worn.

***