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MIRRA: Memory – Identity – Rights in Records – Access

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But what does it all mean? A first attempt at coding

VictoriaHoyle23 July 2018

We have been out and about gathering ‘data’ for the project since March.  This mostly consists of transcripts of interviews and focus groups with care leavers, social care practitioners, information practitioners and academic researchers, as well as piles of post-it notes and flip-chart papers from collaborative workshops.  So far we have spoken to over 50 people and are sitting on a mountain of 150,000 words, and that’s just the beginning with plenty more sessions planned between now and the end of the year.  Ultimately all of this will be analysed and interpreted to form the basis of the guidance, toolkits, conference papers and articles that we will produce during the project.  But where do you start and how do you manage the process?

This kind of data doesn’t lend itself to statistical analysis, so instead we’re using a well-established approach to qualitative data called coding. This involves reading through each interview or focus group multiple times highlighting or tagging words, sentences and paragraphs that are significant to our research themes.  We use a piece of software called Nvivo to capture this process, which allows us to build up a rich and complex picture. It also means different members of the research team can work on the same data, layering up our diverse perspectives.  Later on the software will help us to manipulate the codes or tags, looking at patterns and themes in the data.  We can also use it to create visualisations and diagrams.

A critical part of this process is establishing a coding framework: the initial set of codes that we will use to shape the analysis.  Over time the coding framework will take on a life of its own, growing as we work through the data, but we have to start from somewhere.  At the beginning of July the whole research team got together to start building the framework.  During the workshop we began this process by working intensively on a sample of data extracts.  Wielding highlighters and post-it notes we marked up and commented on things that struck us as interesting and relevant in the context of the research questions.

The benefit of doing this as a team is the different viewpoints it captures at an early stage. Coding is a very individual process – every person responds to a transcript based on their own interests and instincts. Eight people will code a single paragraph in eight different ways, seeing and hearing different things.

In total we looked at extended extracts from three interviews and focus groups, to build up a good basis for designing the coding framework. My job was to take these sheets away and digest them into a structure of codes that can be input into NVivo. I used a good old spider diagram to collate and group the words and phrases that the group generated.  In this way I was able to identify four key areas: Access, Content of Records, Regulation and Change.  Below is the diagram for Access, by far the most developed of the areas. The highlighted words/phrases are taken directly from the coding exercise; the un-highlighted codes were generated from a recorded discussion we had later in the workshop.

This looks very messy and chaotic at the moment, but once it has been uploaded into NVivo it looks very neat. We can start using it to code transcripts immediately, like this one from a contribution by a social care practitioner. You can see how sections have been highlighted on the left and mapped to codes on the right. Often two, three or more themes overlap as they do here.

Now that we have our initial coding framework we can begin the process of working systematically through our data in this way in earnest, which should keep us nice and busy until the beginning of next year.

Reflecting on information rights for care leavers in a complex legal world

Elizabeth JLomas10 July 2018

On the 25th May 2018 the General Data Protection Regulation came into force across the European Union. This legislation was enshrined into UK law through the Data Protection Act 2018. Together these laws are intended to give greater protections and rights to individuals.

All organisations that manage ‘personal data’ (and what business, charity or public authority does not!) must demonstrate that they do so appropriately. This is termed ‘privacy by design’. It places the onus on organisations to proactively consider their information management processes and the documentation of these processes. The legislation brings in far higher penalties for failing to comply with data protection law (up to 20 million Euros or 4% of turnover whichever is greater) and as such it is evident that organisations are seemingly taking notice.

As guidance emerges on the implementation and bedding down of new best practices under these laws, key stakeholders need to be part of the discussions around the management and use of their information. As a result of this legislation, it is to be hoped that better care will be taken of records as the penalties for the mismanagement or loss of information are significant. To lose the file of a care leaver could cause significant damage or distress and as such is likely to be judged harshly. However, ‘privacy by design’ and the increasing reliance on documented risk assessments may mean that organisations will proactively destroy much more personal information unless they are given rigorous reasons why information needs to be kept. Whilst the records of those who are formally defined as ‘Care Leavers’ (https://www.wigan.gov.uk/Resident/Health-Social-Care/Children-and-young-people/Care-leavers/Who-is-a-care-leaver.aspx) are legally required for 75 years from the date of the record, the records of children who have a more complex picture of social care are not necessarily given such strong protections and may be destroyed far earlier. It is important to ensure that local authorities do take into account the significance of these records to individuals as sometimes they are the only affirmation of childhood memories albeit that many may not feel a need or indeed ready to access this information for decades.

Those who are hoping that the new laws will enhance their access rights may be somewhat disappointed. The concept to access to the records of children who have been in care was enshrined in law through the case of Gaskin v UK (1989) 12 EHRR 36 which relied on Article 8 of the Human Rights Act to make the case for access given that this entitles an individual to respect for private and family life. However, when authorities review files they are required to consider the duties of confidentiality owed to other parties where their information is also on record. This is a balancing exercise which is often subjective. It would aid this process if clearer guidance were provided to enable an authority to weight the Care Leavers’ rights in these cases and thus err on the side of release. Some authorities do take this stance given that the damage or distress caused to an individual when information is withheld is not insignificant.

Finally, it is to be acknowledged that many Care Leavers will not want ‘the State’ to retain the record of their childhood and may be hopeful that the ‘Right to be Forgotten’ under the law will enable them to request that their files will be destroyed. Sadly, the right to be forgotten is quite limited. Where authorities have a legal basis for retaining the information and in certain cases a legal responsibility to do so it is unlikely the information will be destroyed. If records have been formally archived in accordance with the exemptions provided for ‘archiving in the public interest’ then there is an exemption from the right to be forgotten. There is also a potential exemption from subject access requests e.g.  depending on the extent to which the record is accessible/structured.  The new draft archival guidance in this sphere states, that whilst archives may not be legally required to respond a subject access request they can choose to do so “especially when an individual’s rights or entitlements seem to be at stake”. The guidance is currently open for comment at http://www.nationalarchives.gov.uk/documents/information-management/guide-for-public-comment.pdf .

In conclusion, whilst the new legislation offers a step forward more specific guidance is needed to make change. Care leavers are owed more personalized consideration and regulation or at least clearer tailored guidance. I hope that through this project and other related research this can be achieved.

Everyone deserves knowledge of their childhood and control over their own childhood records!

Receiving my care file

VictoriaHoyle2 July 2018

This post was written by Gina Larrisey, a care experienced co-researcher working on the MIRRA project.

I was around twenty six years old when I reached a point where I started to need some answers about my life. Where had I been fostered and who was I with? I was fostered at a young age so my memory of it all was hazy, remembering dribs and drabs. I had asked my Mum at some point who had fostered me but her answer was “ooohhh I don’t know.” I was shocked and upset that she didn’t know where I had been and who was looking after her child. Although there were family issues, hence my being in the care system, I found it hard to stomach that she didn’t even know where I was. There were little gaps that needed filling in and she was my family and the obvious person to have asked. It felt like pieces of jigsaw that I need to put together to complete the picture, but without knowing about that part of my life I couldn’t fit things together.

That is when I wrote to Social Services requesting my care file. I retrieved an address to write to them by popping down to my local council building and asking how I went about it. There had to be a reason for this constant battle with my family. I was told it could be up to three months to hear back but it only took a few weeks whilst the information was gathered. I was then invited to a day centre to view it.

A lovely social worker sat with me when I received my file as did my partner who greatly supported me at the time. Two great big brown envelopes were brought to me containing my life. I sat down and read through a lot of it straight away. There was too much to read all of it at once. There were little yellow labels to mark the most distressing parts. Some things I already knew, some had been dormant memories, others were shocking revelations. It was no wonder I had been so messed up as a child. Reading through it confirmed to me what I needed to know. I was not at fault for what had happened to me. However, I realised that it was no one else’s fault for the things that happened to me in the past either.

The social worker who sat with me was very supportive and very sensitive. I have always appreciated her for that and never regretted receiving my file even though it was a huge thing to deal with. It has helped me to move on in my life and put the pieces of the puzzle together.

Gina has written a book about her care experiences and her life since leaving care if you’d like to know more about her journey. It’s called From Care to Somewhere

Recordkeeping and the IICSA Interim Report

VictoriaHoyle25 June 2018

At the end of May my colleague Elizabeth Shepherd and I visited the London offices of the Independent Inquiry into Child Sexual Abuse (IICSA) to talk to staff about the MIRRA project and information rights in social care records. The Inquiry is investigating child sexual abuse in institutions, as well as institutional responses to abuse, and so has a very wide remit including schools, clubs, churches and family home, as well as foster placements and children’s residential homes. (You can find their full Terms of Reference on their website.)

Although the Panel is not exclusively focused on the care-experienced community many of IICSA’s investigations and findings touch on issues that are relevant to our research.  The release of the Panel’s interim report in April this year underlined that records and recordkeeping are high on their agenda.  The report is a 100+ page summary of the findings and recommendations IICSA has made so far from its 5 public investigations and the 1040 personal accounts of abuse by victims and survivors shared through The Truth Project.  The first Truth Project report found that around a quarter of witnesses had experienced sexual abuse whilst in care.[1]

Both reports make for difficult but essential reading, setting out the lifelong impacts of childhood sexual abuse and trauma, and confronting the ways in which our institutions have perpetuated and enabled it.  What makes IICSA’s interim report particularly relevant to MIRRA are the numerous references to the importance of records: as evidence for the investigation but also as personal resources for the victims and survivors of abuse.

In some cases they have been critical to the Inquiry’s work.  For example, records relating to Knowl View School in Rochdale showed that the local authority had been aware of sexual abuse allegations and had ignored them despite denials made at the hearing.[2]  In other cases poor records management or the complete absence of records has frustrated the process.  The Royal Overseas League, for example, has kept almost no information relating to its programme for migrating children to Australia.[3]  The same was found to be true at Cornwall County Council. The Inquiry stated that this could not be treated as an ‘unwitting oversight’ but ‘indicates a failure to have the welfare and needs of the children as priorities.’[4] The poor quality of recording and the mismanagement of records was an indicator of the quality of care that was received.

The lack of records or their poor management also ‘caused distress to the former child migrants who were affected’ throughout their lives.[5] The report recognises that poor recordkeeping prevents people from understanding their own histories and identities and delays them finding family members, including living parents and siblings.  In the themed findings of the report there is specific recognition that ‘Adult victims and survivors often face difficulties when trying to access records about their childhoods.’[6]  Later on the report extends this observation to say that it is true for anyone trying to discover information about their childhood in care.[7] This closely matches what we are finding in our research.

As yet IICSA hasn’t made any recommendations about records and recordkeeping. The current report does mention that the records of former child migrants should be ‘retained and preserved’ using ‘robust systems’ and that all relevant institutions ‘should provide easy access to them’ but this should presumably be extended more widely.[8]  It seems as though IICSA is considering just that:

This is a technical and complex area of public policy. There are different rules for the retention of records across the different institutions covered by the Inquiry’s Terms of Reference and the quality of record keeping also varies significantly… The Inquiry will consider whether it can recommend changes that would particularly benefit victims and survivors of child sexual abuse.[9]

During our visit to the Inquiry Elizabeth and I had the opportunity to discuss these changes and how our research could provide evidence to support the Inquiry’s recommendations in this area.  The Australian Royal Commission into Institutionalised Responses to Child Sexual Abuse made a very strong and useful set of recommendations around recordkeeping and information sharing in its final report last year that could provide a model for England and Wales.

[1]        Independent Inquiry into Child Sexual Abuse. “Victim and Survivor Voices from the Truth Project.Pdf.” IICSA, 2017. 66.

[2] Independent Inquiry into Child Sexual Abuse, “Interim Report of the Independent Inquiry into Child Sexual Abuse.” IICSA, 2018. 43.

[3] Independent Inquiry into Child Sexual Abuse, “Child Migration Programmes Investigation Report.” IICSA, 2018. 109.

[4] IICSA, “Child Migration Programmes Investigation Report.” 112.

[5] “Interim Report of the Independent Inquiry into Child Sexual Abuse.” 40.

[6] “Interim Report of the Independent Inquiry into Child Sexual Abuse.” 68.

[7] “Interim Report of the Independent Inquiry into Child Sexual Abuse.” 72.

[8] “Interim Report of the Independent Inquiry into Child Sexual Abuse.” 40.

[9] “Interim Report of the Independent Inquiry into Child Sexual Abuse.” 72.

A Care Leaver’s Story: Lost records, lost lives

VictoriaHoyle18 June 2018

This post has been contributed by a care leaver who has chosen to be anonymous. It’s the first of many posts sharing the real life experiences of people accessing their social care records.

I am going to share my story about my care records, but I am not going to share my name. That is not because I am embarrassed or ashamed of my care past – I have long ago come to terms with that – but because the information being shared would cause embarrassment and possibly distress to members of my family.

Information recorded about children in care, a routine feature of daily life in the care system, is profoundly important and can have an impact not just on the subject of the records but on those close to them for generations.  What is written, how it is written and the language used is so very important, but how rarely this impact seems to have been a consideration over the years.

I am a retired social worker with extensive experience of residential work and regulation who has worked around the care system for many years. I know about case recording. I am also care experienced and spent my entire childhood in care in multiple placements. I entered the care system as a toddler and was separated from four of my siblings across the UK. No steps were taken to maintain contact between the sibling group and it was 40 years before I met one of my brothers for the first time.

I was not given any information by social workers about why I was in care or my family background. Everything I knew I learned from older siblings who kept in touch with the older brother I was placed with. I knew very little indeed about my parents or family heritage.

Many years later as a social work professional, I visited a children’s home I had been placed in as a child. I told the manager I had been placed there as a kid and he was able to find an old review report about my brother and me. He showed me one page describing us as small children. My brother was described as cheerful and outgoing, me with my nose always in a book. That was the only truly descriptive information about my background that I ever saw.

Many years after I had been discharged from care I met the brother I had been separated from for 40 years. He wanted to see his care file and he had written to the local authority in whose care he had been placed. They had sent him his ‘file’. I knew from looking at it that it was a file of monthly visits to his carers made by an official from the council, not his care file. It told us little or nothing about the family.  We wrote back to the council and asked for his complete file. This time he was provided with a heavily redacted file of his childhood placements, but all family and historical information had been removed. He was told that he could not see that because it included information about others including his mother who had not consented. Our mother had died many years earlier so we were not impressed by this excuse.

We wrote again asking to see the family file, pointing out that our mother had died and offering the death certificate. After months, my brother was told he would be allowed to peruse the file but would have to travel to the local authority offices to see it under supervision.  Recently, he sought to make arrangements to attend with his daughter. He was told the file had since been ‘lost’ and they would let him know when they found it.

I was moved to seek my own care file. I wrote to the local authority who were responsible for me as a child in care. After a few weeks, I received a very polite but short letter of apology with a photocopy of what I recognised to be a ‘Movements Card’ attached. The local authority apologised to me because my file had been destroyed years earlier during some local authority reorganisation. All that they could find was this card, recording my movements through the care system from a toddler to age 18. It was a terse business-like document, like many records I had seen over the years in social work.

The card included the names and dates of birth of all my siblings. One was spelled incorrectly. It included a list of placements I had lived in. That list was incomplete, missing out several children’s homes and foster placements I was placed in.

The file included a contact address they had for my late mother. I knew the address. It was a hostel for homeless people. It also included a brief section including the reason for my being ‘received into care’.  It included the short sentence “Mother in HMP”. That was it.

I have been a social worker working in or with the care system all my life. I knew records were carelessly kept and people recorded without any thought that one day the people they were writing about might read their comments. Even so, I was shocked and angry at this single remaining record of 16 years of my life.  To the local authority it was a record of movements in care (incorrectly recorded). To me it was my childhood. My care file had been a collection of old papers that were in their way when the local authority reorganised its systems. It made sense to them to dispose of it when they modernised. In doing so, they destroyed possibly the only remaining history of my life with information about me that I can now never know.

My brother’s daughter is a highly skilled genealogist. She has traced most of our family, now spread across Canada, South Africa and Australia as well as the UK. We have pieced together my family history and heritage back to the mid eighteenth century. Due to one single administrative decision made by a local council, my history from the mid twentieth century is now lost for ever.

MIRRA

Elizabeth JLomas8 March 2018

This AHRC-funded research project seeks to explore the information rights ecology in the public and voluntary sectors in order to ensure that citizens are able to exercise their information access rights and assure their data privacy, and that public authorities understand their rights and obligations. We will take a participatory approach to the research, which will focus on the creation and management of care records and data, held by different kinds of voluntary and public authorities, specifically records relating to children’s services.