Social work and end-of-life care

Social work is important in end-of-life care

Information governance report covers social care, deceased people

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20140227 Infogov reviewStimulated by all the discussion about whether we should agree to GPs sending our medical records to a central source to be sold to insurance companies and the like, I’ve been looking at last year’s Information Governance Review.

Link to Information Governance Review Report

This is a follow-up to the Caldicott Review of 1997, which you can get on the Internet from the Government Archives; they are now archiving important web documents…

Link to the Caldicott Review (1997)

This is one of those amazing government documents that led to something happening, and for some years, I was a Caldicott Guardian, charged with representing patients team in the management of the hospice I worked for as part of ensuring the confidentiality of their records.

Link to the Caldicott Guardians website.

The Review Report from last year went back to the whole process, and particularly in the light of the massive expansion in communication arising from the ubiquity of the internet. Also amazingly, Dame Fiona Caldicott was still around to chair it, and still had enough credibility to do so.

One new feature is that health and social care are covered, since although the term ‘social care’ was just coming into use back then. It is now more commonplace. But not really in anything to do with the Department of (very much only) Health. In the new report it is all ‘elfnsoshall’ with the basic assumption that you don’t need to think very much about what social work is all about – just talk about the NHS and everything is the same. Very few people involved directly with social care were on Dame Fiona’s committee.

There is a section on children and family records, and this covers some of the complexities of social care records in this field, but it still references the Royal College of General Practitioners and the BMA rather than agencies with social care expertise. It notes issues about children’s social care records: many children’s social care departments have family records, alongside individual children’s records, and this has always been complicated, although is better in some ways since computers permitted multiple postings to different records, if an entry covered several children or family members in one go.

However, the report also notes that the Health and Social Care Information Centre (of current GP records fame that has covered itself with pooh over its schemes for GP information) does not have the statutory right to collect children and families social care data. I’m comforted by this, in view of the government’s wish to sell as much health data as possible to private sector organisations for as much money as possible, which has only been stymied for a brief period of grace before it goes ahead again, due to widespread anxiety about confidentiality. We can do without this organisation getting its commercialised mitts on social care data as well.

There is also a brief section on deceased people, since NHS records are clearly available to appropriate people after death, while this is not possible in social care. The proposal is to think about people being able to give custody of the health and social care data in their Will: this would resolve some of the problems health care agencies have in giving access. Although perhaps not. When I worked in a hospice, fighting over the records was often a follow-on to fighting among family members about the estate, sometimes as a proxy for their role in the family

5.7 The deceased

There is a lack of consistency in the approach to the data of deceased people within the health and social care system. The common law duty of confidence is generally regarded as extending to the deceased but the Data Protection Act only relates to the living. Legal representatives or those with a claim on the estate of a deceased person are able to access the health records of the deceased person through the Access to Health Records Act 1990, but there is no equivalent legal route for access to social care records. Some ‘work-arounds’are used but these are increasingly untenable (p 58).

As people gain more control of their information, it should be possible for a person to give custodianship of their personal confidential data after their death to someone, or to a research data bank, so that future generations can use it to learn and improve the health and wellbeing of society.

The review panel concluded that the Law Commission, in their review of the legal aspects of data sharing should consider looking at how the law surrounding deceased persons might be better harmonised. In particular, the Panel would like the Law Commission to consider ensuring there are no legal impediments to giving custodianship of their health and social care data within their last will and testament (p59).

But it does contain a useful pile of information about information – well worth taking a look at and following up.

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Written by Malcolm Payne

10 March 2014 at 11:28 am

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