ACCESS TO INFORMATION
342. Although it was not specifically raised with
us in evidence, we noted that the draft Bill does not deal with
Access to Information about those lacking capacity to make decisions.
This seemed to us to be an important and potentially difficult
issue which appeared to have implications for the way in which
parts of the draft Bill might work out in practice.
343. We presumed that those who lack capacity would
be entitled to the same rights of confidentiality about their
personal affairs as those who have capacity. But we wondered whether
laws like the Data Protection Act or the conventions in professional
guidance which enshrine that right might cause problems for those
who are trying to help persons lacking capacity to take decisions
in their best interests.
344. We assumed that donees appointed to manage financial
affairs under Lasting Powers of Attorney would have full rights
of access to financial information about those for whom they have
responsibility, as would Deputies appointed by the Court of Protection.
But it was not clear whether donees and Deputies would have those
same rights under the draft Bill to information related to medical
and welfare decisions.
345. We also foresaw problems for the wider range
of persons whom the draft Bill envisages acting under the general
authority on behalf of those lacking capacity. We noted that the
draft Bill placed responsibility on them to consult with relevant
bodies or persons in determining the incapacitated persons best
interests. But, without such rights of access to information,
those bodies or persons could feel bound to refuse them access
which they needed to information regarded as confidential.
346. This seemed to us to be likely to inhibit the
simplified decision-making and enhanced consultation which the
Bill was trying to encourage. It might well result in decisions
being delayed while applications were made to the Court of Protection,
which would in turn add to the Court's workload.
347. We thought it might create a particular problem
for advocacy services, because they have no defined status under
the draft Bill. We also wondered how it might affect the investigative
powers of the Office of the Public Guardian or the effectiveness
of the new Adult Protection Committees to be set up jointly by
the Department of Health and the Home Office under the Government's
"no secrets" policy.
348. The Chairman therefore wrote to Lord Filkin,
the Under-Secretary of State for Constitutional Affairs at the
Department for Constitutional Affairs, with a copy to Mrs Rosie
Winterton, the Minister of State at the Department of Health,
349. Lord Filkin replied acknowledging that access
to information, confidentiality and data protection were both
important and difficult issues for those lacking capacity. He
stated that these issues did not feature explicitly in the current
draft Bill because they would "largely be dealt with by consequential
amendments and by guidance" 
He added that consequential amendments would be included in the
Bill when it was introduced.
350. He went on to say that, according to guidance
issued by the Information Commissioner, a request for access could
be made, under the provisions of the Data Protection Act 1998,
on behalf of someone lacking capacity where there was an Enduring
Power of Attorney or authority from the Court of Protection. He
indicated that this guidance might relate to access to clinical
records by someone authorised under an Enduring Power of Attorney.
But he added that "it would be wrong to assume that this
will always encompass decisions about treatment and care".
He referred to orders made under the Data Protection Act which
enable Court-representatives to request access to information
on behalf of someone who is incapable "providing that certain
information is not disclosed to the representatives" 
351. Lord Filkin acknowledged that the draft Bill
proposed new wider functions under Lasting Powers of Attorney
and for court-appointed Deputies. The Department intended to consult
the Information Commissioner with a view to amending his guidance.
The intention would be to allow requests for access to be made
by persons having those powers. He added "consideration is
being given to the extent to which financial LPAs should be able
to access health and welfare information and vice versa".
He also promised to "revisit the 2000 Orders and consider
whether these will require amendment in the light of the Bill.
352. Lord Filkin also
stated that the Department proposed to include powers in the Bill
related to the health records of deceased persons. These would
be similar to those of the Adults with Incapacity (Scotland) Act
2000 which enable those acting on behalf of persons without capacity
who had an interest in the estate of a deceased person to have
access to health records.
353. Access to information by those acting under
general authority was described by Lord Filkin as "more difficult
because there is not one clear person with authority to act".
He suggested that the situation would be the same as that which
currently applies to the Common Law:
"At present information is shared on a 'need
to know' basis and guidance for NHS staff, 'Confidentiality: NHS
Codes of Practice', has now been published following a public
consultation. The Code has been endorsed by the British Medical
Association, General Medical Council and the Information Commissioner
and can be found at www.doh.gov.uk/confiden.
Health and social care organisations operating under best practice
have drawn up information sharing protocols. For example, the
'No Secrets' document requires Adult Protection Committees to
draw up common agreements relating to confidentiality.
"Where information is held under the common
law duty of confidentiality, it must only be disclosed for the
purposes that it was collected for unless there is explicit consent
from the subject, a statutory basis for disclosure or a robust
public interest justification for the disclosure. Regarding this
latter justification, it is accepted that where there are concerns
about abuse and vulnerable people are at risk, then absolute guarantees
of confidentiality cannot be given".
354. Finally, Lord Filkin said:
"Our developing work on the Bill is leading
us to examine further whether these current arrangements shown
would be adequate under the Bill, perhaps supplemented by clear
guidance or whether they will just have a fresh look at these
policies. We will continue to investigate this".
355. This appears to us to be yet another area where
the Department has introduced the draft Bill before taking full
account of the potential implications. In this case, the issue
is not mentioned on the face of the draft Bill at all. As with
the preparation of draft Codes of Practice and adequate assessment
of resource implications, it is quite clear that a great deal
remains to be done which we would want to see done properly. But
we are equally keen not to see the Bill unduly delayed.
356. We regret that the Department do not appear
to have adequately addressed the important, though admittedly
complex, issues involving access to information to those acting
on behalf of people lacking capacity. We welcome the Department's
assurance that work is in hand to resolve these issues and that
consequential amendments will be included in the Bill when it
is introduced. We hope that the implications can be thoroughly
investigated and adequately tackled in the consequential amendments
and in the Codes of Practice. But we also hope that this will
not unduly delay presentation of the Bill.