Joint Committee on the Draft Mental Incapacity Bill Written Evidence


51.Memorandum from Michael and June Power (MIB 42)

  1.1  We write as the close relatives of two persons aged 54 and 68, respectively, with severe learning disabilities. For over 14 and 12 years respectively, they have lived in separate residential care homes. They can neither read nor write nor have the mental capacity to make informed decisions outside a very limited range of issues. Both have been the subject of abuse/neglect on, at least, four occasions (in total) over the past 10 years. Mrs Power has been their Court of Protection appointed Receiver since 1978.

  1.2  In the light of past experience, we welcome the Draft Mental Incapacity Bill. It is an important improvement in the area of decision-making on behalf of mentally incapacitated adults; and should help clarify the present unsatisfactory legal framework. However, there are two particular aspects of the Draft Bill (or Explanatory Notes) which give rise to concern:

A.  ACCESS TO PERSONAL DATA (INCLUDING HEALTH RECORDS)

  1.3  Both the 1995 Law Commission Report (paragraphs 8.20 and 8.23) and 1999 Government Report Making Decisions, (paragraphs 3.7, 3.9 3.11 and 3.12) expressly emphasised the importance of providing the means by which a person's statutory rights to accessing information could be achieved when the respective person is incapable of initiating or evaluating such information themselves.

  1.4  It should be noted the Data Protection Act 1998 does not make any special provision for requesting access on behalf of mentally incapacitated persons. This inequitable, and most unsatisfactory, situation has been acknowledged by leading legal practitioners (see Community Care and the Law, by Luke Clements, page 36, paragraphs 2.28 and 2.29).

  1.5  We have direct experience of invoking the Court of Protection's assistance by way of requesting a special Order. The Court were most helpful; but, within the limitations of UK Law, were only able to issue a Direction to receive—not compel disclosure of—the documents requested (see Annex 1).

  1.6  The personal records involved—including an important Abuse Report on our relative who was subjected to ill-treatment in a Care Home—were only released after nearly two years continuous legal representations; and commencement of a Human Rights Act action at Strasbourg.

  The Draft Bill does not contain any express provision, as previously recommended, to overcome this problem. This is a serious omission which should be corrected, possibly, by an additional Clause to Section 17 of the Bill.

B.  MISUSE OF THE TERM "CARER"

  1.7  The term "Carer" has been defined in previous Policy Guidance such as Community Care in the next Decade and Beyond (DON, 1990,) as "a person who is not employed to provide care in question by any body in the exercise of its function under any enactment. Normally, this will be a person who is looking after another adult in the home who is . . . mentally or physically disabled . . .".

  1.8  Increasingly, in recent years, the term Carer has been arrogated by professional/service provider staff; and, in our submission, misapplied to paid support staff. In turn, Family Carers/Advocates appear to have become relegated to a lower category described as "Informal Carer". It is noted that the latter term appears no less than four times (see pages 44, 47, 48 and 50) in the Explanatory Notes to the Bill.

  1.9  Is a family who visits their son in a mental hospital, virtually every week of every month for over 38 years, and vigorously advocates for his interests—to be dismissed as "informal carers"?; similarly, those who struggle for nearly two years to obtain, on behalf of the mentally incapacitated person, access to the latter's Individual Care Plans/Assessments and an Abuse Report whilst living in the community care programme?

  To minimise future confusion, the term "Carer" requires unequivocal confirmation in the forthcoming legislation and/or explanatory notes thereto. The role, importance and particular contribution of Family Carers to decision-making for persons with severe or profound learning disabilities should be clearly recognised.

  Finally, whilst we acknowledge the Scrutiny Committee's time will be limited, we would much appreciate the opportunity to offer oral evidence in support of the above, and related, matters.

August 2003

Annex 1

Direction to receive documents

THIS DOCUMENT IS NOT VALID UNLESS IT BEARS THE IMPRESSED SEAL OF THE COURT OR THE PUBLIC TRUSTEE (IN THE BOTTOM RIGHT HAND CORNER) ON ALL PAGES

IN THE MATTER OF (name deleted, original available) ("the Patient")

IT IS HEREBY DIRECTED THAT:

  Beryl June Power of 5 Groesfford Park Brecon Powys LD3 7SF the Receiver in this matter is AUTHORISED in the name and on behalf of the Patient to inspect and to receive copies of the papers and documents and other information on the personal file held by the Social Services Department of West Glamorgan County Council and to receive on behalf of the Patient a copy of the Social Services report prepared as a result of an investigation carried out in 1995 by Mr Harper in respect of (abuse venue deleted; original available).





 
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