Medical records of adopted children
‘Local authorities must make provision for the parents of children given for adoption to deposit medical records which may include samples of their DNA as part of the child’s medical record to be made available to the medical practitioner responsible for the child.’.—[Tim Loughton.]
With this it will be convenient to discuss the following: New clause 21—Duty to keep records—
‘(1) It shall be the duty of every local authority and voluntary organisation that looks after or provides accommodation for a child to maintain records prescribed by regulations.
(2) Regulations may provide for the transfer of records held by a voluntary organisation to another voluntary organisation or local authority.’.
New clause 22—Duty to provide access to records—
‘(1) A post-care adult has the right, at his request, to receive from the local authority or voluntary organisation holding his care records:—
(a) all the information relating to his personal history;
(b) all relevant information relating to his family history.
(2) Subsection (1) does not apply to a request for information in circumstances where the local authority or voluntary organisation is authorised by regulations to withhold the information or any part of it.
(3) Regulations may provide for local authorities and voluntary organisations to provide appropriate support, including information and advice, to post-care adults if requested.
(4) The regulations may provide for circumstances in which the local authority or voluntary organisation holding the records may arrange for another local authority or voluntary organisation near the post care adult’s home to provide access to the records and support.
(5) In this section “post care adult” means a person aged 18 and over who has at any time been in the care of, or looked after or accommodated by, a local authority or voluntary organisation.’.
I do not wish to delay the Committee for too long. New clause 16 is a probing amendment. I am in sympathy with new clauses 21 and 22 in the name of the hon. Member for Mid-Dorset and North Poole and others. I want to focus on health records. We had a discussion on that and the problems that occur on the Adoption and Children Bill. I am involved with a charity called Cardiac Risk in the Young, which will be holding an annual reception on the Terrace before long. It deals with the tragedy of young people who drop down dead all of a sudden due to a congenital heart defect about which they knew nothing, often relating to problems inherited from parents or defects that could have been detected or been scanned for and dealt with before the fatality happened. As we discussed during the Adoption and Children Bill, there are cases of children who develop a genetic disease later in life, without any knowledge that they may have inherited it from a birth parent with whom they no longer have contact and/or knowledge of.
The purpose of new clauses 21 and 22, which were proposed by BAAF, is to ensure that the lifelong needs of post-care adults are not overlooked during debates on the reform of the care system. It is paramount, when appropriate, that a child who has been through the care system should be able to access the medical records of their birth parents, or that those medical records should be available to the person responsible for caring for that child, so that when the child becomes an adult he or she can refer to them to see whether they mention anything that might prejudice their health later in life.
The idea of a genetic key has been mentioned. For those children who end up in the care system and then go for adoption, there should be a formalised system for keeping their health records and the records of their birth parents safely, so that they can be made available to the children and the children’s health advisers when appropriate. Although it is common sense for that to happen, it does not happen often enough.
When children are pushed from one placement to another, and have unsettled lives, the capacity for medical records to go missing is exacerbated. We know that a large number of children in the care system have not had the basic vaccinations, so their health outcomes are already prejudiced. They do not have access to some of the basic medical preventions that are available to the rest of the population.
The new clauses are probing, to see whether such provisions are necessary and, if it is not already good practice, whether the Government would consider them as a basis for spreading good guidance, so that a directive along those lines could be issued to local authorities.
I shall speak to new clauses 21 and 22. I do not disagree with anything said by the hon. Member for East Worthing and Shoreham. The purpose of the clauses are linked. The first is on the duty to keep records. Whatever should be in those records and how it should be transferred would, I assume, be dealt with in regulation. The details and possibly the medical records, too, could be the subject of regulation. The second is on the duty to provide access to records, on which I particularly want to speak.
It is estimated that 350,000 adults in the United Kingdom have spent all or part of their childhood in foster or residential care. The sharing of memories and photographs—all the things that we do with our own families—are not possible for most post-care adults. They may in due course want to make contact with parents and siblings, but that might not be possible. Each year, an estimated 4,000 requests are made by post-care adults for access to files. They do so for many reasons—to rebuild part of their lives, to build self-esteem or because they need to know about their past identity and relationships.
Requests by post-care adults for access to childhood information held in records retained by the local authority come under the Data Protection Act 1998. That Act, however, is not an effective way of meeting the information needs of post-care adults. It imposes restrictions on birth party information, and it does not take account of the plight of post-care adults who want to obtain their family history and details of their parents and siblings.
For many years, rightly so, legislation has been in place to assist adopted people to access support. Today, I am looking for equality of treatment. The same opportunities do not extend to post-care adults, and it could be argued that until they do so those adults will continue to receive a second-rate service, compared with adopted people.
I wanted to intervene to say that I support the new clause, which is why my name appears against it. I do not wish to make a speech. Is not the crux of the matter that there is a legislative framework for adopted children as adults to access their records and learn more about their history, but there is no such framework for adults who were children in care? Those adults have to fall back on the Data Protection Act, which was not meant for that purpose and actually gets in the way.
I thank the hon. Gentleman for his intervention. He knows that I am using the BAAF briefing, so he probably anticipated where I was heading. There is an action on access group which is calling for a legislative framework that would enable post-care adults to access information so that they could have a coherent and personal account of their origins and time in care. It also calls for the availability of advice and support that post-care adults can request if they wish, including intermediary services to help to locate and contact family members, and for an audit of statutory and voluntary sector records to be undertaken and published, to enable post-care adults to know where records can be found. Clearly, a lot more needs to be done for that group of people.
I would like to pay tribute to my noble Friend Baroness Barker who has raised the issue on a number of occasions in the other place, most recently during the passage of this Bill. Lord Adonis said that the House of Lords was
“indebted to the noble Baroness, Lady Barker, for raising the critical issue of how best to ensure proper access to information and related services, not only by those who have been adopted but by those who have been in care.”—[Official Report, House of Lords, 14 June 2005; Vol. 672, c. 1189.]
Therefore the consideration today is: “It is a critical issue, but can it be addressed please?”
I constantly come across explanations of how there is already an appropriate strategy framework in place to enable post-care adults to access their case records, and that there are already arrangements for the placement of children, and general regulations and data protection legislation. However, I am told by those with practical experience that the provisions are not working. They do not address the particular circumstances of post-care adults, and are simply inadequate. I will not go on at length about that inadequacy—I want the Minister to go further than what already exists to address the point that the provisions are inadequate, and to tell us what can be done to improve the situation. The important point is that we need the legislative framework for adults who were looked-after children. It is really important to progress that.
I will do my very best to satisfy as many people as I can before the bell tolls.
On new clause 16, we agree that where a child is adopted it is important for their GP to have full and accurate medical information in order to meet that child’s health needs. It is equally important that local authorities have full and accurate medical information about a child where adoption is the plan, and that the child’s adoptive parents are also given that information. That provision already exists in regulations, and I will not go through the regulations now because I seek to keep the Committee happy. However, I shall write to everybody and set out—perhaps in full—what those regulations are and why I think that they are satisfactory. There is nothing to prevent birth parents from approaching the local authority and asking it to pass on new medical information to the child’s adoptive parents and GP. There should be a balance between the interests of the child, and the privacy of birth parents and the confidentiality of medical records. That is a difficult balance to strike. However, local authorities are required to record detailed information about a child’s health and medical history, and must arrange for regular assessments of the child’s health and take health matters into account in regular reviews of the child’s case.
New clauses 21 and 22 relate to looked-after children. Looked-after children are not covered by the support and assistance under the Adoption and Children Act 2002. The hon. Lady mentioned intermediary services which was my own addition to that Act. I accept that formerly looked-after children do not have access to the same services, but there are important distinctions between the two groups. Looked-after children did not change their name or identity. The overwhelming majority returned to their families during the course of their childhoods. That is a vital distinction.
Most children do not typically spend a significant period of time being looked after before a permanent arrangement for their care is made either with a parent, another family member or an adoptive parent. These two new clauses are not necessary because the appropriate statutory framework exists. I shall not set out again what that is. The hon. Lady is familiar with it and I will again write to members of the Committee with the full details of the regulations that I am talking about.
There will be individual adults who are trying to piece together information about their time in the care system from a long time ago. Although the Data Protection Act provides for access to personal information, if records are incomplete then, sadly, no new legislative provision would be able to conjure up non-existent records. Record-keeping is now much more consistent. The guidance is clearer than it has been in previous decades. The Children Act 1989 sets a better framework than previously existed. The integrated children’s system and the detailed resources being produced to support it aim to improve record keeping still further.
While I do not agree with the hon. Lady that we need primary legislation, we recognise that practice varies. Existing guidance already highlights the need for local authorities to handle these issues sensitively and provide appropriate support. In the planned revision of the statutory guidance to the Children Act there is an opportunity to update the existing guidance to local authorities and to ensure that the current best practice is promoted more widely. I will seek to do that.
The briefing from BAAF, to which the hon. Member for Mid-Dorset and North Poole referred, anticipates that the Minister will say that the guidance is adequate, so there is no need for primary legislation. Does he not understand that BAAF, Barnardo’s, the Care Leavers Association, the Catholic Children’s Society, the Children’s Society, the National Children’s Bureau, the National Leaving Care Advisory Service, the NCH, the Post Care Forum, Voice and the Who Cares? Trust all say that the present legislative framework is out of date and inadequate? It has been overtaken by the Data Protection Act 1998 and that gets in the way of people having access to records that are relevant to their own identity.
I realise that I am outnumbered. I take the hon. Gentleman’s point very seriously and I will look carefully at what they have to say. But I also give an undertaking that during the planned revision of the Children Act statutory guidance we will look at updating the existing guidance for local authorities and we will try to ensure that current best practice is promoted. On that basis, I hope that hon. Members will not press these new clauses.