Information on specialist assessments withheld - advice needed

[ClArabelle67]

Hello

Has anyone had experience of adoption and finding out later that specialist assessments and diagnosis were withheld?

I made the point only because I am aware of mistakes being made, though hopefully not by those who specialise in the area. I agree with what you said about trauma linked to separation. I also think that taking all this at face value it is appalling that the f2f contact which was initially agreed, has not happened. I think that the points of view expressed by posters on this thread about not sharing information and not wanting a working relationship are very valid as the views of the individual posters, but they are not views which are held across the board. If a working relationship is possible, depending on the circumstances and the BF then I would say that that would be the ideal.

@arabianelephantclock, what I find astonishing is the peaditrician who completed the adoption medical absolutely swerved the diagnostic reports and recommendations. I was in a very difficult position as a professional I’m aware of the importance of timely, early intervention in autism. It was a difficult choice to make to contact the GP, and of course data protection means they could tell me little other than they’ve received the email with the attachments. My LA had the nerve to say ‘ the adopters would like the diagnostic reports’ without acknowledging their statutory failures. I guess our culture is such that finances are the bottom line.... if they deliberately choose despite their duties to list the diagnosis on a matching profile, and record in minutes of IRO hearings that AFs will be informed ‘after the placement’ - and then actually acknowledge that they’ve failed to even do that, then your left banging your head against an imaginary wall. I didnt feel there was any other avenue other than to contact the GP - and believe me I left it for months while I communicated with the LA. My primary and only goal was to give the AF the information they needed to make informed decisions about this beautiful young boy.

@fasparent, I hear what you are saying, but none of the legislation you’ve mentioned is applicable in this situation; I no longer have PR so cant advocate legally for the children’s rights. So, yes, legally they were entitled to all sorts; and at a minimum their specific diagnosis being on their matching profile. But I’m not legally entitled to advocate for them any more. All I can do is try to let the APs know that the diagnostics and recommendations were withheld. They have the power and the rights to pursue that, not me.

I feel like a lot of people might have misread what the OP was saying ? If she passed on info about the child, the least the adoptive parents can do is say "thanks for the info about little Jamie, we got it."

Not doing that is cruel, as it leaves the grandparent wondering if the adopters are aware of the diagnosis and able to provide adequate care.
It would also be stupid as presumably the grandparents will keep trying to pass on the info until they have confirmation that it was received.

It's not a breach of the child's privacy as the adopters won't necessarily be sharing what treatment they're intending to put forward.

I mean, if we go that route maybe then biological parents should complain that their privacy is breached when THEIR medical history (not the child's) is shared with adopters. In fact I can't see why anyone other than the child's GP should have any access at all to biological family info, unless the bio family specifically consents to this info being shared.

@Wintersun13 the only medical history that adopters get about the biological family is what the biological family chooses to give. Most adopters have no idea if there is a history of strokes, heart disease, diabetes, etc, within the family. They are frequently only told things that social workers know, often because they are part of the reason for removing the child in the first case. So that would mostly be mental health and addiction issues. Some birth families disagree with their children being fostered and adopted and so refuse to discuss anything like this with social workers. Other people just don't view their health issues as relevant because they have lived with them for so long they've forgotten they exist. My mother is a good example of this. She was applying for carer's allowance because she has limited mobility in her legs so in her legs. When I read through it she'd not mentioned her heart disease, history of mini strokes or a myriad of other health conditions. She'd also failed to understand and explain just how limited her mobility is because it had happened so gradually she was used to it and considered it normal.

@Wintersun13, there is a standard adoption medical form. This should include any significant health of the birth parents and wider family, including any diagnostics. in terms of the child, a summary of their health and development as well as any specialist assessments, interventions and diagnostics and recommendations. These should be placed on the child’s medical records, until the child reaches 18 those with PR are entitled to see these at anytime.

With regard to BF health, CS have more often been involved for a while and GPS/Specialists should have been involved in any child protection conferences and can share info about the parents health if it i seems considered to impact the children.

The adoption profile should contain info regarding diagnostics/assessments/ related behaviours and planned I terventions.

Any SW reading this will know this is the case.

AP are fully entitled to see everything CS have on the child’s file. I’m aware that CS file often fall well below the required standard.

And yes, you are correct. I do not expect that the APs share any info about interventions, but I do hope they let me know at least they’ve received the reports, and that they feel comfortable to ask me any further questions at any time, should they feel it necessary and helpful in understanding and supporting the children (not only in terms of SEN, but in relation to life story work.)

With regard to BF health, CS have more often been involved for a while and GPS/Specialists should have been involved in any child protection conferences and can share info about the parents health if it i seems considered to impact the children.

Information about parents health would only be shared by GP/health if it presented a risk to the child, eg parental drug use during pregnancy. I wouldn’t expect the parents medical history (eg genetic risk of heart disease etc) to be shared without permission - not least because the parents themselves may not be aware, or may not want even more information shared about them. Unless the information is relevant and proportionate to the risk the parents present to the child it won’t be shared without permission.

In some cases SW manage to do some really good work with birth parents - we got a lot of information about the birth family entirely due to some excellent social work - but that’s not always the case.

The correct approach is laid in the CORAM health assessment guidance.

Consent to access health information
• In order to meet standards set out in national guidance, information on past health history, including birth and family history, is required for completion of the health assessment and summary report, and should ideally be collated prior to the health appointment; CoramBAAF Forms M (mother), B (baby) and PH (parental health) can be used to collect this information. In addition, information held in the GP records together with other available medical and health reports, particularly where the child has a disability or serious medical condition, should be obtained.
• In Scotland, the Adoption (Disclosure of Information and Medical Information about Natural Parents) (Scotland) Regulations 2009 SSI 2009/268, may be helpful in obtaining certain medical information about the child’s family, if adoption is the plan for the child. Regulation 11 says that where the agency has not been able to obtain information about whether there is ‘any history of genetically transmissible or other significant disease’ in the birth mother’s or father’s families, a medical practitioner, such as a birth parent’s GP, must disclose such information to the adoption agency on request.
• A signed CoramBAAF Consent Form should accompany the request to complete Forms M, B, PH, IHA-C and IHA-YP (young person), to facilitate access to additional child or family health information.


That piece of legislation relates to accessing adoption records, and regulation 11 to provision of specific medical information which is held confidentiality on file for the adopted person to access once they reach majority - it doesn’t allow for that information to be held by or passed to a third party. As a matter of course, the LA would tend to use Reg 11 powers if they had reason to think there was something genetic or a hereditary in the health history that the parent wasn’t disclosing, but that wouldn’t apply to all children placed permanency. As an adoptive parent I wouldn’t have access to that information.

I’m not sure where you think APs have a right to see everything on a child’s file? It’s certainly not the case in Scotland.

The legislation referred to is the placement and planning regs - these are pre adoption regs. The above Is taken from the guidance in relation to the completion of LAC and adoption medicals for children. its nothing to do with adopted adults seeking info. All the BAAF forms are on the coram site.

Regarding parents’ rights to access their children’s records, including health, education and social care is here

childlawadvice.org.uk/information-pages/access-to-information/#Childrens-Services-Records

its nothing to do with adopted adults seeking info.

The first 10 sections of that legislation outline the circumstances in which someone can apply for access to adoption records. Section 10 is clear that neither adoptive parents or adopted child have an automatic right to medical information about birth parents, section 11 outlines circumstances in which medical information can be held confidentiality on file. In practice, those circumstances are pretty limited.

its nothing to do with adopted adults seeking info.- I was referring to the placement planning regs.

And the first 10 sections do address the adoption agencies requirements to share information where a request is made, including those under 16, and specifically mentions providing information where the person is seeking support via the adoption support fund.

We are getting bogged in legislation which is getting away from the point; children and their parents have a right to request information held on file by children’s services. CS must disclose this if considered to be in the child’s best interests while ensuring the anonymity of birth families.

But prior to that, during permanacy planning there is an expectation that the SW, along with TAC make reasonable efforts to obtain family medical history, to accurately record and consider that when placement planning and matching.

I don’t think I’ve said anything that contradicts that, in fact I’m pretty sure that’s been my position all along.