Hi,
Have any other families been told by their adult son/daughter’s Provider that they cannot see his/her support plan or any other recording because their son/daughter cannot consent to this?
If so, were you told at the onset of the Provider’s support that this was the case and that a MCA assessment and BI meeting would need to be held?
Kind regards,
Rosemary (Burslem)
Hello, my son has been in a supported living environment for 17 years, has complex support needs and is deemed to lack capacity, hence he has a best interest meeting when decisions need to be made. As his parents we have always been part of the decision making team and have a very good relationship with his care provider and the small team of staff who support him. He has an annual holistic review and although he hasn’t had a social worker for several years he does have a representative from the continuing healthcare team along with a rep from his day centre plus ourselves and members of his support team. At his review we go through his care/support plan and discuss what has happened over the previous 12 months in relation to his health and his social needs and we make plans and recommendations for the year ahead and his care/support plan is amended accordingly. It’s traumatic enough when we realise we can no longe care for our sons/daughters and go through the process of them leaving the family home and we need reassurance that they will receive a good standard of care and support. I would be very wary of any provider who denied parents the opportunity to be part of their son/daughters circle of support purely on the grounds of the over zealous use of the term ‘lacks capacity therefore cannot consent’. I would also argue that our sons/daughters may not consent to their parents being excluded.
Hi,
Thanks for the reply. We have been included in Reviews etc. It is just his “paperwork” we have not been allowed to see. They said it was due to GDPR. So other professionals could see it but not us! It’s a bit of a long story but I don’t want to go into any more details at the moment. I just would like to be able to show them that most (if not all) other Providers allow family to see support plans etc. even if their son/daughter cannot consent. We did finally get a BI meeting where everybody apart from the Provider agreed that we should be able to see the paperwork – but this came too late to help with the issue that we were experiencing
Kind regards,
Rosemary (Burslem)
This is a grey area in law. Unless you have deputyship for health for your relative they can refuse. However, during the assessment process the SW or Health should have integrated this ‘need’ for support into records ( could be viewed as a breach of the AIS,2016) to ensure information is provided in a format to meet their needs. If parents have a financial deputyship for their adult child it would not be unreasonable for them to access to care agreements as they need to report on changes/costs/care provision to the OPG?
Surely if the parents have welfare guardianship they have the authority to act on their adult child’s behalf and have legal right to see this documentation?
Upholding Article 8 of the Human Rights Act – the right to enjoy family life. This surely is only set aside when there is a reason to do so. Advocates offering non-instructed advocacy would work on a Human Rights Approach and support people to be involved with their family.
Peter Bates
Hi , If parents hold a welfare deputyship(OPG) for their relative it should be fine. Normally when accessing records the LA/Health will ask for a copy.
thanks
As others pointed out, you need to get Deputyship, and if your son or daughter lacks capacity for most decisions you should be able to get it not only for Financial affairs but for Health and Welfare. We had it for our son and it was very useful as you always have the option of going straight to the Court of Protection to back you up: we never actually needed to do this as everyone was aware we had it.
Health and Welfare took us a couple of tries to get: but (at least when we did it) we could do all the forms online and we did not need a solicitor, so the cost was not too high.
Yes - I was in this situation at the beginning of the March lockdown with my son. I asked to see the Care Plan by because I became aware that there were inaccuracies (wrong address for his dad) . I also asked to see the profile they had prepared should he have needed to go to hospital on his own because of COVID, and this request was also refused at the time. I felt it was very unfair while they were asking me to make End of life contingency plans.
We had to get the social worker and provider to agree it was in his best interests that I was allowed to see it - after they had asked my son and ascertained that he lacked the capacity to understand . Eventually we all signed a document, to the effect that it was in his best interests to let me see the paperwork, which is now held on record.
I understood my son’s provider felt it was to do with CQC inspections, box ticking. It is very difficult to deal with these things during these very restricted times.
Katharine (Slade)
Hi,
Thanks for replies. I know that technically the company was correct in refusing to let us see their paperwork. However, I felt this was taking things just too far. Although we have had to have MCA 2005 assessments and best interests meetings for other things we have never before had a provider who refused to let us see paperwork. Funnily enough they did allow us to see his Hospital Passport and Covid Grabsheet because it wasn’t their document – it was a document from our Health Authority. They had filled this in without consulting us at all and when I did see it I found that each document had my son’s date of birth slightly wrong. I told them and they amended it. I needed to see all the other documents because the service was being re-tendered and I wanted to see what they were going to hand over to the new Provider. It took ages to get the BI meeting when it was agreed we could see the docs. (We don’t have health & welfare deputyship because I know it is hard to obtain and we had never before encountered a situation where we thought we would need it.) The company originally said they would give the new Provider information a different format. Then they said they would not give the new provider any written information – they would just give them a verbal handover. The contracts department said they had to handover written information. So they finally handed it over to Social Services who passed it on to me and the new Provider. When I saw it I was shocked. There was loads of stuff missing. What was there was all out of date. My son’s d.o.b. was given as the same one I had corrected in the hospital passport. There were all sorts of other errors including saying that he had a benign brain tumour (which he has NOT got)!
I complained to the Company and detailed exactly what was wrong. They wrote back and said everything was fine, and said if I wasn’t happy I could go to the Ombudsman. I have written back and said I would give them a second chance to admit their failures because if I went to an Ombudsman or a Community Care Lawyer and was successful it would ruin their reputation.
In the meantime I am having to give the new company all the right information! They haven’t taken over yet (another long story which I have no time to go into but due to a misunderstanding with the last Provider) and my son has had to have an interim service from an agency. The new company are consulting us fully and are happily sharing their documents with us even though they know my son would be unable to consent to this.
I have formed my own conclusion about why the Company said we couldn’t see the documents – and I think it has very little to do with GDPR!
Kind regards,
BiRo