Your opinion please

[Mummypam]

my 58 year old daughter is very happy living in supported living in with good care provider and mostly good staff.

However, her health is poor. She has pmld and is on oxygen at night. She is under the care of st thomas’s in London which I am happy about. My concern is care provider contacts the hospital regarding her care what if this happens…… or that happens……

However they do not pass on the information of what to do in an emergency, I do realise that it’s their responsibility, and it’s good that they get the appropriate information. But they do not pass it on to us, although they verbally tell us that they will be open and honest.

Do you think I am expecting to much.

[DrSarahmac]

Hi not clear on your question. I'm sorry I may have missed the point. Are you concerned that she is not being cared for adequately with her health needs or that you aren't allowed to know about health issues or that they aren't routinely letting you know when things happen with her health?

[Mummypam in reply to DrSarahmac]

Hi, I am sorry, I did not explain my issue clearly.

It’s, they aren’t routinely letting us know of any health issues. I think to be fair they know I am a worrier, and maybe dont want to cause me to worry. But I want and need to know, even if it’s what they decide it’s a small issue.

[DrSarahmac in reply to Mummypam]

hi again. It sounds like they are willing to notify you when there is an issue but that it isn't happening for some unknown reason. I don't think it's unreasonable to want to know and that doesn't make you a worrier. You're just a concerned parent. Maybe you could speak to someone senior at the residential home and let them know that you don't feel that you are being informed. Maybe if you have examples you could share those. Perhaps this could be formally included in the care plan so that if this happens again you can point to this formal agreement rather than referring to a conversation.

If you don't already have it it might be worth getting a health Power of Attorney (assuming your daughter has capacity). This would give you some form of legal status with regard to health decisions either at the home or in hospital.

Hope you get some answers.

[Mummypam in reply to DrSarahmac]

thank you very much for your reply.

No my daughter does not have capacity. however I am in the process if taking out court of protection, so hopefully that will make things easier to deal with. I. Am using a SEND solicitor to make the process easier.