sharing information

[redsails]

hello, can anyone offer advice to my friend who is at her wits end. Her 60 year old brother has a learning disability and occasional night time seizures and lives in a supported living setting in a single person flat. He has just a few hours support a day plus shared night support, there are 10 flats in total. He’s always been a shy gentleman especially around people he doesn’t know although he does have a wicked sense of humour. Over the past year or so the people who provide his support have told his sister that he no longer wants to discuss anything about his health or his new day centre which is completely out of character. My friend has contacted the care provider several times asking about her brother’s ongoing health problems but is told it cannot be discussed as her brother has told them he wants to keep his health and social activities confidential. This seems at odds with his visits to his sisters when he quite happily tells her if he’s feeling unwell and shows no sign of embarrassment if she or her husband help him with his personal care whilst at their house. I’ve known the family for many years and am well aware that this gentleman answers certain questions in a way that might not be correct because he doesn’t want to get anyone, including himself, in trouble. It’s come to the point that she’s reluctant to ask him how he’s getting on at his new day centre or how he’s feeling in case she’s putting him under pressure, surely that can’t be right to be afraid of asking a perfectly normal question as to how his week has been. The care provider has said they will request an advocate to help solve this conflict. My friend doesn’t want to make decisions on her brothers behalf but would like to be kept in the loop regarding his health and social needs.

[MontyCat]

Hi. I am not sure I can offer much by way of advice, but the scenario of someone answering questions in such a way as to not create trouble rather than giving their own views, is familiar as this is what my 28 year old daughter (with a learning disability) tends to do.

I think if I was your friend, I would not be deterred from normal conversation with my brother just because of what the care provider has said, at least not without being sure that is in accordance with his wishes. Could she perhaps design a few questions to ascertain his thoughts on this, perhaps offering different possible answers with the assurance that there are no "bad" or "wrong" responses - she just wants to know what he thinks and wants?

These could be recorded (visually if he can write/tick boxes/circle options or on audio tape) and, if the answers indicate that his wishes are different to what the care provider is asserting she could then take the matter up with them and/or seek support from an advocate to explore the matter further.

Questions may need to be phrased or presented in more than one way to ensure consistency with responses - doing so will add weight to anything which contradicts what the care provider is asserting.

Hope this helps.

[redsails in reply to MontyCat]

thanks MontyCat. I’ll pass on your reply.

[redsails in reply to redsails]

incidentally, when he visits his sister he takes his evening medication which the care provider obviously trusts her to administer and yet they are adamant she must not ask any questions or engage in any conversation with him regarding his health.

[learner01]

It sounds suspicious to me that family are being excluded from involvement in the health care of their loved one. I think your friend needs to gently find out as soon as possible from her brother himself if that is what he actually wants. He may have been manipulated into saying so. She should record any conversation she has with him in case it is needed as evidence of his views later on.

Does your friend’s brother have capacity to make that decision ? If he has a learning disability he may not understand the possible consequences of excluding family from his healthcare which means he doesn’t have capacity to make that decision. In which case a ‘best interest’ meeting is by law supposed to be held which should include his family and friends interested in his welfare and a decision made that way.

My local NHS trust states that it is family that have the final say with regard to best interests decisions.

It may be that the care provider are acting illegally.

Perhaps Mencap can give some advice and support or Sibs the organisation that supports siblings of those with a disability.

[redsails in reply to learner01]

thank you so much for your information which I’ll pass on to my friend. She’s feeling quite overwhelmed at the moment but I’m hoping that the responses I’ve passed on to her up to now will help her formulate a plan of action for when she feels able to take her concerns forward. I’ve heard her mention the Sibs group but don’t know if she’s contacted them, I’ll ask her. Her brother has capacity in some areas but not in others, especially if he thinks he might get someone or himself in trouble. Thanks again for your advice.

[clkSibs Expert]

Hi Redsails Thanks so much for reaching out to support your friend. She is lucky to have you!

Our charity Sibs (sibs.org.uk) find that this situation is not uncommon, and we often hear from siblings who say that a health or social care provider has declined to pass information on to them, stating that their brother/sister doesn’t want them to know. Under the General Data Protection Regulation (GDPR), a person can decide who they do and don’t want to share information with, and this can include deciding not to pass information onto their family members.

However, what’s interesting about what you’ve shared is that this seems out of character for your friend’s brother as he happily shares information about his health when he’s with his sister in person. We also hear from many siblings who tell us that their brother or sister would say ‘yes’ to anything in order to keep the peace!

It’s clear that your friend isn’t trying to make decisions on behalf of her brother or ‘take over’, but that she understandably has a concern and an interest in his health and social care needs. I suspect, too, that your friend has a lot of helpful information that she could also share with health and social care providers – the process is two-way.

Here are some suggestions of next steps that your friend could take:

- Write a letter to the care provider asking for health and social care issues to be discussed with her. Highlight the difference between how her brother is in person (i.e. happy to share information) to what she has been told by care providers (i.e. that he is not)

- Ask what methods of communication were used when this issue was discussed with her brother. How did they support him to fully understand what he was being asked? Were the long-term implications of his response made clear to him?

- Explain the reasons why it is in her brother’s best interests for her to be included in discussions. For example, these might include that she has a long-standing relationship with him and up until now he has been happy to share information with her; she understands his health and social care needs; she plans to be part of his life in the long term.

- Ask for a response in writing.

It is worth noting that whilst care providers change, professionals go on maternity leave or change jobs and day centres close down – it is a sibling who often has the longest standing relationship with their disabled brother or sister. The vital health and social care information that they hold follows them across the lifespan and offers a continuity of care that no one else can provide.

I hope that things improve for your friend – please do let her know about our charity and mention that she can join a sibling support group at sibs.org.uk/groups if she would like to meet others in the same boat.

Clare