My 60 year old brother has learning disabilities. He had a car accident at 4 years old and suffered a brain injury. My parents who have always cared for him are both in care homes and he is living independently for the first time. I have tried everything to get him support . SS , GP, and the learning disabilities service , but he refuses all help. He's verbally aggressive to me, and I feel unsafe around him. I have LPA for him. A recent routine bowel test, has come back abnormal, and further tests are now needed. He's incapable of carrying out the preparation for a colonoscopy, and I doubt he'd consent to one anyway. Does anyone know if there is a less invasive test that he could have? Although our relationship has broken down, I still want the best for him.
Colonoscopy : My 60 year old brother has learning... - Mencap
Colonoscopy
That’s a very tricky situation for you Hazel. It all hinges on his capacity to consent which it sounds as if he has in which case he is fully within his rights to refuse. Do you have any welfare guardianship rights? If so it’s something you could discuss with his GP.
I hope you find some answers.
Thank you for your reply. I have both financial and health LPA 's for him. He's refused to be assessed for mental capacity. He has capacities in some things, but not everything. I feel like everyone has failed him, including my parents for not preparing him for the time he would be on his own.
I would talk to the hospital. They often have LD liaison nurses so you could contact them or the colonoscopy dept. Explain the situation and ask if they are able to carry out the preparation at the hospital before the colonoscopy. Good luck and hope he is ok
hi Hazel please forgive this rather lengthy answer. This situation must be really distressing for you. It’s even harder these days, because austerity has cut carer support services to the bone and also probably cut learning disability services.
The first question I have is: the LPA you have - does it cover property and finance; health and welfare, or both of those categories?
The second matter - which needs expert input, with your assistance as someone who knows him well - is whether your brother has mental capacity to make two key decisions confronting him now. The first decision is whether to accept a certain amount of skilled, respectful and appropriate day-to-day care. The second decision is what medical tests he should undergo now that an abnormal test result is on his medical notes. Legally, mental capacity is always assessed decision by decision. The question is whether he’s capable of understanding the relevant issues if someone explains really carefully. But you say he’s hostile towards you personally. So he needs someone else who can set up a rapport with him. That’s a care need and a medical need, long-term. The key to offering any help is to earn your brother’s trust.
Your brother seems to me to be in mourning for his parents who are no longer able to act as carers. And I guess this must be painful for you too. Of course he would deny he needs any help.
Even if he doesn’t have mental capacity to make a given decision, the person who has LPA (or a deputy, if he didn’t give LPA for health and welfare decisions) has to make that decision in his best interest. “Best interest” has to include the wider consideration that it will be traumatic for him having someone walking in and taking over, possibly even if it’s a matter of doing the laundry but certainly if it’s a matter of subjection to an invasive medical procedure. If he feels bullied then it will be harder to get his cooperation in days, weeks and months to come.
So sometimes it might be better for him in the long-term if you as his attorney make a decision that appears not to be in his immediate medical interest. In this case, it might be better to delay an endoscopy until your brother has had a chance to get his head around what’s being asked of him. That’s why it might be worthwhile doing some initial groundwork to find him someone he can trust who can see him through this. There will be ways to make the process more tolerable for your brother. But I think he will need to feel nobody has snatched his autonomy.
If your son has any money, and if your LPA gives you control of it, you have the option of taking the initiative here. You could seek out a skilled, trained and vetted LD support worker (possibly via an agency - and there are more and more agencies who field such workers) and simply pay them to visit him each week for a one-hour, two-hour or three-hour visit on the basis that they’re respectful, non-coercive and kind in their behaviour. A truly skilled worker should be able to befriend your brother and gain his trust so as to enable him to receive some practical help. As time goes by, this can be extended to help in attending medical appointments or interviews with social workers and people from other government departments - maybe help in pursuing a hobby or gaining a new skill.
The point about sending a helper is that mental capacity shouldn’t be an issue. For his psychological well-being he needs to feel he can bar a person from his home, whatever the level of his disability, but gaining his trust is part of the job description. He needs to feel he has the power to refuse consent, whether or not he has mental capacity.
I pay £18 per hour to my son’s support workers, some from direct payments and some from his benefits, and an agency would charge at least £30 of which the helper would get about half. If your brother can’t afford private help, I think you should get back in touch with social services and with the GP. Don’t ring but send an email or fill in an online form in which you write that you’re concerned for your brother’s immediate well-being, and list all the ways in which he could be at risk living in his own without carers. Keep a copy of everything you write. The aim is to get a “team around the person” meeting, including a mental health professional and a social worker and a learning disabilities nurse. Failing that, a single social worker can make a judgement as to whether your brother has the capacity to refuse all help whatsoever. It needs to be arranged tactfully so your brother feels in control. You might need to stay very quiet, so your brother doesn’t interpret the meeting as an attempt by you to bully him. Or he might need to hear you tell professionals that he values his autonomy and to hear you describe his strengths.
If he’s on a low income, with very little capital or savings, then social services can set up a care plan of sorts and arrange direct payments so you can approach a reputable agency or possibly a freelance carer. The local authority will probably offer about half or one quarter of the ideal amount of money your brother should have. In my experience it’s better to have less help from a more skilled person possibly fielded by a well-run agency. Any shortfall in quality of care or supervision can make the whole setup come crashing down, because it will destroy your brother’s trust.
Whether it’s funded via the state or privately, a good agency should draw up a detailed care plan. A freelance carer might be able to do some of that. It’s a whole different skill set from direct care. The care plan should include the fact that your brother values his autonomy, prizes his independence and hates change but is going through a very uncomfortable transition period now that his parents are no longer living with him. The care plan would include maybe a few hours a week of visiting support workers, and the specified help would include someone taking time to set up a rapport to help him to understand the facts underlying ongoing decisions around health, care and domestic matters. Other help specified in the care plan would include someone to facilitate other day-to-day things your brother needs but doesn’t do on his own initiative. The care plan would state in detail what the helpers are supposed to do, how to navigate occasions when your brother refuses help, and whom they should ring if there’s a problem.
It might take a long time to put the care in place because of the need to begin by building up trust. But I think you need to start now, because the critical medical decisions can only be made if your brother has a part to play, in spite of his learning disability, and he will need someone to enable that.
Thank you so much for taking the time to reply. All advice is very helpful. I have LPA for finace and Health for him. I've tried all of the above, and have now had to step back for my own health. I manage his bills , get shopping and meals delivered for him, and my husband calls in once a week to check on the house. He alienates everyone who tries to support him . He's verbally abusive to me and other family members and has been physically abusive to me too. He could afford a private support worker,but refuses anyone to come to the house. His social worker, the disabilities service, and his GP have all said he has the right to refuse. SS only got involved when we had a crisis with him last year. I have got him an appointment to go and see the nurse in the endoscopy department next week, just to discuss his results. My husband can take him, if he can persuade him to go. My husband and I are nearly 70, and really aren't up to caring for him, after caring for both my parents for the last 6 years we're tired and stressed. All that said,I still want the best for him, as I know he's probably frightened and distressed .
are you sure he does not qualify for CHC funding. Might be worth having an assessment. If he qualifies all his care funding would be paid. Depends on his health needs which sound quite extensive. Mental health as well.
Good luck.
Update: My husband took my brother to hospital yesterday for a face to face appointment with a disability nurse to explain the colonoscopy process to him, and the reasons why he'd been recalled. It was suggested he could be admitted the night before to do the preparation, and have the procedure the next morning. The nurse was excellent, kind and gentle with him, and took 45 minutes to talk to him. He said no to having it done. I have written to his GP to confirm his decision. Is there anything else I should be doing?
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