Situation: Maria Bossingham is 51 and has been receiving specialised intensive day care at a nearby hospital for several years for her severe multiple sclerosis. She lives at home with her husband of three months, Nathan, 53, who has become her main carer. Maria lived with her sister, brother-in-law and two children up until meeting Nathan six months ago.
Problem: Nathan, whose drinking problem had been kept from Maria before their marriage, has become verbally abusive to her. Maria’s condition (which continues to deteriorate – she has recently had a catheter fitted) requires a comprehensive community service but one which had relied on strong contributions from her family members. Nathan could not or would not help out to the extent required – and Maria’s family, who dislike Nathan, won’t go to her house. Paid carers were also on the receiving end of Nathan’s abuse and aggression and felt unsafe at the house. Following an argument in a pub, Nathan was badly beaten up and hospitalised. Maria’s own condition worsened without Nathan, but her family rallied and put her up for a couple of nights. Although unable to talk, Maria mouthed her words and it was clear she did not want to go to hospital or to stay at her sister’s – she wanted to be at home when Nathan came back. However, health and social care professionals are worried that her being at home alone might be too risky – but Maria remains adamant.
The care manager would need to ensure that Maria received a full care needs assessment and that risk assessments were completed, given her vulnerability. A carer’s assessment would need to be offered to Nathan – we could liaise with the hospital social worker to outline the home situation during the discharge planning process.
Has Nathan begun the caring task without necessarily having had any experience, let alone training? For some people, caring can be a positive experience, bringing them closer to the people they are caring for – with Nathan it may be a painful ordeal. Does Nathan receive enough support and realise there are support networks other than Maria’s family?
We could look at whether Nathan recognises that he has a drink problem and if he has been offered help with this. The hospital social worker could make the necessary contacts. Constructive counselling could put a positive slant on what might seem to Nathan to be a seemingly negative situation. We would also need to consider Maria’s views on this – would it have made a difference to her if she had known about his drinking or has Nathan provided her with an opportunity to leave her sister’s care?
A vulnerable adult’s case conference could be convened with a multi-disciplinary panel to determine the best way forward and whether the home environment was the safest for Maria, who would need to be supported to express her views and wishes. An independent advocate could be introduced if that was her wish or a key worker from the specialist intensive day care hospital that knows her well. A long-term strategy could be built around Maria’s needs and wishes to decide what is best and be highlighted in the care plan.
Maria’s day care could be increased or short breaks introduced using direct payments. As Maria’s health needs increase then the district nurse and care manager’s regular visits would ensure strong monitoring took place through care plan reviews to ensure that Maria’s safety, and both her own needs and those of Nathan, were being met.
If Maria insisted she return home, we would need to ensure “call” systems are in place should she need to summon help in an emergency.
When Maria married, she left her sister’s house and moved to a new home with Nathan. Is this new accommodation meeting Maria’s needs as a disabled person and Nathan’s needs as a carer? To find out, the occupational therapist needs to talk to both Maria and Nathan.
Some questions include: how independent does Maria want to be? Are there certain activities where it is important to Maria to be independent and others for which she prefers to rely on carers? When does she want help from Nathan and when is it better to have help from a community carer? What does Nathan want to do for Maria and are there tasks he just can’t do?
How does the layout and design of their new accommodation affect Maria and Nathan and is disability equipment available? If the right equipment isn’t available, just being “at home” could be difficult and stressful for both of them. Unsuitable accommodation may restrict Maria’s independence and make ordinary, everyday activity unnecessarily difficult. The OT will help Maria and Nathan to identify the areas of difficulty and work with them to find solutions. For example, it may be that the kitchen needs to be altered to allow Maria to prepare meals. Or it might be necessary to install specialist equipment to allow Nathan to help Maria to move from a wheelchair to a bed or chair.
Of course, Maria and Nathan may have moved to accommodation that has been constructed to mobility standards. But are they finding the equipment and adaptations helpful? Or are they struggling to cope with unfamiliar equipment that neither is sure how to use? The OT needs to sensitively check that specialist equipment is appropriate for Maria and being used correctly and confidentially by Nathan and carers.
Maria communicates by mouthing words. The OT will discuss communication issues with Maria. Is she finding communication difficult? Does Maria want to be referred to a speech and language therapist? It might also be appropriate to ask Maria about her social and leisure time needs. Is there a need for advice about accessible transport and venues? Does Maria need special equipment to enable her to join in with leisure and social activities?
Maria should have the right to live the way that she wants, writes Simon Heng. She should have the right to make choices, even though these might appear to be ones fraught with risk. Now that she has her own home, she deserves support to enable her to stay there. She also has the right not to be abused by Nathan. With rights, though, come responsibilities. If Maria is to accept help from carers, paid or unpaid, she has a responsibility to ensure their safety in her home, and to make sure that they feel safe too.
Nathan knew about Maria’s condition before he married her, and one would have hoped that they would have talked about his future role in caring for her, as well as all of the other aspects of their future relationship. They must have known that the relationship would face tough challenges from its beginning. What has changed for him since their marriage? Has anyone talked to him about his drinking, perhaps with a view to offering Nathan help to change his drinking behaviour? How does he see the relationship from this point onwards?
It would seem that Maria is competent to make up her own mind. There may be many reasons why she wants to stay with Nathan. Maybe she doesn’t want to give up on their marriage after such a short time. Perhaps a difficult relationship, for her at this time, is better than no relationship at all. As her condition is deteriorating, she may be feeling that Nathan is the only person who is able to give her the support and comfort she needs.
If it can be shown that she is fully aware of the risks she is taking, I would suggest that she is entitled to follow her chosen path, whatever misgivings we may have. For Maria’s choice to be informed she needs to be aware that social care professionals can’t guarantee to her that paid carers would be willing to enter her house and as a result she may be at risk of receiving inadequate care.
She may also be at risk at least of neglect, and at worst, of mental and physical abuse if she stays in her home, because Nathan has an alcohol problem that includes abusive behaviour, and (probably) a chaotic lifestyle.
This is just the type of case that would benefit from being on the Pova (protection of vulnerable adults) list, which, like the child protection register, will be shared by all community services, including the local police force. Perhaps this would ensure that Maria’s safety could continue to be monitored effectively.
Simon Heng is a disabled service user.