After treatment for a brain tumour a woman and her partner want privacy. Or is there a more sinister interpretation?
The name of the service user and her partner have been changed in this article
SITUATION: Sue Miller, 45, has been desperately ill for more than a year following surgery for a brain tumour. She has had nine operations and been in intensive care and high dependency units for six months. Rehabilitation has been slow and difficult. As a result of these operations, Sue now has little sight and her hearing has been impaired. She walks very slowly with a walking frame. Her short-term memory is poor and she has seizures frequently, although these are starting to be managed by medication.
PROBLEM: Before her illness Sue was a successful interior designer with a portfolio of clients. She had won awards for hotel and shop designs. Sue’s partner, Jane, has persuaded her to hand the running of the business to a friend so she can concentrate on getting well. A number of adaptations have been made to the house to accommodate Sue’s needs and, following several trial visits, Sue is now at home permanently. Jane has said that they do not need interference from social services and they are sick of hospitals.
Sue’s brother and sister have said they are worried they can’t get in touch with Sue and that Jane seems to have assumed control of all aspects of Sue’s life, including day-to-day care for her. While they can understand this may well be a reasonable response to a life-threatening illness, they are worried that Sue could be at risk from Jane.
Sue has experienced a traumatic episode in her life, the consequences of which will remain with her forever, and are currently affecting the lives of all who care for her. It is perfectly understandable from Sue and Jane’s perspective that they wish to achieve some sense of normality in their life and that this does not include social services or hospitals.
There are many services and resources that may be available to Sue and Jane but they would need to want to engage with social services in order to participate in an assessment. An outcomes-focused assessment would be undertaken that would put Sue’s needs, aspirations and views about service delivery at the centre of the process. Undertaken sensitively this could be a very empowering experience for Sue; she may find it useful to utilise the support of an advocate from her local Centre for Inclusive Living.
The issues raised by Sue’s siblings need to be handled very carefully as they could seriously jeopardise any future working relationship between social services and Sue, which in turn may be detrimental to the service that she is prepared to accept. First, it will be important to establish whether Jane is at risk from Sue; what is the evidence?
Sue’s family may have difficulties in accepting her relationship with Jane and the choices that she has made about her life. There do not appear to be any concerns around Sue’s capacity to make informed decisions, although she is dependent upon Jane, and because of her sensory impairments, communication with extended family will be difficult.
Any allegation of risk or potential abuse must be treated seriously by social services and it is important to adhere to a protection of vulnerable adults’ procedure. However, a good procedure will allow for professional discretion and should enable investigating staff to take account of all the circumstances involved in that individual’s life.
But unless the investigation reveals grounds for legal intervention (not apparent in this case) then monitoring and review are often the only actions available to social services departments. In these circumstances the way forward appears to be in establishing an effective partnership with Sue and Jane.
It would be important to make contact with Sue and Jane as soon as possible. Jane may not be aware of the wide range of services, support, equipment and advice that could be offered. Contact would also be necessary to establish whether the allegations made by Sue’s brother and sister would trigger adult protection procedures.
It may be that a good way to begin intervening would be to discuss Jane’s needs rather than Sue’s. Jane, as Sue’s main carer, may have needs in her own right. She may be employed and have difficulty in managing both her own work responsibilities and Sue’s care. She could have a disability, which could cause difficulty in providing adequate care for Sue and herself. She may have given up employment to care for Sue and not be claiming benefits for either herself or Sue. A carer’s assessment could highlight Jane’s needs and trigger services and support. It could also diffuse some of the hostility that Jane feels toward social services.
It would then be important to talk to Sue about her needs and to ask if she wished to discuss them with or without Jane being present. Sue could receive direct payments to meet her sight and hearing needs. This would allow her to be in control of who she employed.
A communicator guide or intervener could help her to take back some control of her business by assisting her to communicate with clients and to help her receive the information she needs regarding accounts and costings. Specialist computer software could be provided to assist her to read large e-mails or designs. A screen reader could also be provided to allow her to project correspondence or objects onto a TV screen magnified up to 30 times.
Her hearing needs could also be addressed by the right equipment and Sue may be eligible for assistance to pay for some of this.
Rehab workers could assist Sue to regain skills in the kitchen and around the home and begin the process of allowing Sue to build her confidence and independence.
After receiving direct payments from social services, Sue may be eligible to receive Independent Living Fund payments which would allow her to take control of employing staff to assist with her physical needs. CC
Like thousands of other people whose contributions are rarely recognised, Jane has taken up the role of sole, unpaid carer for her partner, writes Simon Heng.
And while she and Sue might have been grateful for the intensive interventions that saved Sue’s life and enabled her to recover enough to return home, they may still feel that those interventions were intrusive and gave them little control over their lives.
After such trauma, it is a relief to be able to close the front door on the army of well-meaning social workers, occupational therapists, doctors and nurses, even friends and relatives; to be able to say: “The worst is over. We can have some time to ourselves, to learn how we are going to deal with our changed circumstances.”
It can also be difficult to show someone how much you love them in the middle of a busy hospital. It’s an understandable first reaction on returning home, to haul up the drawbridge and say “leave us alone.”
Sue and Jane are more fortunate than most couples in their situation, in that they probably have an independent income, through Sue’s business, which means they might have less reliance than other people for benefits, and might be able to afford the other additional expenses that are incurred with a disability.
Jane feels that she is able to cope with Sue’s care needs on her own at present. Help is available, even for people with their own income, like disability living allowance and the Independent Living Fund, but to access these sources of funding, or to extra care, one has to sacrifice one’s privacy completely.
I can’t think of anyone who would do this if they had a choice.
If there were no signs of abuse, and there were no reasons for ongoing medical or nursing care, social services would, I’m sure, have let Jane and Sue know what help could be available to them.
Sue’s brother and sister are, understandably, concerned about her, but is there any basis for their fears? Were they in close contact before Sue’s illness? Would they feel any different if Sue had been in a heterosexual relationship?
Perhaps someone needs to discuss the situation with the local vulnerable adults protection team, who will have their own assessment process, and, hopefully, the expertise to address the issue thoroughly and sensitively.
Simon Heng is a disabled service user and a Community Care columnist