Situation: Valerie Huddlestone, 91, has not been out of her house for more than 20 years. Her husband, Harold, 89, has been doing all the caring. Valerie would call her nephew and next of kin, himself 72, who lives some 30 miles away to say she wasn’t being looked after properly by Harold. They would visit increasingly regularly as they were very worried about what was happening.
Problem: After being admitted to hospital, Harold became increasingly confused. The hospital was keen to discharge him home but the hospital social worker was worried he would not cope. Harold said he would like to live somewhere he did not have to do all the work and seemed relieved that he did not have to go home to look after Valerie. The nephew began looking for residential care for both of them. A double room was found in a home nearby and Harold liked it.
Meanwhile, unknown to the nephew or hospital social worker, Valerie has been persuaded by a community support worker, working with the only other family member, that she and Harold would be better off at home with a package of support. The other family member wants to take control of the couple’s financial affairs (and has a benefit fraud conviction). The nephew feels pushed out and powerless. He becomes distressed at feeling he has let down his mother’s only surviving sister very badly. The hospital is now looking for a nursing home for Harold as the community support package is not working.
One of the essential elements of good care planning is that the views of all involved parties are listened to and are used to formulate an agreed plan of action. Here it seems that decisions have been made without proper consultation and this has resulted in a degree of confusion, changes of plan and an unhappy result.
Valerie and Harold need a full and comprehensive assessment of their individual needs. This must take into account their needs as a couple and Harold’s needs as a carer which was his role for a considerable length of time.
Harold’s needs, fully assessed in hospital, should include a psychiatric assessment to establish the cause of his confusion. Does he have dementia or is there some other factor? Does Harold have capacity to make informed decisions about his own and his wife’s care? When he opted for residential care what were his wife’s views about this move?
The nephew is worried about the couple and is trying to resolve the situation as best he can. But he too needs some support. In addition there are significant protection concerns about the other family member who may or may not be encouraging the package at home so that he has easier access to the money.
The community support worker while supporting Valerie appears to be acting in isolation of Harold and the care planning that is happening around him. To bring together all these different strands a clearer level of care coordination needs to be established and I would suggest the hospital social worker is the person most appropriate to undertake this.
A planning meeting needs to be arranged so that all parties can be included in any decisions made with Valerie and Harold regarding their care. If necessary, advocates could be used where there are obvious conflicts of interest. This meeting would also serve to bring together all the professionals involved and allow the outcome of assessments to be shared.
The whole purpose would be to place Harold and Valerie at the centre of the planning process so that they can make as informed a choice as possible with regard to their respective futures wherever they may choose to live.
Had a community support package been arranged for Harold and Valerie, the district nurse would have been involved in several ways.
The nurse’s role would be to monitor complex care packages, working in partnership with Harold, Valerie and all others involved. The nurse would carry out a baseline assessment, which is then reviewed at each subsequent visit to determine how Harold and Valerie are coping at home. Also, as other nurses will be visiting Harold and Valerie, it is important all this information is written clearly, so that the nurse’s colleagues can make a judgement should the couple’s situation change.
It will always be the district nurse’s aim to enable Harold and Valerie to be as independent as possible in their own home. To this end, the assessment examines whether Harold is able to wash and dress himself, take his own medication, and make meals for them both. If the nurse found he could no longer carry out these aspects of daily living, a discussion with Harold, Valerie and their family would address these matters.
Had the community support package not included home care support, the nurse would then, with Harold and Valerie’s consent, refer to social services. This is usually done through a call centre. The nurse may also request an assessment by the occupational therapy team for equipment, such as bathing aids, to enable Harold and Valerie to remain safe and independent in their own home.
In situations such as that of Harold and Valerie, the nurse would also ask for a social worker to explore respite care. This may involve Harold and Valerie regularly going into a nursing or residential home for one to two weeks. The nurse may also advise Harold about the role of the welfare rights service to ensure he is aware of his entitlements.
The nurse would carry out blood pressure and blood tests for monitoring of long-term use of medication such as blood pressure and water tablets.
The nurse would work alongside Harold, Valerie, their family and all agencies involved to make sure the package was the best one to meet their needs. Should any party raise concerns, a review meeting would be held as soon as possible.
This case shows the need for a single assessment perfectly, write members of Knowsley Older People’s Voice. It is clear that information-sharing between the professionals from health and social services involved in the case would have helped to avoid the situation the family now face.
Harold has been the main carer for Valerie for a number of years but increasingly has felt burdened by the situation. The fact that Valerie seems socially isolated and has not been out of the house in 20 years could suggest that the problem may have existed for many years. With this in mind, it is a pity that support for the family was not in place at an earlier stage; this might have avoided the need for Harold’s admission to hospital. It would also have helped identify any problems in the care that Valerie was receiving from Harold.
The nephew is concerned about the situation but did he have the necessary information to know whom to contact in such a situation? Perhaps this highlights the need for information on services to be more readily available.
The issue of the family member liaising with the community support worker to persuade Valerie to accept a package of support raises cause for concern. The role of the support worker should be to assist the couple in the choices they make, not to be used by a family member to influence the situation. The fact that the family member is looking to take control of Valerie and Harold’s financial affairs highlights the potential for financial abuse. The family member may be keen to see Harold and Valerie remaining in their home to avoid the local authority charging procedures for residential care. Or is the family member looking to protect a possible inheritance?
The social worker needs to take the lead and hold a case conference with the couple and their nephew. Harold seems to have made a decision that he feels would benefit them both, but it is uncertain whether he is able to make an informed decision due to becoming increasingly confused during his stay in hospital. It is clear that Valerie should have the opportunity to have her say, without the persuasive influence of other family members. Valerie may have genuine fears about moving from their home, bearing in mind she has not been out of the house for more than 20 years.
Tom Best, Derek McEgan, Sheila Bersin, Cathy Ericksen, Kate Holt and Paul Mavers from Knowsley Older People’s Voice.