Too scared to accept help?

Case study

Situation: As a child, Ray Hillier, now 63, suffered from polio. His treatment then included spending time in an iron lung ventilator. However, after lengthy treatment and rehabilitation he has led what he has called an “ordinary, normal adult life” with no medical or social care input. He has for about 18 months been caring for his wife, Shirley, 72, who has progressive dementia.

Problem: In the past year or so he has been feeling physically drained. He struggles with the physical side of Shirley’s care and has become more tired, lacking in energy and feeling weak. He has been having particular problems with his joints and complains about pain in his muscles. Most worryingly he has been getting out of breath and says that he feels like he’s “on 60 fags a day” and yet he doesn’t smoke. A niece, an only relative who lives more than 100 miles away and was on a rare visit, convinced him to see if social services could help. However, Ray believes that he has used the state enough as a child and doesn’t want to “fail” again. During an initial visit to the couple, a community care worker, who is communicating with the niece by phone, felt Shirley looked undernourished and dishevelled. An already uneasy and agitated Ray took exception to this and not only repeatedly told the worker to “f*** off out of it” but took a swing as well. The worker fled and is now unwilling to return.

Panel responses

Stuart Drabble
There is clearly a need for Shirley, as a vulnerable adult, to receive a full assessment for care services. This could be difficult to perform, given Ray’s hostility to social services. However, if abuse is suspected, then adult protection procedures should override Ray’s wishes to be left alone. Ray would also benefit from an assessment in his role as a carer.

He appears to have serious health problems and is finding difficulty in providing the necessary care for his wife. He clearly needs to seek medical advice regarding his symptoms, which could be the long-term effects of polio or could be signs of acute anxiety due to his inability to cope in such a stressful situation. In either case, community care services could help the couple to achieve a better quality of life. These services could include respite care, domiciliary support, aids and adaptations, and personal care assistance for Shirley.

Before any assessment could take place, it would be necessary to gain Ray’s trust in order to visit the couple. As Shirley has been assessed as having progressive dementia, it is likely that she has received services from the community mental health team. If this were the case, then it would be advisable to carry out a joint visit with Shirley’s community psychiatric nurse. The CPN may already have gained Ray’s trust and, in view of Ray’s violent outburst with the community care worker, would provide necessary back-up for the visiting social worker.

It would be important to establish why Ray feels so strongly opposed to receiving help from social services. He is quoted as saying that he feels that he has used the state enough and doesn’t want to fail again. As a child, was Ray made to feel that he had failed, by society’s attitudes towards disability? Does he feel that both he and Shirley would lose their independence if the social services department was involved?

If so, then direct payments may be a way for the couple to access services while still feeling that they were in control of their own destiny. Alternatively, Ray could have a history of violent behaviour and could be worried that social services involvement would expose the neglect or physical abuse of his wife.

Julie Heath
The service manager would have to quickly assess the level of risk to Shirley. Were Ray’s actions due to the stresses of caring for Shirley, as a consequence of his poor health, because he mistrusts social services, or has he been abusing his wife and does not want to be found out? The manager also has to support the community care worker; was the worker injured by Ray and did they need medical attention? Do the police need to be involved?

It is imperative that the manager obtains an accurate view of the situation and especially if any other agencies have any concerns about the couple. It will be essential to find out about Shirley’s health and whether any other professional has seen her recently; if so, how did she present herself? Did she appear anxious, how is she affected by dementia and is she able to make decisions and stand up for herself?

The manager will sensitively debrief the community care worker regarding all aspects of their visit and determine if it was properly conducted. Given the complexity of the situation and the evident indicators of risk – such as Shirley’s appearance and Ray’s behaviour – the case would be reallocated to a social worker or care manager who had undertaken training in investigating adult abuse. Within Derbyshire social services department the manager would invoke the protection of vulnerable adult procedures and meet a nominated police officer and jointly they would decide upon a plan for action. In this instance, the main emphasis would be upon establishing a relationship and rapport with Ray. Police intervention would be a last resort in the event that access was denied or if the social worker was felt to be at risk of violence.

Given Shirley’s medical history it would be likely that she would be known to a community psychiatric nurse and that a joint visit would be carried out. Following this visit the social worker would report back to the manager and depending upon their findings there could be a variety of outcomes, ranging from Ray accepting a package of home care support to Shirley being moved to a place of safety. The manager and police officer would then consider whether it was necessary to hold a multi-agency case conference in order to resolve outstanding issues and to determine future intervention.

User view

Why do some people feel as if social and health care needs to be rationed? There are no “fair shares” in the welfare state: it’s there to provide help if and when we need it, writes Simon Heng. Some of us will need a great deal of attention, and some of us will need very little. At present, this help is unconditional and long may it remain so.

Ray may well genuinely feel that he doesn’t deserve any more help for himself; equally, he may be genuinely angry and frightened. Even so, if he needed any justification, Ray has, with early help from the NHS, led a full and active life. He continues to contribute to society by caring for his wife. Ray has taken on his responsibilities as a citizen and is entitled to claim help without any question whatsoever. As we all know, “informal” carers contribute the equivalent of billions of pounds worth of care, with little reward or recognition.

Ray may be angry, in that he might feel that his care for his wife is being criticised. He might be angry at himself for being less capable, less able to cope than he has been up to now. He may be angry at himself for feeling ill.

He may well be frightened about his own condition. If you have had to deal with a major disabling illness, it’s quite possible that you worry about the condition returning, or getting worse, however long it has been since your condition has stabilised. It would be easy to be frightened about what would happen if he couldn’t care for his wife.

In these circumstances, it would be understandable if he felt isolated and unsupported. He may be fearful that, if he admitted that they needed help, this would mean a loss of independence, even the break-up of the relationship if his wife or he needed to move to a care home or nursing home, or even simply receive hospital treatment.

Ray may not have realised that the caring services have moved on since he last had contact with them, and that the aim is now to help people maintain their independence as long as possible. He may not have appreciated that, in looking after himself by seeking medical attention, he would be increasing the chances that they, as a couple, could stay independent.

Someone, perhaps the GP, perhaps their niece, needs to take the initiative to discuss these matters with Ray.

Simon Heng is a disabled service user.