CASE STUDY:  The name of the service user has been changed

SITUATION: William Nicholson, 47, is paralysed from the neck down. He spent the first 30 years of his life in "special" children's homes and then residential care for disabled people. He moved in with his future wife, Lorraine, also physically disabled and whom he met while she had respite care at the same care home. For the past five years they have lived together in their own home that has been "kitted out with cutting edge, state-of-the-art gear". A carer calls twice a day to help out.

PROBLEM: Two months ago, out of the blue, Lorraine suffered a heart attack and died instantly. Emotionally and practically this turned William's life upside down. He had been largely dependent on Lorraine who, despite her own disability, was able to assist the carer with lifting and moving him - he is 23 stone. The social services department is not convinced in the long term that without Lorraine he is able to sustain his life in the community. An immediate problem has arisen over his moving and handling. The department wants to fit tracking devices for a hoist and use a minimum of two carers at each visit (and expect him to pay half the costs). He refuses to have the tracks fitted and does not want "two people traipsing through his home." The department has withdrawn services and William is surviving thanks to neighbours and friends outraged at the department's stance.

Panel Respones

Julie Heath

This is a very unsatisfactory situation and William is currently at risk due to the withdrawal of services by the department. Obviously, social services have to consider risks to the health and safety of staff providing personal support but a variety of legislation also governs the duty of welfare towards an individual underpinned by the National Assistance Act 1948.

William has had a very difficult time recently and will be grieving for Lorraine; he may need bereavement counselling at some point soon. As his life has changed so dramatically, and his main carer has died, he should have his needs reassessed. In Derbyshire, within the disability division, a care manager would be allocated to review his situation and would offer William the opportunity to participate in an outcomes-focused assessment.

Outcomes are results, goals and achievements. They are determined by the person and facilitated by the worker (or "care navigator" as referred to inÊthe adult care green paper). This assessment would consider all aspects of a person's life including emotional well-being.

This approach to assessment empowers the individual to make decisions and to take responsibility for important areas in their life. William will understandably be feeling anxious about remaining within the community especially in view of his experiences during his childhood.

He needs reassurance from his care manager that the aim of the intervention is to enable him to continue living as independently as possible.

William may be an ideal candidate for direct payments as this would help to increase his feeling of autonomy and control that he has over his life. However, he would have to accept the responsibility of being a "good employer" and to look after the health and safety of his staff. He may also be eligible for financial assistance from the Independent Living Fund which could have a considerable impact on his personal resources.

William may benefitÊfrom peer group support which, for us, would be available from the Derbyshire Coalition for Inclusive Living (DCIL); this would be particularly useful during the assessment and for providing practical help with setting up a direct payment.

Angela Marsh

As an occupational therapist I would attempt to involve William thoroughly in every aspect of my specialist assessment. It would be very important to work jointly with the allocated care manager, picking up on all of the sensitivities involved, and to engage in theÊoutcomes-focused assessment. The case study says that "the department wants to fit a tracking device". This sounds heavy-handed to me and not at all conducive to working in partnership with William.

William needs to be given sufficient information about the different types of tracking hoist available on the market; he could be given literature, meet company representatives or even try a hoist at a suitable venue.

Consideration would be given as to the suitability of a mobile hoist and if this was not feasible to explain why.

It is important to properly explain good moving and handling practices and the consequences of not having these in place. If we listen to a person's requirements and explain to them the need to keep staff safe it is usually possible to negotiate a safe personal handling procedure that is acceptable to all concerned.

William is very unlikely to feel safe being physically lifted and with nothing he can do to help himself, he will probably find being lifted a frightening experience. He may be reassured by talking to others who are in a similar position to himself (again a possible role for the local equivalent of DCIL). He would also feel better if he felt confident about the abilities and skills of his carers; this may be helped by explaining the mandatory training received by home care staff.

Many individuals experience anxiety about being hoisted but by talking through his fears this will give him an opportunity to help alleviate them. The workers involved in assessing William need to listen to the fears he may have, show empathy and be flexible in their approach.

Depending upon local practices the installation of a ceiling-mounted tracking hoist may be provided through applying for a disabled facilities grant. If he is assessed as being able to contribute then William would be asked to pay towards the cost of his hoist.ÊHowever, if William lived in Derbyshire his home care services would be provided free of charge.

USER VIEW:

As someone who has a similar level of disability, I imagine that William's response to change in his life, particularly his daily routine, might be similar to mine, writes Simon Heng.

If you don't have a disability, imagine being forced to alter your routine intimate activities, like brushing your teeth, putting in contact lenses or combing your hair. Or imagine someone else doing this for you, under your instruction, and being told by them that they are going to do it in a different way. Permanently. 

William will have developed his personal care routines over many years, with his carers, to be as comfortable as possible for him, and to ensure his physical health. Any change to the routines will probably be regarded with suspicion, not only because it can feel like an invasion of one's  personal rights, but also because it might lead to health problems. Personally, I would be worried if someone suggested different moving and  handling techniques, because when I have allowed other people to use other methods, I have usually been uncomfortable and I have often ended up  with injuries. 

William is also grieving over the loss of his partner, as well as his routine. His whole life has changed, yet emotionally he may not be at the stage where he can accept those changes. Putting in a tracking hoist involves major structural changes to his home - perhaps a permanent reminder of his losses. Involving two carers, rather than one, might feel like too much of a change, as well as an invasion of privacy. 

But William needs to recognise that paid carers have to follow safe moving and handling guidelines, and to use suitable equipment. It's easy to be self-centred at times of stress but one of the things that I have learned to respect is the welfare of my carers. This doesn't mean that one has to accept passively a particular technique, but it does mean that one has to negotiate between what's comfortable for yourself and what's safe for yourself and other people. 

It's great that William's friends and neighbours are so concerned about his welfare that they are prepared to be involved in taking care of him. Maybe they should be involved in his care planning. If they were helped to understand why he needs a new care routine, and were persuaded that these changes were positive, then maybe it would help William to be actively involved in negotiating those changes. 

Simon Heng is physically disabled, works on service user issues and writes for Community Care.