Background

Suzanne is 52, and has limb-girdle muscular dystrophy. She needs assistance with most physical tasks. She uses a wheelchair and has needed assisted ventilation for the past 18 years. She lives in her own house. The help she needs to maintain her independence, to pursue her priorities and exercise her preferences is provided by a team of Personal Assistants whom she employs through direct payments.

Suzanne's support is currently funded 70% by healthcare and 30% by social care. At one time it was entirely funded by Social Services. Although it has almost always been acknowledged that her needs are a combination of health and social care needs, it was not until a new social worker became involved in her case about three years ago that the PCT began to contribute to funding. This does not mean that Suzanne herself receives anything from the PCT. Money is moved between the PCT and Social Services so that, although the funding which she receives remains unchanged, the PCT makes a 70% contribution to it.

Catalysts

Initially, Social Services organised the support she needed and employed people using an agency. However, two main changes meant that this became problematic:

• the agency found it harder and harder to get staff
• the settings on Suzanne's ventilator needed to be changed at night and in the morning. This need presented a logistical problem as the agency staff were not allowed to change ventilator settings.

The options which were discussed were essentially for Suzanne to:

• use direct payments, where she would be responsible for obtaining her own staff, and making decisions which were problematic for agencies, specifically, whether staff could or could not change her ventilator settings
• move into residential care.

Benefits

Benefits for Health and Social Services

For Social Services, Suzanne's choice of direct payments was hugely advantageous. She describes how: "I got them out of a hole … they weren't able to cover it." A social worker told Suzanne that if she had been unable to manage the direct payments option, they do not know what they would have done. Realistically, although residential care was floated as an option, this would not have been a real possibility, because there was no residential care facility that would have been appropriate for Suzanne.

Because she needs assisted ventilation, even in a residential setting Suzanne would still need one-to-one care available and therefore an extra member of staff at all times. So there would be no benefit in cost terms against the provision of support in her own home. In addition, residential care staff would not necessarily be able to change ventilator settings any more than staff in Suzanne's own home could.

The other option which might address changing ventilator settings, would be for Suzanne to live in an intensive care unit. In purely financial terms, this would be extremely expensive, and an inappropriate use of an ICU bed. In human terms, an intensive care unit is not an appropriate place for an adult who is well, but requires long-term assisted ventilation to live.

Thus, the only real option was for Suzanne to use direct payments to manage her own team of Personal Assistants.

For the same reasons, the PCT would derive no benefit from Suzanne's support being organised in any other way.  Her system is established and effective in terms of cost, workload and practicality. Thus, it was in everyone's best interests to find a method to enable the PCT to contribute to the funding without altering the way in which Suzanne managed her life.

There has never been an issue about the cost of Suzanne's direct payments, because this is the only viable option, and the cheapest.  If her own staff are sick or there is a problem with staffing, Suzanne can use Thornbury Nursing Agency to cover individual shifts. It is rare for this to happen, but it is essential for Suzanne to have some backup as she needs 24 hour support. An alternative remains that she can be admitted to the ICU if she cannot cover the shifts with her PAs. One social worker suggested that, as well as her direct payments, a fund should be set aside in a bank account in case Suzanne does need agency staff, so that she knows that she will not be left without support.

This has not been set up or needed, but it indicates that there is a commitment to ensuring that Suzanne has adequate funding.

Human benefits:

In many respects the human benefits of this arrangement derive from the fact that this was the only real option.

However, comparing this with the option of residential care, Suzanne "has my life." She is independent and lives as she chooses. She has her own house, her own car which her PAs can drive, and freedom to do what she pleases, when and how she chooses. If she were to live in residential care accommodation, there would be many restrictions on her surroundings, the possessions she would have room to keep, her privacy, and her lifestyle. Of course, she would not necessarily be able to choose the staff who help her. By living in her own home, with PAs whom she hires, Suzanne says : "I am in control of my life."

Because Suzanne decides who she hires as a PA she can choose people who she will be able to work with. As a PA is with her 24 hours a day it is important that Suzanne gets on reasonably well with them. When choosing staff, Suzanne can prioritise the skills, knowledge and attributes which are most important for her, and which will help her to live the life she wants. On a day-to0day basis, she can organise her life as she chooses, rather than it being influenced or dictated by the agendas of other people or organisations.

Although Suzanne uses direct payments, she did consider using a Private Healthcare Company who would organise her support for her. However, what was offered was not what Suzanne wants or needs. This approach would have been considerably less flexible, and Suzanne would have had much less control over her life. The regulations of the company, and their protocols and procedures would have meant that, instead of being in control of her own life, a third party would organise Suzanne's life to a great extent. Their values, not Suzanne's, would dominate. The company's regulations and decisions on risk management, not Suzanne's own choices, would determine what she was able to do. By hiring her own PAs, Suzanne can, like any other person, decide what the limits of her safety are and what risks she wishes to take.  The company's approach tended to focus on her medical and technical needs, for example, managing her ventilation, rather than on her as a person. 

A further advantage of direct payments is that the money is paid directly to those who provide Suzanne with support. Although staff in agencies or companies are rarely paid significantly more than Suzanne's PAs (excepting perhaps Thornbury, who have to get trained staff) there are fewer overheads. Less money is spent overall, and a greater proportion goes directly to those providing support.

The main challenge for Suzanne is finding adequate numbers of appropriate staff to be her PAs.

Mechanisms for moving money

Section 27 is used to transfer money from Health to Social Services.

Summary

Suzanne needs a very high level of physical support - arguably almost the highest possible level - but manages this herself by using funding from the PCT and Social Services to directly purchase her own support. Her story illustrates how this has enabled her to remain independent, and to live her own life. This is the most cost effective and possibly the only realistic way in which her support could be managed. It also means that Suzanne can live her life as she chooses, within the physical limitations which her disease imposes on her. She can make her own decisions regarding lifestyle, risk, and, within the limits of available applicants for PA work, the individuals who accompany her almost constantly.

Last Updated : 04 February 2011. Page Author: Administrator.

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