News

Case study
The name of the service user  has been changed

SITUATION: Phoebe Harrison is 54 and uses a wheelchair. She lives alone in a small village about seven miles from the nearest town. Her ground floor flat has been adapted and she manages most tasks independently. She receives a package of care to help with household chores and to take her shopping and on trips. She is picked up by bus two days a week to attend a day centre. 

PROBLEM: Phoebe has repeatedly had cause to complain about the level of service she is receiving. She says she is deemed a low priority because she can manage her own personal care and so is frequently sent new staff and temporary staff. They are often late. Sometimes no staff at all turn up on her given days. She is also convinced that because she has complained so often, they are providing a sub-standard service as a "punishment". Phoebe has said that she wants to learn to drive so she does not have to be dependent upon anybody to get her about, and she wants the local authority to pay. They say they will not, even though Phoebe argues that if she could drive she would need less support and thus save the council money in the long term. She is also bored at the day centre and wants to do different things - especially gardening and carpentry; but the centre only offers very basic courses and Phoebe wants to excel. She overheard one worker call her "a bloody day dreamer" on the phone.

Practice Panel (Derbyshire physical disabilities team)
Julie Heath - disability service manager ; Angela Marsh - occupational therapist ; Stuart Drabble - social worker (sensory) ; Annette Whittingham - care manager ; Kathy Richardson - disability resource team, NHS

Panel responses

Julie Heath
A direct payment would enable Phoebe to take control of her support needs and manage her package of care to suit her lifestyle choices. It is a common complaint where home care is provided by mainstream services that because of the numbers of people with high-level support needs, people like Phoebe are treated as a lesser priority.

One can appreciate the tensions of home care organisers when a carer rings in sick and calls have to be covered by other staff; those service users with personal support needs will always take precedence. But this does not help Phoebe who is trying her best to be in control of her life.

Direct payments allow money to be given to the service user to enable them to purchase their own support package following an assessment of their needs. The government has set very ambitious targets regarding the take-up and promotion of direct payments for local authorities. The green paper for adult services wants to see people put at the centre of their assessment, innovative service development, and for direct payments to be extended.

Phoebe, with the support of a care manager, could discuss the options available to her. For example, here in Derbyshire the Centre for Inclusive Living assists people with the recruitment and selection of personal assistants and also administers a payroll system. Peer group support is also available.

Initially, many service users can be daunted by the prospect of becoming an employer and managing their own support staff. But with practical support and encouragement many feel they do have more choice and control over their lives. People should not be hampered by the inflexibilities of traditional ways of delivering support services.

Users of direct payments can expect a tailor-made and more responsive service because they are in control. However, there are also responsibilities to take on board. The package of support will only be as good as the quality of the staff recruited, and therefore, it is important to become "good" employers and retain carers. It will also be necessary to meet the local authority's auditing requirements, for which support is provided.

Angela Marsh
Phoebe is not asking for more services; she is just asking for services to be better tailored to her needs. She wants to do "different things" and perhaps she wants to feel more in control of her life.  

I think she is asking for an everyday routine that is just ordinary and normal. She wants the freedom and convenience of being able to drive and she wants to be able pursue her own interests.  

Phoebe needs to be encouraged and supported as she seeks information about driving and owning a car. She should be advised to consider contacting the Disabled Drivers Association to obtain information on driving instructors, vehicle adaptations and contact details for the independent assessment centres. Phoebe should also consider contacting Motability to find out if she is able to get help to fund a car, driving lessons and vehicle adaptations.

With all this information to hand Phoebe may want to think again about whether driving and running a car is really what she wants. It might be simpler for her to use wheelchair accessible taxis or think about buying a battery operated wheelchair or a mobility scooter.


But if Phoebe is still keen to own a car she should be advised to seek an assessment of her potential ability as a driver and her special needs with regard to vehicle adaptations to assist with both driving and wheelchair stowage. Some driving schools offer this assessment or it can be obtained at an independent assessment centre.   

Phoebe also wants to expand her interests and she is particularly interested in gardening and carpentry. She might start by asking if the local day centre has outreach workers that would help her to source local groups and classes. Outreach workers might also be able to go with Phoebe to the first few sessions of a new class, until she feels confident enough to go alone.  

Phoebe should also be given appropriate support to allow her to look in the local library, local papers or on the internet for details of local groups. If local groups and classes don't meet Phoebe's needs she might want to be supported to pursue her interests by making her own arrangements to visit gardens, craft fairs, exhibitions and so on.

User view
It is astonishing how many people are being failed by the system which is meant to enable them, writes Simon Heng. 

Phoebe's independence is restricted because she is not able to get herself around, her well-being is compromised because she's bored, and she lacks choice of stimulating, educational opportunities - or choice over who helps her. 

Occasionally, I experience the intrusiveness and uncertainties of agency staff. I ask myself the usual questions: Will they turn up? Will they be capable? Can I trust them? And that's even before they walk through the door. Imagine a different stranger coming into your home several times a week, sifting through your possessions, cleaning to their standards, not yours. With regular help, at least you can form a relationship and a shared understanding about your preferences. 

If the opportunities provided by a local day centre simply aren't helping Phoebe to develop, why can't her local authority help find a way of extending her skills? Surely, we have left behind the era of basket-weaving as "occupational therapy", where craftwork is actually just a way of passing the time. If this needs financing, why not use the funding ties which pays for Phoebe to attend the day centre, to pay for transport and course costs at a local college? She may have friends at the day centre - for many service users, these relationships are the bedrock of their social network - which she might risk losing if she stopped attending, but at least she could be offered the choice. 

Phoebe can't afford to pay for driving lessons because, almost certainly, she receives benefits, which barely cover the cost of living. We know that she would like a car. Perhaps it could be funded through the Motability scheme (which was set up to provide disabled people with safe, reliable and affordable cars). Motability offers scholarships for disabled people to learn how to drive. 

There is, however, another solution - as long as Phoebe feels able to cope with it. She could be offered direct payments. She could employ her own helpers, and have more control over when she uses them. Direct payments could fund her education so that she has the chance to excel. She could even use it to fund her driving lessons. 

Finally, it is astonishing that a worker called her "a bloody day dreamer". It implies that Phoebe has no right to have ambition or become more independent. If the worker wasn't challenged, or disciplined, it means that their attitude is condoned. 

Simon Heng is a disabled service user