When carers let you down

Case study

The name of the service user has been changed.

Situation: Stuart Fraser is 25 and has cerebral palsy. He is very independent and although he requires help getting up, once he is up he can manage everything on his own. He lives with his caring parents, both of whom are on low incomes. Stuart recently suffered a relapse and was admitted to hospital where he remained for 12 weeks. On being discharged his care package was set up.

Problem: Two carers from the social services in-house team are required to wash and dress Stuart who is also issued with a community alarm. For the first five weeks everything worked well and he was able to establish a rapport with his carers.

Then, however, the service started to deteriorate. Frequently, only one carer turned up and if they both arrived, it was usually more than an hour later than scheduled. One day no carers turned up, which meant that Stuart ended up wetting the bed. His mother arrived home to find Stuart in an understandably distressed state. As English is not his mother’s first language she can’t find anyone in social services to understand her. Her husband later called social services and they offered a plastic sheet to cover the bed. Normal service resumed but then deteriorated again. Stuart’s mother had no option but to give up her job, which has made things particularly difficult as his parents are still paying for the first mattress.

Panel responses

Samantha Robinson
In an ideal situation, after a lengthy period in hospital, one would hope that full discussions with the service user and his family would establish the type of service that would meet his needs. In complex cases a multi-disciplinary pre-discharge home visit should take place. This would enable an assessment of the home circumstances to identify the type of equipment and care package required.

It would appear that the assessment prior to discharge was carried out satisfactorily as the package worked well for five weeks. However, as Stuart’s mother did not have any information regarding who to contact within social services following discharge, it seems that either she was not fully involved or that an interpreter was not used as she did not understand the information she was given. If an interpreter had been involved from the very beginning, clear communication channels would have been established and some of the later problems may have been avoided. Also, before discharge, Stuart’s mother, being the main carer, should have been offered a carer’s assessment and been informed about carers’ associations.

Follow-up from hospital discharge can vary between authorities. Good practice would suggest that a hospital team, if one exists, should follow-up until the first review at six weeks. A structured transfer to a community team should take place once it is established that the care package is meeting the needs of the service user and any informal carers. In this instance it appears this procedure has not been followed as the home care manager and care manager do not appear to be aware of the breakdown in service.

Appropriate monitoring would have identified any initial problems and a review, involving all those concerned in Stuart’s care, could have been arranged thus preventing this crisis. As it appears a review has not taken place, a meeting with the family using an interpreter should be set up as soon as possible to establish exactly what support is needed and why they feel the existing arrangements have failed.

The family should be supported if they wish to use the local authority complaints procedure. Providing this support could help to rebuild relationships between the family and social services.

James Lampert
An initial meeting with Stuart, his family, and the home care provider would be required to identify all the issues. At the time of assessment Stuart should have been informed of his rights as a service user, including information about the complaints procedure. It may be helpful to arrange another occupational therapy assessment to review all transfers, with particular emphasis on bed transfers. A high-low profiling bed or equipment such as a mattress variator or bed leaver could enable independent transfers.

A simple item such as a urine bottle may help Stuart manage his own incontinence needs. Should it be established that Stuart has incontinence problems there should be a referral to the district nurse. It is unclear whether or not Stuart would benefit from physiotherapy. There could be a discussion with the GP about this. A referral to the community physiotherapist could be made for an assessment.

At the point of assessment, it is now mandatory to offer direct payments as an option for a package of care. Within our borough, for example, Stuart and his family would be offered support and financial assistance to advertise for and recruit personal assistants. A short-term home care package would be provided while the direct payment scheme was being arranged. If language or culture barriers were an issue for Stuart, employing his own staff with direct payments could lead to more appropriate carers. It also has the additional benefits of flexibility, greater choice and control. This promotes independence with emphasis on improved quality of life rather than concentrating solely on quality of service.

However, although this could provide a solution there is often adifficulty in finding carers who have the skills required to care for people with complex disabilities within the community. The situation that arose with the in-house carers could have been a reflection of the difficulties that arise in recruitment for statutory and private agencies.

Pressure of work can result in carers being given insufficient time to travel between service users. This can impact on the quality of care and affect their ability to build a relationship with the service user. Good relationships between service users, families and carers are essential in maintaining a stable and successful care.

User view

Even with all the contingency planning in the world, sometimes things will go wrong, and care arrangements will break down, writes Simon Heng. Though this may be true, the fact that the social services in-house care team failed to turn up (and didn’t even let the client or his family know that they wouldn’t be attending) is disgraceful and unprofessional. If this service had been contracted out to a private care agency, this could be considered a serious breach of contract. That this should happen frequently gives Stuart’s family cause for a formal complaint and, I would imagine, entitlement to claim the cost of the new mattress.

As someone with incontinence problems myself, I can understand Stuart and his family’s upset. Not only is there the expensive chance of a soiled and smelly bed and the health risk of skin deteriorating when in contact with urine (which is highly caustic), there is also Stuart’s embarrassment to consider. These are all reasons why a plastic sheet is simply not an acceptable solution. Try sleeping on one yourself for a night: even if it stays dry, it’s extremely uncomfortable.

Everyone over the age of three or four is meant to be able to control their bladder, but some of us don’t have the neurological control for this. One of the most liberating and helpful referrals I had in my adjustments to disability was with the local incontinence specialist. In plain, simple language, without embarrassment, she suggested practical solutions to all my incontinence problems. So I was able to see unavoidable incontinence as a practical problem with a solution, rather than a disaster.

As for Stuart’s situation, at the risk of sounding simplistic, maybe a simple solution would be a urine bottle next to the bed while he is waiting for the carers to arrive. (I’m assuming here that he has the manual dexterity to use a urine bottle unaided.)

The other major problem, of course, is the erratic provision of care. My underlying concern is that if this client is not getting consistent care, then what is happening to other people who are dependent on the social services in-house care team? Is there a problem in the management of this service?

If this service is not to be relied upon, the care purchasers need to explore, with the family, using other agencies or direct payments, so that Stuart and his family can employ people they can build up a relationship with, and trust. These may be able to provide a service more tailored to Stuart’s needs.

Simon Heng is a disabled service user.