07 Can carers provide useful rehabilitation therapy?
The carers referred to here are paid carers, well trained in caring, but with no formal training in therapy provision.
The answer all depends on how well the system is organised. There are several advantages in having paid carers provide most of the rehabilitation therapy, not the least of the reasons being lower costs for treatment. (But for several good reasons it is important not to rely on a main family carer for therapy provision). Another advantage relates to the usual limited availability of trained therapists – there are not enough to go round. Therapists need to be spread thinly so that a small number of well-off patients do not corner the market for therapists.
Our experience was that the system used in our region of the UK was hopelessly inadequate for the level of disability that Rita suffered, whereas the system used in South Africa worked so well that most of the therapy given to Rita over 18 months was actually provided by carers. Why should one system work well while the other was effectively useless – what were the differences?
Look at the good system first, how was Rita treated in South Africa? The organisation that provided carers for Rita in Fish Hoek, South Africa (see chapter 38 in Pushing the Boundaries) met the following specification:
- Carers were provided for 4 hours each morning, 7 days a week.
- The number of regular carers we saw in any 3-month period was three, only rarely did we see a ‘new’ carer due to none of the usual three being available.
- The carers were well trained for caring, but none had formal training in therapy provision.
- They were given written instructions, designed for the needs of each patient.
- A regular check was made by visits from management that these instructions were being adhered to.
The day began at 07.30 with the carer arriving to shower and dress Rita, after which we all had breakfast together. Because the carer was with us for four hours there was no rush, everything was done in a relaxed fashion. Each therapist was seen once a week and sessions were mostly held during the morning, so the carers were able to watch how Rita was taught the various exercises by the professional therapists. At the end of each session the therapist wrote out a list of around six exercises that the carer could give to Rita for the next six days. Occasionally neither the carer nor I could get Rita to complete one of the exercises on the list, we hadn’t the expertise, but these minor problems were corrected at the start of the next session by the therapist asking “Any difficulties?” “Yes, we couldn’t get Rita to complete exercise 4”. The carers were regularly supervised in this way and were well able to provide therapy for Rita, and a lot of it.
In addition to these exercises, the carers would take Rita for a walk every day, help her with jigsaw puzzles and crosswords, play fun board and card games, plus memory games, with her and supervise Rita re-learning the Activities of Daily Living (ADLs). To begin with these were simple activities such as making drinks, preparing vegetables, dusting and washing up. As Rita improved she took on more demanding work like vacuuming, bed-making, cooking simple food and ironing. Later, the carers played table tennis with Rita for around 20 minutes daily. Some mornings I would drive them into Fish Hoek where they could walk along the sea front, perhaps do a little shopping and I would meet them later in a café. It was not long before 3 hours every day were effectively taken up with some form of therapy, and by then it was clear that Rita did have the innate ability and determination to get better. She was making steady progress towards recovery.
The carers were all highly responsible and very caring black ladies. I had no worries about leaving Rita in their hands for two hours or more while I went off on my own to do something else. This gave me valuable respite. It was quickly obvious that this excellent system was ideal for Rita, as well as for me. Rita enjoyed the company of the carers (a change from my company all the time!) and blossomed.
So what went wrong in the UK? What was wrong with the set-up there that resulted in failure? While Rita was still in hospital I had been told verbally that there would be “lots of help” available when she was discharged home. In practice, the only therapy programme on offer was a “Re-enablement Programme” operated by the local Social Services. This consisted of a carer coming in each morning to shower and dress Rita. She (or another) would then return three times during the day for up to 15 minutes each time to help Rita with Activities of Daily Living. The carers were not therapists and had no training in providing what was effectively a mixture of physiotherapy and occupational therapy to someone with Rita’s disabilities. Nor did they receive any supervision in performing this task, so far as I could tell.
I could see that this limited programme might help someone who had suffered only a mild stroke, but it was totally inadequate to meet Rita’s needs. It was also a ‘standard’ programme, the same for every patient. I didn’t know it at that time, but one of the essential requirements for treating serious disability is that the programme should be designed to meet the specific needs of each patient. Additionally, this programme lasted for a maximum of six weeks. Even if it had worked (which, for Rita and with hindsight, it had no chance of doing) six weeks was far too short a time to provide any effective benefit.
After that, there was no significant therapy offered by the NHS until our Member of Parliament persuaded the then Primary Care Trust (PCT) to give Rita three months in a residential rehabilitation clinic from June to September nearly a year later. She made good progress while living at the clinic, but this was lost again because, although the clinic therapists had made it clear that regular therapy must then continue to build on the progress Rita had made, not one session of therapy was made available from the NHS during the succeeding nine months.
The rehabilitation programme set up in South Africa - more than a year later - quickly showed that Rita always had the innate ability to recover. With hindsight, it was no surprise that this ability was not seen by UK health and care professionals during the inadequate treatment on offer in our region of the country.
Once we were in Fish Hoek it quickly became obvious to me that Rita’s carers could provide a good standard of therapy, provided that: (1) They were responsible ladies and well-trained at caring. (2) Continuity was maintained by severely restricting the number of carers who worked with Rita so they all became familiar with her problems. And (3) that the therapists supervised the carers regularly, weekly or bi-weekly. Given these conditions, carers are well able to provide very valuable support in a therapy situation.