08 Who is in charge of your patient's rehabilitation programme?
This question is addressed primarily to the full-time carers of badly disabled stroke survivors. Putting it another way:
Who is responsible in the UK for (1) putting the rehabilitation programme together and (2) ensuring it happens?
These are good questions. If nobody is directly responsible, it could explain to a large extent why rehabilitation programmes rarely exist – (this has to be a generalisation, but is based on my experience over 8 years of never having met a stroke survivor or carer who claims to have been given a written rehabilitation programme.)
‘Care’ is easier to account for. When a disabled stroke survivor is discharged home from hospital, a social worker is appointed to help set up a care routine, including appropriate changes to the home and some training for the carer, so that the lives of both patient and carer can be as comfortable and stress-free as possible within the limits imposed by the disabilities. The carer thus has a named social worker to contact if there are questions or problems to resolve concerning Care. It may not be a perfect system, but at least it is there.
‘Rehabilitation’ is different because action directed at rehabilitation is not set up primarily to assist the patient’s comfort, but is aimed at helping them recover from their several disabilities as far as is possible – a much more demanding objective. How is this objective achieved? What needs to happen is well documented in government-originated documents. When Rita had her stroke in 2008, the most authoritative document (which I discovered about a year later) was the National Stroke Strategy (NSS). This specified in considerable detail, through about 65 pages, what should happen and what variety of services were needed to address the range of disabilities that could occur. The National Clinical Guideline for Stroke was also available to sit alongside the NSS. The fifth edition of this document was published in October 2016 and contains about 120 pages of detailed recommendations concerning the treatment for stroke survivors from the time of stroke onwards. Do either of these two documents specify who, exactly, should be responsible for setting up rehabilitation programmes for survivors? Not as far as I can see.
Why should a named person be needed for this task? Because it is well known that badly disabled survivors all suffer from a different mix of disabilities that can differ widely, one person from another. Exactly what the details of a survivor’s disabilities are is determined by where, in his brain, the stroke happened. The severity of each disability depends on how bad the stroke was – how much damage was done. There is thus massive scope for variability.
Each survivor is effectively an individual rehabilitation project. A standard medical programme applied to all patients may work for a disease like chicken pox, but will not work for stroke. Each patient needs his own specific treatment for his own specific collection of disabilities. The result being that each patient needs his named project manager - which really should not be a difficult thing to provide.
Who are the involved people who might be considered for this task?
- The patient himself obviously is too ill to set up his own programme, quite apart from any other consideration.
- Nor could the full-time carer; due to lack of knowledge, too many other things to do, no authority.
- The GP might. Ours claimed not to have the specialist knowledge needed. This was a cop out in my opinion.
- A member of the patient’s family is a possibility, with the right management skills, but they would not have the authority needed.
- Of all the medical or care professionals involved with the patient, it could be assumed that many could do this, given enough experience, and with their manager’s agreement. One of them needs to be formally allocated the task, in order to have the authority needed. This did not happen for Rita.
The National Stroke Strategy and the National Clinical Guideline for Stroke are replete with detailed recommendations on what needs to be done. Neither, as far as I can see, includes a recommendation on how, exactly, the treatment will happen. What is omitted is any statement concerning who will write the rehabilitation progamme for each survivor, and who will ensure that it is implemented as planned.
Both these tasks could be carried out by experienced nurses or therapists. What is needed is a directive that every stroke survivor must have a named person whose responsibility is to write the appropriate Rehabilitation Programme, and that same person (or another who is named) has the responsibility to ensure the work is done. And they need the authority to report to a senior manager if there are unresolved problems in implementing the plan.
The apparently unforeseen difficulty with the above two documents is that they make recommendations, which can be ignored, especially when other pressures – seen as more important – arrive, as they always do, and there is no one to defend the stroke survivor’s corner. It is all quite simple really. The two documents say how important it is for the survivors to be given the appropriate treatment; so all it needs is for each to be given a named ‘Project Manager’ having the responsibility to see that the agreed programme happens. All projects that are worth doing need a project manager, whether in the NHS, industry, government, or just a hobby. No project manager results in little or no progress. And there is no reason why one project manager should not run several projects.
In the UK, between April 2008 and September 2010, around 15 medical and care staff knew Rita well and another 35 or so met her and worked with her for short periods. Each of these 50 was responsible for only a small part of Rita’s treatment or care. Effectively, they were all specialists, each in charge of a small fraction of her total needs. Not one of them picked up responsibility for her full recovery programme, nor was directed to do so. Rita never had a rehabilitation programme written for her, she never had named therapists, she certainly never had a project manager and her whole rehabilitation project in the UK (such as it was) floundered and failed. No one had responsibility for its success, not even her GP it seemed, surprisingly.
In South Africa it took a week to set up a small team consisting of a nurse and, ultimately, three named therapists who, altogether, treated Rita for 18 months by which time she was effectively fully recovered. The nurse set it going and, as far as I was concerned, acted as the Project Manager. She answered all the questions I wanted to ask and I don’t think she found this onerous. Probably she didn’t realise she was acting as the manager. The three therapists accepted responsibility for Rita’s treatment, knew what the target was and succeeded in achieving it. No doctors or other medical staff were needed; just the good quality therapy and a lot of it, as would be expected.
Can anyone tell me why so many medical and care professionals were seen to be needed in the UK, yet all their efforts failed? During the first two years of Rita’s supposed rehabilitation in the UK, the many staff who worked with her included doctors, several consultants and three neuro-psycologists. There must be reasons for this failure, and why the straight-forward therapy applied in South Africa was so successful. I make an attempt at identifying these reasons in Part 3 of Pushing the Boundaries.